Thumb in Mouth

a post about me

2012-02-02T19:57:00.000-08:00

There are 2 parts to this post. The first deals with girlie issues I've been having, so if you don't want to read about those skip down to the bold part that says, "90 day weight loss challenge" and start there! You have been warned!

For the last 8 - 9 months I have been having awful, horrible, yucky painful menstrual cycles. I was cramping like crazy and the cramping would start 3 days before I would even start my cycle, and then I was literally taken out for 2-3 days when I did start. Like I was taking vicodin, left over from the D&C, and was still in a great deal of pain and hardly able to function. I knew what it was, because I've been there before and knew the only way to fix it was surgery. Endometriosis is something I had surgery for back in 2006 and these same symptoms got much better after that.

There are basically 3 ways to combat it.
1 - birth control. Believe me, I don't need any extra hormones floating around in me! I have been on birth control once in my life, for the same symptoms, when I was 19. I took it for 2 months and said never again. It was awful. Really, I was serious when I said never again!
2 - getting pregnant. Well, I did that not long ago and am not ready to go down that road again. A, I'm terrified of going through the same thing again, and B, I have enough going on with the first baby and I don't want to gain another once at this point and pregnancy is not the way to lose weight.
3 - surgery. Diagnostic Laparoscopy is the only way to know for sure that it is endometriosis and they simply lazer it off while they are in there.

So I went with option #3. The doctor said that this is actually pretty common after a late miscarriage. He said that normally pregnancy and breast feeding calm down endometriosis but if you have a full trimester of pregnancy hormones and then don't get the late pregnancy hormones and the break from your period during breast feeding, it can actually make things much worse. Yet another shitty side effect to losing a baby.

Anyways, I went in on the 12th of January (of course Jack was up all night on the 10th puking his guts up but seemed better by Thursday even though he still wasn't eating) and let me tell you, having that surgery 6 years ago while on oxycontin was MUCH easier. Last time I threw Jonathan a surprise birthday party the next day. This time I was calling the dr's office for stronger pain meds the next day. Not to mention Jack threw up again. Jonathan was awesome and slept with Jack for several days because I think I spent the first 5 days in bed. I couldn't sit up, was puking from either pain meds or the tummy bug Jack had, and it hurt to even move. I'm really glad it's over with and I do not want to go through that again any time soon.

It was a rough recovery, to say the least. I am actually still a little sore even though it's been 3 weeks and they told me recovery was 3-5 days. The good news is that things seem to be a bit better and the doctor said that he thinks this is the last time I will have to deal with this. He was trying to say that I'm getting old without actually saying it.

So, on to the next thing...

90 Day Weight Loss Challenge

The gym I go to is having a 90 day weight loss challenge. It's biggest loser style, so the person with the highest % of weight loss wins. It's a nation wide competition and here are the prizes:

1st place in both male and female categories:
* $5,000 cash
* 1 year gym membership
* 4 day, 3 night trip for 2 to California, including air fair, hotel, and spa.

1st place at the gym location is $250 to use on training.

For those of you who know me, I might be slightly competitive.

I go this Sunday to weigh in and it all ends on May 5th. My basic goals:

1 - NO SUGAR! None. It's only 3 months.
2 - No processed foods. This one should be easier than the no sugar one as we don't eat many processed foods anyways.
3 - No alcohol. Okay, if I crack on any of them, this will be it. I don't drink a ton, but I do drink wine a few evening a week. It helps to unwind.
4 - Only 1 cup of coffee a day. Again, this is going to be a hard one. Especially if Jack doesn't stop waking up for the day between 3 & 5:30.
5 - I'm going to basically eat what Jack does. Lots of protein and veggies, low carb, no gluten, etc. I'm not thrilled with it, but it's basically how we cook here and I am unwilling to go back to making different food for everyone in this house. So we are going to be all healthy and shit. This does mean no cake on Jack's birthday, but I can make him a muffin and I can have one too.

Anyways, I will let ya'll know how it goes. I suspect the first few days are going to be tough, and I'm going to be super sore for the first few weeks, but if I power through it will get better pretty quick.

dusting ourselves off

2012-01-28T12:40:00.000-08:00

It's been a while since I've written a post, and not for lack of things to post about, but simply for lack of being able to put things in perspective and sit down long enough to post.

We learned a long time ago that there will likely always be something around the corner, medically, with Jack. That is just the nature of TSC and after the first couple of blows you take, you learn to just expect something at some point. It has to be monitored and scanned and managed all the time. We had very high hopes that brain surgery would put us in a situation that we only had to monitor the tumors. Only tumors. Even that sounds so un-fair. We knew that the possibility of seizures coming back was there. And in all honesty, I was expecting it to happen in a few years. But even a few years of seizure freedom would have been worth it. I was not expecting it to happen 42 days after surgery and before he was even fully recovered. That was a tough reality to deal with.

When I first saw the seizures, I saw 4 in only a few hours. He had been sick though and what I was seeing could simply have been from stomach cramps. He also pooped 18 times that day. I kept trying to look at his eyes because that is how I can see if he's seizing but he would put his head on my shoulder and just tense up for a few seconds, then be fine. I remember telling Jonathan about it and both of us being concerned, but he was sick with his first ever tummy bug so we figured we would wait and see. Then the next day we were at the mall (don't worry, the doctor said that he wasn't contagious) and he was riding the little carousel thing that you stick a dollar in and 3 kids can ride. He looked at me, said, "MAMA" in a very scared voice and reached for me. I knew by his eyes that he was having a seizures and there was simply no doubt about it. I scooped him up and held him, he stiffened up and was twitching too. The lady next to me asked what was wrong and I said he was having a seizure. She then asked if she could give him some candy. (I could write a whole post just on that!) But I told her no and walked away.

Jack got over his tummy bug, but continued to have a few seizures a week. We gave up a lot for that surgery, a lot of Jack's independence and care-free attitude, and a lot of sleep too. We suddenly had a toddler who wouldn't let us leave the room to pee, much less leave the house without him. Thankfully that has changed and he is (mostly) okay with both of those things now. He used to never want to sleep in our bed and now that is the only place he wants to sleep. He was in our bed with us for at least 6 weeks after surgery and now he goes to bed in his bed but moves to our bed at some point in the night.

He still has quite a bit of anxiety so leaving him to cry would not be a good idea at all, and after all he has been through I don't have the heart to do that either. He has slept through the night in his room once since surgery. ONE TIME. Before he would wake up several times but put himself back to sleep, now he wakes up screaming bloody murder. I actually think he starts screaming before he even fully wakes up because sometimes by the time we get to his room he is back to sleep. He does fine with us sitting next to him in the rocker, but we don't want to sit there from 2:30 - 5 am. We are starting to wonder if we ever have another baby if we are going to have to buy another rocker because the 1st child still needs his. Anyways, we bring him to our bed with us some time in the night so that we can at least all lay down. A few days ago he decided he wanted to be awake at 4 am and that is when I started a new rule. No getting out of bed until 6 am. He can lay there and scream if he wants, next to me of course, so it's just a glorified tantrum, but we aren't getting out of bed until 6. I refuse. Both Jonathan and I are a bit tired of getting kicked and smacked in our sleep, but it's really cute when he wakes us up by giving kisses. He also likes snuggle but he calls it "huggles" which is super cute.

So yeah, we are exhausted and we really don't see an end in sight to this. Sometimes I can talk him back to sleep over the monitor (there is a button I can press and he can hear what is going on when it is pressed) but he still ends up in our bed at some point. I don't mind co-sleeping, but yesterday morning I woke up by being kicked in the nose and there simply isn't enough coffee in the world to make up for that. People with neuro issues are notorious for not sleeping well, especially people with epilepsy. So it looks like this is just kind of the way things are going to go. I will say though that Jonathan has been the best husband ever and he is usually the one to go and get him. He deals better with less sleep than I do and he has been a rock star daddy when it comes to dealing with this.

Anyways, back to the seizures: we went in and saw the neuro and the surgeon. From what we were describing about how the seizures looked the neuro thinks they are coming from the area of his brain that deals with fear, which would explain why he get scared as they are coming on. He said that during the mapping (when they had the EEG leads on the surface of his brain) the seizures were starting in the tuber that was there, which was clearly damaged brain tissue, and moving to this area behind it that deals with fear, which was clearly healthy tissue. In theory, you take out the damaged tissues and the healthy tissue is fine. Kind of explains why he's afraid of everything now though, because they cut right next to that area. Poor baby!

So they did a 48 hour EEG to see where they were coming from. (And let me just add that he didn't cry hardly at all while being hooked up, thanks to popcorn! I was so impressed with how well he did!)

The doc did not talk at all like these were just left over from surgery, though we didn't ask that specific question either. I do know that most re-lapses happen within the first 6 months. The EEG came back completely normal. The bad news about that is that we have no clues as to what is going on. Are they coming from the area that deals with fear suggesting that they missed a spot or are they coming from another tuber? We have no idea. What kind of seizures are they? Also, no clue and know what kind they are may direct us towards or away some meds. The doc said we would try meds before "looking at more drastic measures." I basically told him that we are not going through surgery again any time soon. The good news is that it was the FIRST normal EEG he has ever had. That it in self is a miracle. He always had these spikes going on, even when he wasn't having seizures. It's the static that was there and probably a big part of what was slowing down his development. So for that to be gone means his EEG is only abnormal when he is seizing, which is awesome news.

And speaking of Jack's development, it is skyrocketing. I think it was going at a quicker pace before the seizures came back, but he is still taking off and it is such a joy to watch. His little personality is also coming out and the boy is just a ham. It's hysterical.

Yesterday we had a conversation that went like this:
Jack: "kitchen"
because he wanted to go in the kitchen and play with his trains in there.
me: In an attempt to get him to say two words together I point to my mouth, "in kitchen"
Jack: points to his mouth "KITCHEN" and then runs to the gate and says "in"

Stinker!!!

And he is very much not a baby anymore. I think I asked the doctor if they took that out too while they were in there. The thing about having a special needs kid is that all of those stages that you have to get through as a parent, the ones where you tell yourself that it's a stage and it will past, last so much longer. But the baby phase for us is now totally over for now (with the exception of wanting to be rocked still) and there is no doubt that we have a toddler.

We correct how he says things often in an attempt for him to become more understandable. One of the things he has a hard time with is the "s" sound. So we were saying "ssssssssss, snake" just to get him to make the sound. Now any time we try to correct him in any way he says "sssssssss, ake". So I could be encouraging him to say 'potty' instead of 'paw-paw' and he says "ssssss, ake". Goofy kid!

So surgery was not unsuccessful. I can't really say it was completely successful either, but it is not something that we regret doing. Jack is slowly becoming more active again and even occasionally goes down a slide now at the park, something that he was terrified of not long ago. He is also making progress in swimming again, which again was something that freaked him out not long ago. We just want him to be able to enjoy things again, and he is slowly getting there.

One thing that he totally enjoys is eating. Man, the kid can eat. He may not sleep worth a damn but at least I know that I don't ever have to worry about him getting enough. Eggs, bacon, nuts, and strawberries are his go-to foods.

We have another appointment in a few months with the neuro, but for the time being we are leaving things as is. He is having anywhere from 4 seizures a week and he just went his longest stretch without one which was 2 weeks, so we will continue to track them and in the mean time, just enjoy life as much as possible. He really is the cutest kid ever and I love seeing him grow and play.

I hope you can follow my rambling thoughts in this post. I'm not sure as I'm a bit all over the map right now. A post about me and what's been going on is soon to follow.

So long 2011

2012-01-01T00:49:00.000-08:00

Don't let the door hit you in the ass on the way out!

For us, 2011 had some awful times. The big ones that stand out are that we lost a baby that is still very much missed and Jack's only semi-successful brain surgery.

We had one glorious month of seizure freedom, but that was it. I was hoping for a couple of years at least. Even just 2 years without them would have been wonderful. I know that another tuber is likely to become active, I just didn't expect to see them return so soon. It was, and is, crushing. No way around it. We're already back into the meds, EEG's, and doctor's calls. (More on all of that later.)

Looking back though, I can't say that 2011 wasn't a bad year. It has had it suckiness, but overall we are all still okay. Jack is awesome and sweet and amazing. I'm still having female issues related to losing the baby and we are just praying that they can be worked out right now. Jonathan and I are still married, and if we could make it through the stress of a miscarriage and brain surgery on our boy, I think we can make it through just about anything. And we have people who love us and support us.

In 2012 I plan to cherish every happy moment I get with my family. The simple joys of having meals together, all 3 of us snuggling in our bed together, and every new word and developmental inchstone that Jack accomplishes. The huge advantage of having a child with delays or special needs is the little things that come naturally to most are worked for and cherished so much.

I also plan to lose about 50 pounds so I can kick some ass.

New features

2011-11-18T10:05:00.001-08:00

There are some new tabs at the top of the blog! I'm still working on some of them, like I want to add a video of me making a keto recipe, but that will come in time. There is also info about Jack's special needs trust and if you are new to the blog you should read they "Jack's story" tab.

Feel free to leave a comment on this post to make suggestions!

Poor Sick Monkey! (and TSC camp)

2011-11-18T07:30:00.001-08:00

We went to TSC camp the first weekend in November and Jack got sick there. Saturday morning he threw up his dinner from the previous night by gagging on one of his supplyments. We didn't think too much of it and have been surprised that he even willingly takes the supplyment because of how nasty it smells so we passed it off as that.

We had a good time that day. Jack played a lot. Here are a few pictures. (And a few were stolen from a friends facebook page :-)

We are on the far right, sitting down.

Jack loved watching the archery, so we stayed there for a while. And my mom decided to make a bet that whomever hit a card (they had playing cards pinned to the target) would get dinner cooked for them. I hit 2 so she owes me dinner!

He didn't eat breakfast well though and refused lunch. I got him down for a nap and then Jonathan and I went to the parent meeting. About 1/2 way through the meeting I got a text from Ron (my mom's boyfriend) that said "Jack is throwing up, we need you". So of course I ran back to our cabin. By the time I got there they had him cleaned off and the laundry in the washer. We gave him a bath in the sink and after you could tell that he had a fever. I called the on-call doc at our pedi's office because I wasn't sure where in the camp his neurologist was, and this was clearly not a neuro issue anyways. He had some other strange things going on but our first concern was that he might have a blockage somewhere because of how the food was coming back up in whole chunks. Thankfully his belly was soft and he was acting mostly normal. But she still wanted us to keep a very close eye on him. We did go find his neurologist and his nurse, who were all there, and once we talked we all decided it was best if we packed up and headed home.

We didn't want to leave camp early because it's something that we look forward to every year, but we didn't want to get anyone else sick and if Jonathan and I were going to get sick, being at home would be much easier! Plus if we ended up having to take Jack somewhere we wouldn't have wanted a 3 hour drive to get back to our local hospital. His fever did spike in the middle of the night, he didn't eat for 2 days (and if you aren't on keto, it's not as big a deal, but I had to syringe apple juice into him so that he didn't have to go to the hospital for an IV with some sugars because the body does need SOME carbs) then he had diarrhea for a week.

I was told that he wasn't really contagious and as long as we washed our hands he would be fine, so one day last week I took him to the mall to get out of the house. We rode the train, which he loves, and saw that Santa was there already. Jack ran as fast as his little legs would let him to Santa. It was really cute. We chatted with him for a bit because no one else was there and we gave him some Seize Hope bracelets which he still uses to hold his gloves on.

While we were there Jack did this strange thing where his eyes would get really big and he would go stiff for about 10 seconds. Of course my first though was that it was a seizure and it really worried me. But we decided to chalk it up to stomach cramps. It happened 4 times that day and one the next. He got better though and then everything seemed fine.

Of course now he has a cough and a runny nose. Blah! I'm not a huge fan of this time of year because of this. For most kids a runny nose isn't a big deal but previously, Jack being sick was big seizure trigger for him. He would always have more seizure when he was sick. Then yesterday I had him at the mall again and he was riding this tiny carousel and I KNOW that he had a seizure. There is no doubt that it was and it took everything in my not to burst into tear right there. He knew it was happening and he was scared. It was pretty short, only about 30 seconds, but it was still probably the most crushing one. It doesn't mean that the surgery didn't work. They give 6 months for the brain to heal from surgery before they really start counting, but they still ask if he's having seizures and it is not at all a good sign. Needless to say I had a few drinks last night.

Freedom in Food

2011-11-18T07:06:00.001-08:00

We have been floundering a bit to figure out this new Modified Atkins Diet (MAD for short). The nutritionist has been slightly helpful but the biggest part of it is simply logistics. We have to make sure we always have food in the fridge that we can eat (it's extremely difficult for me to cook when I'm the only one home with him because he still wants to be very close to me), and also at least a snack in my bag. I have discovered some great nut packets that only have 3g of carbs that I can stick in there for emergency situations.

On keto, Jack was getting about 12g of carbs a day. Now on MAD he can have 20-25 a day! That is a huge difference. We also no longer have to restrict his protein intake so he can have as much as he wants. The other night he kept saying "beef" for the pot of stew I made! I've also done fried chicken and made peanut butter cups. All of the recipes are modified, of course, but my keto experience has helped in the creating of yummy low-carb food.

Jonathan and I are also following a low carb diet now too. We want to lose some weight and get in shape so I have re-joined the gym and actually have a meeting with a personal trainer this afternoon. I only need about 8 more cups of coffee before I'm ready because Jack woke up at 4:45. Anyways, Jonathan and I now don't eat anything in front of Jack that he can't have. With the acceptation of coffee that is. Jonathan usually doesn't leave for work until 8 so we all sit down to breakfast together. Usually it's eggs and sausage or bacon with either acorn squash or strawberries. Jack just gets extra butter and cream in his eggs. But on occasion, if it is requested by the little man, I will make something like waffles. I have an apple waffle recipe that has just over 5g of carbs and is made of ground nuts, egg, and a few other things. It's very good!

I have weighed out most of his carbs for the last week, and there is just no way he would eat the volume of 5 carbs of veggies in one meal. It's huge compared to what he was getting. On keto we counted every 10th of a gram of carbs, so the carbs in eggs counted, the carbs in avocado, in sour cream, in heavy cream, in EVERYTHING! Now, I count his veggies at up to 5g a meal, which I know he isn't eating that much, and then the side of avocado with oil I don't count. If I give him a cream soda (heavy cream, sparkling water and flavored stevia) then I make sure he doesn't get too many carbs in his veggies, and I count the carbs from nuts, but the freedom we have found in playing with his meals is incredible! And sometimes a bit overwhelming.

We are trying to stick to eating 4 times a day because it has been working for us. That was all he was allowed to eat on keto but as long as he eats well, it works fine now too. Doing this I know that I can plan 5g of carbs for every meal (making 20g a day) and then I leave the other 5g as wiggle room for things like cream, avocado, etc. and extra nuts or cheese between meals if he needs another snack.

As you can see by my rambling, there is a lot of thinking going on over here about his food!

But I will tell you this, it is awesome to all be able to sit down at the table and eat together. To let him try things from our plate, which of course he would prefer to his plate even though it's the same thing. To be able to let him mostly feed himself! We now have to take his shirt off before he eats but he gets so excited when he gets something on his fork or spoon and has to show us before he eats it. Then he claps for himself! We no longer have to scrape the bowls with a spatula, or make sure he finishes every bite!!!! I can not tell you the stress that has gone away from that alone! He also doesn't have to eat off the floor anymore, but he still does on occasion. We are having to re-train him to know that he doesn't have to do that anymore. The dogs are very happy with the new situation too.

And we can finally go out to eat with him! We celebrated with a big dinner at a local steak house with family and friends. Jack was very excited to see his cousin Grace and then not so happy when she was shy when she first got there. So he threw his fork across the table at her but thankfully didn't hit her. Did I mention that he's very 2 now? But he ate all kinds of things and tasted lots of new tastes. He will try anything that we offer but he often spits it out after we put it in his mouth. I think we took him out every day for the first 3 days. I try to take either cream soda or avocado with us as a side of fat and then we just order protein and veggies. We have to be careful about hidden carbs so we are underestimating I think, but I would rather underestimate than go over.

But the moral is that we all really like the new diet. I am so excited that he gets to eat Thanksgiving dinner with us. I think I'm even going to make some of his special cookies to share with everyone. We were at a gathering the other day and his cousin really enjoyed feeding him cheese. We are going to have to watch that one though because that night he had awful stomach cramps for about 3 hours. I was worried that it might be kidney stones for a bit (another common side effect of keto) so we want to make sure that doesn't happen again. Plus cheese does have some carbs and he would eat a whole block if we let him.

As we experiment more and come up with new things I will post some recipes and pictures. But for now, here is the fried chicken:

I took organic chicken breast and dipped it in egg. Then the breading is equal parts of almond flour and parmesan cheese. I then fried it in coconut oil, which is MUCH healthier than vegetable oil. Super yummy!

slow and steady progress

2011-10-15T20:15:00.000-07:00

It's like two steps forward and one step back around here. Jack is definitely making progress. I'm still not sure how I survived that first week after surgery, I guess just reminding myself that he won't remember all of this, but the whole thing was ugly and something that no parent should have to go through. And no child for that matter.

He is finally playing some instead of just sitting on my lap and screaming. He is still very attached to me and Jonathan, but does okay now when Jonathan leaves for work. I even got to go out to our Epilepsy Support group a few nights ago. He cried when I left, but did okay and even went to bed without me.

He is still sleeping in the bed with us but we are thinking about trying to transfer him back to his own bed next weekend. We aren't getting much sleep.

Today was a rough afternoon. We weren't sure what was wrong, but guessed at pain by the way he was throwing himself around and screaming bloody murder. We gave him pain meds and he turned into his normal happy self. The doc said that he wouldn't need pain meds anymore, but he doesn't know Jack like I do. Hopefully we will be done with it soon though, he went 2 days without anything at all. Slow and steady progress!

The big news that we got at the follow-up appointment is that we will start weaning the diet in 2 weeks! TWO WEEKS! We though that it would be 3 months, so the 1st of the year, before we would start this.

We haven't seen anything that we know is a seizure, though we have seen some suspicious movements, but the doctors think it's just from the surgery. But I haven't seen it in over a week, so all is good on the seizure front.

And FYI, putting a child who is on steroids on a calorie restricted diet is just mean. The poor baby is constantly crying for food. I've even increased his calorie intake and he is still always asking to eat. The sweet guy wanted broccoli and eggs and avocado for dinner so that is what he got, but he cried for the 30 minutes that it took to calculate everything out and get it cooked. And yes, you read that right, he actually asked for specific foods! He has been talking up a storm, some of which we still can't understand, but he is clearly making progress already.

But back to the diet thing, this means that he can actually eat Thanksgiving dinner with us! We will have to make a few low-carb dishes, but it will be so much easier! When the doctor told us that and left the room, Jonathan and I both sat there and cried a little. For us to be able to eat the same dinner as a family is a huge deal. Something we have dreamed about, but has never happened. We can go out to eat and order off the menu. He can have as much of the things that he loves most, like salmon or steak and avocado, as he wants. We still can't give him cookies, or cake, or junk food, but he doesn't need that stuff anyways. And neither do we for that matter.

I find myself a little overwhelmed, given that I have done nothing but keto for him for 19 months. I have been emailing with the dietitian and to be honest, I'm not even sure how to get that many carbs into his meals. It sounds crazy, I know, but we are planning on continuing to do the gluten-free thing and it seems like it is either one extreme or the other. I'm sure I will find a balance in there somewhere, it's just going to take so adjusting to.

This is a keto meal. There is a ton of butter and heavy cream in the eggs and then about 1 tbsp of apple sauce for a small amount of carbs. He loves strawberries so that is where he can get a few and I of course have some keto cookies that I will continue to make for him but it is certainly going to take some getting used to measuring his veggies out in a cup instead of on a scale.

Digging Deep

2011-10-09T20:44:00.000-07:00

First, here are a few pictures from the hospital. I don't think much of a re-cap is necessary. It sucked, that pretty much sums it up.

Those bandages had to be changed way too much!

The look on his face here pretty much says it all.

This is how we slept the whole time and spent most of our days. I haven't slept in a crib in 30 years and I don't want to again!

This was a prayer blanket made for him by the women at a Catholic church out in Marble Falls. He still likes to sleep with it.

This was looking at some cards made for him by a class of students down in Houston.

And looking at a book of Seize Hope pictures that was made for us. His nurses were awesome!

We called this a spiked drink.

And on the last day with the grid in, Tuesday, he was finally starting to feel a little better, he wanted to sit on the floor and we even got a few smiles out of him.

We were prepared for the crappiness of the grid, we were not however prepared for the severe anxiety that would come after the 2nd surgery.

We all started to go a little crazy in the PICU again. If you look closely, you can see the swollen little rock star.

He was VERY excited when he finally got to ride in a wagon! He rode and rode and rode but Mama had to be there with him. The next day the only way I could get him to ride in anything was for me to sit in a wheel chair and hold him and then someone could push us.

One evening he perked up for about 10 minutes and was telling that dog to stay. He was giggling and being his normal happy self. I'm so glad that we saw that, otherwise I would be extremely worried.

We did have a lot of visitors in the hospital, which was great. And some of them cheated at tick-tack-toe.

And others danced with bugs! Jack of course slept right through his cousins being there and woke up 5 minutes after they left.

We got let go last Saturday, I think mostly because the NP who was there saw how badly Jack was freaking out whenever anyone dressed in scrubs would enter the room or even try to talk to him in the hall. They all decided that he would actually heal better at home.

We were hoping that the anxiety he was having would ease up a bit after getting home, but sadly we were sorely mistaken. Up until Thursday he did nothing but sit on me and scream bloody murder. I can't go to the bathroom without him having a major melt down.

He is now sleeping in our bed with us. I was sleeping in his bed with him but he would flip out in the middle of the night if he woke up because Daddy wasn't with us. Then when Daddy was with him he would flip out that I wasn't there. In the bed with us, we all get more sleep so we are going with it until he adjusts a bit.

Thursday he finally started to loosen up a little. I still can't pee without him flipping out but he is finally interested in a few books and the ipad and he isn't screaming non-stop. He still gets very upset is either Jonathan or I walk out of sight. The poor child goes into major melt-down and just flips out. I can't really blame him. The last time I left him someone cut open his head and scooped out part of his brain, so who could really fault the child for having a little separation anxiety? I must admit though, I was not at all prepared for this part.

Some of our friends went through this a little over a year ago and they told us to take video of the things that he can do so that if he needs therapy, we could just use the video as references for what he could do. So I took a lot of video! I was somewhat prepared for him to have some seizures, for him to lose some skills or speech, but none of that happened! I did not expect him to have massive anxiety attacks though. I just wish there was something more we could do for him. Our 2nd day home from the hospital I yelled at one nurse on the phone and cried to another and finally got the doctor to call me. He gave us some anxiety meds to give Jack, which helped a little but not much, and said that it was just going to take time. Like I said, we are having to really just dig deep to get through this.

And there are very few shirts that I will actually put over his head because they stretch enough!

Post-op

2011-09-30T22:10:00.001-07:00

I keep meaning to come give an update but my arms have been glued to a sweet, and very swollen, little boy!

Surgery went VERY well! They told us it would be 3-4 hours and after 40 minutes they paged us. I completely flipped out and went running across the hospital because I had gone up stairs to get some Internet access. The neurologist called us back and said that it was done and the surgeon was closing him up. We were floored! the tuber was right on the surface and they removed a few others that were behind it too. A good section of his temporal lobe is gone now.

In recovery he was very upset but thankfully not puking! The first night was actually pretty calm because they had him on a morphine and valium cocktail, but it's been pretty rough since. We've kept the Tylenol with codeine in him on a regular schedule but he is just not himself! He is extremely swollen and in some pain. We can give him morphine every hour if we want but it doesn't seem to really help much. We finally got some Valium put back on his chart and that seems to do the trick better. He has also been very constipated. We managed to get some of that taken care of this evening but his belly is still a little swollen.

He is on high doses of steroids which don't help either. He is just mostly a cranky child. But the awesome news is that he is exactly the same child that went into surgery! He is talking the same and screaming "all done" anytime a nurse walks in the room, he can move both sides, pass objects between his hands, raise his hands up, self feed, kick his legs, and play just like before. And the best part is that we haven't seen a seizure since!

Yesterday he enjoyed riding around in a wagon! Today he enjoyed sitting in mama's lap in a wheel chair and going outside for a walk. He wanted nothing to do with the wagon today and was very upset if mama wasn't holding him. He wants daddy in the room too but mama does the holding. I got peed on 3 times today and anytime I needed to use the bathroom, he flipped out while I was gone. It's pretty exhausting to have a 36 lb toddler glued to you like a leach when you are exhausted from being in the hospital, but I am just so glad that he is doing so well and that the hard part is behind us that I will sit with him clinging to me for as long as it takes.

The kindness and generosity of others has been amazing as well. I don't know if I will get around to writing thank you cards at this rate. I optomisticly brought some to fill the time, but I have to laught at myself for that now! But know that we are so grateful for the cards, emails, gifts, food, prayers, alcohol, and company, there simply aren't enough words to express our gratitude or how loved and supported we all feel.

We are hopeful that we get to go home on Sunday or Monday at the latest. It depends on how the next day or so goes but it is looking like it will be soon. We are about to start keto for a final 3 month stretch and then wean to a much easier diet known as the modified Atkins. We are very excited about this!

I'd better go to sleep before it gets too late but I will post some pictures from the hospital after we get home. Hopefully nothing too eventful happens between now and then.

T-minus 11 hours

2011-09-27T19:32:00.000-07:00

Surgery is soon!

I am nervous, excited, and enjoying an adult beverage brought by a friend.

The docs are confident that we have collected enough data, even tough he hasn't had one of his big typical seizures.

They will take us back around 7 and surgery is scheduled for 8. Our neighbors, who we know from our epilepsy support group, had surgery right after Jack last Wednesday and will be doing the same tomorrow too.

Last night Jack was up from midnight to 4 and then woke up at 8 for the day. He didn't nap all day and just finally fell asleep not long ago. I really hope he sleeps all night!

I'm not really sure what else to say.... it's been a very long week and the next few days are going to be rough. We have had so much support and it has been wonderful and really helped us through.

Here are some Seize Hope pictures:

Christy and her dog are Seizing Hope here in Austin!

Here is Jack taking boxes to the post office to ship off to some of his friends!

Port Saint Lucie, FL

Downington, PA

Albequerque, NM

Dallas, TX

Anaheim, CA

Plano, TX

Fort Worth, TX

Leander, TX

And these are just the few that I have pictures of on my computer. They have gone as far as Canada, all over Austin, I know of 4 class rooms here in Texas where these have been handed out and Jack has even gotten many cards from the kids. Total so far 900 bracelets and cards spreading epilepsy awareness have been handed out. I have another 500 (300 adult, 200 youth sizes) arriving on Thursday so if you would like some to help the cause, let me know!

A huge special thanks to some Real Mom's out there who got all of this started and who have spread this nation wide. This has given me something so positive to focus on during a very stressful time. I will forever be thankful.

If you are the praying type, please keep Jack, the surgeon and his team, and our family in your prayers tomorrow. Seize Hope!

Day 5

2011-09-25T12:54:00.000-07:00

We are on day 5 here and have yet to actually kill anyone.

It has been super rough on all of us, especially Jack. He just is not himself and we are getting tired of having to physically restrain him from pulling at his head.

2 nights ago they were threatening to send us back to IMCU (intermediate care unit) because his sodium levles were so low. We had to crush a tablet and force it down him but it worked. Then the next morning he hadn't had a wet diaper and they were threatening to cath him again but he has a little bit of trauma from the first time they did that and doing it again certainly isn't going to improve that. They did an u/s and his bladder was very full he just wasn't releasing it. Thankfully he peed (all over Jonathan I might add) shortly after that. Twice.

Jack is also refusing all oral meds now. Before we came to the hospital he was doing great with the syringe as well as swallowing a pill. Now though he is spitting everything out and getting anything into him has been awful. We aren't sure what to do anymore accept pin him down and try to force it down his throat. It's been awful. The poor kid is having a really rough time and refusing the meds isn't making it easier. The only thing that really calms him down is the IV morphine.

Last night they had to re-wrap his head 3 different times. It was traumatic for all of us. I yelled once, cried once, and it took everything in me to not kick someone out of the room. I have said that she doesn't get to wrap his head anymore.

This morning he finally wanted to sit on the floor and play for a bit. He is eating well, though he doesn't like anything sweet, and drinking plenty too. This morning they finally unhooked his pic line so that's one less cord to worry about.

Jonathan and I are switching off sleeping. I'm at the hospital curled up in his crib with him all night, either trying to dose or watching Elmo with him, while Jonathan leaves the hospital to sleep, and during the day I get away for a few hours to rest. It has actually been working really well and I think saving our sanity. It is so hard to rest there and of course they have to mess with Jack every 2 hours even if he's sleeping.

They are thinking they may take him in on Wednesday for the 2nd surgery even if he hasn't had one of his typical "big" seizures. He is clearly miserable, the risk of infection goes up the longer they wait, they do have 3 small seizures on the EEG along with lots of activity and it all lines up with where the abnormality is. It would just be nice to get one of the big ones to make sure they get everything.

Brain Surgery, stage 1

2011-09-23T08:06:00.000-07:00

I finally have a few moments to sit down and type for a minute. Wednesday we came in early and surgery went very well. The doctor could actually feel the tuber that is causing the issues when he opened him up. That bodes well for actually removing it. We saw a picture of his brain with the EEG leads laying over it.

The placement was uneventful and they expect no complications, which is great. What's not great is the amount of vomit and pain from my poor baby. He was in the PICU for over 24 hours because his blood levels were not good at all. Blood sugar was through the rough, C02 was practically nothing. CBC has been low as well as his blood gas is wonky. It took quite a while to get everything stable.

Wednesday night I sent Jonathan home to sleep and I slept in the crib with Jack. He would let me out of arms reach. He kept puking.... on me, but was begging for water and ice. It was a really rough night. It was so hard to see him in so much pain.

Then yesterday he slept quite a bit. I came home to rest for a few hours and Jonathan was there with my parents. I don't think he was awake longer than 30 minutes at any time. Usually when he was awake, he was crying and needing pain meds. He's not a fan of everyone messing with him and all of his cords keep getting tangled.

The doctor said that he had a sub-clinical seizure around 6:00 that morning. Sub-clinical means that his body didn't move but his brain did seize. He needs to have more seizures though.

They finally moved us out of the PICU at about 5:00 yesterday and got us into a regular room. We have a friend who is a nurse in the unit we are in who has been a God send. She only worked on Wednesday but has been calling and checking on us as well as calling the unit and setting us up with the best nurses. It's been great.

Last night we got all snuggled into the crib again (I had sent Jonathan off to get some sleep) and at about 11:00 PM he decided he was going to wake up and chatter for a bit. He seemed much more like himself! We watched Elmo and a movie and more Elmo on the ipad. He also ate some ice and drake some Juice. This went on until about 3:30 when he finally dozed back off only to be messed with at 4:00 for vitals and meds. Then he woke at 6:00 and was determined to get out of the bed! I held him for a bit and then not too long after Jonathan got there we managed to get a play mat on the floor and he sat there and played with some of his new toys that people have brought him.

The doctor decided to take him off the ketogenic diet while in the hospital. We were a bit stunned by that! Of course he isn't eating anyways right now but it makes the meds and IV fluids he can have easier to figure out and whenever he does start eating we don't have to weigh everything out. He will go back on the diet as soon as he has some seizures.

Everyone has been really great to us, keeping us well supplied with food. We really appreciate the gifts, drinks, food, and visitors.

If we can get some seizures soon then they will move his surgery to Monday, which would be awesome.

Bald is beautiful, but a mohawk totally rocks!

2011-09-18T19:55:00.000-07:00

This is mostly a picture post. We figured we would have some fun with Jack's hair considering his head has to be shaved anyways.

I love Jack's beautiful white blond hair. People always comment on how amazing it is and I love the curls in the back.

He did pretty well with the actual cutting. He had Elmo, food, and a mirror. Of course he is a very active 2-year-old which I think is what kept me from crying!

And it turned out okay!

After we spiked it with purple gel, we put his purple t-shirt on and took him outside to take some pictures.

For those who say that he has a fat baby belly, I give you proof that his baby fat is quickly vanishing.

He kept saying "hair" and the "purple". When we were inside he would run to the mirror and laugh!

A few of the neighbors came out and this is what Jack does when he sees other kids. It's pretty cute.

Everyone took Seize Hope bracelets and cards.

He learned how to say "Longhorns Score" yesterday :-)

This is what he does when he says, "Oh No!"

I think it actually turned out really cute. We are going to spike it purple again for his pre-op appointment!

The Schedule

2011-09-17T20:39:00.000-07:00

The next few days are rather hectic around here. Mostly because Jack is teething therefore not eating well which means I have no idea what he is going to eat while at the hospital. I'm assuming that he isn't going to eat much the first day or so. Lately he is very into eggs and bacon with strawberries, a pumpkin muffin that I have and is easy, and hotdogs. Today was the first day in a full week that he actually ate lunch, and it was pretty exciting.

Last week we met with the surgeon and it went very well. They are going to put EEG leads over his right temporal lobe and some of his right frontal as well. Might as well make sure they get everything. The doc said that you can tell from his MRI that there are lots of lesions on the temporal lobe. He doesn't think Jack will need any kind of rehab after and thinks that his development will just skyrocket. We hope and pray that it all goes as smoothly as the doctor thinks it will. We have had to start reducing his seizure meds because the new one is working quite well. Of course after failing 7 of them it is statistically impossible for this one to actually work and it's pretty typical for Jack to have a "honey moon" period on a new med that is a good one for him. The doctor is only going to put him on 1 med after surgery! We are very excited about that.

Tomorrow we could go to a tour of the operating room at the hospital. It's at 1:30 so he will probably be up from his nap but I am so nervous about him getting sick we will probably skip it. I had a full blown sinus infection last weekend and Jonathan has had allergies. It's only by the grace of God that Jack hasn't gotten anything. With all the smoke here from all the fires the last few weeks it seems like everyone has something.

Tomorrow we are also giving him a Mohawk, pictures will follow.

Jonathan will go to mass tomorrow evening, I am staying home with Jack to avoid any contact with sick people. Sometime before the surgery he is supposed to be anointed but I don't know when that is going to fit in yet.

Monday, if Jack takes an early nap like he usually does, we are going to have lunch with Jonathan at his last full day of work at this job and then Jack has swimming lessons at 2:00. It will be the last one he gets to go to for at least a month. Jonathan will start his new job on October 3rd, which is a Monday.

Tuesday is when things get really interesting. We have his pre-op appointment at 11:00. That was the only time they had available, which is an awful time for Jack. He naps from about 10:00-12:00, sometimes a little more, sometimes a little earlier. But it's just going to be rough. He will get blood work done and we will meet with the anesthesiologist.

Wednesday morning we go in for surgery. He will be the first one of the day and we know that because we know the other family who is having the same surgery that day. Jack is the youngest and youngest always goes first. Jack will likely be taken back for surgery at 8 (I'll find out for sure on Tuesday morning), which means we have to be there at about 6, leaving at 5ish, getting up at 4 to pack the ice chest. Nice hu?

Anyways, they will put a pic line in, which is basically a more permanent IV. It will be in the whole time he's in the hospital but after it's in they won't have to remove it and move it like they would a regular IV. I remember them moving the IV around on me a zillion times when I was in the hospital after my elbow surgery and it wasn't fun. I'm actually very glad they are putting in the pic line.

After the 1st surgery he will have EEG leads on the surface of his brain and be hooked up to be monitored. He will go to ICU for 7-24 hours and then be moved the the EMU (epilepsy monitoring unit) which we have been in multiple times before. They have the room fully monitored by video and a team of people in a little room constantly watch the EEG's and the video. Then we wait. Once he has a seizure the doctor will "map" it 3 times to figure out exactly what needs to be removed.

The second surgery is actually scheduled for the 28th, but it could happen sooner. It all depends on how long it takes him to seize. After that surgery he goes back to ICU again and then to a regular room but I hear they bounce back pretty quickly.

This is all very exciting! It's the most nerve wracking thing I've ever been though, but he could actually be seizure free after this. I hesitate to even let myself imagine what that would be like, but it is liberating.

I have been sewing lots of little hospital clothes. Keeping hospital gowns on him is impossible and he can't have anything that goes over his head plus we have the pic-line to think about. When he was smaller Carter's made great snap on outfits, but sadly they don't make them in a 4T. So I made these that snap up one side and on the shoulders. He has slept in them a few times so I'm hoping they are familiar and feel like something from home. They turned out pretty cute!

And this is one of my favorite most recent pictures of him in his Sesame Street snap-on's. I need to blow it up and frame it.

Look at that beautiful hair!

Don't take food from strangers!

2011-09-14T22:03:00.000-07:00

I met a friend of mine at Lake Line Mall last week for a play date. She has 2 little ones and her little boy is only a few months younger than Jack. When I got to the mall I asked how often the play area is cleaned, because those places are usually covered in germs, and they said they clean it every day. We got there right as it opened so I figured we would risk it.

Initially we were the only ones there. The kids were having a good time. The thing that I like most about the place is that there is no food allowed. Or so the giant sign says! I'm sure you can see where this is going...

As the mom of a keto kid, I am constantly scanning for food on the floor, watching for people that are eating so I can steer Jack someplace else, and always aware of our surroundings. I usually keep Jack right by my side (or follow 2 steps behind him) when we are out in public. Of course we all know that things can happen so quick.

Well, my friend and I were sitting there talking and the kids were on the other side of the little play area, probably 10 yards away, when I looked up to see a woman holding a Ritz cracker out for Jack to take. The only thing I could do was scream and yell not to give it to him. My voice echoed through the mall from the tile floor and the woman jumped about 3 feet in the air. Poor Jack was standing there with this look on his face of, "I don't know if this is a good idea" and he wasn't even reaching for the thing, thank God. We wonder how much about the diet he understands. He gets that his food is different and he gets that he has his food and we have ours, but I'm not sure if he gets much beyond that.

We're talking about a kid who loves lettuce, because it's a special treat, and a kid who thinks black olives are the best thing in the world. He's never had a cookie in his life, never had an m&m, never had gluten. Thankfully he doesn't know what he's missing, but he is curious.

The woman, clearly a grandmother there with her granddaughter, probably about 60, was completely ashamed. I told her that you should never give food to a child you don't know without asking the parents first. EVER! I also told her that one cracker could make him have seizures for 2 weeks. She apologized profusely and I clearly scared the crap out of her. I just hope that she doesn't try and do it again with another kid.

There are so many food allergies, diet restrictions, intolerance with gluten and/or casein, the list goes on and on. So the Public Service Announcement of the day is PLEASE, if you don't know the child (and maybe even if you do) don't give them food without asking their parents first. Because clearly if you offer it to my kid, you get screamed at in public.

I think it took all day plus most of a bottle of wine for my heart rate to come back to normal! And the main reason it freaked me out so bad was the last time someone gave him something, and the only time that I didn't get there in time to stop them, he immediately had a seizure after going 63 days without one. I was in a group of mom's, someone gave him a dried cranberry that I dug out of his mouth 1/2 chewed, and he had a seizures. I'm running with him in my arms, saying "Jack, look at me baby, are you okay?" and laying him on the floor to see if he's okay, and no one even asked if I needed help or if he was okay. Some people are just oblivious. Please don't be one of them!

Seize Hope: The Month of Jack

2011-09-01T11:00:00.000-07:00

When I was pregnant with Jack I stumbled upon a site called Baby Center. They have message boards where pregnant women go to complain, find out tips to start labor and what to pack in their hospital bags. I'm a part of a private group, one that you have to have a password to get into, of about 55 mom's, all with kids the same age as Jack.

The posts are far different now. Now they are about potty training, the dog eating the poop off the floor after the kid decided not to go in the potty, a drunk post here and there (I don't know who that could be, ahem ahem), and even everyone's accent.

I have even met a few of them. One lives right up the street and we get together for play dates on occasion, some that are not too far from Houston and we have met, but most have just been internet friends.

These women have been a wonderful support when it comes to all of Jack's stuff. So much so that they have deemed September "The Month of Jack". They are spreading awareness all over the country. They had wristbands made that say "seize hope" and I am having 4x6 cards printed up to go with them to spread awareness about TSC and epilepsy. They are also doing daily facebook updates with facts about TSC and epilepsy.

Here is what the bracelets look like! I love that they are unique and draw the eye. I have adult sizes and youth sizes. The youth one would fit a child 5 or under quite well but might not work much past that age.

Here is what the front of the card looks like. I don't have these in yet but will hopefully get them soon.

And the back of the card.

I have already has a few people ask for some to hand out! And of course that is awesome. The point is to spread awareness and this has really given me something good to focus on in such a crazy stressful time. So, if you would like to hand some out at work, or your children want to hand them out to their class mates, let me know! I am ordering extras because I've had so much interest already so I should have plenty.

If you would like to make a donation in Jack's name to the TSAlliance, that can be done here.

We also have a trust set up in Jack's name to help cover medical costs and you can email me for more info on how to donate to that if you would like.

With all of that being said, no donations are at all necessary. This is the month of Jack and the point is simply to Seize Hope!

My kid is amazing!

2011-08-30T20:10:00.000-07:00

Jack's favorite thing is swimming lessons! He is in the Super Waterbabies class for the 2nd time. Before it was the mommy and me classes where I was in the water with him. He loved it and it was really just playing in the water, learning breath control, and having fun. Now though, they make him work.

We love Ms. Carly (his teacher). This is now the 3rd class he has been in with her. She knows him well, knows about about his seizures and what to do if he has one in the water, and of course is wonderful with him.

This session class is at 2:00 on Monday. 2:00 is a crappy time for a toddler and I've had to wake him up for the last 2 weeks to take him (something that I try to avoid at all costs) but it is the only time Carly is teaching the Super Waterbabies class.

The benefit... It is only Jack and one other little girl in the class! Jack has known Lilly for quite some time too. And they have the pool all to themselves. It's awesome!

Anyways, here is my "baby" finally starting to back float on his own!

Running away

2011-08-25T15:14:00.000-07:00

Jonathan and I are running away for the weekend. Ok, really we are just getting away for the weekend, but it feels so weird to be doing something so normal that it seems more like running away.

We are headed to Schlitterbahn tomorrow morning for a good chunk of the day. I think that is actually where we met for the first time when I was 13 and he was 16. We went with a group of his cousins and that was the last time either of us was there. Sadly, only about 1/3 of the park is open because school is back in. We really wanted to go after school was back in to avoid the crowds, we just didn't realize that they wouldn't keep the whole park open when it is still 107 outside. Sorry people, this is NOT fall.

Anyways, after playing at the park we are headed to Fredricksburg where we will be staying for two whole nights! I'm not even sure that I know what to do with myself. Holy crap, I might go nuts.

It is supposed to be extremely hot, so I don't know how much walking around we will do, but our bed and breakfast is just blocks from the main street and I'm sure we will find a vineyard or five to visit. I've never been to one, and I hear they have tastings.

We will head back on Sunday sometime after lunch. Or as long as I can take being away from this little dude.

In the mean time, Jack will be staying with my friend Rita for Friday and Saturday and then my mom is taking over Saturday evening and staying with him until we get back on Sunday. I'm not sure who I should worry more about, Jack, or the people taking care of him. I know that they are both perfectly capable and that Jack will have a blast with them. They know how to handle the diet and his meds, which is no small feat. But Jack has been getting up between 5 and 5:30 for the last 2 months now. He has one more week left of the med, and I hear it takes about 2 weeks after for them to fully adjust, but I don't think he is going to. He is just so used to getting up at that time and I don't see it changing ANYTIME soon. So yeah, Rita and Gigi are in for some early mornings... AND WE GET TO SLEEP IN!!!!!

What I would tell you

2011-08-19T20:23:00.000-07:00

I read this tonight of Facebook and it really hit home. As we get closer and closer to surgery I find myself wondering more and more about Jack's future.

What will it be like? Will he be in special ED classes? Will he be able to play t-ball or soccer? Will he always be in some kind of therapy? Will he ever just get to be a normal kid? What the hell is "normal" anyways? Will he be able to be in boy scouts? Will he ever be able to go to summer camp without us? Or on youth group ski trips? Will he drive a car? Will he survive the surgery? Will he be the same Jack-a-roo that we know and love? The questions go on and on.

I am normally really good about not wallowing in the "why him, why us, why me?" questions. It does him ZERO good and if I let that go on, it could actually do him some harm. I've actually been really good at not being a martyr about everything that Jack deals with, because I don't want him to be that way. And because even though it's really rough sometime, I can not imagine my life without Jack or without Jack being exactly who he is. I'm not going to lie though, sometimes it really sucks. Like when cutting open his head and scooping out part of his brain is the best option. So I cook, and physically doing something helps at least lets me channel my energy into something. I would walk around the world for this child if it would help, but standing in the kitchen for hours on ends at least makes a little bit of a difference. I also pretty good about not worrying too much about the above questions, until recently at least. Which is why margaritas help.

Anyways, like I said, this is what I found...

What I Would Tell You…….

I sensed someone watching me as I comforted my daughter after a particularly traumatizing dentist appointment at the Children’s Hospital. I looked up and saw you staring at us from across the waiting lounge. I didn’t pay much attention, as I have grown accustomed to the curious eyes of onlookers. Our daughter was born 7 ½ years ago and after an abrupt lack of oxygen at birth, she changed the course of our lives forever. Perhaps, our lives unfolded exactly as they were meant to— they just didn’t unfold in the way we had imagined or planned.

I talked to my daughter, kissed her and hugged her. I was giving her a brief break before putting her through the next traumatic experience of the day~ the car ride home. Having cerebral palsy is the least of her worries but this condition can turn a car seat into a torture chamber.

I stood up to gather our things, my daughter in my arms, and it was then that I noticed you were holding an infant. It was difficult to know for certain how old she was. I knew immediately, though, that you were one of us. I knew that only recently your life had changed drastically and you sat here in this Children’s Hospital wondering, “How did we get here?” I should have recognized that shocked stare because I once had it, too. And I assume that the man sitting next to you, looking equally tired and shocked, was your husband.

I made my way toward the doors and as I passed you, our eyes met and I smiled at you. You smiled back and for a moment I knew that you knew that I understood.

If I could, I would tell you although you might not believe it right now, you will be okay. I would tell you to dig deep within yourself because you will find the strength and resilience somehow and it will surprise you. I would tell you to honor your feelings and let the tears flow when they need to. You will need the energy for more important things than holding in emotions.

I would tell you that the man sitting next to you might cope differently and he might even want to run the other way. But I would tell you to hang on because he is scared and he really doesn’t want to leave you. I would tell you to look after yourself so that you can care for your daughter. Don’t underestimate the power of good nutrition, exercise, sleep, supplements and an empathetic therapist.

I would tell you that grief will come and it will confuse you because how can something that brings such joy also bring such sadness? I would tell you to let people into your lives to help you. Our children really do require a village to raise them. Access all of the services and resources available. Find someone who can learn how to care for your child so that you can have breaks and so you and your partner can go on dates……..even little ones like a twenty minute stroll outside holding hands, sharing wine on the deck or even catching a movie.

I would tell you that you know your child best of all and no matter what you are told by the doctors and other professionals who will be a part of your life, YOU know the answers. You will teach them about your child. At times you will question the validity of your intuition but after a while you will become profoundly aware of how accurate your gut feelings are when it comes to your child.

I would tell you not to be a martyr. Caring for your child will require tremendous focus and unimaginable energy and it can burn you out and make you sick when you least expect it. I would tell you to let your guard down along the way so that you can stay healthy in your mind and spirit.

I would tell you to seek out other mothers like yourself. This is, indeed, the road less travelled and you will feel very alone along the way especially in the company of healthy children and their parents. Yes, you will feel very isolated but know that we are here. Sometimes you have to look a little harder but we are here. You can find us online, in support groups and wandering the halls of the Children’s Hospital.

I would tell you that you will know far too much about the human anatomy, neurology, gastro-enterology, feeding tubes, pharmaceuticals, and so on, than a mother should ever have to know. I would also tell you to do some research to inform yourself but be very careful not to be overwhelmed by the internet and all of the information available to you. Having some trust in what your child’s specialists tell you can be very grounding. Other mothers and fathers of children like ours can be a wealth of information.

I would tell you that this isn’t an easy life. It is tough: there is no doubt about it but you are very capable and the rewards are great. You may never see your child graduate from university, walk down the aisle or give birth to your grandchildren but you will feel pure joy when your child laughs for the first time at the age of 3 years and 8 months. You will celebrate the moment when you connect with your non-verbal child. You will call your spouse at work to tell him that she has gained 4oz. because weight gain is always a struggle with our children.

I would tell you that you will have to witness procedures and surgeries and suffering well beyond what any parent should ever have to bear. But, I would tell you that you will be courageous and comforting because your child will be experiencing far more suffering than any child should ever have to endure.

I would tell you that your life will not resemble the life you had planned. It will be as though you landed in Holland instead of Italy but after some time, you will adjust the dreams you had and this reality will be normal to you. You will dream new dreams.

I would tell you that you might find yourself staring death in the face during close calls. You will be asked to fill out DNR (Do Not Resuscitate) forms and although you might make decisions to not resuscitate in the event of a cardiac arrest, when the moment arises, you will panic to think that it could all come to an end. And I would tell you to not feel guilty in the darkest moments when you pray to God to take your child if it would mean the suffering would end. This might horrify you but know that your love for your child is so great that at times you will believe that death would be a blessing.

I would tell you that others will not get it. They can’t. This is a very unique and complex journey on all levels. We cannot expect anyone to get it. And I would tell you that people— the cashier at the grocery store or your insurance broker or even your hair stylist— will say stupid things like, “God only gives these special kids to special mothers” and “God will only give you what you can handle.” You will nod and smile but eventually you will look them right in the face and tell them that those simple maxims are a bunch of bullshit.

I would tell you that imagining your future will be bittersweet and may involve a Plan A and a Plan B. Plan A will be what you will do if your child outlives the predicted life expectancy set forth by the experts and Plan B will come into play if they do not. You will catch yourself casually discussing your future with the code phrases of Plan A and Plan B.

I would tell you that grief will creep up on you after years have passed and you least expect it like at a wedding when the father and bride have their first dance or when you hear a birth announcement. It will also creep up on you when you see yourself in a new mother who is just beginning this journey.

I would tell you that you will recognize her because she is you from 7 ½ years ago. And you will want to run to her and hug her and tell her that everything will be okay. You will want to save her from the pain and the hardship and the unknown.

But I would tell you that when you find yourself sitting at the Children’s Hospital and you see a new mom and dad who are just starting this journey, you smile at them and walk by as they have their own path to travel and it will be different than yours. It may be longer or shorter. It may be more or less complicated.

I would tell you that her searching eyes are looking for some sign that she will survive this. And you, smiling as you pass, with your child arching all over your shoulder, will let her know that yes, she will survive this and may even thrive.

Julie Keon

June 29th 2011

Now online at www.WhatIWouldTellYou.com

That weight loss thing

2011-08-17T20:22:00.000-07:00

So I lost a good 12 lbs before the boat trip. Speaking of the boat trip, it totally rocked. Jack was having daily seizures when we went and the entire 4 days he didn't have a single one. NOT ONE. I think he's telling us that he wants to live on a boat. Which I'm all for, by the way.

We swam all day, had friends out, had great food, and Jack slept all night. I miss nights when he slept.

The only other thing that really sticks out in my head is that the last day Jack started to get sick. He was actually showing signs of acidosis, which is a VERY bad thing and gone untreated can lead to death. It can happen if his blood ketones (think ketogenic diet here) get too high. He was extremely lethargic, didn't want to eat, didn't want to drink, didn't want to move. Of course we didn't have any apple juice with us, which is what they treat it with, so we had to just get whatever carbs we could into him and get him back on land. He enjoyed his strawberries. We were headed back anyways and he perked up by the time we got home so we didn't have to take him in, but I was worried. But I had the dietitian on the phone in no time, I didn't have our blood ketone testing kit with us, and the nurse called later that day to make sure he was okay. But that is what I'm worried about with him being on the full diet while having surgery too because he likely won't want to eat much at the time.

Anyways, here are some pictures!

Since then both Jonathan and I have struggled with the weight loss. Lets face it, we are extremely stressed. We aren't sleeping much because Jack is on a diet that requires a lot of time and he is waking up at 5 every day, and the closer we get to surgery the more neurotic I get. 5 weeks from today.

We tried this crazy HCG diet that just ended up being a bad idea. We had awful headaches the whole 4 days that we did it, and I went from cooking every bite that one person eats to every bite that 3 people eat. The stress was enough to drive me over the edge and we were both on edge because we weren't eating much. We both lost 5 lbs in those 4 days but it just wasn't worth it.

Now, I am really just trying to keep from gaining weight in the next 5 weeks. If I can do that, I will deal with it after surgery. I would love to exercise, but when it's 100 degrees at 9:00 pm there ain't no getting outside. We quit the gym back in January because we weren't hardly using it and we just couldn't afford it anymore, so there goes our inside place. If I got more sleep, I would go at 5 am when we wake up but running on 5-6 hours of sleep just makes me really cranky.

I know that I need to stop making excuses, and after September is over I will, but until then we are all just trying to survive.

Houston

2011-08-16T19:24:00.000-07:00

Okay, so here is a re-cap of our Houston trip.

We went over the 4th of July weekend for a MEG scan. The scan was to see if they could determine if Jack's seizures have a focus point. The reason we are going back down the surgery road is because his seizures were getting worse. The diet has helped a lot, but 5 seizures a week is still way to many.

We started messing with the diet and his meds to see if we could get them to reduce a bit, and they only got worse. He was on a med called Trileptal and he was having about 2 seizures a day. I didn't realize how many he was having until I slept in the same bed with him in Houston. The poor baby!

So we took him off of that med and put him on a different one and we are taking away one that he has been on for 19 months. If you are following all of this, you are doing better than I am! I can hardly keep up anymore. Thankfully the new med we are trying is actually helping. He is in the "honeymoon phase" where he isn't having seizures. When we do find a good med this phase lasts a few weeks to a month or so and then the seizures come back.

Anyways, back to our trip to Houston!

We headed down and ended up on the phone with the hospital for most of the trip trying to get everything set, the arrival time (which changed), and make sure they knew everything about the diet and what he can/can't have. Needless to say I was worried about how things were going to go just by all of the confusion on the phone.

When he wakes us up at 5 am it's all fun and games, but when we wake him up at that time it's the end of the world!

We had the best anesthesiologist ever. He was great with Jack and with us. He took us into the room with the MEG and explained what all was going to happen.

He wanted us there when they put him under and he let me give Jack a nail trimming after he was out, which is the best way to do a toddlers nails! After that he put us in the break room right around the corner from where they were doing the scan. I could stick my head out the door and hear Jack's heart beat from the monitors. He also kept us informed as they were doing things. After the scan was over, we walked with them up to the MRI room where Jack had yet another MRI. We got a text from the doc when it was done so that we could meet them in recovery.

We were there for a total of 9 hours, which made for a very long day, but honestly it was one of the best hospital experiences we've had so far.

That afternoon though, Jack was ready to go go go! We went to the Children's museum and played for a bit. He loved playing with the pretend food.

And I think daddy had just as much fun as Jack did!

The next day we headed down towards Moody Gardens and met some friends at the water park there. Of course our little fish could not have been happier.

We headed home the next day and Jack actually did pretty well in the car. Better then any other trip so far. He screamed a bit, but it wasn't a crying kind of scream. It was a make your eyes bleed and your fillings fall out kind of scream.

And we took a detour on the way home to the farm to visit with family. Jack had some fun with his cousins while we were there.

It was a very long weekend though and I'm glad it's over.

The scan did show that Jack is a surgery candidate. His seizures are coming from his right temporal lobe which is actually a really good thing. Only about a month left before the big day.

September 21st, 2011

2011-07-20T20:21:00.000-07:00

is the date of Jack's 1st surgery.

I know that I owe a post about how we got to this point, what has been going on with his health and all of the tests. I have been taking care of a child going through a med change though so I never really know what my day holds for me. Sometimes he's a perfect little angle, and other times he's a cranky toddler who doesn't know what he wants or needs. Thankfully he's always a sweet little guy, even when he's grumpy.

Long story short, he is a surgery candidate. It is currently scheduled for the 21st for them to go in and place EEG leads directly on the surface of his brain and then hook him up and monitor him for 5 days. It may not take that long, it all depends on how many seizures he has and when. But based on what they find, they will determine exactly what they need to remove and then the surgery to actually remove the seizure center is scheduled for the 26th, but that date is flexible.

I am excited, nervous, hopeful, and terrified all at the same time.

We meet with the surgeon and our neuro on September 6th for our pre-op stuff and to ask questions. When I asked our neuro if this was the point that they start prescribing high doses of xanax for the parents he just laughed at me... I was only partially joking!

What I'm thankful for today

2011-07-05T12:26:00.000-07:00

I owe ya'll a post about our trip to Houston and all of the medical stuff, but there isn't much to report other than we went for the scans.

I've found that on occasion I feel sorry for me and Jack lately because of how difficult our circumstances make life sometimes, (and I think part of that is lack of sleep) but I also know that we have it easy compared to some. So I'm just going to make a list of what I'm thankful for:

That Jack can walk, run, get into things and make a mess like a little boy is supposed to.
That he is a happy kid, for the most part anyways.
That he can tell me when he needs something to eat or drink.
That he is learning to talk and communicate! He has the sweetest little voice and even though we don't always understand him, he does try and I know that one day we will.
For his hair, he has really great hair!
That I have the ability, knowledge, and assistance to cook his meals and to find things that he likes.
That he goes through normal picky eater phases. Because it's normal for kids to do things like that and even if it's frustrating at the time, we are always thrilled with normal.
That I have the sweetest, most polite toddler on the planet. He says please (or "eeese") and thank you ("tink chew") even when he is upset.
That he sleeps pretty well, he can't help that seizures wake him up, I'm just thankful that he wakes up from them!
That I get to stay home with him and be the one to feed him, change him, and play with him.
For boat rides!
For people in our lives who try to be understanding and accommodating, even if it doesn't always work out! LOL.
That I have a wonderful husband who helps out so much with Jack and around the house. And he can cook too!
That we don't have to move yet and that Jonathan has so much time to look for a new job.
For blankies
And air-conditioning.
And coffee!

So in short, this post is in honor of those who don't have it so easy. For those who have a kid who is g-tube fed and can't be a picky eater, for those who's kids can't walk and run and make messes, and for those who have never heard what their child's voice sounds like. Thank you for reminding me how amazing my life, and my little boy are.

Spoke with the Neurologist

2011-06-11T19:13:00.000-07:00

So I'm just going to do a quick update on Jack here. There is more to tell, like about his yearly scans. And the fact that no one listens to parents. And ECI and how we now have a $500 bill for the evaluation that finally convinced them that HELLO, he's falling behind. Which I have been saying for 9 months now. But they don't listen to parents. Even parents with degrees in Early Childhood Education. But again, that is another story.

Jack had an EEG about a month ago. He didn't have any seizures while he was hooked up (it was a 24 hour EEG where we brought him home) but we figured the doc could still get some info from it.

When I spoke with him, he said that Jack is having a lot of discharges in his right frontal lobe, which is where the seizures are coming from. Discharges aren't actual seizures, they are small abnormalities in a localized area, whereas seizures affect the whole brain. The discharges are quick too and seizures last a lot longer.

Anyways, he says that the discharges being in one area is good and an improvement. Previously they have been is a few areas. Basically, he thinks that this means that Jack is a much stronger surgery candidate at this point.

We have to go to Houston on July 1st for a MEG scan (and come up with $1500 to get it done). The scan should tell us how deep within the brain tissue the seizures are coming from. If they are just on the surface that area can easily be removed, if it is from further down it is less likely they can remove it. And yes, we are back to talking about cutting out a part of my child's brain (which makes me want to vomit). But the doc is pretty sure that keto isn't going to be his miracle, even though it has helped tremendously. He is still having about 5 seizures a week and he is falling behind developmentally which means the seizures are taking their tole. We have to do what we can to get them stopped and this is the next (and last) option.

Please say prayers for him.

I'm done being fat

2011-05-30T19:38:00.000-07:00

See, I told you that I had a lot of posts brewing in my head!

It is really depressing to wake up every day and have to put on maternity clothes (when I haven't been pregnant for more than 2 months) because nothing else fits. 13 weeks of pregnancy really changed my body, and it sucks, and it's not going away. I refuse to buy fat clothes, it's just a waste of money. At least maternity clothes are comfortable.

But yesterday I ripped my favorite pair of pants and I wanted to cry. A friend stitched them up, but it still sucks. My other favorite pair got ripped too, but the crotch basically blew out on me. Thank God I was home when that happened. Always wear underwear people!

So anyways, I decided that I'm done being fat and that desperate times call for desperate measures.

Two weeks from today we leave on the house boat trip on Lake Travis. I am determined to fit into my swim suit from last year and not have to wear a maternity suit on the boat. I really like the one from last year and thankfully the maternity one is getting too big over the last few weeks.

I've been doing a low carb diet now for about 2.5 weeks and I've lost 8 lbs. If I can lose another 8 by the time we hit the lake, I will be a happy camper. I won't diet much while we're on the boat, but I will get right back to it when we come home.

Back at the beginning of the year both Jonathan and I really cleaned up our diet. We went lower carb than we had been doing and started meal planning again. It makes a HUGE difference if we have a plan of attack. But shortly after that I found out I was pregnant and even though we continued with that, I still gained a little weight. Not much, only about 7 lbs total in the 13 weeks, but the shape of my body was, and still is, completely different. I'm at the weight I was before getting pregnant and none of my shorts or pants fit. Even the massage therapist that I see at the chiropractors office mentioned that he thinks my hips haven't gone back to where they should be, like my body hasn't completely gotten the message that I'm not pregnant anymore.

Anyways, at some point I realized that I only had about 6 weeks before the boat trip and immediately cut out everything but protein, veggies, only berries as fruit and coffee. A few day after I did that I went full out and even cut out the higher carb veggies.

I was surprised that the transition wasn't difficult, I think because we had cleaned up our diet so much already, I was just tired of not actually losing any weight, even while I was eating well.

So there you have it. My goal is to lose 50 lbs. A lot of the health problem I've been having (ie: back pain and knee pain) I think will drastically improve with the weight loss. I still haven't been able to exercise because of those thing, but I'm hoping to at least be able to do some wii fit during nap time in the next few days.

I'll keep you posted on how thing are going and might even include a recipe or two on occasion.

I hate this stupid weekend

2011-05-29T18:15:00.000-07:00

Let's just get this out of the way first. I'm not at all complaining about the service people who have served or died for our country. They should be honored. End of story.

Growing up, this weekend was ALWAYS spent at the lake. For the first 29 years of my life. I was 3 months old the first time they took me camping. We have tons of stories, mostly about toughing out a rain storm on the weekend, because I remember one that it didn't rain on us. ONE in 29 years.

Missing this weekend was like missing Christmas. It was as big a deal as Christmas and it was one of those thing that we just knew what we were doing that weekend. Actually, all 3 holiday weekends over the summer. Memorial day was the kick off to summer and the boating season. 4th of July is just another good excuse to all get together and go camping, and Labor day was one last bang. And we were at Lake Travis every one of those weekends of my life.

Now, since my parents are divorced, it's all gone. And it's so depressing. The first one after the separation was when Jack was tiny and I cried all weekend. We vowed that we would go do something and start our own tradition. I don't want to join in whatever little gathering someone is having, I want to start a new tradition. I wish there was camping on Lake Travis, but there are so few places to do it now. Not to mention having a boat makes the whole thing much better.

Last year we went to the coast with my dad and his girlfriend and my brother and his family, which was good, but it was when we discovered that Jack has seizures while traveling and we all didn't sleep well and the mosquitoes were the most awful things ever. It was rough. We were thinking it would be a good new tradition, but we can't travel with Jack much right now. Which leave me sitting here on the couch all alone with Jonathan in the Phillipeans. We did at least have plans to go on the boat tomorrow afternoon, but my mom canceled. So yeah, I hate this stupid weekend.

Maybe I shouldn't complain. I have a roof over my head, food to eat, and a beautiful boy. And I am grateful for all of those things. But you know, the last few months have really sucked, my body still isn't cooperating with me, and I'm just sick of it. I think I need to open a bottle of wine.

A Love Story

2011-05-28T05:15:00.000-07:00

I came up with a few titles for this post, most were funny about boobs, but I think this is more appropriate. Because everything I've put my boobs through for this kid, is out of nothing less than love.

So lets do a "quick" re-cap.

At birth I was more concerned about breast feeding than I was about labor and delivery. I knew that I would not be leaving that hospital still pregnant, but there was no guarantee that I would be nursing him. I did leave that hospital still nursing, but I also left it with a lot of cracking and bleeding. That wasn't nice! It was super painful but I powered through and after about 2 weeks they healed up.
It took months for nursing to not be painful. I'm guessing because Jack is tongue tied, but I will never really know.
Then we had the pull off and scream phase. You can read the full story here. But basically we never found an answer to why he would seem to be feeding fine and then 5 min in pull off and start screaming. Both of us were in tears on a very regular basis.

awwwww, look how tiny and sweet my milk baby was.

So let me stop there for just a moment and talk about my stubbornness. When I was in 8th grade I was in the 2nd band. I loved the director and had a great experience and was really looking forward to high school band. As I was preparing for the audition to see what band they would put me in, I was told by my director that I would make the 2nd band in high school. There were 3. For some reason, I was offended by that and dug my heals in and insisted that I would make the top band. Well, I was one of 3 from middle school who made the top band out of at least 50. So yeah, I've always had a stubborn streak a mile long. When I put my mind to things, I make them happen, and breast feeding was one of those things I put my mind too.

After the screaming thing finally subsided, after talking to 3 different lactation consultants who were all no help and it took several months, was when Jack was put on steroids. He nursed every 2 hours around the clock for about 10 weeks. I had a mattress on the floor of his room and we slept there most of the night together. He wouldn't sleep in our bed with us because he thought it was playtime when he was in there. It was brutal. Of course he did that as a newborn, but only for the first 3 weeks and Jonathan was home the whole time with me so that I could nap during the day. But on the steroids he wasn't napping well at all because of the drugs and we were also trapped in the house because they weakened his immune system. It was brutal, but we got through it.
After he finally slowed down and started solid food around the same time, I had a lot of issues. I stopped counting at 15 clogged ducts. They are extremely painful! After the first few though, I got really good at getting rid of those suckers. I could have one gone within 24 hours. Now nursing while you have one of those is like walking on a broken leg. I also got mastitis twice. I pumped a lot to try to prevent the clogs, but even pumping 3x a day wasn't enough. And pumping is not fun! Especially when you have an infant to take care of.
So when he was about 9 months old he started getting really distracted while nursing. It's a very normal thing but he would only nurse if we were in the chair in his room. I finally decided, for both our sakes, to put him on a nursing schedule. Up to that point it was simply whenever he wanted, but he was getting to the point that he would act like he wanted it but then only nurse until letdown. Plus I had hopes that a nursing schedule would help with the clogged ducts. I think eventually it did, it just took a very long time.
This is when nursing got good. It was easy, predictable, didn't hurt (accept with I had a clog) and it was time for my baby and I to snuggle and connect. Not that we didn't have that before, but it was much easier for me to enjoy it without all the issues.
We had 5 good months because at 14 months we had to wean him for the ketogenic diet. I didn't want to, and I almost didn't start him on the diet because of it, but our compromise was that I could still give him breast milk but it had to be weighed out and mixed with heavy whipping cream.
So I began to pump again. The weaning was super tough. More on me than him I think because to hear your baby scream bloody murder in the middle of the night and know that you can fix it in a heart beat but not go in was awful. With every feeding we cut out, I pumped and froze milk. He was nursing 3x a day so that is how many I was pumping and I did that until I simply wasn't getting much at the nap time pumping. Then I continued to pump in the morning and evening until I was only getting drops.

My one regret in the whole thing was how we weaned and weaning so early. While 14 months may seem late to some, in the big picture it's quite early. The world wide average age for weaning is 4 years. Yes, you read that right, 4 years old. While I certainly don't want to nurse a 4 year old, I would still nurse Jack in the morning and evening if he could nurse. (Don't ask me why this paragraph is smaller. I tried to edit it but it won't change. Whatever. The last one is like this too, it has no significance to what is written!)

There is all kinds of research proving that nursing beyond a year is a very healthy thing. There is research that suggests that children that are breast fed longer results in bigger brains, here. And here is a list of a few benefits that I found at www.kellymom.com
- The American Academy of Family Physicians notes that children weaned before two years of age are at increased risk of illness (AAFP 2001).
- Nursing toddlers between the ages of 16 and 30 months have been found to have fewer illnesses and illnesses of shorter duration than their non-nursing peers (Gulick 1986).
- Per the World Health Organization, "a modest increase in breastfeeding rates could prevent up to 10% of all deaths of children under five: Breastfeeding plays an essential and sometimes underestimated role in the treatment and prevention of childhood illness." [emphasis added]

Now, I am not at all knocking people who stop breastfeeding before the child is 2. I'm not even knocking people who stop breastfeeding super early. Even if babies only nurse for the first week, they get colostrum which is a huge help to the immune system and can help them for up to 6 months! I worked for a mom who came home at lunch to nurse her baby, pumped at work, and had to start substituting formula at about 6 months. She felt bad about it, but 6 months even is great. Pumping is hard, I did it A LOT!!! But it's wonderful to be able to provide your baby with milk, even if you can't be there. It's a huge gift. One they will likely never really appreciate too.

Breastfeeding, much like any parenting decision, is something that has to be worked out within the family. And the opinion of anyone living outside that household should have nothing to do with it, much like most parenting decisions. And I found that a lot of people had some very strong opinions about my boobs in relation to my baby and thought that it was gross or inappropriate or whatever that I was nursing a 14 months. When he was only 9 months people started asking me when we were going to wean and honestly I was a bit stunned by that. So I'm going to say it now, if and whenever I have another, I am letting him or her self wean! There, now there is no need to ask when I'm weaning. Jack cut back on his own and I'm sure would have self weaned or be very close to it by about now. All of the articles and studies say to go as long as it works for both mother and child.

- The American Academy of Pediatrics recommends that "Breastfeeding should be continued for at least the first year of life and beyond for as long as mutually desired by mother and child... Increased duration of breastfeeding confers significant health and developmental benefits for the child and the mother... There is no upper limit to the duration of breastfeeding and no evidence of psychologic or developmental harm from breastfeeding into the third year of life or longer." (AAP 2005)

There is no harm to the child, and it actually has developmental benefits.

And here is one more article about the benefits.

Ok, enough about the benefits, lets get back to the story.

After the weaning and the pumping I had saved enough milk for 7 months. Woo Hoo! That's a lot of milk, I think somewhere between 500-600 ounces.
Then came the weighing and mixing, the calculating and finding a cup that he could get every drop, or as close to it as possible, out of without spilling it everywhere.

Now he has finished all the milk and is off it completely. It's bitter sweet to me because I'm so proud of myself for sticking to it in the beginning, for pumping as much as I did and making it last so long, and at the same time it's like the end of his babyhood. A few weeks ago I started leaking milk (just another crappy reminder that I was pregnant and am not anymore) and I thought about pulling out the pump to see if I could get anything for him. I didn't, just because I probably wouldn't have gotten enough to amount to anything and I didn’t need another constant reminder of the baby I lost, but it was tempting.

So, a chapter is closed. Overall, I feel good about it. I know that I haven’t posted in a while, I’ve got several posts brewing in my head so hopefully I’ll be able to get them out soon. Jonathan is currently in the Phillipeans for work so Jack and I are batchin’ it. I have a friend who has been a huge help so that I can at least go to the farmers market and get Jack’s food done. My next post will hopefully be about ECI(early childhood intervention) and the neuropsychologist that we saw.

the cute things toddlers do

2011-04-22T07:45:00.000-07:00

Jack is a pretty animated little dude. He tries to comfort people if they are upset and he likes to make people laugh. He also likes to give hugs and kisses, when he's in the mood that is.

Yesterday, Jonathan got home and Jack went to hug him. Jonathan picked him up and was saying hi to him when I came up to give him a kiss. I kissed Jack and then Jonathan. Jack then puts one of his hands on my head and one on Jonathan's and pushes our faces together and makes kissing noises. It was priceless. He repeated the process several times.

Totally melted our hearts!

What we wish you knew about pregancy loss

2011-04-15T11:20:00.000-07:00

I found this on-line, and most of it is so true for me and everything I've gone through in the last month. I can't believe it's been a month already because it feels like it just happened a few days ago. My body still hasn't recovered physically even though the doctor said it would only be 1-2 days. That was crap.

Anyways, here is the letter I found and I'll add a few comments here and there. (The letter is in blue, my notes are in black.) While some of this doesn't apply to me or the things I have encountered, it's remarkable how much of it does.

What we wish you knew about pregnancy loss:
A letter from women to their friends and family
by Elizabeth Soutter Schwarzer
I assert no copyright for the material. Please use it as you see fit to help women who have endured this terrible grief. Thank you.

Date: Sat, 23 Mar 2002
When women experience the loss of a child, one of the first things they discover they have in common is a list of things they wish no one had ever said to them. The lists tend to be remarkably similar. The comments are rarely malicious - just misguided attempts to soothe.

This list was compiled as a way of helping other people understand pregnancy loss. While generated by mothers for mothers, it may also apply similarly to the fathers who have endured this loss.
When trying to help a woman who has lost a baby, the best rule of thumb is a matter of manners: don't offer your personal opinion of her life, her choices, her prospects for children. No woman is looking to poll her acquaintances for their opinions on why it happened or how she should cope.

-Don't say, "It's God's Will."
Even if we are members of the same congregation, unless you are a cleric and I am seeking your spiritual counseling, please don't presume to tell me what God wants for me. Besides, many terrible things are God's Will, that doesn't make them less terrible.

This may be the one that bothers me the most. Because believe me, after going through this, I have several questions I'll be asking God when I meet him. Like why did I even have to know I was pregnant? We weren't trying, I had awful cramps and though I was starting my period, why not just end it then if it was going to end? Why did we have to see that little heart beat? If it was going to end, why let us get attached and know that after seeing the heart beat the risk of miscarriage goes down to less that 5%? WTF? And why did I have to carry the baby all the way to the end of my 1st trimester? Why did I have to have the horrible pregnancy symptoms with a dead baby for over a MONTH? How is that fair? So yeah, when people say that it's "God's will" or in his "plan", it makes me want to hit them. Screw whatever plan there is. I just want my baby back.

-Don't say, "It was for the best - there was probably something wrong with your baby." The fact that something was wrong with the baby is what is making me so sad. My poor baby never had a chance. Please don't try to comfort me by pointing that out.

I have a child with special needs. I KNOW what it's like. I live it every day and I am thankful for my special needs child every day. And while I have no idea how I'd handle 2 with special needs, that doesn't mean I would have loved her any less or sent her back or wanted her any less.

-Don't say, "You can always have another one."
This baby was never disposable. If had been given the choice between loosing this child or stabbing my eye out with a fork, I would have said, "Where's the fork?" I would have died for this baby, just as you would die for your children.

First, it's not really anyone's business if we are having sex to have a baby, having sex just for the fun of it, or not having sex at all. I've always found asking about other people's sex lives a bit weird. If people want to talk about sex, I have no problem with that, but asking about other peoples sex lives can be weird. And the truth is, I don't know if I can just "have another". No one really does. But I have had very similar issues that my mom had and it took her three years to get pregnant with me when she was 26. I'm about to be 32. No, we don't know if we can just have another. Thankfully, people haven't actually said this to my face. It is a concern in the back of my mind though. And we aren't trying for another anytime soon. I hesitate to wait too long because of our age and because of the problems I've had (endometrosis and fibroids and cysts) but I also need time to grieve the loss of my baby and to get my body back into physical shape so that I can have an easier time supporting a pregnancy.

-Don't say, "Be grateful for the children you have." If your mother died in a terrible wreck and you grieved, would that make you less grateful to have your father?

This one has been said to me. And how does being sad about loosing a baby make me ungrateful for my beautiful son? If you know me or have read this blog then you know how grateful I am for Jack. It has nothing to do with not being grateful for him, it's about being sad for the baby that I lost.

-Don't say, "Thank God you lost the baby early and before you really loved it." I loved my son or daughter. Whether I lost the baby after two weeks of pregnancy or just after birth, I loved him or her.

Thankfully no one has said this to me, but if they did they would get an ear full. My baby had a heart beat, she was alive. I saw her living in me, felt all of the pregnancy symptoms in the book, puked almost every day. Believe me, you don't do that for someone you don't love!

-Don't say, "Isn't it time you got over this and moved on." It's not something I enjoy, being grief-stricken. I wish it had never happened. But it did and it's a part of me forever. The grief will ease on its own timeline, not mine - or yours.

-Don't say, "Now you have an angel watching over you." I didn't want her to be my angel. I wanted her to bury me in my old age.

-Don't say, "I understand how you feel." Unless you've lost a child, you really don't understand how I feel. And even if you have lost a child, everyone experiences grief differently.

This one doesn't bother me much. I have been amazed at how many people have been through this. It doesn't make it any easier, but at least I know that I'm not alone in it.

-Don't tell me horror stories of your neighbor or cousin or mother who had it worse. The last thing I need to hear right now is that it is possible to have this happen six times, or that I could carry until two days before my due-date and labor 20 hours for a dead baby. These stories frighten and horrify me and leave me up at night weeping in despair. Even if they have a happy ending, do not share these stories with me.

My neighbor did this, and it didn't help. I think it was with the intent of telling me that I was lucky that I lost the baby early and not at 7 months. And sure, I'm glad that I was able to have a D&C instead of go through labor and delivery. Had it been only a few more weeks I would have because I was right at the cut off. However, it doesn't mean that I am any less sad or that loosing the baby in the 1st trimester is any easier.

-Don't pretend it didn't happen and don't change the subject when I bring it up. If I say, "Before the baby died..." or "when I was pregnant..." don't get scared. If I'm talking about it, it means I want to. Let me. Pretending it didn't happen will only make me feel utterly alone.

There have been very few people that I've actually wanted to talk to about it. I still feel somewhat like hibernating in my house but I am starting to be more social, mostly because I know that I need to and I have a 2 year old to entertain. So if I don't bring it up, please don't either. (at least for the next few months) I will most likely just shut down and not say anything. There are a very few people who can bring it up, and they know who they are. Also, I don't want to be hugged for 5 minutes or asked how I am every 3 seconds. I've been giving generic short answers. I don't want to have to comfort you or reassure you in my time of grief. If I do bring it up then yes, please don't ignore it, but I'd rather you ignore it than hound me about it.

- Don't say, "It's not your fault." It may not have been my fault, but it was my responsibility and I failed. The fact that I never stood a chance of succeeding only makes me feel worse. This tiny little being depended upon me to bring her safely into the world and I couldn't do it. I was supposed to care for her for a lifetime, but I couldn't even give her a childhood. I am so angry at my body you just can't imagine.

Again, no one has said this one, but it is true. I know logically that it wasn't my fault, but that doesn't mean that I don't feel somewhat responsible for the child that was inside me.

-Don't say, "Well, you weren't too sure about this baby, anyway." I already feel so guilty about ever having complained about morning sickness, or a child I wasn't prepared for, or another mouth to feed that we couldn't afford. I already fear that this baby died because I didn't take the vitamins, or drank too much coffee, or had alcohol in the first few weeks when I didn't know I was pregnant. I hate myself for any minute that I had reservations about this baby. Being unsure of my pregnancy isn't the same as wanting my child to die - I never would have chosen for this to happen.

This is another that hasn't happened, but if it does I will have some BIG words, that my child shouldn't hear, to say. Unplanned doesn't mean unwanted or unloved. We changed all of our plans for this baby and we can't change them back. It sucks.

-Do say, "I am so sorry." That's enough. You don't need to be eloquent. Say it and mean it and it will matter.

-Do say, "You're going to be wonderful parents some day," or "You're wonderful parents and that baby was lucky to have you." We both need to hear that.

-Do say, "I have lighted a candle for your baby," or "I have said a prayer for your baby."

-Do send flowers or a kind note - every one I receive makes me feel as though my baby was loved. Don't resent it if I don't respond.

I could not believe the outpouring of text messages, emails, and phone call that I got in those first few days and still people asking how I'm doing. It's been amazing and overwhelming. I didn't respond to any of it at first, I just couldn't. I had Jonathan answer the phone for the 1st week even. Just know that I do appreciate it and don't take it personally that I didn't respond because I didn't respond to anyone.

-Don't call more than once and don't be angry if the machine is on and I don't return your call. If we're close friends and I am not responding to your attempts to help me, please don't resent that, either. Help me by not needing anything from me for a while.

If you're my boss or my co-worker:
-Do recognize that I have suffered a death in my family - not a medical condition.

-Do recognize that in addition to the physical after effects I may experience, I'm going to be grieving for quite some time. Please treat me as you would any person who has endured the tragic death of a loved one - I need time and space.

-DO understand if I do not attend baby showers/christening/birthday parties etc. And DON'T ask why I can't come.

Please don't bring your baby or toddler into the workplace. If your niece is pregnant, or your daughter just had a baby, please don't share that with me right now. It's not that I can't be happy for anyone else, it's that every smiling, cooing baby, every glowing new mother makes me ache so deep in my heart I can barely stand it. I may look okay to you, but there's a good chance that I'm still crying every day. It may be weeks before I can go a whole hour without thinking about it. You'll know when I'm ready - I'll be the one to say, "Did your daughter have her baby?" or, "How is that precious little boy of yours? I haven't seen him around the office in a while."

It has been really hard to see my pregnant friends post updates on facebook. And to see cute tiny baby pictures too. It's not that I'm not happy for those people, it's just that it's a reminder of what I could have had. What I would have had. And it's really had for me to hear people complain about being pregnant. I know that it's hard, I'm not the biggest fan of pregnancy, but I would give just about anything to still be pregnant.

Above all, please remember that this is the worst thing that ever happened to me. The word "miscarriage" is small and easy. But my baby's death is monolithic and awful. It's going to take me a while to figure out how to live with it. Bear with me.

I shouldn't have made that last post

2011-04-08T20:08:00.000-07:00

Of course right after I made that last post bragging about how great Jack has been sleeping, he's been up at 5:00 am for the last 3 days. And last night we had to go in twice.

Crap.

Big boy bed!

2011-04-06T19:02:00.001-07:00

So let me just state for the record, that I was right about him needing a bigger bed. Jack is sleeping SOOOOO much better now. When he was still in his crib, he was waking up several times a night and would sometimes be up for over 3 hours at a time. We would have to go in 2-3 times a night minimum. It was killing me, especially being pregnant and already being exhausted from that. But for over a week now, we haven't had to go in. He has been up very early a few days, like 5 am early, but I would much rather get 5 or 6 straight hours of sleep than be up 3 times a night. The "little" guy just needed room to stretch out.

So, here is him in his bed!

He LOVES it. From the second they put it up, he was all over it. I put him to nap in his crib, which was still up, and he did well. That night we were planning on putting him in the crib again, just so he could get used to it being there, and he climbed right into his big bed and went to sleep. It was the easiest bed time in months.

The first 2 naps in the new bed took a while to get him to sleep. But now I can lay him down and leave and he will eventually go to sleep without fussing much. And bed time is much easier too. He was so ready to be a big boy. *sniff sniff* Because lets face it, I was ready to leave him in that crib until he was 8 if he was sleeping well in it.

And I really like the furniture too. It's very dark, black actually, and we (AKA: I) need to pain a few shelves. We also still need to move his seizure cam and get it set up to record again. But overall, it's awesome.

And yeah, Jack though it was pretty funny that daddy can fly.

Thank God for better sleep.

And me... I have had one heck of a time recovering. I was told 1-2 days and I'd be back to normal. 1-2 days my ass. It's been 2.5 weeks and I'm still working on it. I won't go into the gory details of one afternoon last week, but lets just say I had to call Jonathan home shorty after he got to work and it ended in an emergency trip to the OB's office to make sure that I wasn't hemorrhaging. Then we had Jack's birthday party, which turned out well (pictures to follow eventually). And then my back went out completely.

Staying at home with a 35 lb toddler who doesn't always follow directions well with a back that doesn't cooperate, hasn't been easy. From what I've read, this could very well be related to the surgery and my body trying to get back to "normal" or how my body is just reacting to stress. I don't know and honestly I don't really care, I just want it fixed. I've gone to the chiropractor twice and had a therapeutic massage which was extremely painful, but I'm really hoping that I feel better in the morning.

Oh, and phantom kicks while my uterus goes back to it's normal size are just cruel.

24 months

2011-03-30T20:16:00.000-07:00

Dear baby boy,

In a few hours you will officially be 24 months old. As I sit here typing this, I remember this time 2 years ago, timing contractions on my iphone. I had been having contraction for 5 hours and waited another 4 to go to the hospital only to be sent home because they told me I "wasn't in real labor". When the doctor told me that I wanted to punch him in the face. Not "real" labor? But I settled for waking him up at 5 am to scream at him that I need drugs NOW! Your birth will always be one of my favorite memories, it is what made us a family. You will never live down that it took 27 hours though. But it was when I knew I had done what I was always supposed to do... become a mommy.

We have been through a lot in the last 2 years. The medical stuff has added a lot of un-expected stress, but we continue to remind ourselves how lucky we are. You continue to amaze your doctors! Your neurologist thinks you are the cutest thing ever, and that is a medical opinion. He actually said at our last visit, "there is NOTHING wrong with this child" and he said it while laughing at how you were flirting will all of the females in the room.

And speaking of flirting, you are clearly a ladies man. It's really funny how you still gravitate towards the ladies. You are also the most polite little boy I have ever met. You know how and when to say "please" and "thank you" and you also blow kisses at the appropriate times too.

You of course have your opinions on things and do throw the occasional tantrum, but lets face it, you really are a toddler now. I can't deny it any longer, as much as I would like to.

But your little personality is really coming out and it is awesome! Your dad and I were talking the other day about how you are a really good mix of the two of us. I think you got the best of both of us which is more than we could have ever asked. You are hysterical and KNOW when you are funny, which makes it even funnier. You are very much a boy and you laugh when anyone burps or farts, which again is hysterical and makes us laugh which makes you laugh even more. You totally get that from your father! You can also be very stubborn and determined, which you get from me, and I hope that it actually aids you in dealing with all of the things in life that you are going to have to deal with. You have this great desire to explore and go at thing full force, but you are careful (most of the time) with things like climbing and steps and aware of what might hurt. Accept when you're around a swimming pool, then you just jump in and start swimming. You might have gotten that from me too :-)

Your vocabulary continues to grow on a daily basis and we are so glad that you have finally decided to talk! I love it when you see something and say, "WOW!" It's so cute. You also like to say, "tickle tickle tickle" when we take your socks off. People continue to tell us how cute you are. Your hair is amazing, your eyes are beautiful, and you are so friendly and sweet that everyone just falls in love with you. I kind of expect for people to fall for babies like that, but they are still falling all over you. And I have a feeling, that they will continue to and at some point I will be worried about it instead of thinking it's cute. Right now it's very cute for you to kiss all the girls at playgroup, but when you come home bragging that you kissed all the girls in kindergarten.... that might be another story.

So my dear boy, as we approach the hour of your birth, I may be a little weepy but it's only because of how much I love you. Because of how much you amaze me. Because of how perfect you are. Because of how much you have taught me and how you made us a family. Every day I am glad to be your mom. Every day is a new adventure and it's so great to watch you discover new things, even if it does start a little earlier than I think it should. To watch you learn how to communicate and to watch you interact with the world around you is what I look forward to every day. You make life so much fun little guy and I am thankful every day that I have you and that you are exactly who you are.

Happy Birthday Sweet Pea!
Love,
Mama

Something to look forward to

2011-03-24T22:46:00.000-07:00

This week has been difficult, to say the least. But Spring has sprung (and given us a taste of what summer will be like) and we have been enjoying being outside.

In fact, last weekend we even got out on the lake for the 1st time this year. And Lake Travis is my happy place. Has been all my life. And what I love is that it also seems to be Jack's happy place.

Jack LOVES boats and the lake. A few weeks ago we were in the car and the truck next to us was towing a boat. He spotted it and got all excited. He pointed and said, "boat boat boat boat" (which sounds more like "bot") and then made motor boat noises. So cute.

This was last year on the boat.

Those of you who have known us for a while know that we like to take vacations. And we like to do vacations up right! But you also know that we can't really take Jack far from home right now because napping in the car is almost ALWAYS a seizure trigger. It's one of those things that we hope will change with time, but we don't expect it to be anytime soon. I'm guessing we are just going to have to wait until he doesn't need naps anymore, but only time will tell. You can't imagine what we go through to make sure he doesn't sleep in the car. Our whole day revolves around it. It can be frustrating at times but just one of those things you do as a parent. Sometimes, what is best for your child comes above everything else and having the least amount of seizures possible is what we have to do. I'll take being stuck in Austin (not a bad place to be stuck by the way) over causing my child further brain damage. (And we totally appreciate those of you who come to see us because of this!) Thankfully, my mom came up with a way for us to have a vacation that (I think) will work for Jack. And we can't wait!

We will be staying on a house boat on lake Travis for a week. This house boat!

My brother and his family will be coming too so Jack will get to play with his cousins. He LOVES Grace and is twice as big as her even though she's 13 months older.

But the two are very cute together and seem to enjoy each others company.

So, sleeping arrangements are going to be interesting. It's a very large house boat, but we're also going to have 6 adults and 3 children there. But then again Jack has been sleeping great (at night) when we've been away the last 2 times. (I promise an updated post about all of that before too long). I am hoping that we can actually get him to nap in a bed because I think that will be better for him, but it's one of those things that we will play by ear and do what we need to do. So the plan is that if he has seizures, we can simply bring him home to sleep at night and then head back out in the morning, because it would only be about a 20 min drive. It's a brilliant plan really. Plus we have a full kitchen for all of his food and meals. I actually don't know how we would get on a plane with keto anyways. It's just too much to deal with.

So YAY! I can't wait! Not to mention the hot tub on the top deck and the slide off the back of the boat.

just to get this post over with

2011-03-19T20:13:00.000-07:00

We went on Friday for our 12 week appointment and NT scan on #2. Turns out baby's heart stopped around 8 weeks and I haven't naturally miscarried.

In fact, I haven't had any signs of a miscarriage. I still feel VERY pregnant, which really suck because I've been "pregnant" for a month now with a baby without a heart beat.

After our 1st ultrasound I was slightly worried because I KNEW our dates were right and baby was measuring 5 days behind. But the doc said everything was fine and that because we saw a strong heart beat there was only about a 2% chance of having a miscarriage, so I didn't worry. Plus the ultra sound even says "+/- 5 days". He also told me that I was approaching the week where symptoms are the worst and that they should ease up a bit after my 7th week, so about 1/2 way through my 8th week when the nausea let up just a tad, I did wonder if something was going on but the doc said that it would happen. I almost called and asked for a sono then, but I knew they would have thought I was crazy.

Other than those things though, I'm still exhausted, still have to take nausea meds once or twice a day, still puke on occasion, have to take tums at night for heart burn, still gag on my toothbrush, and still have to get up 3x a night to pee. Knowing that I've been going through this for a month for no purpose, really suck.

I was finally starting to get excited about having another baby. I was so ready to be out of my 1st trimester, which if you go by my original dates, I am. I was starting to show a little because even though the baby stopped growing, the sac continued to grow. My body still clearly thinks that I'm still pregnant.

The nurse said that it was probably a chromosomal abnormality of some kind, T16 being the most common. And God knows that I don't need another special needs child, but that doesn't mean that I would love a special needs child any less or send her back. Either way, it just sucks. Before all of this our little family of 3 was perfect. Then we had a surprise, adjusted to it, and have now lost it and it just feels like our family is incomplete. Someone is clearly missing. That doesn't mean I want to try again right away or even anytime soon because the thought of being in my 1st trimester for 6 months out of a year makes me want to throw something.

Given that we were at the office on a Friday afternoon, they couldn't get me in for a D&C until Monday morning. The nurse said we could wait and let my body take care of it on it's own but because of how far along I was it would be a very painful and long process. And my body has had a month to do something on it's own and it hasn't, so we scheduled the procedure. The only good thing about it is that my doctor will be back in town and there to do it and at least it will be over with.

I really just want Monday to be over with.

I'm upset of course, I don't want to talk to anyone, and I go back and forth between being okay and being in tears. I just want Monday to be over with.

tests we will be doing on the wee one

2011-02-22T18:23:00.001-08:00

The chances of Jack having TSC were 1 in 6,000. The chances of a baby having downs syndrom is 1 in 750. Go figure.

But even with those stats and both Jonathan and I testing negative for TSC the chances of having another baby with TSC increases to 1-3% because of Jack, that is approximately 1 in 100 to 1 in 33. And 33 is a MUCH smaller number than 6,000.

The only way to know for sure before the baby is born is to do an amnio. The amnio does carry some risks and we wouldn't terminate either way so we are passing on that test. I thought about it for a while, but the idea of losing a healthy baby because of running a test just isn't worth it to me.

Our doc does 2 high level ultrasounds, one at 12 weeks and one at 24. We will be focusing a lot on the baby's heart because if TSC is diagnosed before birth it is because of heart tumors. We are also adding an additional level 2 ultrasound at 32 weeks. After she arrives we will be borrowing the woods lamp that is in Dr. Kane's office (because of Jack). I know exactly what shelf it sits on and I will be going over this baby's skin very carefully. If both of those come back clear then we will wait a few months to take the baby to Dallas and have a blood test done. Honestly, I won't be completely at ease until I see that blood test. My OB isn't worried and is mostly doing the extra ultrasound to put my mind at ease. At the same time, if she does have heart tumors before birth then we need to know about them so that we can make sure that little heart is okay after birth.

Thankfully I know what infantile spasms look like and have an in to the neurologists so if baby does start having seizures, they will be treated right away.

And yes, I did refer to the baby as "she". I think it's a girl. It's just my gut feeling and I could be completely wrong. Jonathan thinks it's a boy. If we go off of who is usually right, I win :-) We'll know sometime in April.

Round 2

2011-02-20T20:48:00.000-08:00

I've been debating about how to write this blog post for a while now. I've even started it a few times and it just never looks right.

So, here it is. A few weeks ago we were surprised to find out that I'm pregnant. We are still somewhat in shock, but it is wearing off. I'm horribly sick and have morning sickness morning, noon, and night. And I'm exhausted. I now nap every day with Jack and on the rare occasion that I don't get to nap I can hardly hold my head up for the rest of the day.

I had my 1st appointment on Monday and everything looked good. EDD is October 2nd. Baby has a strong heart beat and there is only ONE, thank God.

I'm feeling sick and overwhelmed mostly. I really don't know how I'm going to be able to take care of Jack and all of his needs plus a newborn. EEK! Thankfully, a lot can change in 6 months.

Jack hasn't been sleeping well, which doesn't help matters. We are debating about switching him to a big boy bed in hopes that it helps. But I'm worried it's just going to make it worse. Being up 1-5 times a night doesn't help the whole tired thing either.

Ok, I'm headed to bed now. The 1st sono isn't much of anything to look at, so I'm not going to post it, but we have our 12 week sono in a few weeks and should have some good pictures from that.

22 months

2011-02-04T20:06:00.000-08:00

Dear Jack,

A few days ago you turned 22 months old. And while I am always amazed at how quickly time passes I am painfully aware that your 2nd birthday is only 2 months away and that before long you will be a full fledged toddler. Holy crap!

We have had a lot of doctor's appointments this month, the most important being with the neurologist. Because you are still having some seizures, we are increasing your ratio on the diet which means more fat. How is that possible, one might ask. Well, it's been an adjustment. And around the same time you decided that you were going to fight about eating at every one of your meals. I can't even count the number of times that I've had to leave the room to calm down enough to come back and encourage you to eat. And I've even had to literally force-feed you a few time, which is awful. For both of us.

I spent about 8 hours of cooking over 2 days to re-stock the freezer and have a bit in there to pull from. Right after doing that you decided that you don't want ANY of those meals. You now refuse to eat eggs too, which used to be your all-time favorite and our go-to food if we couldn't get anything down you. For the most part you have been a very good eater, but the last few weeks have been challenging to say the least. You have also had a runny nose for the last 3 weeks so it's impossible to tell if the lack of interest in eating is because of the snot or the ratio change.

But that being said, I wouldn't trade it for anything. Ok, a cure, I'd trade it for that. Anyways, it has helped you so much and our lives are very normal most of the time. Sure it involves a lot of cooking and planning and thinking but it has given us such a reduction is seizures that we can go to playgroup, we can have a trip to the park without worrying that you're going to fall because of a seizure, and it had reduced the worry to the point that we can plan and do normal kid things. If we can get these last few ironed out, I would be the happiest mommy on the planet.

And I don't regret any of it for a second. I sometimes worry that people will look at our struggles and think that we somehow love you less, or wish you were different. Knowing what we could be dealing with, you are nothing short of a living, breathing, miracle. I haven't held back in sharing what we're going through because it might help others and because there is no point in hiding the challenges or pretending that we don't worry. But our love for you has never faltered baby boy. In fact, I think that it is because we love you so much that we worry and struggle sometimes. But because of you, I am a better person. Because of TSC I have so much more compassion then I ever did before. I certainly never knew how strong I was until you came along. The love of a mother is an amazingly strong force, even a little scary at times and I never knew I was capable of loving someone like that.

You are the sweetest child I know. You love to give hugs, blow kisses, say thank you, help put your dishes away after eating and sometimes you even help clean up your toys. You can light up a room and make anyone smile. You are the biggest flirt on the planet and always try your hardest to get the attention of any girl around. You always do something to melt my heart and even when I'm frustrated with your toddler ways, you are the cutest thing on the planet.

We have started taking swimming lessons again and are having a blast. There are only 2 other kids in the class and you are a rock star. You jump in and swim while holding your breath for 4 seconds without thinking it's a big deal at all. You start to sing the song before the instructor even does and you are a back float champion. They have never seen a little boy so comfortable and content to float on his back in the water like you do.

You saw snow yesterday for the 2nd time and you weren't too impressed. All you wanted to do was swing but your swing was filled with snow and when you shook your glove off to clean out the swing you cried because it was cold.

The other thing you are really into doing is dancing. Man, can you boogie. We don't watch TV often, but sometimes I put on Veggie Tales just to watch you do this to the opening music.

I love you my sweet monkey, more than you will ever know.

Mama

An EEG in pictures

2011-01-18T18:57:00.000-08:00

For those who have never been though a 24 hour EEG with a young child, it's impossible to even properly describe. Picture your worst nightmare, make it last 24 hours (or one week like our last EEG) and throw in a very cranky toddler.

The only things that have been more stressful are the seizures themselves and the lack of anything working to treat them.

I didn't take any pictures of hooking him up because it took both me and Jonathan holding him down to get it done. It sucks. I HATE the process almost as much as I hate seizures. When we do the 20 min one in the doctors office it is less stressful. The tech's over there are much calmer and more experienced plus they don't have to cement them to his head. The whole process just sucks and according to the tech's it will until he 4 or 5. God help us.

The only up-side of this EEG, and the reason I was able to take pictures, is because we actually got sent home with the monitor on! YAY! We got to be at home, out in the world, and most importantly, out of a tiny hospital room tethered to the wall.

When we left the hospital we headed to the mall because it was cold and wet outside. We rode the carousel a few times, and the train that runs in the mall. Jack LOVES the carousel, has a frequent rider card, and has been known to cry when we make him get off. He had a good time walking around and it wasn't to obvious that anything was going on. Either that or people were too scared to say anything.

When he was ready for a nap we headed to the car. The doctor actually wanted us to let him nap in the car so that we could get a seizure on the EEG. The problem was that the car wouldn't start. Long story short, the battery was dead and my mom's boyfriend, Ron, came and rescued me and Jack while Jonathan dealt with Sears and the battery. I suppose it would have been worse had Jack and I been on our own and I had no food for him, EEK! But it was sucky timing. I dropped Ron back off at his house and drove Jack around in his car. He had 1 seizure for sure and another episode that I suspect was a seizure.

That evening my mom came over to hang out with the little man. She also brought us dinner and wine! And our friend Rita came over too.

This is what his head looks like all bandaged up. The EEG leads are glued (AKA cemented) to his head and then wrapped. He pulled at it for a little while but eventually left it alone.

Then he had to wear the backpack, which he did really well. He has an ace bandage on his head here because at 3 AM we had to wake him up to re-wrap his head because everything but the leads came off. He didn't go back down until 5:30. Just add EEG tech to my list of mom duties. That's one that they didn't teach me in college.

I love this hat! And it was the best thing to put over everything they tape to his head. Dr. Kane ran into us one of the times we were at the hospital and he really liked it too :-)

And this is the way we all felt about the whole thing.

He did get bundled up to go on a car ride. And this hat and gloves set just cracks me up.

That night I had a pallet on the floor of his room. I "slept" with my glasses on and the monitor right in front of me so that every time he moved I could check and make sure he wasn't tangled, or pulling on his head, or having a seizure. I got maybe 3 hours of very interrupted sleep. Thankfully Jonathan took over early in the morning and let me sleep another 1.5 hours.

And he did a lot more car riding around the house too. You can kind of see the leads that are glued to his head in this picture.

24 hours later it was back to the hospital to get un-hooked. It's much easier and quicker than the hooking up process. Part of what sucks is waiting for 45 min each time, even though we're there on time. And as soon as he saw the tech again, he turned the other way and tried to get away. Thankfully he didn't fuss when we picked him up and took him, but I was concerned at his reaction.

We got back to the room and the tech took the box out and said, "I've never seen this code before on the screen. I'm not sure if it recorded." I stopped breathing. I was going to have a breakdown if it didn't record. She called another tech and found out that one of the batteries came lose, but that's why they put in 2 new batteries when they hook them up. Thankfully it did record and everything was fine. But Oh My God, don't do that to us.

This is what his head looks like under all of the bandages. I think there are 27 leads. Each one has to be measured, marked, and the cemented to his head so you can see why it takes a while. Then they all have to be tested to make sure they work.

The they just bathe his head is acatone mixed with baby oil and give him a scalp massage to get them off. And after he gave the tech a big hug, said thank you, and blew her kisses. He is the sweetest child ever.

As for the results, we won't know anything until Thursday when we see the neurologist. I know that he had 1 seizure. He also had what I've been wondering about while he slept in his crib, so I'm really glad that they'll be able to tell me if it is a seizure. He did not have one of the new seizures that he's been having and I'm just now beginning to wonder if he's having yet another kind a seizure. So he's now had infantile spasms, partial seizures, what I think are tonic seizures (or maybe tonic clonic, I'm not sure which) and now possibly complex partial seizures and/or myoclonic drops. That is far too many seizures for a child who's not even 2.

I'm not sure what's going to happen at the appointment. I suspect we may be sent to Houston for a scan thus sending us back down the surgery road. But I also think that his meds need to be reduced and maybe the diet tweaked a bit.

I'm not sure what is best for Jack at this point, but I do know that we have to do what we can to get the seizures to stop. I rarely have pity parties for us because I know that it's not going to help. And we really are the lucky ones. Jack is still the child who everyone looks at and thinks that he's completely normal, I'm just worried that if we don't get these seizures to stop, he won't remain that child. And while I do not pity him in any way, I still worry for him.

Random picture

2011-01-16T20:05:00.000-08:00

Jonathan took this picture when we were at the TSC camp. This was basically how Jack and I slept each night. He woke up ever 1/2 hour to an hour so the only way to go was co-sleeping. This would be why we don't go places with him often. But the picture is cute, even if it's grainy because Jonathan knew better than to use the flash and risk waking us up!

a day in cloth

2011-01-06T19:00:00.000-08:00

There was this funny game on the cloth diapering board to take a picture at every diaper change. They were super cute so I though I'd share here too.

But first, let me update you on the medical stuff. The cardiologist appointment went okay. The good news is that the tumors didn't grow. Really, that's great news. The tumors also didn't shrink but it's hard to tell considering he's a moving target for the sonogram tech. We go back in another 3 months to do this all over again. If they don't grow again then we don't have to go for 6 months.

We continue to battle the seizures. We got a new monitor that can record any movement while he's sleeping. We have no idea if we are seeing an increase in seizures because we now know they are happening or if they really have increased. I think they really have increased, but who's to say.

I emailed one of the seizures to the neuro and he started Jack on yet another drug and wants to do a 24 hour EEG next week. The good news is that the EEG with be at home! We will take him to the hospital to have him hooked up and then send us home with a little backpack. His seizures look very different now. We see the neuro in 2 weeks (from now) and I am going to ask about reducing his other meds, because this is getting crazy.

And that brings me to today. Because he started the new med last night, today was hell. H-E-L-L! He was super cranky and I have been hit no less than 50 times. If it continues tomorrow, I'm calling the doctor. I don't know if I will survive another day like that.

Anyways, here is how he started the day and the best expression of how the day actually went. He's wearing an antsy pants pull-up cloth diaper. He got too tall for the previous diapers so I went with something should get us through potty training. It can be snapped on like a diaper or pulled up like undies. I really like them.

Then in his happy heiny cow print because I though he was going to take a morning nap, which he didn't. But I can add a lot of stuffing to it so that it can hold a lot.

So we got dressed to go out. This isn't a great picture, but it was made by a work at home mom at Dolce Baby. Unfortunately, it is almost too small.

Then he did have a nap, thank God. And then he was super man! Because lets face it, this kid really is a super hero. This diaper is almost too small too, but it goes with the shirt :-) And I don't have a link because I can't remember where I got it.

And because even super hero's do house work. (Another antsy pants)

And really the boots just make this outfit!

cloth diaper pictures

2011-01-03T12:27:00.001-08:00

Pardon this post for some cloth diaper pictures that I am listing to sell. I'm linking here so I can post all of the pictures.

Bumgenius 3.0 one-size cloth diaper in excellent condition. All come with 2 inserts, most inserts are new. $10 each or $70 for all 8.

If you search really really hard you can see a few spots of discoloration, maybe. All look great.

Velcro is in good condition, all diapers were hung dry.

Some normal pilling, does not effect use.

Bumgenius 3.0 AIO organic one-size diapers. $12 each or $50 for all 5.

Very clean and soft!

These have by far been my favorite! There are a few spots on the inside where you can see some worn out spots. Does not effect use.

Bella Bottoms, hemp. Each has only been worn a few times. $10 each or $15 for both.

Some slight discoloration to the inserts.

For all diapers $120!

Extra stuffers! $2 for each on the left, microfiber. $4 for each on the right, microfiber/hemp (g-diaper inserts)

Getting nervous

2010-12-28T14:20:00.000-08:00

I'm now officially nervous about tomorrow. Tomorrow morning we take Jack back to the cardiologist for his repeat echo to check on his heart tumors. It a matter of if we're going to spend the rest of the week relieved and having fun at home (catching up on cooking and swimming at the gym) or if we're going to be scrambling trying to figure out how to get Afinitor, the new drug the FDA approved for brain tumors in TSC kids, paid for. Because using it for heart tumors is an off label use the insurance won't cover it and we got denied for MDCP (Medically Dependent Children's Program), which is a whole other post to itself and which we are appealing so I'm on the phone with doctors offices constantly as it is, so it would cost about $3000 a month. We are hoping that NORD (National Organization for Rare Diseases) will step in and pick up the tab like they did with the ACTH that cost $60,000. Or was it $80,000.... I don't remember.

Anyways, you may need a degree in TSC to understand that last paragraph and all of the acronyms. Basically, we are praying that his heart tumors have shrunk, or at the very least, not grown anymore. My little man has enough to deal with as it is and this mama does too.

God bless us every one

2010-12-25T12:32:00.000-08:00

Merry Christmas!

I'll post pictures later but I wanted to wish everyone a Merry Christmas. If yours is 1/2 as good as ours, then you are very lucky.

Last night we were up until 2 am putting together a train table and finishing his book shelf that we started before he was born. He went to bed very late for him because he took a late afternoon nap yesterday and we went out last night but was up at 7:30 this morning, bright and early, ready to see what Santa brought.

It has been a great day though. Round one has come and gone, we got a cruise on Lake Travis and an awesome gift card to Class Cinemas and a hard drive to back-up all the pictures. Not to mention we got accused of stealing my grandmother's car. And Jack of course cleaned up well too.

Next is round 2 when Jonathan's family comes over, and we have lots of left over alcohol from the early crowd so it should be fun! And of course, more presents!

Crappy Anniversary

2010-12-20T21:23:00.000-08:00

I'm going to randomly throw pictures from our family photo shoot into this grumpy post to add something fun to look at. Although great pictures deserve a post much better than this long complaint let's face it, sometimes things just aren't fair.

I think the best thing that I can say about our 7th anniversary is that we're all still alive, nothing tragic or traumatic has happened, and thankfully the marriage is fine.

We had big plans to spend our first night away from Jack. I agonized over if we should go or not. My mom is great with him, they love each other and in fact when he gets tired of me he asks (and sometimes screams) for GiGi. At the same time, there is no doubt that Jack has had a rough road and there is a lot to manage when it comes to caring for him. I worried what would happen if he didn't eat all of his dinner thus not getting all of his evening meds. What if he gets picky about food and doesn't eat what I leave for him? The list of worries about his diet, his seizures, his heart, could go on forever. At the same time, Jonathan and I could both use a day away. Even if just one night to have to ourselves and Jack has been pretty stable for a while so we decided to take the plunge and just do it. We weren't going far so we could come back if we had to. For me to not wake up every time Jack rolls over and grab the monitor to see if he's having a seizure and to just get a good nights sleep would make me a new person. Because even though Jack is (mostly) sleeping through the night, I don't know if I ever will after what we've been through.

We were planning on going to the little town of Fredricksburg, about a two hour drive (close enough that we could rush back in an emergency) that always does things up so great for the holidays. I couldn't wait for the lights, the German food, and the vineyards. What more could you ask for?

Ok, I could come up with a few things.

First, Jack started to have a runny nose. It only went down hill from there. I had hopes for quite a while that it would clear up... but it didn't.

And to make a long saga short, because I'm tired and want to sleep, we are all sick with some nasty virus and the trip is off. I had my annual OB visit and internal sonogram (fun fun) where I was told that everything is fine but it does not feel fine at all. I come home to Jack not wanting to finish his dinner and Jonathan about to pull his hair out (his own, not Jack's) and everyone is cranky and miserable.

I think the main reason that I feel sorry for myself and am throwing this pity party is because I do so much. And I know that most mom's do a lot, but a keto mom has 10 times more to worry about, to think about, to plan about and to figure out. I wouldn't trade the diet or what it has done for my child for anything, I would just like to get away for a day and at least pretend that I am just a normal parent.

So we didn't buy each other Christmas gifts or anniversary gifts because we were going away on this great romantic trip and instead we all shared some nasty little flu-like virus. I just want to pout a little more and then go to sleep for about a week but in reality I won't sleep much at all because I'm a mama with a sick baby who also has epilepsy and I wake up every time he makes a peep. Thankfully Jonathan is off for the next two weeks so we can all be cranky and sick together. Sure we can re-schedule our night away, but Fredricksburg won't be the same as it is this time of year and God only knows when it will actually happen because of Jack's health and everything he has going on. We go for his heart echo next week and he may be started on some kind of oral chemotherapy so we know we won't be going anywhere anytime soon if that happens.

But really, I can't whine too much because after all I have a wonderful husband who would swim through shark infested waters to bring me a glass of wine and the most beautiful child in the world.

Now lets pray we're all better by Christmas.

Back on the wagon

2010-11-29T19:19:00.000-08:00

I'm so hesitant to take pictures now! I'm still in shock about the hard drive and clinging to 2 small hopes. 1st, Jonathan is going to try and recover some of the pictures off of the cards from the cameras. We'll see what happens. 2nd, I have a friend if Portland who has a guy who might be able to do something with it. We've had 3 professionals tell us that it is toast and there is no way we can get anything off of it, but I haven't quite given up yet.

So, I was debating about taking Jack to see Santa this year. Mostly because I didn't want to pay the $20 to do it. However my mom went on vacation and left me her credit card! It's fun spending someone elses money.

Last week we were at the mall and we rode the train. Lakeline Mall now has a little train that goes around. It's crazy expensive, $5 a person, but Jack LOVED it. He was running after it saying "choo choo tain". At one point he ran through the area where Santa was and no one was there visiting Santa so Jack stopped to tell Santa about the train. It was very cute and after that little encounter I figured he would do pretty well with him. Which of course he did.

One of the things we've been doing is getting Jack to drop a nap. It's been rough. He still wants the other nap. Either that or he goes to bed at night and sleeps for 2 hours and then wakes up wanting to play because he thinks that he just took his 2nd nap. So then he's up until midnight. I'm hoping we all survive this transition. He does fine with 2 naps, but then he sleeps for 4 hours during the day and wakes up early and we can't do anything socially. If he only takes 1 nap we can go to story time at the library, or swimming at the gym, or meet up with our playgroup. It needs to happen, but it's tough on all of us.

So in the mornings we need something to do. We have to get out of the house around 10 or he's laying on the floor with his blanket sucking his thumb. It's pathetic. Today was a trip to the mall to see Santa and it went well. We were the first ones there so we didn't have to wait and Jack had quite a bit to say to him. I have no idea what he was telling him, but he sure did chat a lot. Santa was very entertained. And he was a good Santa too. He had a real beard and let Jack tug on it. He was very friendly and just like what you think Santa should be.

Anyways, here are the pictures I took with my camera.

The one that I bought was goofy. He has one eye almost closed and he's sitting funny. But I'm not sure which of the 3 is the best. They are all a bit goofy.

He didn't sit still for long. Really it was about 2 seconds. This kid is a busy boy and is on the move. Constantly. All. The. Time.

This would have been cute had he actually been looking anywhere near the camera.

This was just cute. It was taken in the play area after our visit with Santa.

A good reason to have a blog

2010-11-15T18:48:00.000-08:00

So Wednesday I went out to dinner with a friend. We had a great time but I got home late. I went to check my email before I went to bed and in the middle of it the whole computer just froze. It also sounded funny. I had to force a shut down and when I tried to re-start it, I got nothing.

To make a long story short the hard drive is dead and it is un-recoverable meaning all of my pictures from the last 10 months are gone. I have a few, very few in places like face book, walgreens.com (from having pictures printed) and here on the blog. None of the pictures are full sized, they are all much smaller, but at least I have something.

I'm missing his 1st birthday, baby George, our TS walk, my friend Rita's wedding, the list goes on and on.

I keep telling myself that being home with my baby, spending my days with him and him having his mama to care for him is much MUCH more important than having stuff. In this case the stuff being a large back-up hard drive to avoid things like this happening. Because those hard drives are about $300 and we have medical bills out the wazoo, and a crazy diet that is super expensive, and a child that is growing very quickly. I could work and we could have the money to buy things like a big hard drive, but then I would have pictures that someone else took and I would miss the experience of my baby. At the same time, I can't pretend that I'm not upset by it. I love taking pictures and this blows.

My daddy has already told me that he is getting us a time machine (back up hard drive from Apple) for Christmas so hopefully we'll avoid this in the future.

My Jack-O-Lantern

2010-10-31T23:16:00.000-07:00

Jack had a good Halloween!

He didn't quite understand the whole, ring the bell, get a treat thing, but he did have fun socializing and seeing everyone.

And I mean, EVERYONE!

This is him with princess Cassey (and daddy). Cassey always comes out to great us when we go check the mail and is a very sweet little thing.

We hung with the neighbors for a bit and then of course he had to swing. He though it was pretty cool that he got to swing in the dark.

And after his bath he was checking out the loot, which was the first time he was interested in the bucket! While he was eating dinner I went to the neighbors houses and handed out little toys for them to drop in his bucket instead of candy. He would have been fine with collecting candy and then handing it over, I don't think he would have noticed a thing, but it was good practice for us for what to do next year when he is more interested.

All-in-all it was a good evening. It was fun to socialize with the neighbors and this was the first year that we have run out of candy from having so many kids come by. It was super fun though and I know that next year will be even more fun!

set back

2010-10-30T22:10:00.001-07:00

Well, Jack had a few seizures.

I still haven't been able to pin down what from. I don't think that it could be from the dried fruit that someone gave him, but I have read that forbidden food can cause seizure up to 10 days after and the first one was only 2 days after. That story is a whole other post but I have never been so livid with another parent. The other thing that changed was his nap schedule. We finally dropped the morning nap and we were able to do things like story time at the library, and play dates. But we're going back to two naps for the time being. Drats! We've also started giving him his meds right before we put him down for bed so that it's closer to 12 hours between doses. That means we have to pin him down and use a syringe to get some of them in, which is no fun at all. We (Jonathan and I ONLY) were planning on going away for 2 nights for our anniversary in December but because of all of this, I'm re-thinking it. I don't think my mom could get the meds in him with the syringe. I wonder if we get all of it in him because as hard as we try, he still manages to spit a little out.

So here are the things we've changed:

meds 12 hours apart (or very close to it)
added 2nd nap back in
cut out kool-aid
NO sleeping in the car

Two of the three seizures happened while he was sleeping in the car seat, which means that we aren't going to let him sleep in the car anymore. Of course that means that we don't go far from home and that we always head back an hour before nap time so that we can get here. And when I think about it some of the seizure that we saw towards the beginning of the diet were also while sleeping in the car. It means that the furthest we go for a long while is the doctors office at Dell Children's. The only exception to that is next weekend when we go to TSC camp (which is already paid for). We are really excited about it and the plan is to travel while he is awake and then attempt to get him to nap there. It really limits what we can do and who we can see but thankfully the weather is great right now and we have some good parks that are close.

Jonathan has been working a ton this week and I've been on the phone all week with the dietitian, the nurse, and our old dietitian trying to figure out what is causing these. I'm also officially done breast feeding so I think my hormones are all over the map, which really doesn't help.

I'm left wondering if this diet is going to be his miracle. We were two months away from starting to wean his meds and now the doc wants to increase them instead. (I'm supposed to check in with him on Monday and I want to ask questions before we do the increase.) I'm feeling like we are out of options, because if this doesn't work we are back to the surgery option which wasn't looking good to begin with. The chances of this being HIS cure is only 30% but after getting seizure free I was hanging my hat on him being in that 30%, now I'm not sure anymore. The good news is that I have heard stories of kids having break through seizures and then returning to no seizures for over a year. I suppose I was just hoping that for once my kid had caught a break.

My new favorite number

2010-10-21T20:05:00.000-07:00

Dear Jack,

So you are actually closer to 19 months now than 18 but I figured I would write you a letter anyways. And this is a special letter, because it's written on a special day. I feel like I want to climb on top of the roof and shout for all the world to hear that you have now been seizure free for two months. TWO WHOLE MONTHS! I've hesitated to say too much or to show my excitement because it could all change in an instant. I love looking at your seizure tracker and seeing a big fat Zero there every day. In fact, zero has become my new favorite number. And I'm starting to think that maybe, just maybe, we've found our miracle. We still have a long road ahead of us but when we hit the two year mark of you being seizure free, I think I really will climb on top of the roof to celebrate. Or maybe just take you to Disney.

The last 6 months have been exciting and challenging as you have successfully turned into a toddler. We wondered if you would ever walk as you waited just long enough to make me start to worry. But then you took off and now I have a hard time keeping up with you. In fact you like to move so much that running errands with you has become very difficult. The fact that you don't want to hold still coupled with the fact that I can't give you anything to eat in the shopping cart usually leaves me wanting to pull out my hair and buy some really good ear plugs. And we are at the grocery store several times a week because we always seem to need some kind of magic food for your diet.

You have also developed quite the vocabulary and are like a little parrot. The other evening we were driving home and got passed by a motorcycle that was going at least 100. Daddy yelled "idiot" really loudly and you promptly repeated it. It was very hard not to laugh. Thankfully, you haven't said it since and neither has daddy. You pick some funny words to say too, like purple and cracker. You don't eat crackers so I have no idea why you say it or what it means. You will also sit a the piano and play and sing, which is really stinkin' cute. I love it when you are in your crib in the mornings and you start singing the dada song. You make it up as you go along and it is clearly a song about dada. You could make up a song about mama on occasion too.

And speaking of your crib, lets talk about sleep for a moment. I really REALLY appreciate it when you sleep until at least 7. I can't complain about 6 because for months you woke up at 5 on the dot but on days when you sleep until 8 or 8:30, I feel like I've won the lottery. Because I'm up late preparing your meals, cooking, putting dishes away, weighing out things and trying to figure out how the heck to get the exact number of grams of egg in the bowl because eggs are so dang sticky that it's next to impossible to get the right amount. A little sleep-in is much appreciated.

So my big boy, and when I say big I mean the average size of a 2.5 year old, we are still keeping a close eye on you between the heart tumors and the seizures (or lack there of). I'm still nervous and stressed and this parenting thing has taken me on a whole new road that I didn't expect, but I couldn't have asked for a better kid to go on it with. You are amazing and sweet and funny. I love how you say "weeeee" when you go down a slide and how at story time at the library you have to hug every other mom there, you little flirt. You make me smile every day and because of you I am so thankful for all that we have and for every day that I get to be your mom.

Love,
mama

quick update

2010-10-09T22:01:00.000-07:00

I'm working on a short video since Jack just turned 18 months old. Holy Cow, he's now closer to 2 than to 1. Makes me a little sad.

But I wanted to let everyone know what's going on with his heart. A bunch of cardiologist got together and talked about him. The general consensus was to wait 6 months and do another echo since the tumors aren't actually causing a problem right now and these things are SUPPOSED to shrink. Anyways, our guy wants to take another look in 3 months.

In the mean time, we have to watch for signs of distress. We are listening to his heart on a regular basis and we're supposed to call if it starts sounding different. We're also supposed to go in if we notice that he's sleeping a lot more, lethargic, pale, having trouble breathing, etc.

I'm glad that we don't have to do something drastic like chemotherapy right now but I also have mixed emotions about just waiting for something awful to happen.

Here are his latest dance moves:

A tough day

2010-09-20T18:24:00.001-07:00

Here is a quote from a TS mom. She wrote a blog post about her daughter and doing tests and getting bad results, something that we will have to deal with for the rest of our lives. Anyways, here is the quote:

"and you know there will be a next time, and it makes your heart hurt.

Still, you are so not ready when the next time comes. It’s a mugger, and you’re not even walking after dark."

And it's from here: http://jenniferlawler.com/wordpress/?p=747

Tomorrow marks one month that Jack will be seizure free. I can not tell you how thrilled I am about that. I was beginning to wonder if that would ever happen. If we would ever get more that a few days freedom, but here we are, a full month. I'm still terrified, and I run into his room when he cries out in the night thinking he's going to be seizing but he's not, he just needs a sip of water and his blanky and to go back to sleep. We have side effects from the diet to deal with, like reflux I think, and we can only guess as to what's going on and what's making him not eat because he can't tell us yet. But the benefits far outweigh the side effect, even if that means spending 1/2 a Sunday in the ER because he won't stop crying inconsolably for hours and you think he might have kidney stones.

At the same time, as we hit the one month mark of being seizure free, we also got bad new. Jack has his follow-up ECHO today and we found out that his heart tumors have actually "grown significantly" instead of shrunk, like expected. And it is like being mugged, like having something stripped away when we were being so careful and though that maybe, just maybe we'd finally catch a break.

I don't know what's next yet. I'm waiting for a call back from the cardiologist after he consults with other doctors. I'm waiting for a call back from the TS clinic. It's a lot of waiting.

And don't ask me why the font is all funny. I tried fixing it and it didn't work, and I don't have the energy to fix it.

It's nothing like a gluten-free diet

2010-09-17T22:14:00.000-07:00

I've had several people say that they know how difficult a special diet is because they (or their children) are on a gluten-free diet.

So let me first say that I get that a gluten-free diet is a pain in the ass. We did it with Jack for 8 months, the entire time he's been on solid foods so I know what it's like. It can be a pain, but honestly it's just more annoying than anything. Gluten is in everything and you have to always read labels. Now when I read a label not only am I looking for gluten but I look for hidden carbs. Even things that have zero calories can still have hidden carbs. I can't tell you the number of times I've gotten something home only to look at my list and not be able to use it.

With a gluten-free diet you can still go out to eat, with the ketogenic diet you can't.
With a gluten-free diet you aren't restricted to how many calories you can have each day, with a ketogenic diet you are.
With a gluten-free diet you get to drink almost anything, with a ketogenic diet there isn't much you can drink.
The list could go on and on. My point is, they are NOTHING alike and while I appreciate people trying to relate, it just get on my nerves when they compare the two.

I know that people aren't trying to offend me, they are trying to relate and say that they understand. They just don't know that they don't really understand.

So I decided to make a few video's to show what the diet is really like. This first one is about what it's like to feed Jack, how we get his meal into him and why it's important to get a balance of all of his food in.

I did the video very spontaneously so please ignore the mess. And because I had none of this planned, it's not completely comprehensive but it's close. I have no idea why it shows up so flippin' big. Oh well.

a dose of cuteness

2010-09-09T20:26:00.000-07:00

Jack is quickly outgrowing all of his clothes. He needs a 3T in the waist and a 12 month in the length for pants. It's crazy. Thankfully I've managed to find him some pants with stretchy waist bands. As you can see, they are long but oh so cute and they fit his big cloth diaper bum well.

I sure hope that he slows down on the growing soon. My mom took us shopping and we now have some 2T things for when the weather gets colder and I really hope that he doesn't need 3T for the end of the winter. Last winter was long, too long and too cold so I'm hoping this one is a little kinder.

This is what he does when we say "touch down" and then he claps. It is very cute.

My house may be messy, but my baby is happy!

You just thought I was going to make a post without talking about the diet... NOT. Anyways, I got to talk about the ketogenic diet on national radio yesterday. I listened to it today and I didn't sound like a complete idiot, phew.

And last night Jack threw up. It was awful. He did his normal midnight wake up thing but instead of taking a few sips of water and going back to sleep he barfed everywhere. He was then up until 2 am. He also ate very little solid food today and did mostly his cream with breast milk combo. He finally ate a few bites of a keto cookie for dinner and then some avocado.

I'm planning on making him a "milk shake" in the morning for breakfast and sticking to all in one meals for another day.

seeing spots

2010-09-01T20:47:00.000-07:00

A friend wanted to see pictures of Jack's TS spots so I though I would post them here. When the doctor first turned on the woods lamp (AKA black light) we were all in shock at how many spots he had. I searched and search this kid looking for these things before the appointment and I couldn't find anything at all. The neuro now keeps a woods lamp on the shelf in his office in honor of Jack.

Now that he's had some sun, some of the spots are more noticeable. I circled the spots in the first picture and then posted a picture without the circles. If you click on the picture, it will get bigger.

I think he has one on his other cheek too, but I'm not sure. I try to keep sunscreen on his face if he's outside.

His back. He has one one his bum too, but I didn't take pictures of that :-)

I'm not sure what that dark spot in the middle of his back is. It's new and it could be from the fall (ok 2 falls) he's taken lately or it could be TS related. Only time will tell.

His cute little belly. The one on the left side of his abdomen is the largest one that is ash leaf (kind of) shaped. The one on his left ankle is a typical big and blotchy one.

And without

And this one, just because it's cute.

The magic diet

2010-08-30T19:37:00.000-07:00

We've now been on the ketogenic diet for about 2 months. I spend an average of about 2 hours a day dealing with Jack's food weather that be assembling meals, cooking food, meal planning, or a combination there of. It's exhausting and my brain hurts from all the thinking. There is a lot of thinking involved especially around our schedule and where we are going to be for what meals or who is going to be here with Jack and what he will eat best for them.

Really, this is the biggest pain in the ass ever.

However, it is the first thing that has truly made a difference in Jack's seizures and that right there makes it all worth it. I will slave, have swollen feet for as long as it takes, stay up until midnight and only get 4-6 hours of sleep, and have a headache from thinking so much for as long as it takes. For the first time in all of this I feel like I'm actually able to do something to make a difference for him. And that alone is priceless.

When we were first starting to diet I had a lot of anxiety over all of this. I still have some but I feel like I know what I'm doing now and have a handle on things. That is until I started seeing Halloween decorations everywhere. I tend to use my niece Grace as a point of reference for Jack and what stage he will be at because she's just a year older. And then I remembered her at the halloween festival last year and being so excited about playing the little games to collect candy and trick-or-treating. And how Jack can't have candy and how I'm even too paranoid to take him to the festival in fear of someone giving it to him and him not understanding that he can't eat it.

I think what I'll do is load the neighbors up with little toys. I go to the dollar store or something and get little things for them to hand out to him. They all know Jack and his story so it won't be an issue at all and I'm sure he will think it's great fun. And I hate to not take him to the festival because of that but I also hate to be the parent who constantly hovers over her kid.

And then there is Thanksgiving and Christmas and honestly, the thought of that makes my head want to explode. I see it working one of two ways. Either we be the hovering parents constantly or we just don't go. Really, it's enough to make me want to pack up and just go find a cabin in the mountains for the holiday. Just the three of us. I don't think that's very reasonable but I can tell you that there is no way in hell that we are doing 5 different Christmases again. And I may need drugs or large amounts of alcohol to survive the whole thing.

In all honesty I don't think Jack will care to much about his food being a little different. It's all the other kids possibly handing him something, or him stealing a cookie from them and constantly having food out on the counters that he could get into or someone could un-knowingly hand him... that's what makes me want to barf.

Uuug. But until we actually have to deal with that, I will continue to thank God daily for this magic diet, for what it has done for my baby, and pray that we can get the last few seizures ironed out. Every seizure free day is a step towards a normal life. And we will do whatever it takes to make it work.

Guess what...

2010-08-18T12:04:00.000-07:00

I have almost a whole day to myself! A WHOLE DAY! I thought I had a dentist appointment this morning and then I have a chiropractor appointment this afternoon (with a massage!). So I lined up a sitter for the whole day. My friend Alisa who is currently an un-employed nanny is taking care of Jack all day. Then I realized that the dentist appointment is actually NEXT Wednesday. Oops. Maybe I "accidentally" did that on purpose? So anyways, I've had the day to myself, no pokey things in my mouth, and I get a massage. It's just brilliant!

I saw a movie earlier today, now I'm sitting in a coffee house drinking hot tea and playing on the computer. I'm going to work on Jack's baby book and then go to my appointment. Woo Hoo!

This is the longest I've been away from Jack EVER. I can't stop thinking about him, about what he's doing, if he ate well, if he's having a good time, etc. But I think some time away to slow down is a good thing.

since I've been neglecting you

2010-08-12T20:44:00.001-07:00

I'm too tired to actually come up with something clever to say right now. Jonathan is working a lot more right now so I'm even more busy that normal around here but at least I'm managing to keep up with Jack's food.

We go on the 26th to get all of the test results from our hospital stay. The doctor said that they look better than he expected. I have no idea what that means, but it sounds good. And his genetic testing came back that he does have TSC1 so now Jonathan and I have to be tested which won't happen until September because we have to drive back up to Dallas for it and Jonathan can't take time off work for that right now.

Anyways, here are at least a few pictures.

Toddlers are like that drunk college friend

2010-07-26T06:19:00.000-07:00

Have you ever noticed that?

They are so much fun, they are always dancing around, doing something crazy.

They fall over and trip all the time, and they act like it's no big deal.

They talk a ton but don't make much sense and you say "that's great honey" even though you don't have a clue what they are talking about.

They can go from laughing to crying in under a second.

They will randomly get naked and run through the house.

They need your help putting them to bed.

They will randomly give you hugs in the middle of a conversation and tell you they love you.

If you take their drink away from them, they freak out.

They will talk to anybody, doesn't matter if they've never met before.

Your needs are completely none of their concern.

A younger cousin!

2010-07-24T09:03:00.000-07:00

Jack now has a little boy cousin! George Henry Harris was born late Wednesday night and weighed 7 lbs 9 oz. He's perfect and cute and cuddly.

I headed down to be there with them but the little guy was in a rush and arrived just 20 minutes after they got to the hospital. But I got to go down the following day and do his first photo session as well as get in lots of snuggle time.

I forget how tiny they are when the are fresh.

Jack is expecting an additional younger cousin sometime in late December or early January.

Language Burst

2010-07-06T06:18:00.001-07:00

I might at some point sit and blog about the craziness of the hospital. About how I completely lots it with a tech, how I got the doctor on the phone one night at 9 pm when they told us our scan was being pushed back, and about how he went into the hospital in ketosis on his regular diet when part of the reason for being there was to get him into ketosis under supervision. I also don't have a lot of free time because of the hours every night I spend preparing his food. But for now, I wanted to write about Jack talking!

I don't think most people would understand him and half the reason I understand him is because he does the sign with what he says! I can't even tell you how excited I am about it. I've been working with him for the last 6 months on signing and he's finally starting to pick up on them and mimic them.

He's been doing the sign for "more" for a while now. Then in the hospital he started doing the sign for bubbles and saying it too. It sounds more like "ubble" but when he does the sign and says it, it's pretty clear. He will even ask for them by doing the sign. Very cute.

The other thing he's been saying is "uh-oh" and even though it's very unclear and more of a noise than a sound he does it when he throws something on the floor. It was very cute in the hospital when we were down in prep area for his scan and he had a bucket of blocks and would throw them on the floor, say "uh-oh" and see how many nurses he could get to play his game. It's not so cute at the dinner table, more annoying.

And the last sign and word that he picked up is "all done". He will do the sign and day "ahh duu" or that's what it sounds like. I don't think anyone would recognize any of these as words but we're calling his first official word Bubbles and his little voice is so cute.

Into the hospital we go

2010-06-27T22:15:00.000-07:00

We check in tomorrow morning at 7 AM. UUG.

I spent 4 hours cooking this afternoon but I think I finally have all of his food ready for the week. The good news about that is that I don't have to think about what to feed him, it's already ready.

He's done pretty well with the no nursing thing. He will still root around a bit and get upset when I don't give him any BUT he does accept it and will let me rock him. I'm very excited that he will let me rock him and snuggle him without nursing. I've been spending lots of time pumping, which sucks (pun intended) but Jack is worth it.

If you are the praying type, please pray that we get what we need from these tests, that he has enough seizure activity to actually do the tests, that they don't stick him too many times, and that we are out of there as quickly as possible. Don't pray for patience because we all know where that leads, just pray that it flies by.

This surgery evaluation and this diet are huge steps for us. And hopefully, one of them will be our saving grace and will stop his seizures.

Keto F&Q

2010-06-27T22:04:00.000-07:00

I'm just going to post the email that I got that has the facts and questions. It's very informative and will hopefully give you a better idea of what we will be dealing with. Part of the diet is that Jack can't have anything touch his skin that has carbs in it because he could possible absorb them and it could cause him to have a seizure. So all of our products are being put in a box. All of his soaps, sun screens, shampoo, bubble bath, diaper wipes, diaper creams, and toothpaste are being replaced with things that are Keto friendly. He also can't take children's meds of any kind so no tylenol or motrin, we'll have to split an adult tablet and get that into him instead.

How the diet works is that it forces your body into starvation mode and makes you produce ketones. When the ketones are high enough about 30% of the time it stops seizures. Jack is starting on a 3:1 ration so that's 3 grams of fat for every one gram of carbs or protein. It's a bit brutal and cooking the meals made me loose my appetite. The doctors keep saying how hard it is on families to follow, and it will be. We have no idea what we'll be doing about Christmas and Thanksgiving. But it can't be any harder than watching my baby have seizures day after day after day.

Anyways, here they are.

Frequently Asked Questions....

Starting the diet is a little daunting. Hopefully some of these FAQ's will
help as you begin to prepare for initiation and/or face some of the issues
that come up with the diet. Some of this may not make sense to you at this
point, so it may be helpful to print out a copy for your files!

What products can we get to help the diet be more palatable?

Sweetners: Many parents use Stevia, a natural sweetener found in most
health food stores. Sweet 10 or Sugar Twim may also be used. Most families stay
away from nutrasweet (aspartame) since it can increase seizures in some children

Drinks: Getting the fluids in and providing an enjoyable drink during
the day is always important.

Koolaide...the flavors that do not contain any thing that may
affect the diet are Black Cherry and Lemon Lime. Buy the unsweetened packs and
use a keto friendly sweetner. Look for flavors without Maltodextrin if your child is sensitive.
Adding a little club soda will give it a fizz.

"Fruit Waters"... Glaceau Fruit Waters: they are available in natural foods type grocery stores
and even now in some more regular supermarkets
like some Safeways. Good flavors are watermelon, cranberry mint, honeydew, strawberry banana,
raspberry lime. Many parents use 'fruit waters' like the Sam's Choice "Clearly American."
Most of these do contain Aspartame...a seizure trigger for some kids. If you use them, or any of
the diet sodas, be sure to watch for any signs that the aspartame may be a trigger.
Some of the Œfruit waters‚ also contain sugars...be sure to read the label.

Bickford Flavorings...great carb free flavorings to help create tasty dishes...
They are non-alcoholic, contain no sugar and no salt. Hundreds of flavors are available
by calling (216)531-6006 with credit card orders.
Bickford Flavors 19007 St. Clair Ave., Cleveland, OH 44117
"sweetening ice cream, making popsicles, making "keto-drinks." So, far, I
use the strawberry, chocolate, vanilla and peanut butter to make ice cream.
I use the apple, with a little stevia, for "apple juice." They also have
colorings -- the beet red, annatto and brown are supposed to be the most
natural." DeEtte

What can we do about constipation?

Constipation is a common issue with our keto kids. These are some of the options parents on the list
are using:

Cal/Mag/Zinc II from Whole Life (1-800-748-5841). It doubles as the calcium supplement and constipation
remedy and is keto friendly.

Milk of Magnesia (original flavor) which can be purchased over the counter.

Mineral Oil is another option

Many times upping the amount of Magnesium will help.

Some have had success with Aloe Vera Juice

What do I do about a fever and pain????

Feverall acetominaphin suppositories...best for younger children given the way it‚s admninistered!
Can be purchases at most drug stores like Walgreen‚s, Eckerd‚s, or Osco‚s.

Adult Motrin...break tablet to get dosage right for older children.

Tempra Infant Drops

McNeil Brand Tylenol adult strength cut down to the appropriate dose.

How can I get keto friendly meds when my child is sick?

H-B Drugs. Full service compounding pharmacy specializing in
creating customized medications in order to most appropriately suit a patient's unique
needs with a special interest in pediatric epilepsy and the ketogenic diet.
1-888-383-2010 or 1-201-997-8488 FAX 1-201-9978488 located in N. Arlington, NJ

Ridge Road Pharmacy Ridge Road Pharmacy will compound any med in a keto friendly style.
They also compound keto friendly vitamin supplements. 1-800-Ridge Rx

For cold symptoms... Scott Tussin Original Clear Five Action Cold and Allergy Formula (sugar
free)
I called around and found it in stock at a pretty local pharmacy. It can
also be ordered, or you can get it shipped from some place in Rhode Island
1-800-638-7268

How can I figure a snack into my child‚s meals?

Though meals should be kept as equal and evenly spaced as possible,
many have found it helpful to add a snack during the day...either
to ease snack time at school, for an after school snack, or a pre bed time treat.
One method is to subtract the number of calories you want for the snack from the
total cals for the day and plan the snack using those calories. Use the remaining
calories split among the three meals.
A bedtime snack often helps keep the ketones up during the night, sometimes
helping to control night time or early morning seizures.

Where do I get a meal planner to plan meals at home?

One that's very easy to use and free is available for download at
http://www.ketogenic.org Just scroll down towards the bottom

How can I find nutritional information for foods I want to add to the meal planner?

The USDA site with info regarding nitritional info is at http://www.nal.usda.gov/fnic/cgi-bin/nut_search.pl

At least he has my eyes

2010-06-24T19:19:00.001-07:00

And that's about it. Just look at them!

Jonathan when he was a baby.

2010-06-23T11:36:00.000-07:00

Dear Jack,

For almost two years now my body has kept you going. From the time you were just a few cells right on into toddler-hood, you have been a little leach living on me, and I say that in an enduring way. Let me tell you kid, pregnancy was hard. Some people love it and I am not one of those people. But the moment I saw you, you were worth it.

Then came the breast feeding, which has had it's up's and down's. Honestly, I was more worried about the breast feeding then I was about giving birth. I knew that I was leaving with a baby, one way or the other. I didn't know how exactly I was going to feed that baby.

One thing that you will come to know about me as you get older, is that I'm stubborn. I'm sure that will frustrate you at time, as it does me too, but that stubbornness got us through the rough patches of breast feeding. First there was the pain. "They" say that is only lasts a few days. Well, "they" were wrong. For me it lasted at least 6 weeks. Every time you would latch on I would hold my breath and cringe. I'm sure some of that had to do with the fact that you were slightly tongue tied and therefore I was bleeding, but still, it hurt.

Next came the phase where you had some strange issue. You would eat for a minute, then scream bloody murder. It lasted a good 3 months and was so upsetting to both of us. I just wanted to be able to feed my hungry baby and you my little love, just wanted to eat. To this day I still don't know what the heck was going on but eventually you outgrew it.

Then all hell broke loose and you stared having seizures and were put on steroids. At that point you started nursing every 2 hours around the clock. It was worse than having a newborn. When you have a newborn you expect that to last 2-4 weeks. It's brutal and painful but you spend the majority of the time snuggled in bed with a brand new little human to love and stare at. Those 2.5 months were filled with terror and worry and were some of my hardest times as a parent so far. The lack of sleep only magnified those feelings but through it all the two of us had that time together and when I was nursing you, everything was okay.

After you were off the steroids came the task of my body having to adjust to less of a demand for milk. Over the next few months I had 2 rounds of mastitis and over 15 clogged ducts. I also pumped enough milk to donate over 300 oz to the milk bank for other babies. I became a pro at unclogging the pipes. During this phase I considered cutting you off. I was always in pain, always attached to a pump, and just worn down by everything. But it was flu season and you had been through enough already in your short little life so I kept at it.

I guess between 9 and 10 months of age I finally put you on a nursing schedule. You were getting wiggly when we were nursing, you often times seemed un-interested and I kept getting those dang clogged ducts. It was the only solution I could come up with. Thankfully it worked great. I never denied you boob time but I only encouraged it 3 times a day, in the morning when you woke up, before your afternoon nap, and when you were going down in the evening. This has been the golden phase of nursing. After about a month of this I was able to stop pumping, thank God, and my body adjusted. I haven't had a clogged duct since and you have been nursing wonderfully during those times.

If it were completely up to me, I would just leave things as they are for a while. When I first got pregnant my goal was to nurse to one year. I contemplated giving up a few times before that mark but was very glad that I didn't. Then when a year came and everything was going so well I figured we'd go to 18 months, if you wanted to. The benefits of the anti-bodies you get from breast milk make it worth it. That plus it's going well and being cheaper than buying milk made it sound like a good plan.

My number one goal in nursing you was to provide the best possible food and nutrition I could. Part of that is doing what we need to do to get the seizures to stop. With that, we are starting you on a special diet to try to control them. It has about a 30% chance of working wonders and we owe it to you to try. So with that, as of today, I am no longer breast feeding you. And it kills me to do this. We have been reducing the sessions quickly over the last few weeks and it hasn't been easy. I keep telling myself that this is what is best for you. That we have to try everything before we do surgery and this is simply a part of that. One constellation, if there is one, is that you can have some breast milk mixed with heavy whipping cream which you seam to love. That means that I have to pump, again and I have discovered that my pump is going out. Great.

Pumping isn't fun. It's time consuming and doesn't feel good, but you are worth it. And if for some reason this diet doesn't work out mama will still have milk. So, if at that point, my precious baby boy, you would like to nurse some, it's all yours. Most people would just stay weaned after going through it once and you may not go back to it, but I want you to then you can. Know that I will always do everything I can to keep you as healthy as possible. What you need is my number 1 priority and it always will be.

So I'm sorry that I'm taking the boob away and I'm really sorry that I won't nurse you when you're all hooked up to the EEG in the hospital next week but I will always give you hugs and kisses and I'll hold you as much as you want.

Love,
Mama

Apparently, we're the hippies

2010-06-14T06:14:00.000-07:00

Jack is napping so I'm just going to hit "publish post" when he wakes up, we'll see how far I get.

We met with the nutritionist on Friday. It was okay, but you should have seen the look on her face when I told her that we don't give Jack artificial sweeteners, nor do we plan on giving them to him. I wanted to turn to Jonathan and say, "Do I have something on my face?" because I swear I spoke english to her.

They DO cause brain damage in rats. Yes, it's in large quantities and yes, they are rats but this is a child who already has brain damage and this diet it to deal with brain issues. Call me crazy, but it seems completely backwards to give him something that could cause more damage.

Jack has never had saccharin and while he's little at least, he never will. He has also never had high fructose corn syrup or hydrogenated oils. We call them death food around here and for over a year now we have all avoided them all together. He also doesn't get MSG and as little soy as possible, but I do know that soy has been in a few things. We read labels, all of them.

Jack will have to take vitamins because this diet is lacking in a lot of ways and she gave us a powder to try and give him. He's not a huge fan. She did say that we could give him Scooby Doo Vitamins instead but of course those have artificial sweeteners. I'm sure we looked at her like she had just told us to feed him cyanide tablets.

That being said she gave (AKA: is billing us for it later) something called KetoCal. It's a formula that kids on this diet are put on. There is this whole little recipe book using this formula. Oh yeah, and it's about $35 per container. Ouch. It's also for babies who aren't on solids yet. She gave us 2 cans, one is for the savory recipes and the other is for the sweet. The first ingredient on the sweet one is Hydrogenated Soybean Oil. WTF? Really, after we went on and on about not giving him all of this crap, she gives it to us anyways? I seriously wonder if she believed me when I told her that HE DOESN'T EAT CRAP. It's either that or she thinks that there is no way we can do this without the crap.

And on that note, I will admit that compared to other parents, I'm really crazy about what Jack eats. God forbid I want him to be healthy. God forbid I set him up right from the beginning and don't feed him all kinds of carbs and sweets that are addictive and that create picky eaters. Not only do they create picky eaters but it has been shown that if they don't eat sweets for the first 3 years, then they won't want them as they get older. This isn't just about feeding him right, it's about setting him up for the rest of his life. And look what being so picky has given me, I have a child who will eat just about anything I put in front of him, he likes chicken livers, vegetables, and salmon is his favorite food. Aside from this genetic disorder that is no one's fault, he is extremely healthy. He rarely gets sick and he is a very happy kid.

Now that you've read my ranting about food I guess I'll go on to discuss how the diet actually works. And with that sentence, Jack is up, guess you'll have to hear about that later. Or you can read about it here. Charlie's Foundation

New lay out

2010-06-11T20:15:00.000-07:00

What do you think?

I know that I need to try and make the header a little bigger to fit across the top, but I'll work on that later.

It was just time for a change.

Things to do

2010-06-08T08:07:00.000-07:00

I realize that list of things for me to do isn't exactly exciting, but it's helpful. We are starting the ketogenic diet when we go into the hospital on the 28th, both the docs agree that it needs to be tried, so that adds a whole lot more to do and organize before we go.

TS CLINIC RELATED
*Make list of questions for TS clinic.
*Done Get vaccine record.
*Laundry/Pack
*Travel food

HOSPITAL RELATED
*Figure out toys for the hospital.
*Buy a few new toys for the hospital?
*Partly Done Knit a hat to go over Jack's gauge helmet.
*Cook Jack's food for the hospital. (This isn't something I have to do but hospital food sucks and he's going to be on a super strict diet so I'd rather have yummy, organic, homemade food than frozen mushy hospital food.)
*Done Re-schedule his 2 appointments (ophthalmologist and pediatrician) that were scheduled the week we are in the hospital.
*Done Get another set or 2 of zippered pj's.

DIET RELATED
*Done Make list of question for the nutritionist.
*Partly Done Get supplies and containers for ketogenic diet.
*Get and read "the keto kid"

That's all the medical things I can think of right now. I'm sure I'll think of more as the week progresses.

bringin' him up right

2010-06-07T18:01:00.000-07:00

Some of my favorite memories from my childhood are from spending time on Lake Travis. That being said, there is no doubt that my children will likely spend as much time as possible there too.

Right now the lake is full, the weather is hot but not too hot, and the water temp is perfect!

This was the look that he had on his face at first. He just had no idea what to think or what was going on.

But once he adjusted to the whole idea, he had a blast.

And loved watching the water.

Of course he wanted to be in the water. He wasn't a huge fan of the life jacket but did better with it than most babies do. It was difficult for us to hold him in the water as we were trying to float on cousins, but the swim platform was a big hit. The water would come up through it and he though that was great. He also though it was really funny that daddy was swimming.

While we were out we went to a floating restaurant and he really liked watching all the fish!

He had a little snooze on the way back to the marina. And napping on the boat is the best. And he slept really well last night.

Just an update

2010-06-04T20:44:00.001-07:00

I have pictures I need to pull off my camera and a news letter to write, but I simply don't have the energy right now. So, you get this pathetic excuse of an update. But hey, at least it's a post.

So we saw the neurosurgeon on Tuesday, the genetic doc on Thursday, and we see our regular neuro on Monday. They all share the same office and nurses so we've seen them all a lot this past week. Not to mention the countless phone updates they get from us.

First, the surgeon. All things considered, it went well. We really liked the guy. He was very personable, spent plenty of time with us, and has even done some research in TS and just had a paper come out. Jack really liked him too. Although he prefers flirting with the nurses. We are being checked into the hospital on the 28th to do some tests to see if Jack is a surgical candidate. One of the nurses, Tiffany, got us in quickly. There is usually a 4 month wait but she saw we were coming in and she worked her magic for us.

Jack will be hooked up the an EEG for 3-5 days. And if that hell isn't bad enough they will also be doing a SPECT scan. We may also have to drive to Houston to get a MEG scan, but that would be later. The longest we've ever been hooked up is for 2 days, and that was before he was on the verge of walking.

We will figure out where to go from there. We might start the Ketogenic Diet then, which is a HUGE lifestyle change for all of us. Basically, no eating anything that isn't prepared in our kitchen. ANYTHING. Everything has to be measured out to the gram and it's so strict that he can't even have tylenol because of the sweeteners and there are only certain kinds of soaps and sunscreen he can use. It's bizarre. I don't know how breast feeding plays into it, that's one of my big questions. It's basically a no carb diet, meaning only meats and very few veggies. It's extremely challenging, but it has about a 30% success rate. Ideally he would be on the diet for about 2-3 years and then weaned off of it. The problem with Jack (and TS kids) is that the brain damage is still there so weaning the diet might cause the seizures to come back.

And Jack has a higher success rate to fully recover from surgery if we do it before he's 2. The surgery has about a 60-80% chance of stopping the seizures for good. But the risks... lets just say that they may have to put me under too while he's in surgery.

So, we are doing a med change. Again. We had 2 seizure free days this week, which was the most we've had in months. But then today he had 9. Each day seems to be a total crap shoot.

Jack remains the cutest, sweetest, most lovable baby ever. He is tall, now 33 inches and almost walking. Yesterday he took 4 steps. He gladly walks holding onto someone hands now, and I didn't think he would ever do that and he continues to love to push his pushing toys. He has also started signing! He knows the sign for "more" and uses it with gusto. It has cut down on the fussing for more food. We're working on other signs too, he just hasn't started doing them yet. And he loves it when people clap for him. It's super cute.

Ok, that's all for now. He is in bed and these days we don't know if he's going to be up at 5:30 or sleep until 8.

2010-05-31T20:31:00.001-07:00

We went down to Port A for the holiday weekend to start a new family tradition. We were there with my dad and his girlfriend Mary, my brother, sister-in-law, and toddler Grace. It was a good time, but the mosquitoes were hell. I tried to take Jack on a morning walk and got 63 bites. I'm still itching like crazy. Jack had a good time at the beach. But on the second day a guy pulled 3 sharks out of the water right where we were swimming. They were small and they generally stay away from people, but there were a ton of people there and yet he pulled 3 out on one morning.

That look on my face is, don't get that thing any closer to my child. And Jack is just ready for a nap.

Jack wasn't a huge fan of the sand, but he loved swimming in the ocean or maybe I should say the shark infested waters. But he had a blast. He was not a fan of the sand though. He kept wanting to chew on all the sand toys but didn't like the sand in his mouth. And he would rub his eyes and get sand in them, it was all a big mess.

These 2 had a good time hanging out together.

And Jack LOVES his cousin Grace. She was upset and he was trying to comfort her. He would try and make her laugh, he would look at her face and try to help her, and he would hug her. It was adorable.

And then he tackled her. He is a boy after all.

We came home a day early because he wasn't sleeping well and was having a ton of seizures. I don't think Jonathan and I could have taken another night like that. He did great in the car on the way home though, which was awesome.

And speaking of seizures, we have a surgical consult tomorrow. Because the meds aren't working they are talking about cutting out the parts of Jack's brain that are causing the seizures. How the hell they are going to do that without putting me under too is another question.

Walking for Jack-A-Roo

2010-05-22T17:30:00.000-07:00

Our walk was great!

Last weekend we headed to Dallas on Friday. It takes about 6 hours to get there. Not because of the traffic or distance, but because we are traveling with a baby. A baby that isn't the biggest fan of the car. He does much better than he used to do. He used to scream bloody murder the whole time and now he just does it some of the time. It's an improvement at least.

We had a great time Friday evening hanging out with Jesus and Patty and some friends from the area. The kids, Jonathan and Nicholas played so well with Jack. It was super cute. We had a game night that was a blast, and hysterical.

Then Saturday was the big walk. The weather couldn't have been more perfect, it was in the low 80's and overcast.

It was good to meet some of the other families. And we raised $4,700! We came in 2nd place as far as fund raising goes. We got an award and everything. We didn't stay long enough to actually accept the award because Jack fell asleep and we had already been there for 4 hours. But my mom accepted it for us and I'm glad she was there to do that.
Yes, I look like a dork here, but Jack was having fun and being a ham.

There were lots of walkers there! And Dallas raised a total of $75,000.

Jack wanted to be carried some too.

Jack really wanted to play in the fountain at the park after the walk. Finally I just stripped him down to his diaper and let him at it. Thankfully we had his swim shirt in the car to protect him a bit.

This was just a good one. Nicholas got right in the camera and said "can you see me?". It was cute.

And lastly, after we got home we all got sick. I got it the worst. I've had either strep or bronchitis, and it was bad. I'm still coughing up crap. And it's extremely difficult to take care of a baby when you're sick. Jonathan got a sinus infection so he hasn't felt great either. And Jack has had a runny nose that thankfully hasn't turned into anything else yet. It's still running though.

Happy Mother's Day

2010-05-09T20:20:00.000-07:00

To all the mother's out there:

Thank you for permanently altering your body to birth an infant that looked more monkey or alien than you would have anticipated. For enduring hemorrhoids, clogged milk ducts, mastitis, and thrush. Thank you for the sleepless nights that morph into interrupted sleep that will last until our children leave the house. For putting your wants, desires, and often fashion and hair styles on the back burner. Thank you for wiping boogers, kissing owies, changing diapers, wiping poopy butts, snuggling hurt feelings, being the rock when another kid hurts your kid and having the restraint to not kill them. For letting go when you needed to, even when it rips your heart out.

Who would have known that you would have become expert artists, cooks, budgeters, nurses, scheduler, cleaner, referee, therapist, fort maker, driver, and doing all of it while constantly multitasking and planning with at least one kid hanging on you every step of the way.

For Mothers Day, know that the only people who truly get it and appreciate what you do are other mothers. So from one mother to another, thank you for all you do.

Go Arizona (and ramdom updates)

2010-05-07T07:35:00.000-07:00

First, I must give a huge shout out to Netty and Jameson! Netty is a friend in Arizona and her little boy Jameson is Jack's age. They walked and raised money for Jack at the TSC walk last Saturday. They raised $150 in Jack's name and Arizona raised $30,000 for TSC.

There is still a lot to do for our walk. The Houston people decided to drive to Dallas and walk with us there so that's one less city but more walkers with Jack. But we added one too as Jonathan's sister and brother-in-law and our niece are going to be walking in San Antonio. There isn't an official walk there but they have t-shirts and are helping to fund raise and are going to walk for Jack too. So there is still Colorado, Dallas/San Antonio (on the same day) and Oregon. I think ours in Dallas NEXT WEEKEND is the next one.

I've just about got all of the shirts ordered but as soon as I think I do, more people say that they are coming and I have to add to the order. It's a good problem to have! And we're doing great with the fund raising. If you haven't donated yet, there is still time. http://www.firstgiving.com/jack-a-roo And for those of you who have donated, thank you very much, you're support means a great deal to us.

In other Jack news, he's going through a med change. The lamictal was making him cranky all the time and it wasn't stopping the seizures. He was still have an average of 2/day and he would almost always have one in the morning. It was odd. But today is the second day on the new med and he hasn't had any in the last day and a half!!! While that is very exciting, I want to gouge my ears out with a dull object. The poor kid is miserable. Anytime we mess with the dose of the lamictal he gets fussy. So we're doing that, plus we're adding a new med, and he's teething.

It's hard to sort out what the crying is coming from. And when I say crying I mean red-in-the-face, throw himself on the floor, snot running out of his nose, crying. It's like having a 1-year-old with colic. And it goes from the time he wakes from his morning nap, until he goes to bed at night. It breaks my heart to see him so upset for so much of the day. If we're outside he goes into dull moaning mode which is at least an improvement, but when it's so hot late in the afternoon we can't stay out for long.

I saw a lump in his gums while he was screaming bloody murder and I'm pretty sure that he's getting a molar in. He's had a fever off and on of about 100.4 for over a week. I even took him to the doctor last week to get his ears check and the doc said that everything looked good. So yeah, it's been a rough week. Hopefully it will get better soon. Thankfully the weekend is coming up so that I at least have some help.

And at the beginning of the week my laptop crashed. After buying another hard drive, it's back up and running. I have more space for more pictures now. And yesterday my car exploded. Ok, that may be a tad bit dramatic, but we had to have it towed from the house to the shop. Jack and I met Jonathan at the gym down south for swimming and lunch (the only time Jack wasn't screaming yesterday). After I asked Jonathan if he heard a rattle that I heard. Then on the way home things stared to happen. Long story short, a bit of smoke was coming from under the hood by the time we pulled into the drive way. I'm anxiously awaiting the call from the mechanic and praying that it's not going to cost us an arm and a leg. I love that jeep.

I think that's it for now. I'll have some good zoo pictures to post soon. (The lap top crashing has slowed that down) We drove down to Houston on Monday to meet some friends at the Houston zoo and had a blast and we're driving to San Antonio tomorrow for a zoo trip there. 2 zoo destination trips in one week. It's a lot, but it's been fun!

Earth Day

2010-04-23T06:59:00.000-07:00

Ok, technically Earth Day was yesterday but whatever.

We didn't do anything specific. Jack really wanted to go on a walk, and with the weather so nice we usually go on a long one in the afternoons, but it was raining. He was very upset about that.

But, here is some interesting info on cloth diapering:

Disposable diapers take 500 years to decompose. A baby goes through approximately 2800 diapers a year on average.

Cloth diapering saves the land field, our bank account, and my baby's bum.

We are still loving the cloth diapers. We use 1 disposable at night time and if we go out all day we use them then too just so we don't have to drag around dirty diapers. It's actually an easy thing to do and they are cute too. Look at that little bum!

He's learning to help with his diaper laundry too.

Green Gate Farm

2010-04-17T23:07:00.000-07:00

On Friday my mom and I took Jack to Green Gate Farm. It's an organic farm just east of town. It's a bit of a drive, but well worth it. I would love to do their weekly veggie deal but I just can't justify driving that far every week. However, going there every few weeks is totally worth it.

First, Jack (and my mom) had a blast.

Also, the produce are amazing. We got eggs, ground lamb that was AMAZING, garlic, kale, and a bunch of other stuff that I can't even remember right now.

However the animals were the highlight of the trip. Jack wasn't sure what to think of the pigs.

But he was thrilled with the baby goat. She was about 6 weeks old.

My mom had to feed everything out there, but this little one wanted to be scratched. Until she saw the bottle!

It was a fun trip. And we're going to try to go there at least once a month over the summer to get more veggies and eggs. And the black pig is going to have babies so we need to see those when they come too!

Back from Dallas

2010-04-13T19:43:00.000-07:00

Over the weekend we went to Dallas to a "town hall meeting" with some of the doctors at the TS clinic.

The hospital was awesome. The doctor was great. And it was wonderful to get to spend some time with some of the other families too. We had lunch with the head neurologist who is the head of the clinic there. He asked about Jack's treatment and he totally agrees with everything that has happened so far.

I kind of wish we would have had Jack on us so that we could have shown him off, because he's that dang cute. But my mom and Ron drove up to take care of him for us so that we didn't have to worry about him at all which was great.

We will probably have Jack become a patient up there so that we can get all of his yearly scans taken care of at once instead of running around Austin for a few weeks. The hospital will also pay for the genetic testing if our insurance won't cover it. I've got to set up an appointment with the genetic counselor to see if we can get approved.

The rest of the weekend was spent socializing, which was great. It had been way too long since we've seen some of those people! We got to see Jesus and Patty and their boys. The boys were so good with Jack, it was adorable. I wish I had a picture but I was too busy actually enjoying an adult conversation.

That night we got to see my friend Kat who moved to Dallas about 2 years ago. Kat and I met in high school. We did high school retreats together and also a few middle school retreats. Then we happen to bump into each other at a college retreat. We also went to UT at the same time and would meet up for lunch on occasion. Anyways, we're old friends. And Daniel happen to be up there for a lacross game. I stared babysitting Daniel when he was 3. He's now 20. I feel old. But it was awesome to see them and hang out. And this is the only picture I took all weekend.

Then Sunday we saw Joe (one of Jonathan's roommates in Dallas) and his wife Kim and their 2.5 kids. Kim is about to have their 3rd in about 6 weeks.

So, the weekend was great. Of course Jack slept in the bed with me and Jonathan ended up on the couch. It's amazing how much space one little body can take up. And the driving wasn't great but we made it.

And Jack continued to have seizures. Yesterday he was put on an additional med. Not what we wanted, but we need to get them stopped. Hopefully this will do the trick. The poor baby was so cranky today. I don't know if he's dizzy or his head hurts or what. He keeps putting his head down on the ground and moaning. Hopefully he will adjust to whatever is going on soon.

A rough few days

2010-04-04T22:31:00.001-07:00

Poor baby Jack. I'm up at midnight because I took a nap with him today and because I'm worried about him.

Yesterday and last night were awful, seizure wise. He had 9 seizures during the day and then 2 at night. Last night he went to bed at his normal time, about 7-ish but then woke up around 11. He didn't cry, so I left him in his crib but I did notice him pulling his hair. Around 11:30 he started to get a little upset so I went in and he didn't calm down or go back to sleep until 2. It was awful. Maybe the hair pulling was because his head hurt? I'm not sure.

Then I heard him at 3. He was doing this pathetic scream but with his eyes closed. That went on and off for about 10 minutes but he never sat up or even opened his eyes so I didn't go in. At 4 he was up again, screaming bloody murder and didn't calm down until 4:30. He had also had a diaper leak and I gave him some tylenol because something was hurting. He did the same thing from 6-6:30.

He is very good at putting himself to sleep. Something we really had to work at after the steroids. It took a long time but it was totally worth it. I've never let him just cry, but I also know his noises really well and if he's not distraught then I give him a few minutes to work things out. Given his medical condition I will NEVER just let him scream. He usually calms down really quickly, but last night was a different story.

This morning I called the neurologist on-call and was super glad it was our Dr. He told us to give Jack a one time boost of the seizure meds and then up the dosage again this evening. This basically maxes out his dose of the meds. The doctor is discouraged and thinks we are going to have to add another med which he doesn't really want to do but he doesn't think that the increase is going to make much of a difference. I do think that this med is keeping the spasms away, it's just not treating the partial seizures.

And then today he had 8 seizures. He cried most of the time we were at my mom's for Easter lunch. Jonathan and I actually ended up eating on the patio because Jack was content splashing in the puddles outside for a bit. We left early, gave him some motrin, and put him down for his nap. He was in a much better mood after the nap but still had a few seizures.

And days like these last few are extremely stressful. I just want my baby to be okay. I didn't sleep hardly at all last night and I'm up after midnight tonight because I just can't sleep. I desperately need sleep because God only knows what tomorrow is going to bring and I deal with all of this better if I'm rested.

And next weekend we are going to Dallas for a town hall meeting with some of the doctors from the TS clinic up there. I need to call and see about getting genetic testing done while we're there and also check to see if the hotel has cribs. Not that ya'll needed to know that, just that if it's written down maybe I won't forget.

Ok, back to trying to sleep. Thankfully all is quiet in Jack's room.

Bluebonnet Pictures

2010-04-03T21:12:00.000-07:00

Last year, when Jack was tiny, I decided that I was going to take pictures of my itty-bitty one in the flowers. And now I think we have a tradition. It's a typical Texas tradition to put your kid in the bluebonnets when they bloom and take a few pictures. I never thought I'd be one to take the "traditional" road when it comes to picture taking, but his birthday falls right when the bluebonnets are blooming so I think his birthday pictures will likely always be in the flowers. Anyways, here was last year.

I can't believe how tiny he was!

This year we went to the Wildflower Center for the first time ever. And when I say the first time, I mean it was the first time I had ever been there. And better yet, I had a friend who was in town from France and she meet us there and I took some pictures of both of our little ones, plus Jack got to spend his birthday with some friends.

I think Jack was trying to bite Dorian and Dorian was trying to hug Jack. We had to keep telling Dorian to be gentle with Jack because he is fascinated with his hair and wants to pull it. I guess Jack though it was pay back time.

The sun was awful and driving me crazy with the lighting but I got a few good ones anyways.

I wasn't totally satisfied with the pictures so on Friday, when we finally had an overcast day, I ran out to Steiner Ranch and snapped a few more. It was a little cooler so I couldn't do just the overalls but I like how they turned out.

He looks like such a little man. I want to know what happened to my baby.

12 months

2010-03-31T20:42:00.000-07:00

Dear Jack,

Before you were conceived, I wanted you. Before you were born, I loved you. On this day a year ago when you were placed in my arms, after 27 hours of labor, all 8 lbs, 8 oz of you, my life was forever changed and my heart has forever belonged to you.

This year has been tough, really tough but only because of how much I love you. It has also been wonderful. It's been full of smiles, laughter, hugs and kisses. It has been the best year ever all because of you and I wouldn't trade you for the world.

Happy birthday my beautiful little man.

Love,
Mama

Team Jack-A-Roo

2010-03-26T14:07:00.000-07:00

As a parent of a child with medical needs, especially a genetic disorder, it doesn't feel like there is much we can do about it. We give Jack his medicine, we take him to his appointments, we wright everything down for the doctors, we watch him like a hawk. Beyond that, we feel pretty powerless as far as helping our son goes. But this, this is something we can do to help him...

I don't have much time to explain all of this so I will do a more detailed post soon but I wanted to get this out there.

I have some friends who decided to walk for Jack. What that means is that they are raising money in Jack's name for Tuberous Sclerosis research and walking for a cause.

I've never understood walking for a cause before, but having a child with a rare genetic disorder means that it is under funded and under research and all of a sudden, I get it. And I would walk a million miles for this kid if it meant finding a cure.

These friends have gotten together to support us and those with TSC. People all over the country are walking (and raising money) in Jack's name. I can't even begin to tell you how touched I am. I never asked them to do it, one of them just say "hey, I'm doing this" and others joined in. Every time I think about it, it moves me to tears. Jack has fans everywhere, people praying, rooting him on, and donating of their time and money to help him out.

We will be going to Dallas on May 15th to walk. If you can, please join our team and walk with us. If you can make a donation, however small or large, we would be so grateful.

The money goes towards supporting TSC, doing research in areas such as epilepsy, autism, and tumors.

And hopefully by that date, Jack will be walking too! If not, I'm sure he'll be glad to crawl across the finish line.

Here are the links of where to donate. It doesn't matter which one you choose, they are all in Jack's name.

My page: http://www.firstgiving.com/jack-a-roo

Kelli's page in Portland: http://www.firstgiving.com/jackaroo_portland

Mandy's page in Denver: http://www.firstgiving.com/amandastringer

Netty's page in Scottsdale: https://www.firstgiving.com/lynettelewis

Confirming the diagnosis

2010-03-25T13:17:00.000-07:00

We took Jack to the neurologist before our vacation (a vacation post is coming, I'm just going crazy trying to get things ready for his birthday party and he's sick). We looked at him under a wood's lamp (AKA: a black light) and found lots of these skin spots on him. This is his left foot under the light.

Here is his leg in normal light.

You would never know that he has these without the lamp. We finally found a good reason to be so fair skinned! I can see the one on his forehead now without the lamp but I think it's just because I know it's there. And his bangs will cover it anyways so it's nothing to worry about. We will be putting on lots of sun screen this summer!

We also went to the cardiologist today. Jack has 3 tumors on his heart. They are very small and we are told that they are nothing to worry about because his heart is functioning perfectly. Really they are more confirmation that he does in fact have TS. We go back in a few months to get them re-checked and hopefully they will shrink away. Chances are they were bigger when he was smaller.

In the mean time, I'm off to take Jack to the pediatrician because he's sick. The poor baby has a fever, runny nose, cough, and is super cranky. He just sits in my lap and moans. Hopefully he will be feeling up for his party on Saturday.

I can edit video!

2010-03-07T20:17:00.000-08:00

I'm very proud of myself. I've figured out how to take the video clips of Jack at the pool and splice them together, just get the clips I want, and actually make it all look good together.

Here it is! Jack's big day at the pool.

I can't figure out why only 1/2 of it is showing up... the left half. It's weird. Here is the link too, so you can see the whole thing.

http://www.youtube.com/watch?v=y5U4aAydlPQ

Tracking Evan - Video

2010-03-05T07:43:00.000-08:00

This video is an add for an online seizure tracking system. However, the child has TSC and these parents describe exactly how Jonathan and I feel with all of this, they just put it much more eloquently. The video makes me cry because it hits so close to home.