Houston

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

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

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

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

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

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

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.