Wednesday, December 30, 2009

More pictures

Here are a few more from my mom's house, in no particular order.

It's so cute, Shawn & Kelly (my brother and sister-in-law) have taught Grace where her organs are so Shawn would ask her to listen to her intestines and she would put it on her tummy. She would put it on her esophagus, kidneys, heart, and a few others.

Both Grace and Jack were highly entertained by the train.


Tuesday, December 29, 2009

Christmas!

I love Christmas. I especially love Christmas when I get all of my shopping done early and I can actually enjoy the holiday season. This year I managed to not go to the mall between Thanksgiving and Christmas. I actually got most of my shopping done early and what I didn't, I ordered on line.

But did I mention the tree fiasco? The dead tree fiasco? Yeah, the first tree we got died. Like really dead. Luckily I managed to get it replaced at no cost without a recipe, but it was a lot of work... twice.


Jack met Santa at my grandmother's soon-to-be retirement home. And the nice part was it was free and included lunch. Did you know they want $25 for a picture with Santa at the mall? That seems nuts.


And Jack was fine with Santa, he actually really liked the beard. But I think the Elf freaked him out a little bit.


Christmas morning was great. Jack slept until almost 7 and then we all got up and found what Santa left.

Then the family came over and it was the Jack and Grace show. We had brunch, mimosas and bloody Mary's, and you know - brunch food. Jack did okay with opening presents, okay for a baby that is. Grace of course had a blast. And I must admit that I'm a little overwhelmed by all the toys and where to put them.

I am super excited that Jack got swimming lessons. They last for 20 weeks and will take us right into summer.


And I got a new camera lens! I go pick it up tomorrow but it will allow me to take good inside pictures in low light. I can't wait.


This year Christmas was all about Jack, which means that this year it was all about the baby love and that's the best.

Thursday, December 17, 2009

Jack vs. Santa

A few weeks ago I took some pictures of my brother's family at the UT golf club. We got a few pictures of Jack and Grace too.


And this series cracks me up. His reaction when that toy was set next to him was priceless.

"What the *^&%* are you?

"I have a weapon, and I'm not afraid to use it."

"Maybe you're okay, here have a lick"

We met a live Santa earlier in the week. I'll try and post those pictures soon...

Sunday, December 13, 2009

A rollercoaster

The last few weeks have been hard. Really hard. The day before thanksgiving I took Jack to get his hair trimmed for our family pictures. During the process I noticed him startle and get that scared look on his face. I knew something wasn't right. A few days went by and he seemed fine so I though, prayed, that I was just paranoid. But he started jerking more.

The second time I saw it I called the neurologist's office right away. They told me to get it on video. The problem was that it happened so fast and was over so quick that it was impossible to catch. So I did the only thing I could think of, I took as much video as I could. I have hours of footage and some really cute ones too, like this:



Knowing that there was something horribly wrong and not being able to do anything about it was... I can't even come up with words to describe it.

After so much recording I finally caught some of it. On Monday the doc saw it and told us he wanted an EEG immediately. I woke Jack up from his nap, left him in his pj's, and tossed him in the car. And somewhere in there I called Jonathan and told him to meet us there.

Dr. Kane was actually traveling that day but was headed back to town. Tuesday morning I got a phone call that he wanted to see us. Long story short, the spasms are back. The spasms that there was less than a 10% chance of re-occurrence, the ones that could do permanent brain damage, are back. We caught it super early because the short EEG actually looked fine but we already know that the long EEG isn't fine meaning he's having 2 types of seizures.

To make a long story short we're treating it with a med that was only recently approved by the FDA. It's only been available here since September but it's been used everywhere else in the world to treat IS (infantile spasms) for over 10 years. Today was his 3rd day on it and he didn't have any seizures so we're hopeful that it's going to work. He'll be on it for 6 months in hopes that it controls things and gives him time to outgrow the spasms. If he doesn't outgrow them they will eventually turn into some other type of seizure as infantile spasms are specific to infants. He's doing well on the meds though, no major side effects and he's still sleeping okay, thank God.

There are 2 sides to this. On one hand for having what he has Jack is in the best possible position. His development is on track. He's a happy, curious, social little guy and you would never know that anything is wrong with him by looking at him. AND the doctor expects him to continue to stay on track.

On the other hand, we have no clue what this means long term. He could have problems with seizures his whole life. They could still do brain damage and to be completely honest we don't know if they have done any damage or not. Something is going on in his right frontal lobe. We do a repeat MRI (that's going to suck) in a few months so maybe we'll learn something from that.

This whole thing breaks my heart. I've planned for this child since I started college. I've always wanted to be a mommy and I've never done anything so fulfilling. This little guy is my world and I feel so helpless. I've done everything I can possibly think of to get this baby better and it simply hasn't worked. He's at the perfect age. I LOVE these baby days but for his baby days I'm riddled with worry. I just want him healthy, I need him healthy.

Sunday, November 22, 2009

Out of the Hospital

I have a lot to say about Jack and his recent trip to the hospital, but he's teething so I've gotten no sleep. None. At. All.

At our follow up visit with Dr. Kane, the neurologist, he wanted to do a longer EEG to make sure that the staring spells Jack has been having weren't seizures. He was so positive that it was nothing and that Jack was fine, but my mommy instincts were going off. I was really hopeful that they were just on over load from everything that has gone on so far. So the EEG was to catch one of these spells on the EEG and eliminate any problems.

We checked in on Monday morning at 7:00 to hook Jack up to the EEG. That. Was. Awful. It took everything in me not to cry with him. It took about 2 hours to get everything hooked up. They had to cement the electrodes to his head with glue and cold air, it was horrible. Almost as bad as the day I wasn't able to feed him all day. Not quite that bad, but close.

He was leashed. We could move around the room, but that was it. And it was a royal pain to keep up with those things. Jack was not a happy camper. The first 24 hours weren't fun, but the second 24 were awful. That's right, we were there hooked up to that think for 48 hours.

After the first day, after not seeing any staring spells, the doc had looked at the EEG and said that so far it looked perfect. The next day at noon-ish he came by, said that he was going to go scower the EEG and that we needed to talk about when we wanted to go home. We felt like we were damned if we did and damned if we didn't. We really wanted to catch one of these spells on the EEG but at the same time we had no idea when it would happen and Jack was so upset about being hooked up to that thing.

Dr. Kane came back about 2 hours later and said that he was really sorry but he was wrong and he found some abnormalities. They indicated that Jack is having partial seizures. The whole conversation is a blur. He said that Jack might grow out of this in a few year. Yeah, YEARS. Or it may be something he has for the rest of his life.

Let me go on a little tangent here and say that we all have our shit to deal with. Some people have weight issues, I've had pain issues and lived in constant pain for 2 years, and some people deal with mental health issues. We all have something to deal with, this is Jack's.

Anyways, after a sleepless night in the hospital where Jack was up every 45 minutes we got unhooked and bolted home. He was so happy to be at home and playing with his toys.

Saturday evening we finally got to talk to the doctor. He called after he went over the rest of the EEG. We didn't get a staring spell on the EEG but the spikes indicate that something isn't right. He recommended not medicating him and waiting it out a little. If it's going to get worse, it will be obvious and we'll call right away and get medicine started. However the doctor is hopeful that this will go away on its own. In the mean time we are treating him with acupuncture.

Knowing that there is something wrong with my baby's brain and that there isn't much I can do but wait for it to get worse is stressful to say the least. We're just praying that he doesn't come out of this with any brain damage and that this is all just a bad memory sooner rather than later.

He hasn't slept well all week. I haven't eaten dinner 3 nights because I'm just too tired. Hopefully the teething will end soon and we can all get some much needed rest.

Here is my little man all hooked up and taking it well... the first day.

Wednesday, November 11, 2009

Remember this guy?


I took care of Cooper for about10 months and I still think about him often. I can't believe how much he's changed in a year. And the hair, HE HAS HAIR!

Tuesday, November 3, 2009

An update on Jack

Jack is completely off his meds! He's in a much better mood and it's so wonderful to finally have my happy baby back. He was sick last week, but still in a better mood than when he was on the meds.


He's still not sleeping great but some nights are better than others. Last night he was only up once but that one time he was up, he was up for an hour. We're waiting until this weekend to make sure all the meds are out of his little system before we do any kind of sleep training.


We see the neurologist next Wednesday and we're hoping for a clean bill of health. I'm wondering how likely it is that these things could re-occur. We have the crazy expensive meds in our refrigerator and we're hoping to have to find someone to donate them too (though I think we should try and find a UT football player to sell them to.)


Jack continues to develop perfectly and is crawling everywhere now. That started a little earlier than I had hoped, but better early than late. He loves to try and chew on shoes so we're having to do keep things a little more picked up around here. And I'm so tired of finding his toys in the back yard that the dogs have been banished to the kitchen during the day. And speaking of the kitchen, I still need to post before and after pictures of our floors. There's so much to do.



Anyways, back to Jack. He is so proud of himself for figuring out how to go from crawling to sitting. He can go, he can stop, he can sit, and he can drool. Oh the drool, or I suppose I should really say the spit. He blows raspberries all the time, and he really loves to do it as soon as I put food in his mouth. I now wear a robe when I feed the little booger. He's not a big fan of solids. I'm planning on getting a video of it soon to hold against him later in life.

Halloween was fun. We just went to a little festival in Shawn and Kelly's neighborhood but we got to see them and Grace. Grace was a cow girl so Jack was her cow. I have a ton of costume pictures though so I'll post those soon. They are all super cute.


Monday, October 26, 2009

Here comes Santa Claus here comes Santa Claus...

People have been asking us what Jack wants for Christmas. What he really wants is an iphone, a cup of coffee, and a pair of glasses. He's constantly going after those things and if he got all of them in one day, he'd be in heaven.

Really, he doesn't need anything and he'd be happy if you handed him a measuring cup but if you're looking for ideas, here you go. We're not big on toys that have a ton of "extra" stimulation like flashy lights and electronic music. Basically anything that doesn't require batteries is great. Musical instruments like this are wonderful.


There is a store in Round Rock called Baby Earth that I love. They have lots of Haba toys which are lovely. There's another good toy store near 183 & Mopac next to the Container Store... I don't remember the name of it though.

So he'll be almost 9 months old at Christmas and pulling up on things so a pushing toy would be great. I really like this one and it has great reviews.


Or one of these would work too.

I think something like this would be hysterical:

And we could use one of these although this looks good too.

He could use some bath toys too.

And I'm just going to post a few links to some things that would be good.
water blocks
chunky toy
stacking blocks
zoo blocks
bath toys

Personally, I would just like a full nights sleep. Just one night, that is all.

EDITED TO ADD A FEW THINGS:

I'm always looking for a hair brush for this kid and I really like this.

And we always need this diaper cream.

Tuesday, October 20, 2009

Usefull piggy flu info

People are freaking out over this thing. Most of what people are getting is not as bad as the "regular" flu, the reason it's a bigger deal is because it's a new strain of the flu so very few people have built up immunity to it. I read somewhere that roughly 1/3 of the population is going to get it.

I wasn't really worried about it until Jack got put on these meds and his immune system was weakened. If he got it, it could be really bad and would likely land him in the hospital. That's why we've been keeping him away from people. Because even if you're feeling fine, you could still be a carrier. My mom has been the only one really allowed around Jack because she doesn't work and she's had her flu shot. And we're all getting the H1N1 vaccine as soon as it gets here.

Anyways, we're staying held up in the house for the most part. Here is some good info about how to avoid this stuff...

The only portals of entry are the nostrils and mouth/throat. In a global epidemic of this nature,

it's almost impossible to avoid coming into contact with H1N1 in spite of all precautions.
Contact with H1N1 is not so much of a problem as proliferation is.

While you are still healthy and not showing any symptoms of H1N1 infection, in order to prevent
proliferation, aggravation of symptoms and development of secondary infections, some very
simple steps, not fully highlighted in most official communications, can be practiced (instead of
focusing on how to stock N95 or Tamiflu):

1. Frequent hand-washing (well highlighted in all official communications).

2. "Hands-off-the-face" approach. Resist all temptations to touch any part of face (unless you want to eat, bathe or slap).

3. *Gargle twice a day with warm salt water (use Listerine if you don't trust salt). *H1N1 takes 2-3 days after initial infection in the throat/ nasal cavity to proliferate and show characteristic symptoms. Simple gargling prevents proliferation. In a way, gargling with salt water has the same effect on a healthy individual that Tamiflu has on an infected one. Don't underestimate this simple, inexpensive and powerful preventative method.

4. Similar to 3 above, *clean your nostrils at least once every day with warm salt water. *Not everybody may be good at Jala Neti or Sutra Neti (very good Yoga asanas to clean nasal cavities), but *blowing the nose hard once a day and swabbing both nostrils with cotton buds dipped in warm salt water is very effective in bringing down viral population.*

5. *Boost your natural immunity with foods that are rich in Vitamin C (Amla and other citrus fruits). *If you have to supplement with Vitamin C tablets, make sure that it also has Zinc to boost absorption.

6. *Drink as much of warm liquids (tea, coffee, etc) as you can. *Drinking warm liquids has the same effect as gargling, but in the reverse direction. They wash off proliferating viruses from the throat into the stomach where they cannot survive, proliferate or do any harm.


Monday, October 12, 2009

It's about time

I know, I've been bad about updating the blog. I could tell you about how little sleep I'm getting. Jack is up 3 to 4 times a night to eat, I feel like his personal Vegas buffet, all you can eat and open 24/7. I feed him every 2 hours which means I get about 1.5 hours of sleep at a time, if I'm lucky. It's worse then when he was a newborn. The newborn sleeplessness only lasted 2 weeks, I've stopped counting how long this has gone on.

There are 2 good things though that I keep focusing on. One is that Jack isn't having seizures. We're watching him like a hawk and I jump at every little twitch but so far, he's good. And the other is that I've lost even more weight because I'm making so much milk.

I love that hat by the way. We got it last year when we were in Yosemite.

This week we are finally getting our kitchen floor re-done. We knew when we moved in that we wanted to replace it but we are just now to the point where we can get it done. The kitchen, dining room and entry way are all being ripped up as I type and the concrete is going to be stained.

They were hoping to have it all done by Wednesday but the floor is being particularly difficult to remove so it might not be done until Thursday.

I'll post before and after pictures when it's all done but in the mean time here are a few of how we're living now.


Wednesday, September 30, 2009

6 months old!


Jack is 6 months old today! I'm working on a special thing for the blog but it's going to take a few days. I did want to give a quick up-date though (with pictures).


As of today Jack has been seizure free for 2 weeks. Today we had a repeat EEG and an appointment with the neurologist. To sum it up, Jack's EEG looks totally normal! 100% better! I can not tell you how relieved I am.


The doctor is very pleased with his progress. We have 5 weeks to wean him off of the meds. We are going to reduce them slowly and watch him closely. Then after he's off the meds we still have to watch him close for a long time. But considering how awful these seizures are and can be, Jack is doing amazingly well. And so far, he's doing the best anyone with this could possibly be doing.


We're not sleeping. Any of us. Jack wants to nurse every 2 hours around the clock. I swear that I got more sleep when he was a newborn. My dad has been bringing over food, which has been great. And my friend Beth made us a meal too. It's difficult to cook when you're operating on so little sleep.


So, Jack is doing great. And we'll survive the lack of sleep. And my plumbing issues. I've had 3 clogged ducts since we left the hospital. It's crazy.


If you do any research on-line about what Jack has, it's super scary. (SO DON'T DO IT) And developmentally he's doing great. Anytime I get wrapped up in worry about how this could effect him in the long run I look at him and focus on how perfect he is. There is no point in worrying about something that hasn't even happened and something that the doctor doesn't think will happen.


Jack is trying so hard to crawl. He gets up on all 4's and lunges forward. It's frightening. He also started eating solids and is doing okay with it. The first things we tried he didn't like. He didn't like avocado, green beans were good the 1st time but not since, and sweet potatos. He did finally like butternut squash and pears. And tonight he gobbled everything down that I fed him, that was a first. Next is peas and carrots.

Thursday, September 24, 2009

Chompers!

Jack's 1st tooth broke through this week! As if the poor kid didn't have enough to deal with now he has to grow teeth too.

Everyone kept saying that he was teething, and that started around 2 months old. I promise he wasn't teething for 4 months, he just drools and chews on things. After all, he is a baby. The first real sigh was the week we had the EEG he had a very low grade fever but no other symptoms of being sick. I wondered if it was teething at that point but got distracted by everything else.

Wednesday, September 23, 2009

quick update

Jack has now been seizure free for one week! I'm so excited. I get to reduce his meds a tiny bit for another week and see how he does.

Next Wednesday we're going in for a follow up EEG to make sure that he really is improving.

He's not sleeping. He thinks it's time to be up anywhere between 2:30 am and 4:00 am. I haven't been this exhausted since he was a newborn. Oh wait, when he was a newborn Jonathan was here so I actually got more sleep then. So yeah, I'm beat. I'm hoping that with the reduction in the meds he'll be able to sleep a little more.

And he want to eat every 2 hours around the clock. My boobs are so sore. And I'm getting another milk blister.

But he's doing better. And he's happy again. Last week was awful. We're not really going anywhere or doing anything to avoid all the flu going around. I'm really worried about him getting it given that his immune system is being told not to work by these drugs. So yeah, we're not really doing anything but hanging at the house. At least it's only for a few months.

Milk Power!

Yesterday I cleared out a lot of space in the freezer by donating 214 oz of breast milk. It wasn't going to get used by Jack and some of it was quickly approaching it's expiration date. There's a whole process you have to go through to do it but hopefully we'll get to keep donating for a while.

The milk will be used to help sick and premature babies. I'm so glad that someone can use it.

And on a totally different note, did you see all of those type-o's in that last post? I know that I have them on occasion but that was a little much. I'll have to go an edit it later.

Friday, September 18, 2009

More prayers needed

As you've probably noticed I didn't write a 5 month news letter and I haven't posted in a while. Well, right around the 5 month mark we when I got really worried and knew something was wrong and I couldn't think about anything else. I could have written about how Jack discovered his toes, and let me tell you, they are amazing. TOES! He loves them. And how he is rolling across the floor on a regular basis. I can't put him down and expect him to be there if I turn away. He's also pulling his knees up under himself and scooting a little but he hasn't figured out what to do with his arms yet. And the hair pulling, it gives me a headache almost daily and one of these days I'm going to go and just have it all chopped off so that he can't pull it. But speaking of hair, Jonathan put Jack on his shoulders the other day and was walking around the house with him. I spotted something on his shirt and it turned out the be barf, and it wasn't only on his shirt. Yep, Jack puked all over daddy's head. I was so proud.


Every parent expects to worry about their kid to some point, its just part of the package. As infants you expect to worry about the eating, bumping their heads, and how they just won't sleep. As toddlers you expect to worry about preschool, the things that are going to come out of their mouths in public, and how they just won't eat. As school aged kids you expect to worry about their grades, who they hang out with, and how they just won't do their homework. And as teenagers you expect to worry about sex, drugs, and how they just won't listen. These are all givens and things that every parent hopes to get ot worry about. One hopes to never worry that there is something wrong with their baby's brain and that their kid might not be normal enough to get to worry about these things.

So the story starts about 4 weeks ago when Jack started having these little spasms. It looks like the startle reflex that they have when they are really little but it happens in clusters over and over again. When it first started they wouldn't last long and it was only once or twice a day. I called the doctors office on the 3rd day because I was worried. I've worked with a ton of kids and I know that some twitching can be totally normal but the was just a little too much for comfort. The nurse assured me that it was normal and nothing to worry about. I still worried. That was a Tuesday and Friday we had our 4 month check up (although it was 2 days before he turned 5 months old). I mentioned it to the doctor and she referred us to a neurologist just in case. We got out of there late Friday afternoon so I couldn't call the neurologist's office until Monday.

On Monday when I called they told me that they couldn't see him until December 15th. DECEMBER! I completely flipped out. I called the pedi back and left a message, the nurse called me bac, she talked to the doctor and he ordered the EEG. They said that if anything was abnormal they they could get us in with the neurologist sooner. By the time all of that happened I couldn't schedule the EEG until the next day. All of the delays were really getting to me. In the mean time the spasms were happening more frequently and they were getting stronger. He started crying between each one and you could tell by the look on his face that they scared him. I started writing everything down and even video taping them so I could show the doctor. I won't post the video because it's hard to watch.

I got the EEG scheduled for Sept. 15th and sent the video to a few people to watch. My friend Will who worked in a hospital for a while, my brother who's a doctor, and a friend from church who's a pediatrician all watched them. All of them were concerned.

On Tuesday the 8th we showed up at Dell Children's for the EEG. I had written the date down correctly but somehow I got it in my head that it was the day after Labor Day. Don't ask my why but I was convinced it was then. When they told us our mistake the scheduling person had pity on us. I told her that a week was a really long time to wait when my baby was having what I thought were seizures. She coudln't get us in that day but she took my cell number and gave me her direct line. Shortly after I got home she called me and said that they had an opening the next day and we took it.

The EEG went fine. We kept him up for a long time before we got there so that he would be sleepy. He cried while we had to hold his head still to mark where the leads would go but fell asleep before they got all of them on. I was able to lie next to him on the bed and he snoozed the whole time.


Our doctor was hoping we would hear something by Friday but the tech who did the EEG said that it could take up to 10 days. Again, a long time to wait. However the next morning the phones went nuts. I was rocking Jack and putting him down for his nap. As soon as I left the room I heard the phone ringing and I went to get it, there were suddenly 3 messaged left in the last 10 minutes. I called Jonathan back and he had talked to a nurse at the pedi's office, the EEG was abnormal and the neurologist wanted to see us that day. The neurologist who couldn't see us until December was suddenly telling us to just get to the office. This is where any parent starts to panic a little. I've just had a doctor tell me that there is something wrong with my child's brain. We had taken the jeep in for service that day and Jonathan had just gotten to work so we went in at 2.

The doctor said that the EEG was abnormal, he asked us what was going on, and we showed him the video we had taken. He diagnosed Jack with something called Infantial Spasms, a type of seizure in infants. He asked us lots of questions about Jack's development because usually when they see this it is associated with other issues and developmental delays. Thankfully, Jack is developing perfectly. The other good news was that the EEG wasn't quite bad enough for it to be infantial spasms meaning we caught it early. He suggested that we check into the hospital so we could do some testing and get him started on meds. He said that if we can get these things to stop he thinks that Jack will continue to develop perfectly and that he will go on as if this never happened. That's what we're praying for anyways. (And I suggest that you don't google it. Read the link if you want but google paints a very grim picture. Don't say I didn't warn you.)

One of his nurses walked us through the secret under ground tunnel to the hospital and got us checked in. The hospital stay was stressful. We got really tired of people coming in and asking what was going on. I can't even count how many times I had to re-tell the griggin story. The poor kid was poked an prodded by a zillion doctors and nurses but he was a trooper. We got him started on some steroids because apparently these type of seizures don't respond to normal seizure medicine. If the steroids don't work then we'll have to give him daily injections of a drug called ACTH.


I was told that I couldn't feed him after midnight because our MRI was scheduled at 8 AM and because you can't tell an infant to hold still he had to be put under for the procedure. I tried to wake him up at midnight and feed him but he simply wouldn't wake. At 4 he woke up screaming and hungry. After about 15 min of screaming the nurse told me to go ahead and feed him and that 4 hours without eating was enough. At 6:30 a tech banged on the door and burst in screaming that she was there to weigh the baby. I wanted to strangle her ass. My 5 month old baby is going to have an MRI in 1.5 hours, was sleeping soundly, and you burst in and wake him up. AND I CAN'T FEED HIM. I was beyond pissed and I sent her away without weighing him before I tore her eyes out.

The screaming started again because of course, I couldn't feed him. After only a few minutes of screaming this time the nurse came in and told us that the MRI had been moved to 11:00 so I could feed him one more time. The rest of the was was spent trying to console a very unhappy baby. The poor little guy didn't understand why I wasn't feeding him. Thankfully my parents were there to help entertain him a little. He loved the butterfly wall.


And he got a candy flavored binky which he liked. We dipped his binky in some sugar water and he would suck on that for a while. He napped some and at about 10:30 we found out that the MRI was being pushed back to 12:00. To make a long story short it was pushed back to 2 after that. If you're calculating, at that point it had been 7 hours since he had eaten. Not feeding a baby for that long is so not okay. He was screaming, I was crying and leaking, and it still wasn't over. They finally took us down for it and while we were waiting a doctor came and told us that there had been an emergency and we had to wait longer. This was by far my most stressful day as a parent so far. They gave us 2 options, either feed him and wait 4 hours or wait another 2 hours without feeding him. We opted to feed him. Then it was back to starving him and more screaming before they finally did the MRI.

And they were going to put him under and then start the IV and draw blood but because Jonathan had a bad reaction to a gas one time and we don't know all the details of that they had to start the IV first. I wasn't in the room but it took at least 3 times before they got it in. He also has another 3 poke marks that might be from trying too, I'm not sure. But my poor baby! He still has bruises.


The MRI was to make sure that his brain developed normally in-utero. Which it didi. And the blood work came back clear too. So basically they don't know why the seizures are happening. But the doctor insists that the prognosis is good.

Since we've been home and on the oral steroid life has been hard. We've both been sick. Jack has been super irritable, he thinks he's starving all the time, and he groans constantly. Well, when he's not out right crying he's groaning. His naps have turned into 10 minutes, if I'm lucky. It's been really rough, especially since I have no energy because I'm trying to get well myself. I'd love to take him on a long walk but I don't think I'd make it across the street right now. And my house has never been messier. I only thought that I didn't get anything done becore all of this, now I really don't get anything done. Even basic maintenance has gone out the window. Today was a little better so I'm hoping we're headed for better days.

But thank God I didn't listen to the nurse who told me that this is "normal". Thank God I didn't just wait until December to see the neurologist. Thank God we showed up a week early for the EEG. Thank God we have insurance. And thank God we caught it early.

So we're praying. We are talking to the doctors. We have thrown sleep training out the window, all of those hours we spent getting him to fall asleep on his own, gone. He even sleeps with me some now. He hasn't had any seizures for the last 48 hours which is SO great. He's a tough little guy and I'm sure we'll all make it through somehow.


We had a great doctors appointment today. The seizures have finally reduced enough for us to stay on the oral meds. If he doesn't have a seizure for a week then we will reduce the dose and go for another week. Yay! The ACTH (which was going to cost us over $7,000 out of pocket but an organization paid for it) is being delivered tomorrow. It's a long story, but we're saving it as a back up plan.

Tuesday, September 8, 2009

Finally better

Thank God. I'm back to normal.

I have a headache tonight but am going to bed shortly. I'm thinking a little sleep will solve the problem.

Thursday, September 3, 2009

A crazy week

This week has been awful.

It started last Thursday morning. I woke up with my right boob really hurting. I stumbled into Jack's room and fed him, boob still really hurt. After putting him back to bed I discovered a blister on my nipple that was filled with milk. Yes, apparently nursing mom's can get milk blisters. Thank God for google because I didn't know what the crap was going on and I kind of freaked out a little. I also had a clogged duct. So I spent several days shoving a heating thing down my shirt, massaging my broken boob, and taking super hot showers to get the thing unclogged.

Friday Jack had his dr's appt and got his shots but we didn't see his regular doctor. I asked the pedi what anti-biotics I could take while breast feeding just in case it turned into mastitis and I needed something, that way Shawn (my brother) could call something in for me over the weekend. She told me that any of them were fine, which I knew was a load of crap. She said a few other things that rubbed me the wrong way too, we won't be seeing her again.

I was really weak all weekend. I could barley pick Jack up and if anything would touch the right side of my body I would cringe in pain. Well, a week later and all of that is still the same.

I had an appointment with the nurse practitioner at the OB's office for my yearly on Tuesday so I mentioned everything to her. She couldn't find a clogged duct, so at some point I had managed to get it unclogged. But they why was I still in so much pain? Oh, did I mention that I had some cracking and bleeding after the blister was gone? That really helped with the pain issue. Anyways, she thought it was mastitis even though I didn't have the fever. I had enough of the other symptoms and my breast was a bit red too.

So here I am, more that 48 hours on anti-biotics and pro-biotics and still in massive amounts of pain. Jack has had a low grade fever all week and he's been waking up at night from either gas or the fever or both. Last night was the first night he slept through. And he's been cranky and wanting to be held all the time. Poor baby. He has no other symptoms of anything going on, no congestion, no runny or stuffy nose, nothing. So I'm thinking teeth. Oh yeah, and he won't nap for more than 20 min during the day so by about 3:00 he's super cranky.

Now I don't know what is going on with me. Maybe yeast? Jack doesn't have thrush in his mouth, I keep checking but he's clear. I went to get the purple over-the-counter stuff to help with yeast and CVS sent me to People's and People's had to order it. Or maybe it's still mastitis and it will just take a while for the pain to go away. The nurse can see me again tomorrow afternoon but I don't know what good that's going to do. I guess I'll give it until Monday.

It's times like these that make me really want to stop breastfeeding. Every time he latches on it takes everything I have not to yelp and scream. One time I did it involuntarily and it scared Jack and he cried, it wasn't good. And he's so distracted while eating these days that he's constantly un-latching and looking around and then latching back on, which is awful.

Ok, I'm done with the rambling. So that's what life has been like this week. I'm hoping next week is better.

Monday, August 31, 2009

4 month appointment

Jack had his 4 month dr's appointment on Friday. If you're thinking "wait, isn't he closer to 5 months?" then you'd be correct. He's actually 5 months old today.

But he weighs 16 lbs 9 oz (that was with a wet cloth diaper on) and is 26 inches long. He is in the 60th % for weight and height and the 50th for head.

The doctor said that he's perfect. Which of course we already knew.

He got 2 shots and had a really rough night. He woke up screaming at about 10 and was inconsolable for almost an hour. The fact that we had company over and had been drinking margaritas, the first real drinks I've had since I found out I was pregnant, didn't help matters. He had a fever for a little over 2 days but is back to normal today. Thank God.

Saturday, August 29, 2009

I'm the biggest loser!

I won the weight loss challenge at the gym... by 7 lbs! I lost 25 lbs total and I feel a lot better. I'm below my pre-pregnancy weight and I plan on loosing more too.

Here's what I won:
1. professional photo session
2. free 4 weeks of the next 12 week team class
3. one on one grocery store tour
4. one hour massage
5. free RMR test (resting metabolic rate - measures how many calories you burn per day)
6. free lunch for 2 at the cafe

Anyways, I'm excited. It was challenging. But I stuck with it and I will continue to do so. Next is Jonathan's turn to take a class. He'll be using some of my prizes (the RMR test and the free 4 weeks) but the rest are mine. :-)

I've celebrated, had margaritas, has a piece of pie, and now I feel crappy enough that I'm ready to eat healthy again.

Here's to another 25!

Saturday, August 22, 2009

I guess we're not wearing him out enough

We've had a few hiccups in Jack's sleep lately. It hasn't been bad, he hasn't been up much, but there is some waking up involved.

It started about 2 weeks ago, he started rolling over in his sleep. After he rolled he would get mad and wake up screaming. For about a week I slept in the other room so that I could roll him back over quickly and so Jonathan could sleep well since he had to work. Oh, and we tried every sleep positioner out there, that only pissed him off more.

That weekend Jonathan offered to take care of him so that I could get a full night sleep. The first night went great, but not the second. After the 2nd time he needed me to calm Jack down I found them watching TV at 2:30 in the morning. After that I went back to just taking care of it myself. I don't want Jack thinking that if he wakes up in the middle of the night that he gets to watch TV. Not. Gunna. Happen!

Anyways, he finally figured out that it's okay to sleep on him tummy. However his napping has been all messed up. He was sleeping 4 or 5 times a day for about 40 min each time. Now he's only sleeping 3 times a day but for the same amount of time so he is a bear in the evenings. When his naps got all screwy he started going to bed earlier but waking up a few times early in the evening needing his binky back.

Today has been great though. We met some friends at the pool early today and I think that did the trick. After that he took 2 longer naps and went to bed promptly at 7, and I haven't heard a peep out of him. So maybe we're not doing enough. I guess it's time to kick it up a notch.

And here's a picture, because he's cute and has great hair.

Sunday, August 16, 2009

The race is on

The weight loss race that is. As of last Monday I was winning by 1.5 pounds. Here's the kicker, at the beginning they said that the first week didn't count since not everyone had signed up for the class yet, and I lost 4 lbs that first week.

Last week when they calculated everything they were including that 4 lbs (so I've lost 16.5 total) and I don't know how much the other person lost in that first week but I have a veg recollection of it not being much.

It looks like it's between me and this other person, Stacy. She's really great but has a lot more weight to loose than me so she could easily beat me. % wise there is no doubt that I've lost more, but it may all come down to if they count that first week or not.

This week I feel like I've been a little off. I went to the baby day movie at the Alamo Drafthouse and had mozzarella sticks (yummy, but not on the diet) and we went out and had a big dinner last night. Everything I ate last night was fine, but portions were way too big. Also I know that I haven't eaten enough vegetables this week. Hopefully I haven't doomed myself too bad.

2 more weeks to go!

Tuesday, August 11, 2009

It only took 6 years

Come October we will have been in this house for 6 years. It's hard to believe. And we've always really liked it here. The neighbor hood is great as are the people. We've always talked about how we should get together with the neighbors and get to know them better. We always wave and chat briefly with the people on either side of us. We know the story about the family across the street with 6 girls, the youngest being twins that were conceived AFTER a vasectomy. And I've borrowed eggs from the people across the street. But even with all of that, we've never really gotten to know them. We've talked about it, just never done it.

Jonathan was talking with Bret from next door and apparently there was a national neighbor night out so we all grilled out on our driveway.


It was a lot of fun. Everyone brought something and the family with 6 girls was out of town so we didn't have to worry about feeding an army. There were a few straggles that just showed up but of course we had tons of food so it all worked out. The one that cracked me up was the kid, who was probably about 10, and we couldn't figure out where he came from.

We are planning on doing it again even. But next time, we're not doing it on a Tuesday night, it made the rest of the week feel really long.

Thursday, August 6, 2009

4 month snap shots

I know I haven't posted recently, I've been very tired. My perfectly sleeping child has started rolling over in the middle of the night and getting very upset about it.

Anyways, here are a few recent pictures...


I think this one is my favorite!




And here is a video of my little guy trying to be mobile

video