Sunday, October 31, 2010

My Jack-O-Lantern

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!

Saturday, October 30, 2010

set back

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.

Thursday, October 21, 2010

My new favorite number

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.


Saturday, October 9, 2010

quick update

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: