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.

Love,
mama

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:

I can edit video!

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

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.

Aunt Jennifer, we may need another one...

A few days ago Jack discovered the bear that his Aunt Jennifer made for him. He loves the thing. If he sees it laying on the floor he will crawl to it as fast as he can and tackle it. Maybe he's been watching too much football?

So Aunt Jennifer, we may need another one at some point. He's a bit rough with it :-)



And you can see the new furniture and TV in the background.

And pardon the talking in the background, I was on the phone with Jonathan at the time.

Video's

I don't have time to do a big post here, I'm too tired and need to go to bed, but everything is fine.

Here is Jack seeing a dog smaller than him for the first time.



And her is Jonathan and his mom at Christmas. We just got together with his side of the family over the weekend. A good time was had by all and as always, a little silliness went down.

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

The long awaited vacation post

Overall the vacation to Corpus Christi was great. My biggest concern was the car ride. We got him a new car seat so he could sit a bit more upright. We also put a fan back there, a few toys, and I rode in the back. It was a pain, but it worked. Jack had this look on his face most of the time.

The hotel was wonderful (Thanks Dad!) and I loved the light in the room so I took a ton of pictures.


We didn't do a ton because we didn't want overwhelm Jack. We did make a trip to the aquarium! We saw the bird show...

And the dolphin show

And looked at all the fish.

Jack really liked looking at the tanks. He slept through everything else.

We told him this was a real turtle, but you can tell by the look on his face that he didn't buy it.

We of course couldn't take a trip to Corpus Christi without going to the beach.

We didn't stay for long because it was very hot and we didn't want him out in the sun too much. But we did get a video of his first dip in the ocean.



Later that day we went for a dip in the pool at the hotel. It was a small inside pool and was just right. Jack loves swimming.




We also at a ton of sea food and did a lot of walking around town. Jack slept really great the whole time and did really well overall. I think he likes vacation.


The car ride home didn't go quite as well. He did okay but we stopped in San Antonio for a while and it ended up taking us 8 hours to get home so there was a lot more crying.

Vacation summary by Jack

(Originally posted June 20th, 2009)

Here are Jack's thoughts on the vacation. (Video shot on location)




Stay tuned for more...

Overachiever

(Originally posted May 7th, 2009)

Jack rolled over for the first time on the day he turned one month old. Both Jonathan and I were there to see it and it was cool but honestly I thought it was just a random thing. I didn't expect him to do it again until he was about 3 months old. Clearly Jack had other plans. Now I put him on his tummy and he refuses to stay there long. He repeatedly rolls over every time. I have a feeling we may have our hands full with this one!