Wednesday, March 31, 2010

12 months

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.


Friday, March 26, 2010

Team Jack-A-Roo

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:

Kelli's page in Portland:

Mandy's page in Denver:

Netty's page in Scottsdale:

Thursday, March 25, 2010

Confirming the diagnosis

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.

Sunday, March 7, 2010

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.

Friday, March 5, 2010

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.

Thursday, March 4, 2010

11 months old

Dear Jack-a-roo,

You are now 11 months old. I often find myself wondering where my tiny baby went. You tend to do big things the day you turn a month older and this month you took your first step. Aunt Kelly was here and you were excited to see her. I put you down, you stood, stepped towards her, and fell into her arms. It was a shaky, wobbly step, but it was your first and I'm so excited that so many people were here to see it.

You are a moving fool. You are into everything and everywhere and I wouldn't want it any other way. People see you and say, "wow, you have your hands full" and yes I do. They are very full and that's exactly how I want it. Trying to put clothes on you is like trying to put a sweater on a cat and trying to change your diaper has become almost impossible. Seriously, it's like wrestling an alligator. And sometimes you end up like this:

This last month you saw snow for the first time. It's rare here in TX and it was the most snow we've had in 6 years. Every time we come home from somewhere you throw a fit if you don't get to sit in your swing in the front yard. That day I had you bundled up and I put you in the yard. You tried to feel the snow with your hands but they had gloves on them so you did the next logical thing, stuck your face in it. The look you gave me after you tasted it was priceless.

Later that afternoon your GiGi came over and she pushed you around the yard in the recycling bin so technically you've been sledding too.

Your favorite activity by far is swimming. You are a fish! You have no problem going under water, holding your breath, or kicking. Daddy even says that you swim better than he does. You have no fear which means we have to watch you extra close. You are so excited every time you get to go swimming, it's awesome. I can't wait for summer time so we can take you to the lake.

I have lots of video of you swimming and I'm trying to edit it all together. We'll see if I can figure it out. It's so cute and impressive that it's worth me struggling with it to put together.

We also finally got a diagnosis as to why you are having seizures. We are told that you won't grow out of them and while that's a hard thing to hear, you handle them like a champ. You just go on as if they are no big deal and I'm trying to learn from you and do the same. I write them down, and go on. I don't make a big deal out of them because I don't want you to think they are something to be afraid of. There are a lot of frightening statistics with TSC but we're focusing on how amazing you are and how well you're doing. You are the light of my life and you will forever be my perfect little man.


ps - If I'm crying a lot in the next month it's because you are going to be a full year old. I'm overjoyed and sad and have a lot of emotions mixed into it. Sorry, it's what mom's do.

Wednesday, March 3, 2010

good video about TSC

I saw a good video describing TSC (Tuberous Sclerosis Complex). It's long, about 40 minutes, but it goes over everything pretty well.

At the top you will see a green button that says "Activity Home". Just to the right of that is a button that says "webcast". If you click on webcast the video should start.

All I can really say after watching that is this disease sucks!