Back from Dallas

Over the weekend we went to Dallas to a "town hall meeting" with some of the doctors at the TS clinic.

The hospital was awesome. The doctor was great. And it was wonderful to get to spend some time with some of the other families too. We had lunch with the head neurologist who is the head of the clinic there. He asked about Jack's treatment and he totally agrees with everything that has happened so far.

I kind of wish we would have had Jack on us so that we could have shown him off, because he's that dang cute. But my mom and Ron drove up to take care of him for us so that we didn't have to worry about him at all which was great.

We will probably have Jack become a patient up there so that we can get all of his yearly scans taken care of at once instead of running around Austin for a few weeks. The hospital will also pay for the genetic testing if our insurance won't cover it. I've got to set up an appointment with the genetic counselor to see if we can get approved.

The rest of the weekend was spent socializing, which was great. It had been way too long since we've seen some of those people! We got to see Jesus and Patty and their boys. The boys were so good with Jack, it was adorable. I wish I had a picture but I was too busy actually enjoying an adult conversation.

That night we got to see my friend Kat who moved to Dallas about 2 years ago. Kat and I met in high school. We did high school retreats together and also a few middle school retreats. Then we happen to bump into each other at a college retreat. We also went to UT at the same time and would meet up for lunch on occasion. Anyways, we're old friends. And Daniel happen to be up there for a lacross game. I stared babysitting Daniel when he was 3. He's now 20. I feel old. But it was awesome to see them and hang out. And this is the only picture I took all weekend.


Then Sunday we saw Joe (one of Jonathan's roommates in Dallas) and his wife Kim and their 2.5 kids. Kim is about to have their 3rd in about 6 weeks.

So, the weekend was great. Of course Jack slept in the bed with me and Jonathan ended up on the couch. It's amazing how much space one little body can take up. And the driving wasn't great but we made it.

And Jack continued to have seizures. Yesterday he was put on an additional med. Not what we wanted, but we need to get them stopped. Hopefully this will do the trick. The poor baby was so cranky today. I don't know if he's dizzy or his head hurts or what. He keeps putting his head down on the ground and moaning. Hopefully he will adjust to whatever is going on soon.

A rough few days

Poor baby Jack. I'm up at midnight because I took a nap with him today and because I'm worried about him.

Yesterday and last night were awful, seizure wise. He had 9 seizures during the day and then 2 at night. Last night he went to bed at his normal time, about 7-ish but then woke up around 11. He didn't cry, so I left him in his crib but I did notice him pulling his hair. Around 11:30 he started to get a little upset so I went in and he didn't calm down or go back to sleep until 2. It was awful. Maybe the hair pulling was because his head hurt? I'm not sure.

Then I heard him at 3. He was doing this pathetic scream but with his eyes closed. That went on and off for about 10 minutes but he never sat up or even opened his eyes so I didn't go in. At 4 he was up again, screaming bloody murder and didn't calm down until 4:30. He had also had a diaper leak and I gave him some tylenol because something was hurting. He did the same thing from 6-6:30.

He is very good at putting himself to sleep. Something we really had to work at after the steroids. It took a long time but it was totally worth it. I've never let him just cry, but I also know his noises really well and if he's not distraught then I give him a few minutes to work things out. Given his medical condition I will NEVER just let him scream. He usually calms down really quickly, but last night was a different story.

This morning I called the neurologist on-call and was super glad it was our Dr. He told us to give Jack a one time boost of the seizure meds and then up the dosage again this evening. This basically maxes out his dose of the meds. The doctor is discouraged and thinks we are going to have to add another med which he doesn't really want to do but he doesn't think that the increase is going to make much of a difference. I do think that this med is keeping the spasms away, it's just not treating the partial seizures.

And then today he had 8 seizures. He cried most of the time we were at my mom's for Easter lunch. Jonathan and I actually ended up eating on the patio because Jack was content splashing in the puddles outside for a bit. We left early, gave him some motrin, and put him down for his nap. He was in a much better mood after the nap but still had a few seizures.

And days like these last few are extremely stressful. I just want my baby to be okay. I didn't sleep hardly at all last night and I'm up after midnight tonight because I just can't sleep. I desperately need sleep because God only knows what tomorrow is going to bring and I deal with all of this better if I'm rested.

And next weekend we are going to Dallas for a town hall meeting with some of the doctors from the TS clinic up there. I need to call and see about getting genetic testing done while we're there and also check to see if the hotel has cribs. Not that ya'll needed to know that, just that if it's written down maybe I won't forget.

Ok, back to trying to sleep. Thankfully all is quiet in Jack's room.

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: http://www.firstgiving.com/jack-a-roo

Kelli's page in Portland: http://www.firstgiving.com/jackaroo_portland

Mandy's page in Denver: http://www.firstgiving.com/amandastringer

Netty's page in Scottsdale: https://www.firstgiving.com/lynettelewis

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.

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.

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.

love,
Mama

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.

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.

http://www.cecentral.com/activity/2054

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!

a new diagnosis - Tuberous Sclerosis

I'm not really sure what to say about all of this and my head is spinning, I'm in shock and a bit confused because Jack screamed through most of our hour long visit with the doctor so it was hard to take in the information. He told us to email him with questions, so we're getting a list together, and we see him again in about 2 weeks.

Tuberous Sclerosis is a genetic disorder, you can read more about it if you click on the link. And this is another good article. I'm just going to hit the highlights of what I picked up from our appointment and leave it at that for the time being.

Jack will not grow out of the seizures. He will be dealing with them his whole life. He has some brain damage that is causing these.

There is a surgery option where they first do surgery to place EEG leads on the surface of his brain. Then he is hooked up to an EEG for a week so they can isolate exactly where the seizures are coming from. Currently the doctors suspects 2 places. Then they remove the damaged portion of the brain. It would be best if the surgery is done before the age of 2.

The current plan is to simply treat the seizures. The med he is on has reduced them so we're increasing it again and we'll add another one if we need to.

What we're seeing now are small partial seizures, the infantile spasms are gone, which means no ACTH, yay! And the doctor said had we not marked them on the EEG (every time we saw something we had to push a button) that he wouldn't have even seen them while just scrolling through. Jack even had one while we were in his office and he didn't really pick up on it but he totally believed me.

Epilepsy and seizures are only half of this genetic disorder, the other half is tumors. All tumors that come of this are benign but need removing so they don't cause other issues. People get tumors in the eyes, heart, brain, and kidneys.

Jack just had an MRI so we know his brain is clear of them. He went to the eye doctor recently so we know his eyes are clear. We have a scan of his kidneys tomorrow and I've got to set up an appointment with a cardiologist.

He will have to have these scans for the rest of his life. I think about yearly or if he's having any trouble.

The doctor said that a brain tumor is very likely at some point. Jack's heart is likely clear because usually those develop very early and get smaller as they grow so even if he does have one it most likely won't need surgery.

Those are the two medial things to deal with, seizures and tumors.

There is a research center in Dallas that specializes in this that we will likely be visiting at some point.

There is such a range of how this effects people. Some people don't know they have it until they are 30 and are living a totally normal life. Other people are mentally retarded because of it. Learning difficulties, autism, and a host of other things are all things that we could be dealing with down the road. For the time being, he remains a happy, funny, active little boy who's development is right on track.