Monday, May 14, 2012

Why we Walk

We are headed to Dallas this year for a walk for TSC to support the TSAlliance.  There is a link to their website on the right side of the screen.  The mission of the TSAlliance is to find a cure for TSC while improving the lives of those affected.

TSC is something that we can't escape.  It's an every day reality around here.  We do our best to provide Jack with a "normal" life.  We go to playgroup, we go to the park, we can now have family meals together.  But there is no getting around the fact that he has almost daily seizures.  That half the time our plans change because he is too wiped out from a seizure to make it to playgroup or the park.  That we have to be very careful where we go out to eat because we have to make sure there is something on the menu he can have.  That we have 2 therapy session a week, soon to increase to 4 to make an attempt at getting him caught up.  There is no way around that he is behind in ever area developmentally. 

People often tell me that I am "the perfect mom for Jack" like I was somehow destine to have a child with special needs.  Let me tell you, NO ONE is prepared for anything like this and I refuse to believe that God would plan it this way.  It gets thrown at you and you either step-up, or fall completely apart.  Some people do both.  A vast majority of children in the foster care system have either medical needs or special needs or both, and sadly there is a reason for that.  People aren't picked for this, it just happens.  Believe me, if you ended up with a special needs child, you would have the same choice, and I promise, you don't feel special or at all prepared for it. 

We can't help but feel luck that Jack is doing well compared to some.  We also can't help but feel sad and guilty at the same time when we see children quite a bit younger than Jack do things that he can't do yet.  It a very strange mix of emotions that I don't really know how to put into words.  We are lucky that Jack "only" had heart tumors.  Only heart tumors.  Who feels lucky for that?  We know that kidney issues, eye issues, brain tumors are all still on the table.  I scan his face constantly for any little bump that might be a facial tumor.  Because as benin as facial tumors would be, it would be an outward sign that would set him apart forever. 

I think overall our attitudes and contexts have been pretty good.  Lets face it, no matter what he has or how bad it gets we will always love him to pieces!  He really is ADORABLE and honestly the sweetest child ever.  He loves to give hugs and kisses.  He asks for high fives from his friends and knuckles.  Yesterday on the boat he would scream "hit it!" when he wanted to go fast and we discovered that he is a little speed demon!  He also tries to comfort people when they are sad and if he bumps something he will give himself a kiss and say "all better". 

We are on a roller-coaster and there isn't much we can do but hold on for the ride.  We enjoy the good times and make it through the bad while fighting for him every step of the way.  I can cook, but even that doesn't seem to be doing much good lately.  So this is why we raise money and walk, because the only way to really make his life better, is better treatment, every therapy we can through at him, and possibly a cure.  Finding a cure really is a reach, and I don't know if it will happen in our lifetime, but anything is possible.  I refuse to dismiss it because it seems hard.   

So we raise money and we walk for Jack, for his friends with TSC, and for all of the families who have been put through this hell and who live in it on a daily basis.  Because maybe, just maybe it can help in the long run.  The Jollyville Sertoma Club has graciously bought our team t-shirts and also offered to match all donations up to $3,000.  I am hoping to at least raise that so we can get the match.  All donations need to be made by Thursday evening though so I can pick up a check on Friday morning to take with us to Dallas.

If you are willing and able, please make a donation.  Even $5.00 helps!  Click here and read more about Jack's story and to make a donation.   This little boy is worth it! 

Friday, May 4, 2012

We are still alive over here!

Sorry for such a long time between posts.  I constantly have blog posts running through my head and even a few saved as drafts that just haven't been completed yet.  So I'm just going to combined a lot of things into one and at least get something up here! 

First there is Jack's 3rd birthday.  I can't believe that he is 3 already.  The last three years have been a roller-coaster to say the least, but he is amazing.  He is smart, and funny, and such a thoughtful little boy.  He is definitely not a baby anymore and while that saddens me to some extent, I'm more overjoyed than anything to see him growing and changing and developing. 

He had such a good time with his cousins at his party and it was so much fun.  I'm just going to scatter some pictures from it in here for the heck of it.

Really the main reason I have been reluctant to write a blog post is because we've had a really tough month.  It's crappy news and there is just no way around it.  Jack had 15 seizures this month, which is 5 times more than the last several months.  January-March he had only 2-3 seizures a month and was doing so well.  Still not seizure free, but we could live with a small number.  As much as I hate to admit it out loud, I honestly don't expect him to ever really be seizure free.  I used to hold onto that hope but after everything we have been through, I just can't anymore.  

  So what changed.... well, he had his 3 year well check visit and I allowed him to get one vaccine.  He hasn't had any for over 2 years and he was doing so well that I was hoping that one would be okay.  The doctor and I discussed it for a while and we came to the conclusion that out of the ones he has left (he's close to being fully vaccinated) DTaP would be the best to give him because of the rise of whopping cough.  I have gone round and around about giving him DTaP because the last time we let him have that one was when he was 4 months old and I KNEW he was having seizures but the doctors weren't convinced yet.  That was the appointment when we were referred to neuro to see if it was anything to worry about.  That evening after he had the shot he had a 3 hour screaming fest that was the most awful thing every followed by a sudden increase in the frequency of the seizures and the intensity.   Anyways, fast forward to now when he's had brain surgery and his seizures are relatively well controlled and his immune system is stronger and everyone agreed that he could handle it. 

Do we know for sure that the vaccine caused the increase in seizures?  Of course not.  It is the only thing I can think of that changed around the time of the increase, but that does not mean for sure that it caused it.  However, he will not be getting the last booster of DTaP ever.  I could easily get on my soap box here about how healthy kids should be vaccinated so that children like Jack, who really do have severe reactions and consequences to these things don't have to get them or worry about getting sick, but that's not going to get us anywhere.

Needless to say I feel horribly guilty for letting him have it.  I was weighing if he would have more seizures from actually catching whopping cough (he always has more seizures if he's sick) or more from the vaccine.  It's one of those things that I will just never know and I can't go back and change it at this point so we will just move on.  We have increased his meds and if that doesn't work there is talk of putting him back on the full ketogenic diet.  We will simply have to see what happens.   

As for me, this weight loss challenge is over this weekend.  The last month has been really tough.  My trainer got fired from the gym so they stuck me with this new guy.  It was not a good match!  I'm tired of having trainers who like to show me off, to be honest.  It's like they have some competition going to see who can have the most people stop and drop their jaw at what they are putting someone through. 

I have been stuck at the same weight for a month now and it's ticking me off.  I can understand a plateau lasting a week or 2, but a month is ridiculous.  In that month I did lose 3% body fat so I must have been gaining muscle, but I didn't even drop a clothes size.

Anyways, over the whole thing I have lost 21 lbs, 11% body fat, and dropped one dress size.  I figured that should be at least 2 dress sizes, but clearly not.  Bummer.  Not too bad, but also not anywhere near where I want to be.  I'm just going to keep plucking away at it.  I do feel tons better and I know that I'm a lot stronger so I just have to keep working at it. 

The only other big thing going on is that we are doing a walk for TSC as Team Jack-A-Roo again.  It is at least something positive to put our energy towards.  The link to the donation site is here.  Even small donations help!  Please consider helping out if you can.  We are making an attempt to raise $7,000 in only 2 weeks which is a bit ambitious so we need the help!