I thought I would have to teach my daughter about the world; turns out I have to teach the world about her. They see a girl who doesn't speak,
I see a miracle who doesn't need words.

Wednesday, March 20, 2013

Neurology Update

It's taken a while for me to be able to sit and write about the neurology update.
While I truly appreciated the Doctor taking a ton of time to speak with us, something I'm not really used to, she was a very straight shooter and she definitely didn't mince any words.
Basically she told us that she felt that Alex had a degenerative brain disorder.  She said that while we didn't capture any seizures while she was in the hospital, her EEG was very abnormal.  She has bilateral frontal and central sharps, as well as left temporal secondary generalization sharps.  She said that Alex's brain starts "short circuiting" in one part of her brain, but within seconds it transfers to her entire brain and basically her brain wiring is abnormal.  It's not fixable.  She said she couldn't say for sure if Alex would start regressing in a year, or 20 years, but that was her best diagnosis.
She also told me that similar to SIDS (Sudden Infant Death Syndrome), there is something called SUDEP (Sudden Unexplained Death in Epilepsy), and although rare, it was something we should be informed about since it occurs when people, like Alex, are on multiple medications and seizures are still not controlled.  Whoa. 
She also started talking about genetics and how it was important for us to revisit a genetic diagnosis (something we do every few years) because technology is always changing and a diagnosis could be very beneficial for Zach once he gets married and has children, and whatever Alex has could potentially effect Zach's children. 
She said a few more 'sharp' things about the money we spend on extra therapies for Alex.  I told her that I'm a realist - I don't expect Alex to wake up one morning, run past me in the hallway and tell me she's going to have breakfast.  But I WILL do WHATEVER I feel is in her best interest to give her the best quality of life.  I think she could tell by my tone it wasn't really a conversation that I cared to continue.  She had other things to say and we talked for almost an hour. I feel like she got a better picture of us by the end of the appointment.   
That was A LOT of "bad" information to take in, and I'll admit - I have not cried at one of Alex's appointments since she was an infant and Doctors gave us the worst case scenario every time.  I held it together while we were meeting with the doctor, but once we were back in the waiting room waiting for lab slips to get her blood drawn, I lost it.  I couldn't stop crying.  The more I tried to console myself, the harder I cried. I looked at her sweet face and it was way too much for me.
At the end of the appointment the Doctor added a THIRD seizure medicine called Zonagran.  We started out at 25 milligrams, the following Sunday we increased her to 50 milligrams and this past Sunday she was upped to 75 milligrams.  Her Depakote seizure medicine metabolizes through her liver so we get blood draws every three months for her liver levels, as well as her Depakote levels (which are currently high) and now this new medicine metabolizes through her kidneys so we will have to have her kidney levels checked every three months as well. 
The first night we added the new medicine Alex seized five times in a two hour period.  Unprecedented for her.  The "good" news is that the doctor said that short seizures are not hurting her and these seizures were about 7-10 seconds each.  Still, I felt it was quite coincidental that she had that many since starting the new medicine.  I called the on-call doctor (which is one thing I hate about switching doctors...her old neuro is the only one at the practice....if I had an issue, I would talk to him....now that I've switched, it's a crap shoot at who I will talk to, and of course, the doctor we switched to was not the doctor on call).  She has had a few since, but nothing that extreme.
I had a really hard time after that appointment, but I'm starting to feel better.  Every time I find myself getting a bit down, I think of the bible verse  Jeremiah 29:11...For I know the plans I have for you, plans to prosper you and not to harm you, plans to give you hope and a future.  I have to believe that.  I have to believe that this new doctor hasn't known Alex since she was a baby.  Doesn't know how far she's come from the screaming baby she was, and while she hasn't hit "traditional" milestones, she has hit her own milestones. It's not that I'm burying my head in the sand and ignoring what the doctor said, but I don't believe it's degenerative.  Doctor's have been quite wrong about her before.  She's PROGRESSED, and that's good enough for me!

Sunday, March 3, 2013

Random Stuff

It's been almost a month since my last post so this is a totally random post in no particular order!
Two weekends ago Alex and Zach finished up their basketball season.  Zach's team didn't make it to the final playoffs and he wasn't too happy about it - but it was a good lesson in there has to be a winner and loser in every game - even the professional NBA.  Not really what he wanted to hear, but it's life :)
Alex finished the buddy ball season with her final game, award ceremony, dance party and ice cream party.  I'm SO glad we discovered Buddy Ball and I so wish we had done it sooner.  I can't wait for baseball to start in a few weeks!
Here she is dancing with me to Whoop Em Gangnam Style!

Next she was called up for her trophy by her awesome coach Eric...(I told him we wouldn't play baseball unless we were on his team) :)
She was very proud of her trophy!
And I was very proud of her :)
Moving on to Valentine's Day....Zach wrote me the MOST beautiful card....and inside he put $2 and told me to go buy myself something pretty.  He's such a joy - no other way to put it.  I've put the card away for safe keeping - it's definitely a keeper and I know I'll always remember the huge amount of love I felt reading that and the happy tears he made me shed!
When he  got hom from shool his bed was all decorated in what has become a Valentine's Day tradition and he was quite happy!
Rudy - or Rudy Tootie Fresh and Fruitie as he's quite often called has been A LOT of WORK - but a lot of fun too!  He's so stinking cute :)
He LOVES stuffed animals and it's not uncommon to see him all curled up with one or two of his favorites.  Ironically one of his favorites is a cat!

He is so smart and will sit, stay, give you his paw (actually both paws), lay down and dance....yet he STILL can't figure out that he's supposed to go to the bathroom OUTSIDE!! :)  Hopefully that will be mastered soon!

Such a cutie!

At the beginning of last week Alex was having a seizure and I went running into her room at 2AM and unfortunately ran right into her door and broke my pinkie toe.  Ouch.  Then last Saturday I was carrying her up to bed and once we got up the stairs she got really excited and threw herself backwards with all of her might...I put my arm behind her and she came flying back forward with the same velocity and her tooth crashed into the bone under my eye...Double OUCH!
I told Aaron it was a good thing we had a witness at the house or people were going to start talking about him!  I sported that nice black eye for a whole week.
But how could you be mad at this sweet face?!?

For the most part we have the kitchen back together - not without drama of course, but hopefully I'll have pictures to post soon.
Friday we went and met with a new neurologist at MCV.  I'm still struggling with and trying to digest everything she had to say so hopefully I'll be able to post about that next.
We've had a tough weekend and I'm tired so that's it for now!