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.

Sunday, December 30, 2012

More Seizures

Last Wednesday we had our scheduled visit with Alex's neurologist.  She's been seizing, on average, about 2-3 times a week.  Her blood levels looked good so the doctor decided to up her Keppra to 7.5ml's at bedtime to try and "keep her covered" during the night since that's when her seizures are occurring.  He said her Depakote levels were about as high as he wanted to go so the Keppra increase was the best course of action to take.  To recap, she's been on 5ml's of Depakote and Keppra in the morning, another 5 ml's of both in the afternoon and was at 7 ml's of Depakote at night and 5ml's of Keppra.  We started the upped dosage Wednesday night - and she had a seizure.  And she had another on Friday, and Saturday, and Monday and Tuesday.  Merry Christmas.  On Christmas Eve she was out of it.  She sat in her chair and was dazed.  Same thing on Tuesday - needless to say she didn't have a very good Christmas (Christmas post to follow).  She also started having continuous, random movements with her mouth.  Not normal.  It was so hard to see her in such a dazed state all day.  We were at my sister's house on Christmas day and she was out of it, and then really agitated.  Then she started crying so we had to cut our Christmas day short (right in the middle of presents) to take her home.  Aaron and I decided that night that we were going to bring her back down to the 5ml's of Keppra that she had been on and hoped she wouldn't be so out of it.  On Wednesday I called her neurologist and told him how she was acting and he immediately said to bring her back down to the 5 ml night time dose (which we had already done the night before).
We're still waiting....almost 4 months later...for the seizure alarm for her bed.  In the meantime, she's still seizing every night.  The other thing we discussed at her appointment is that when she's sleeping she will jerk really hard and yell out - it's almost as if she's dreaming and she's falling in her dream - it's the only way I can explain it.  Her doctor said those could be seizures as well.  We discussed next steps and it seems like we will likely go back in the hospital and have more EEG studies done to see if those in fact are seizures and if the grand mal seizure pattern has changed.  And, because we can't keep her at the Keppra dose he wanted, he said he will either add a THIRD (Lord, I hope not) seizure medicine, OR take her off one of the two she's currently on and try and change the meds while she's in the hospital when they can monitor her.   
The one thing the doctor said that really irked me was, "Do you know how many Angelman parents would be thrilled if their kids were averaging two to three seizures?"   Thrilled? Ugh.  And I had to remind him that we only have a CLINICAL diagnosis, which is crappy in itself.   What if all of the doctors are missing a bigger part of HER picture because they're just assuming it's typical to the syndrome, the syndrome they can't definitively say she has?  I'm part of the Angelman community - I KNOW all of the devastating statistics.  Doesn't really make it any easier. It doesn't matter if your child has Angelman Syndrome, or "only" epilepsy, I don't think any parent should have to watch their children have a seizure and feel so totally helpless.   Heck, for that matter, I wish there was no such thing so children wouldn't have to endure them either. But I guess that can be said for any type of diagnosis a parent is dealt with.

Wednesday, December 19, 2012

Buddy Ball!

Two Sunday's ago Zach had an early Saturday basketball game.  When we walked in there was already a game in progress.  I was trying to get Alex straight so I didn't realize for the first few minutes that it was a Buddy Ball game.  If you don't know, Buddy Ball is a program designed for children ages 5-21 with intellectual and/or physical challenges.  If the players need one, a buddy is assigned to them to help assist them play the game.  The whole time we were watching everyone was smiling.  Even the typical kids waiting for their game to start were clapping and cheering for the kids playing.  I was kicking myself for not thinking about it and signing Alex up.  One of Aaron's co-workers has a son on the team and he also happens to be the coach, so he told us that we should bring Alex for the next game and she could play.
So this Saturday, it was quite the fire drill getting everyone out of the house, but Alex went to her first basketball game - and all I can say is that it was AMAZING.  The love and energy that was in that gym is just indescribable. 
Since it was the last game before the Christmas break, the kids got a special visit from Santa.  And oh my goodness some of the children were just beside themselves - like Alex's friend Jonathan! 
The kids got to sit on Santa's lap and then got candy canes  Alex was the last to go - and she just stared at him!
Whoops - notice her hand in Santa's beard?!? 
 And notice how Santa is now holding her hand?  Yep, only my kid tried to rip his beard off :)
And then she wanted to kiss him.
Zach was so excited that she got a jersey.
Game time....she LOVED being run up and down the court.  And the more claps and cheers the bigger her smile got.
Quite a few times she and her buddy actually got the ball!
This was her buddy for the game, Davis.  He was so sweet with her - and oh so polite too!
Since Alex is quite the flirt, I think she really enjoyed all of the boys on the court the most.  She literally smiled the whole time. 
The head of the buddy ball program gave Alex her Princess Santa hat...and as we all know, she is quite the Princess, so she wore it well :)
This is her friend Matthew giving her a hug when the game was over.  Matthew was one of the first people to come and greet her when we were there for Zach's game.  Matthew said Alex was quite pretty and he thought she should be on his team.

It was truly an awesome morning.  I loved every single second of it and I had a smile on my face the entire day.  It's an event I think everyone should try and experience at least once whether you have a special needs child or not. 

Alex had a great time and I can't wait till the holiday break is over and the games resume!

....this smile says it all!!!

Sunday, December 9, 2012

Sibling Love

This past week Zach came home from school with a harmonica.  By about the 50th renditions of Twinkle, Twinkle, Jingle Bells and Mary Had A Little Lamb I was so ready for him to move on to something else, but I had put Alex on the couch with him and she was completely mesmerized by him playing.
When I finally had all I could take I asked him to please take a break!  I was in the kitchen starting dinner and Zach said, "Awe Mom, come look at Sissy".  She had laid her head down on his shoulder and was so content to sit there with him.  Normally she's super excited so she's either yelling or pinching you!
They really had a nice bonding session for about 30 minutes.  Zach is so patient with her.
And she was SO happy to have him all to herself.  She kept reaching up to him to hug and kiss him.

It was such a sweet site to see.  For a brief minute I wondered what their relationship would be like if Alex was typical. But then I opted to enjoy the moment and not play the what if game with myself. 
Break time was over - back to the harmonica!  Clearly she didn't care...

She was one happy girl.  And I was one happy mom!