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!

Tuesday, November 27, 2012

Happy Birthday Alex!!!

11.  Wow.  In some ways it's so hard to believe my baby girl is 11, and in some ways it feels like I have no clue what my life was like before this journey.  When you have children, your main mission is to teach them.  Teach them what is right and wrong, teach them how to be good citizens, teach them their ABC's, teach them everything they need to know to be happy and successful.  In our case, Alex is the one that has done all of the teaching.  She has taught me how to be patient.  She has taught me to be grateful.  She has taught me not to judge.  She has taught me how to live in the moment.  She has taught me how to laugh in situations when all I want to do is cry.  She has taught me the true meaning of perseverance.  She has taught me that hard work DOES pay off.  She has taught me not to sweat the small stuff.  She has taught me that there are good and caring people in this world.  She has taught me that I am so much stronger than I ever thought I could be.  She has taught me how to be an advocate.  She has, unfortunately also taught me what true heart break feels like.  I don't say that in a bad way, but when she can't communicate her needs/wants/hurts, it's heartbreaking.  When all I can do is hold her when she's seizing, it's heartbreaking.  She has taught me so many other lessons, but probably the most important is true, unbiased, unconditional love.  She is definitely a phenomenal teacher of human emotion.

Since her birthday was on Friday and school was closed for the Thanksgiving holiday, we went to her school with cupcakes to celebrate on Wednesday. 

We came in with quite the entourage!  My niece Emily, my mother-in-law Bev who flew in from Niagara Falls, my mom and my dad. 

Me and Mommy being silly!

Oh, birthday celebrations are great!!!

On Friday morning when she got up we celebrated with some presents....

Alex LOVES rains sticks.  Always has.  Have a feeling she always will!  The problem with the rain stick is that she can't turn it over herself to make the beads fall and make the noise she loves to much.  I found a ball that she can hold onto herself that has a mini rain stick inside so she can make the noise herself...SCORE - she loves it!!
Friday night we had some friends over for cake for her to celebrate.  We decorated the kitchen in a princess theme and everyone wore a tiara - even the boys...they were great sports!

The birthday princess!

Travis, Alex and Tabitha...being silly!

Zachary wrapped his own presents for Alex and helped her open them - I always say it - but I LOVE how she looks at him.

Birthday love from Daddy.

No matter what the present is - you can be sure it will be a hit as long as there is tissue paper involved! 

Her new silly hat from her Auntie Dearest!

On Saturday it was my Dad's birthday so my mom hosted a FABULOUS birthday dinner for Alex and my dad.  Alex LOVES Elmo so my parents went on countless searches to find the new LOL Elmo.

Needless to say she was not disappointed, and of course, Zach was right there to show her how it worked.

Birthday cake time for Alex and her Papa.

Her favorite gift was probably all of the love from her favorite man.

I would say she was a happy birthday girl!!
I did a REALLY bad job of getting pictures with her and family and friends this year....so I apoligize!
I love what Aaron posted on Facebook as his status for the day....I think it emulates how a lot of us feel and our wish for her.
"Happy birthday to my little angel who is 11 years old today, I love you Alex. You bring so much joy to our lives and you are my special girl. I pray for a great year of nothing but amazing accomplishments and health."
So happy birthday my sweet girl.  You are loved beyond words.

Wednesday, November 14, 2012

Catching Up

I don't know where to start I haven't blogged in so long :)

I guess I'll start with Halloween.  Zach had his costume picked out and purchased a month before.  We had gone to see the movie Hotel Transylvania and he decided he wanted to be a vampire.  He's a kid who knows what he wants when he wants it!  Alex, yeah, I was out getting hers the day of!  I wasn't even sure I was going to take her out - but Aaron said of course she's going!  It's not that I didn't want to take her - she loves her early bed time - sun goes down and she's ready!  Plus it was COLD - and quite frankly, she couldn't give a rip about Halloween as far as I can tell!  And she can't eat the candy she gets anyway.  I will say since I waited till the last minute it was by far the worst costume year for her - and I didn't even really take any pictures this year, which isn't like me. 

Alex looks a little scary in this picture - guess that's her Halloween look!  She was a girl vampire.

Zach "without his teeth"...
And with...
I got Zach's Fall school pictures back - he looks so grown up - but I think I say that every year!
I never got Alex's and couldn't figure out why - then come to find out, I never turned in the check with the order form.  Ugh, Seriously?!?  Tabitha had taken one of the pics the photographer took with her phone.  I guess I'll need to call the studio and see if it's too late to order some.  I swear I do not know where my mind is lately!!!

As I usually do, I got fed up and frustrated with her hair last week!  She has always had beautiful hair - very shiny with gorgeous purple highlights.  Ever since the lice episode back in the summer, her hair has been dull and 'icky' looking.  The chemicals totally stripped her hair and it wasn't looking healthy at all....so we cut it all off again!  It really is so much more managable this way.  It's already starting to look healthier but I think it makes her look a lot older!

Heading off on the bus the morning after her cut :)

Now on to the BIG and EXCITING news.
Despite the seizures still being an issue (and adjusting her meds AGAIN), Alex has been making some pretty amazing progress.

Because of her low tone she's never been able to spend any time on her stomach holding herself up.  Lately she is trying to get up on her arms by herself, and she's been tolerating the position for long amounts of time.  And she is a LOT more focused on things.  Not only is she supporting herself, but she's actually reaching out to activate her toy....HUGE progress for her.

Last week we were THRILLED to start working with our physical therapist Shannon again.  It's been a long time since we've had her as Alex's PT and we couldn't be happier. I was really concerned with the tightness in Alex's legs - her hamstrings were so tight we could barely get her legs straight.  Every time we would stand her up she would have her knees completely bent and she looked liked a hunch back.  When Shannon saw her last week she agreed it was the tightest she had ever been.  And she mentioned that if we couldn't get her to loosen up there was the option of serial casting both of her legs to get the muscles to stretch.  I can barely carry her now - I can't imagine how heavy she would be with two casts on!  NOT an option!!!  We always stretch her out, but we now have a really vigorous stretching routine we do with her.  It's been difficult for me because Alex is not a crier - and when we stretch her, she cries.  I can only imagine how painful and sore she must be and that makes me sad for her.  BUTTTTTTTTTTTTTTTTTTTTTTTTTTTTTTTTTTTTTTTTTT, the stretching is clearly working.  This weekend Alex WALKED in her walker WITH ZERO ASSIST for 15 MINUTES!!!!!  She facilitated every one of her own steps.  The first time ever!!!  I uploaded a video of her walking on facebook and wish I could here, but the files too big.  I'll have to take a shorter one.  She's been walking every day in her walker since.  We still have a lot of positioning and things to work on, but the motor planning of right foot, left foot, right foot, left foot is there and that is more than half the battle!!  Definitely one proud Mama!!!