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, August 22, 2012

Non Verbal

The hardest part of being Alex's mom is her being non verbal.  Is she tired?  Is she hungry?  Is she bored?  I can guess - and I can try to read her body language, but I don't always get it right.  And sometimes it truly can be heart breaking.  Two incidents the past two weeks have really driven home how hard and frustrating, for both of us, it is.
A few weeks ago she started her new seizure medicine.  About a week after, she started itching her head.  I checked the back of her head to see if maybe she had a bug bite or dry skin - checked the paperwork that came with the medicine to see if there were any side effects and there was nothing about skin irritants.  She kept itching.  I checked her several times for any signs of an irritant.  My mom and I had a conversation about it and she looked up the medicine in her medical book and there was nothing about skin irritants.  Last Saturday I was trying to feed her and she was MANIC.  She was ripping her hair out and laughing uncontrollably.  She normally gets a little crazy when it's time to eat because she gets so excited, but this was out of control.  And honestly, I was FRUSTRATED.  She was flinging food every where, laughing so hard so she was choking on her food and ripping tons of her hair out.  Part of me felt like she was doing it on purpose, because the more I told her no, the more she kept doing it - and staring me in the eye like she knew it was making me upset.  I was beyond frustrated with her, threw her food in the sink and gave her a tube feeding.  I hate getting frustrated with her because I know she can't help it and it puts me in a bad mood.  On Monday her nurse Tabitha was getting her dressed for the day and called me up to her room.  Turns out Alex had LICE.  How does the child who barely has interactions with other kids get LICE???????  Never in my wildest imagination would I have thought she had lice.  The only places she had been was the pool and therapy so we can only assume she got it at therapy.  So all the time she was pulling at her hair and trying to get my attention, she was trying to TELL me what was wrong.  Heartbreaking.  I felt SO terrible.
Fast forward to this week.  We are on vacation and while she's eating, she hasn't really been eating all that well.  The night before last she got up at 2 AM and was MANIC again.  When she's manic she yells so loud (a happy yell) and keeps laughing and laughing.  She never went back to sleep - just kept on being manic.  Later on in the afternoon Tabitha was putting her in her chair and we saw a bunch of blood.  At first we had no idea where it was coming from - it was on her mouth, her hands, her shirt - then we realized she had a HUGE molar erupting in the back of her mouth.  Again, she was trying to tell us something wasn't right and we missed all the signs.
It's the most helpless feeling not being able to help her or know when she's in pain.  She doesn't act like a typical child when she's in pain - she's almost always happy - so is it a happy happy, or is she being manic because she's trying to alert us to something? 
So next time your 'typical' child is constantly chattering in your ear, or doing the "mom, mom, mom" chant when you're in the middle of something, or on the phone - just be very thankful that they can be articulate, because trust me, the alternative stinks!

Tuesday, August 7, 2012

Seizures and Nutrition

Last week we went to Children's Hospital for Alex's 6 month follow-up nutrition appointment.  We had gone in February and she was 53 pounds - this visit she was 55 1/4 pounds.  Her nutritionist said normally kids average 5 or more grams of weight per day, Alex is gaining less than 3 grams a day.   She's still only in the third percentile for her weight.  She's eating and tolerating her blenderized diet really well - and we boost all of her foods with extra calories so I'm not sure why she's not gaining at the rate she should.  I will say lifting her 55 pounds of basically dead weight, she feels awfully big and heavy to me! And she's still in the 25th percentile for her height - which I was again surprised at - she seems SO tall to me and everyone else who sees her for that matter - she's all arms and legs - but her nutritionist said because she's so skinny and petite, she looks taller than she is.  The plan right now is to boost her 100 more extra calories a day and we'll see where she is in another 6 months.

Last Monday night Alex had a seizure at 9PM and then another one at 5AM - the 5AM one was a lot more intense than most of them - and that was her 16th seizure for the month.  I called her neurologist and like we had discussed at her last appointment, he added a second seizure medicine.  In addition to her Depakote three times a day, he's now added Keppra.  We're starting out at just 1ml three times a day for the first two weeks and then we'll talk about how she's done and up her to 2ml's three times a day.  As far as I can tell, she isn't having any real adverse reactions to the Keppra.  The one thing I think it has done has made her a little dizzy or lightheaded.  A few times she's grabbed her arms to her chest really tight and closed her eyes really tight - open them back up and then shut them really tight again, almost as if the room is spinning.  That's my guess - but of course, I can't say for sure.  Today has been one week she's been on the Keppra and she's had no seizures.

As I'm typing this she's sitting at the kitchen table with me playing on her I-Pad with Tabitha and  just as happy and silly as can be!!

Wednesday, August 1, 2012

Happy Birthday Zach!!

I say it every year, and I'll say it again!  I can't believe another year has flown by and that Zach just turned EIGHT.  Time is just going by way too fast for me.  I'm so proud of the sweet, loving, funny and compasionate kid that he is.  He truly has been a blessing to us from day one. 

We decorated the kitchen and the stairs leading down to the kitchen so that when he woke up everything would be festive.

He was excited when he came downstairs and put on all of his fun birthday stuff while he enjoyed his favorite breakfast - waffles and bacon!

He opened a few of his presents from us after breakfast and then opened his card from Alex (he wanted to save her present for his party). 

I love how he engages her with what he's doing - he really is such a good brother.

The love :)

He wanted to have another pool party this year so that's what we did.  I was praying there wouldn't be any rain like the past two weekends, and thankfully, it was a beautiful day!  He had 17 of his friends from school there and I think everyone had a really good time.

Right now Zach's into anything and everything that his Dad is.  EVERYTHING right now is about hunting and fishing....EVERYTHING!  It was tough when people asked what they could get him because he's not into anything like legos or cars or transformers or anything else that most eight year olds are.

I jokingly referred to this party as his 'redneck' party.  The whole theme was camouflage and deer!

HE was super happy about it and excited so that's all that mattered!

Family Pic!

Me and my big birthday boy

Daddy and Sissy

Me and my sister

Zach's grandma Bev flew in from Niagara Falls for his party and it was nice to have her with us for the week.

Zach and his cousins Emily, Abby and Cameron

Uncle Danny and Aunt Rebecca

Uncle Shane and Aunt Dana

Auntie Dearest

Of course, we couldn't have a post without Alex and her ever loving, adoring stare at her beloved Papa!

Zach and his best bud Micah

Zach with MeMe and Papa

I'd say it was another successful birthday! :)