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, June 20, 2012

Awards and Last Day of School

Friday was the last day of school - hard to believe a whole year has gone by, it definitely went fast.  The kids are just growing up way too fast for me. 

Last week both of the kids had awards ceremonies.  Alex has been working hard this year on her VAPS - the Virginia Alternate Assessment Portfolio.  Since she can't test like her peers, this is an assessment tool used to show what Alex has learned during the year.  Considering she has missed more time this year than any other year, I'm proud of her for working so hard!

A little blurry, but this was her getting called up to receive her award...the third grade teacher that is her 'inclusion' teacher gave her the award and was very kind.  When they called her up the teacher said "We've certainly enjoyed having Alex as part of our class this year boys and girls, haven't we?"  And the kids in the class clapped.  Heart happy moment.

Checking our her award!

Obviously, very pleased with herself! :)

Alex and Ms. Susan - one of her teachers.  Ms. Susan is so sweet and kind - we're lucky to have her in Alex's class every year!

Zachary's award ceremony was the next day - he received two awards - one for the Diversity project he did on Alex and the Arts in Education Award.  He missed the attendance award by one tardy - unfortunately he had all of his asthma lung function tests this year and was late so they counted as tardy's...bummer!

This was his last day of school picture....

And his first day of school picture - he's changed so much!!!

Unfortunately I don't have a last day of school picture of Alex because she spent the day in bed.  She'd been running crazy fevers that last week of school again and that morning she was over 100 so she had to stay home :(  I think she's missed the last day for the last three years now.  That night she had a seizure at 4AM and another at 5:15AM.  That's the first time she's had them back to back like that.  And the 5:15AM one was VERY intense.  I was a second away from getting her emergency meds - definitely scary.  Poor girl.

So, come September I will have a third and forth grader!!!

Saturday, June 16, 2012

Spine MRI and Dental Surgery

Last Thursday Alex had her spinal MRI and her dental surgery. 

It kills me that I can't explain to her what's going on and know if/what she understands.  She really didn't mind any of the pre-op stuff - the only thing she doesn't like is the blood pressure cuff.  I think it reminds her of the tourniquets they use when she goes for her blood draws - and that's never a good time.

I was really glad they were able to finally coordinate the two procedures so both could be done and we didn't have to put one of them off for a later date because of the anesthesia.  Although, there was a little bit of a scheduling snafu so we got started almost two and half hours after we were supposed to.  And she had to be NPO after midnight, so her last tube feeding was at 10PM the night before.  I know she was getting really hungry, but she was SO good waiting patiently.  She was all about hugs and kisses for me and Aaron.

Finally it was time to leave her.  They let us go back with her while they put her under and I don't know if that was a good or bad thing.  Of course I wanted to be with her, but watching her go under was not easy.  One minute she's all smiles and the next she's a limp noodle. 

Both procedures took about 3 hours.  The hospital has a color coded numbering system on a big TV screen that let's you know where the patient is in the process...pre-op, in surgery, in post-op, so that was kind of comforting.  The staff was really good about calling us too and letting us know when she came out of the MRI and when she went into the OR.  When we finally were able to go back to recovery we could hear Alex crying from the hallway.  And that was tough.  Alex is NOT a crier.  They only let me go back with her and she was so upset.  Her bed looked like a crime scene too - there was a A LOT of blood.  Alex hasn't had any type of surgery since she was a baby so it was so hard to see her like that.  I know it was only dental surgery but she was in a lot of pain and no matter the cause, it's hard to see your children hurting.   She had 4 teeth pulled, and a very deep scaling and cleaning of her teeth so her gums were really swollen.  She had a LOT of plaque and tartar build up from not being able to chew food and the constant drool in her mouth.  She's also never been able to have x-rays done and when those were done she had two fillings that needed to be filled.  The nurse thought Alex was upset because she was in the hospital, but I knew it was because she was in pain.  She's allergic to coedine and morphine so they gave her Fentanyl - which is a stronger than morphine through her IV and tylenol through her g-tube.  She was also gagging because she was swallowing so much blood so she had Zofran to combat the nausea.  Twenty minutes after that she started smiling again, and that was good to see!

The orthopedic office called this week and said that her MRI was within normal limits.  Which is pretty much what I thought they were going to say.  ALL of her tests come back normal.  She's the most not normal, 'normal' kid I know!

Tuesday, June 12, 2012

Piano Recital

Lots to catch up on but I'll start with last Sunday.  Zach's been taking piano lessons since September and he really enjoys it.  Last Sunday he had his very first recital.

I had a BAD night with Alex the night before and I was already feeling kind of deflated.  I had a 'chat' with her and told her that this was a big day for Zach, how he's always going to all of her events and supporting her, not to mention being dragged to all of her doctor/therapy appointments.  So I told her that she had to be a good girl, no yelling or screaming, just be the big girl that she is......

Yeah, right.

As SOON, and I mean as soon as the recital started she started her happy screaming.  And she is LOUD.  We were one of the first people to arrive but we opted to sit in the last row, just in case...  And the way the room was set up as soon as the doors opened you were staring at the audience with the pianos and harps to the right.  So of course I had to take her out the second the recital started.  And I was NOT happy with her! - and I told her so too!!!  I knew Zach was 12th in the program so I was listening outside the doors for when he would be next.  I took Alex out of her wheel chair and went back in, yes, with everyone looking at us as we came back in!  Sat back down and as soon as I did she looked right dead in my eyes and started laughing and then screamed again....UGH, that girl!!!  I held my hand over her mouth while Zach was playing and as soon as he was done Aaron had to take her right back out again - YES, back in front of the whole audience, AGAIN.  Ahh, sometimes my life is so grand. 

The WORST part was that about 15 seconds into Zach's performance our video camera DIED.  I tried uploading one of his practice videos here but that didn't work so I'll have to figure that out!  I could not wait to just have that part of the day over and head home.  And of course, that made me feel bad that I was rushing away a memory that was important to Zach - and to me - he's worked REALLY hard on learning his pieces.  And the Director of the academy made some comment like, now everyone go and celebrate by getting ice cream or doing something fun like that - and that just made me feel terrible because of course, we weren't heading out to do anything fun like that to celebrate his first recital. 

I told Zach how incredibly proud of him we were and that I was sorry about Alex yelling....to which he responded...."Mom, it's okay, Sissy's special and that's just what she does."  I wish I could just bottle up all the feelings I have when he says stuff like to me.  It's very humbling to take life lessons from your 7 year old.  Guess maybe I'm doing something right with him after all, lol! :)

Saturday, June 2, 2012

Still Here!

Wow, June!  I don't know where the days have gone!

Quick updates.  Alex had been running a fever for 10 days - back and forth to the doctor, and in true Alex fashion, no explanation as to why.  She has missed so much school this year - more than ever. She's also missed more therapy days than she's ever had.  Between no physical therapy because of her spine issues and being sick it's been a challenge getting her where she needs to be.
Zach had his first true dental experience.  He had a small cavity, but it also turned out that he needed a crown.  He was so nervous not knowing what to expect. 

But he got his "elephant nose" to help relax him and he did GREAT - he was very brave.  He had a bit of discomfort the rest of the day, but that was to be expected.  A little Motrin and he was good to go.

We saw the neurologist last week and since Alex was still having seizure activity at night, we've upped her meds again.  She's been on the upped dose over a week, but unfortunately she had another seizure two nights ago.  The next step is going to be adding another seizure medicine to what she already gets to see if that will help any.  Her pattern changed a little bit the week before we saw the neurologist.  Normally her seizures occur in the early hours of the morning, between 2AM and 4AM, but that week she was having them a lot earlier, 9PM and 10PM.   

This Thursday she's going in the hospital to have the MRI of her spine done, and luckily, we were able to coordinate with the MRI department and the operating room so that while she's under the anesthesia for the MRI, they will transport her to the OR so she can have her dental work done too.

Short post, but all I have time for right now!