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, April 25, 2012

Spine Issues

You might have noticed in the Little Feet Meet photos that Alex is wearing a brace. Two weeks ago she came home from physical therapy and she was upset - very grumpy and biting her arm a lot (the way she lets us know she's frustrated or hurting). She had a bath that night, a routine she LOVES, and even that didn't make her happy.  I thought maybe she was just sore from PT, but after a few days she was still really grumpy.  On top of that she would NOT let us put her in a sitting position on the floor.  She was completely fine sitting in her wheel chair or her other supported types of chair, but she absolutely refused to sit independently (Indian style or propped sitting) - and when I mean refused, she would completely hyper extend herself so it was nearly impossible to get her to bend.  Talk about frustrating - for both me and her!  If I did manage to get her in a sitting position she would hold her arms very close to herself with a pained look and then she would bite her arm.  I really thought she had something wrong with her hips so after a week of  her obviously not getting any better I took her to the pediatrician; who, just as I knew he would, referred us to her orthopedist. 

We went to the ortho the next day and spent FIVE and a HALF hours at the appointment.  How fun. 

She was largely entertained in the beginning by the sound of the paper on the exam tables, which is always a favorite for her. 

We had a bunch of hip x-rays done and they were normal.  The doctor came in and rolled her on her side and started pushing on her lower back - WHOA! - she did NOT like that.  Back to x-rays we went and the doctor said she has inflammation in her lower spine.  When she's sitting supported in her chair it puts no pressure on her lower back, but when she has to sit independently and use her hands on the floor to keep herself upright it puts a ton of pressure on her lower back.  So off he sent us to another specialist for a 'corset' type back brace and also sent us home with a prescription for an anti-inflammatory, which we had to stop after 2 days because it was tearing up her stomach. 

Since Alex is on a blenderized diet she eats every 3-4 hours.  We obviously did not think we were going to be gone for over five hours so she was starving half way through the appointment.  Not to mention I had to pick her up from school early for the appointment so she had no nap.  I have to say she she was so well behaved despite being hungry and tired and did much better than I thought she would.  Unfortunately, because I think she was over tired, she had a seizure that night.  Her first one since I took her off the Miralax.  Boo. 

Anyway, here's her new get up for the next three weeks.

I will say she is MUCH happier in the brace.  If we have the brace off and she is lying on the floor she starts complaining but as long as it's on she's happy.

We go back in three weeks to see if she's any better.  If not, we may have to look into seeing if she has a disc problem, which wouldn't show up on an typical x-ray.

Never a dull! :)

Saturday, April 21, 2012

More Excitement From Yesterday!

So after a great Little Feet Meet we all went out for lunch.  We were going to go to a Steak House, but Alex was rather 'vocal' after her exciting day so I thought it would be best if we just opted for the food court at the mall.  As a side note, we found out Alex LOVES oranges.  My mom and I were eating orange slices when she grabbed my mom's hand and pulled the orange toward her mouth - she sunk her teeth into the orange and that was that - I think she had 3 wedges total - loved it :)

When we were done eating we decided to walk around a little bit and I decided I wanted to go to Claires - to get ALEX'S EARS PIERCED!!!!  I've been wanting to do it for years, but Aaron always talked me out of it by saying she has enough poking and prodding, and that's the last thing she needed.  But Aaron wasn't with us at the mall :)  Only my other cohorts who were convincing me to do it!

So we tried on some tiaras.....

And then got the process started!!

You seriously have to fill out more paperwork and sign in more spots than you do when you leave a hospital with a newborn!

We were explaining to Alex what we were doing and that it might hurt a little....she doesn't look too sure, does she??

So we marked her ears where the earrings were going to go...

Double checked to make sure they were even...

And TADA!!!!  They did both of her ears at the same time which I think is great.  She was a little confused as to what was going on, but she didn't even flinch when they did it!

She has really cute crystal daisies....and they sit completely flat on her ear so she can't mess with them or get them caught on anything.

When it was all said and done we all were making a huge deal about it - teasing she was a "tween" since she's now double digits - and she loved every minute of it!!

The whole time we were there everyone was making comments about Aaron and what he was going to do/say.  No one wanted to be in any of the pictures because they didn't want evidence they were there :)  On the way home we decided we wouldn't say a word and just see how long it took him to realize they were pierced.  When we got home he was already home, but he was on the phone, so I figured we were good for a bit - but as soon as I wheeled her in he came over to give her a kiss, looked at her, shook his head with a BIG GRIN and mouthed Oh My God, You Didn't!  I could tell from the big grin on his face he thought it was great - and he did!! 

It isn't that often I get to enjoy a totally typical mother/daughter experience.   Yesterday we did just that, and I loved and savored every minute!!

Friday, April 20, 2012

2012 Little Feet Meet!

Today was an AWESOME day!!  The Special Olympics' "The Little Feet Meet " was this morning and this is the fourth year in a row Alex has participated.  It's SUCH a feel good day and a day that makes me feel so proud.  This morning on the news we saw that there was a bomb threat called into the school where the event was taking place.  I honestly have to ask who would do something like that??  This is such a special day for the special needs community, I just can't believe someone could be so evil to try and ruin that.  They didn't ruin it though, it was the best one yet.  Other than a tennis ball throwing event, this was the first year Alex was out of her chair for the remaining events and one of her ribbon awards.  We helped her do a long jump and she did the 25 meter race again, but this is the first year she WALKED it and didn't have anyone pushing her in her chair!!!!!  There were SO many people cheering her on and clapping and whistling for her - and she KNEW it!  She was smiling the whole time and she was taking amazing steps.  I really can't explain how fantastic it felt helping her across the finish line!  Aaron was there to see her participate in her events and he was also part of the team of officers who helped with the torch.  Zach thought it was so cool that his Dad was part of the events too.  Again, it was just an awesome day all around!

I'm so thankful for my parents, Dana, Tabitha and Travis for sharing the day with us.  I truly love this event every year and how it makes me feel as Alex's mom - and this year was no exception!

Wednesday, April 18, 2012

Spring Break

I know a lot of my friends were very happy that Spring Break was over this week and the kids were back at school ~ I was not one of those people!  Maybe it's because I work and school mornings are CRAZY trying to get the kids out the door so I can get ready and leave for work.  On holidays and breaks, it's SO much easier for me!  Plus, we had a really fun week.  We went out to dinner, for ice cream, Zach had two sleep overs, we went to the movies, we went ROLLER SKATING - something I haven't done in over 20 years!  That was a LOT of fun :)  Friday we spent the entire day at Busch Gardens - I have a pedometer on my phone and according to that we walked over 11 miles at the park.  We really had a fun week.

The kids both had dentist appointments last week as well.  Zach has his first cavity.  Bummer.  Not only does he need a filling, but he needs a crown as well.  It seems kind of crazy to me to crown a baby tooth, but according to the dentist it's not a tooth he will loose until he's around 10 and he needs that tooth to stay in so his teeth continue to grow and space the way they should.  Zach was SO upset when she said the word cavity. 

Alex is going to have to be sedated to have some work done.  Anytime she needs anesthesia it's worrisome because of her neurological state.  Unfortunately she can't have her teeth cleaned like you and I can because she's an aspiration risk, so they typically do the best they can and that's that.  But, because Alex doesn't chew her food, and she drools a lot, the plaque and tartar build up on her teeth, especially her front bottom teeth, is getting pretty bad.  She also has three teeth that need to be pulled, and they've never been able to get x-rays on her.  Overall the dentist said she should be under a little over an hour, IF the anesthesiologist feels it's safe for her to have it done out patient at Children's Hospital.  We took her yesterday to the pediatrician to have him give her a pre-op clearance but the anesthesiologist will still talk to her neurologist for the final OK.  If he feels like she's too much of a risk, she'll have to go inpatient at MCV. 

Today we're off to the orthopedic doctor, never a dull!  I'll post more about that later.

Wednesday, April 11, 2012

Easter 2012

I hope everyone had a wonderful Easter!  We enjoyed a great day with the family. 

The night before we colored our Easter eggs...an activity Alex LOVED last year.  This year she enjoyed it for a few minutes...


...but then she was over it and wanted no part of sitting at the table with us while we finished.  Aaron had to work so Zach and I finished the eggs and had fun decorating our little monsters :)

I'm still debating if I should put in black and white a conversation Zach and I had that night - let's just say I will NOT be winning any mother of the year awards any time soon.  I'll just leave it at that!

He was super excited about his basket though...

Allie Bean's basket....

We did our Easter egg hunt around the house and then got ready to head out to church.

I LOVE this picture :) 

After church we headed back to MeMe and Papa's house.  And of course, we took a bunch of pictures ;)

Me and Mom
My two boys...

Is he handsome or what?!? 

My Love <3

For the first time in 30+ years my dad shaved off his mustache.  Alex DID NOT recognize him.  It took her quite a long time to figure out it was really him.  When she first saw him and he talked to her she kept looking away from him like "who the heck are you?!?"... But after an hour so it was back to staring at him the same way she always does - mustache or no mustache.

After that we headed to my sister's house for dinner. 

Zach and my niece Emily

My nieces Cameron, MaryGrace and Abby

Kari and Steven

Pam and Leslie

Mom and Dad

Me, my brother Danny and my sister Dana

Aaron, Me, Dad, Mom, Dana and Shane

A great day with family.

Wednesday, April 4, 2012

Checking In

Sorry for he long delay between posts. We are all doing well. Aaron and I spent an amazing, RELAXING week in Punta Cana in the Dominican Republic. (Pics to follow soon).  There was NO Internet connection so there were no work emails to check, no distractions, just rest and relaxation. The resort we stayed at was phenomenal, there was nothing we could have asked for that they didn't have. There were chocolates, fruits and wines left in our room at night, fresh flowers in our room every day, delicious meals - even a massage on the beach...but most importantly it was time for us to reconnect and enjoy each others company.  It's so easy to take each other for granted when your lives are so hectic and you seem to be always running in the opposite direction.  I appreciated this trip more than any other trip we've taken together in the past. 

The kids had a good week with MeMe and Papa.  In true MeMe and Papa fashion, we came home to a clean house, meals in the fridge, flowers planted in the front, mailbox post painted - AND, if you remember my post about the snow flakes my dad hung above Alex's bed - they were changed out for really awesome butterflies!  I've said it before and I'll say it again, we are so, so grateful to have the family that we do.  We appreciate them more than we can express.

Needless to say I'm feeling really relaxed and blessed this week!