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.

Saturday, October 29, 2011

What A Week

On Monday Alex had another seizure when she was at school.  She was sound asleep for about 25 minutes when it happened.  It's driving me crazy that she is only having her seizures when she is either sleeping or laying down.  I took her to the ENT to see if there's a possibility that she has a form of sleep apnea.  The doctor said her tonsils looked fine, but it wouldn't be the first time that anatomically someone looked ok but had sleep apnea.  He said Alex could possibly have 'central apnea' vs. obstructive apnea - meaning it's not her tonsils, but her brain.  He scheduled her for a sleep study, but when she had the seizure on Monday I called her neurologist and we decided to get the ball rolling to have her admitted into the EMU (Epilepsy Monitoring Unit) at MCV hospital so we are putting the sleep study on hold.

Zachary went back to the Asthma Specialist and his lung function barely improved - he went from 50% lung capacity to only 57% even though he's been on a special steroid for a month.  The doctor put him on a new inhaler twice a day for the next month and we will go for yet another lung function test in a month.  If he hasn't improved then, he may look at repeating the allergy testing he had three years ago to see if his allergens have gotten worse, and if that's case, perhaps looking at putting him on allergy shots.

Somehow, I managed to pull my hip flexor muscle which wound up working its way to my back and I've been laid up for the last three days.  The pain has been pretty intense and I'm NOT used to being 'down'.  I'm not a person who typically takes anything for even a headache.  The doctor prescribed vicoden - which did absolutely nothing.  I called back two days later and the doctor called in a muscle relaxer.  Aaron picked up my prescription at 3:30 ~ I took it at 4:00 ~ by 4:30 I was out like a light and didn't wake up until 7:15 the next morning!  I'm finally starting to get back to normal.  Once again I have to say how wonderful our family and Tabitha is.  I could barely walk on Friday and Tabitha wouldn't leave my side.  She worked 3 and a half hours overtime, took Zach to play with her son to get him out of the house and delayed the plans she had.  Aaron was awesome taking care of the kids and doing everything that needed to be done.  My parents came over today to take care of the kids and brought homemade chili, stew and my dad's infamous meat sauce (oh, and rolls and brownie bites!)  They're awesome and we're so lucky to have them here for us. 

Here's hoping for a better week!

Thursday, October 20, 2011

Diversity Means...

Every year Zach's school participates in the Reflections Program, which is a voluntary project based on a different theme every year. The children create a personal interpretation of the theme using a variety of choices (art, music, dance, poems, etc.).  This year's theme was Diversity Means...and Zach wanted to participate.  I asked him what Diversity meant, and he said "different" - so I asked him what he wanted his project to be and he said he wanted to take pictures to show "how different Sissy is".  I'm so proud of him.  He followed Alex around for weeks with a camera (he was so funny, he'd tell her - "work it girl")...in the end, he created this:

Along with the pictures he had to include an "artistic statement" and he wrote:

"Diversity means different".  My sister can't walk or talk, she has a special tube in her belly to help her eat.  My sister is very special.  She is diverse.  I love her a lot."

The concept and delivery was all his and I know I already said it, but I'm so proud of him and how he looks at his sister.

Wednesday, October 12, 2011

A WICKED October!

I have a white board in our kitchen that I keep track of the kids appointments on.  I took a picture to post, but it had way to much identifying information that I figured it was best not to post it! But...out of the whole month of October, a whole THIRTY ONE days, there are TWO days on the calendar that we don't have something scheduled (and one of those days has already passed!).  To say it's a busy month would be a complete understatement!!

Probably the best part of the month  so far was the Wicked Performance Zach and I went to see last night.  It was HANDS DOWN THE BEST musical I have ever seen....BY FAR!!!   It was such a special time for me and Zach to share, alone.  I took this picture outside of the theatre, but he was SO not happy with me because there were so many people around...apparently he's at the age where his mother can actually embarrass him...SIGH!

 Notice the less than thrilled, forced smile :)

I paid WAY more for the tickets than I would have liked, but when the ushers got us to our seats, it was worth every penny....we had SECOND row seats, on the AISLE....Zach had a completely unobstructed view of the whole performance.

View of the stage from our seats....plus a complete view of the orchestra, which Zach was completely impressed by!

Some parts of the play were completely over his head but he absolutely loved it.  When the final scene before intermission ended, he looked at me and said "please don't tell me it's over!"  I love that he enjoyed it as much as I did.  I was worried that it was going to be way too late of an evening for him considering he had school in the morning and the show wasn't over until close to 11PM, but he talked and talked about the show the entire way home.

Today Alex had her appointment at the orthopedist for her feet, x-rays of her hips and spine (on the plus side, her scoliosis is only showing a 10 degree curve - which is a 5% improvement since she's been wearing her DMO...which is another appointment that needs to be scheduled because she's grown so much over the summer the DMO doesn't fit properly anymore).  I tried to get a good picture of the bones in her feet while we were waiting, but I didn't quite capture it as pronounced as it is on both of her feet:

(Hopefully you notice the fancy purple nail polish on her toes and not the big red bone sticking out on the side or how misaligned all of her toes are!)

Basically Alex has VERY bony feet, and unfortunately because of her low muscle tone, she already has bunions on the side of her big toes.  She is scheduled to start intensive physical therapy in November, which means she will go for INTENSIVE physical therapy five days a week, three hours a day for two weeks.  Because that is already scheduled, we are going to try and blow out her braces so that the bones in her feet are not as irritated as they are now, but we will be scheduling a surgery on her feet sometime in the near future.  Not only does she have the bone issues, but she is SEVERELY flat footed, has a ZERO arch in her foot, and she also rolls her feet to the inside if she's not braced.  (I'll have to try and get a picture of what her feet look like if she's not in her supported AFO braces to show you how bad her feet look standing 'normally'.)  I asked the Dr. what that would mean for her and he said that both of her feet would be casted after the surgery for six weeks.  Alex is super hypersensitive to anyone or anything touching her feet so I can't imagine right now how that will play out.

On the plus side, for her....she LOVES the sound of paper crinkling or plastic bags rustling.  So while we were waiting for the Dr. she was getting a little annoyed and antsy - I figured most people sit on the waiting table and the paper has to be removed and thrown away anyway (and that you're probably getting BILLED for that paper too!) - so I took the paper from the table and wound it up like a piece of cotton candy.  Viola...instant entertainment!  She was laughing and smiling so much when the Dr. came in that he commented it was the most innovative way he has seen the waiting table paper used!  Ahh, what is it they say about necessity being the mother of all inventions?!?

 "What, this is NOT cotton candy?!?"

 "Oh well, it will do I suppose!"

I was very proud of Alex today.  Our appointment was at 2:00 ~ we got there at 1:45 and weren't called back to see the doctor until 3:20...she handled it much better than I did!!!  As soon as her appointment was done I had to race home, drop her off and load Zach in the car within 5 minutes to get him to his piano lessons on time.  By the time we left there, stopped to get dinner and work on his homework we got home just in time for him to get ready for bed.  I finally sat down after leaving the house at 7:45 this morning at 8:30PM.  What a LONG day!!  

We have quite a few more appointments scheduled this month...stay tuned!

Monday, October 10, 2011

Catch-Up and Camping

The dentist appointment, while we were there, was somewhat uneventful.  Alex had a really hard time with her cleaning because she's an aspiration risk so they literally just use the pick to scrape her teeth.  She cried - which is not something she usually does, so she wasn't a happy camper.  Zach had to go back this past Monday and have sealants put on his back teeth, but other than that he was good.

When we left the dentist appointment we stopped at the train station to meet up with my parents who were waiting for my Uncle who was coming in for a visit. Warning - this is where it becomes a total vent!  Since we have the wheel chair van now I have to park the car with the ramp side facing the double white lines next to handicap spot.  The white lines indicate more room is needed for that spot.  My car also has not one, but two stickers on the ramp side window that says it's a lift van and additional room is needed.  You probably see where I'm going with this, but as we walk back to the car I see a woman PARKED in the white lines...IT'S NOT EVEN A PARKING SPOT!  Or the size of a parking spot for heaven's sake!  As we're walking and I see her in the spot my cell phone rings.  It's the dentist office.  Apparently when we left someone was cleaning up the room Zach was in, wasn't wearing gloves, and stuck herself with the pick that they used to clean his teeth....and now this is considered an "exposure" and could I please bring Zach in for them to DRAW BLOOD because of someone else's irresponsibility.  Oh man I was HOT.  I typically do not loose my cool very often but after the week we had I was already feeling close to the edge and both of those instances at the same time made me just loose it!!!  I yelled at the woman parked ILLEGALLY and I was NOT nice to the person from the dentist office!  The woman in the parking lot seemed like she could care less - and the longer I had to wait for her to finish whatever she was doing and WAIT to load Alex into the car the madder I got at both circumstances.  You may recall one of my biggest pet peeves is people leaving shopping carts in the handicap spots so imagine how I felt about this!!  Ok, done ranting.

Sunday was mine and Aaron's 12 year wedding anniversary so we were heading out of town that night - and it couldn't have been a better time to get away and decompress!  12 years....wow, time does fly.

Monday I had to take him back to the dentist to have his sealants put on and so they arranged for his blood work to be done at the same time.  I was still quite annoyed, but I have to say they couldn't have been any nicer and were so apologetic.  They even had a present for him when he got there. 

Alex came home from school early on Wednesday running a low grade fever.  She was really congested and I kept her home Thursday and Friday.  Thursday morning at about 3:28AM Aaron and I both woke up from the banging coming from her room from what we're guessing was probably the tale end of a seizure.  She still wasn't better by Friday so I brought her in to the doctor so that I could have her looked at before the weekend.  She has another really bad sinus infection and is on an anti-biotic twice a day for TWO WEEKS.  The doctor and I were also discussing her sleeping issues and the fact that all of her seizures happen when she is laying down and talking through some other issues.  She brought up maybe Alex needed to have her adenoids looked at and it sounded like Alex could very well have sleep apnea.  When she was in the hospital a few months back for the seizures, the Dr. did say her EEG's showed that there was a possibility that she stopped breathing while she was asleep so now we have an appointment with an ENT specialist a week from Wednesday. 

We were supposed to take the kids camping this weekend, but because Alex still wasn't feeling well, Aaron and I just took Zach and Alex stayed home with Tabitha.  I'm thinking she had a much better time with her than she would have with us :)  They went to the park for hours - she loved the ducks and enjoyed the beautiful weather we had this weekend.  Tabitha's amazing.

We had a really good time too.  I grew up camping pretty much every weekend and I LOVE it.  We only went about 25 minutes away.  Aaron is an avid hunter and belongs to a hunt club where he keeps a trailer.  The property up there is amazing.    Zach definitely takes after Aaron and loves anything that has to do with the outdoors and he wants to do everything "just like Daddy does".

 Wearing Daddy's sunglasses

 Hanging in a tree stand!

Little too high for me, come here Dad!

 Father-son bonding

 Not sure what the deal is with the red glove :) 

 Zach is a marshmellow junkie

 Silly little man!