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.

Monday, December 30, 2013

Merry Christmas!

I cannot believe that Christmas has come and gone already!  It seems like one big blur.  Typically I take tons and tons of pictures and I make a video montage - yeah, that didn't happen this year!
So Christmas Eve we said good-bye to Elfie...(and not a moment too soon in my opinion!)
...and got everything ready for Santa
Zach came into our room a little after 6AM and asked me if he could just go downstairs and peek, he came back upstairs excited and said he would let us sleep until 7:00 if that would be ok....seriously his patience kills me sometimes :)

We got Alex up and situated to start our Christmas morning. Only Alex wanted no part of it - she still is not herself and didn't give a rip it was Christmas :(

In the beginning she wouldn't even look at what we were putting on her lap.  I think she was hoping if she ignored us we would go away!

She seemed content to just play with the wrapping paper so we let her be for a while.

Zach on the other hand was quite happy, excited and ready for a fun Christmas day!


The two main Santa gifts he wanted this year were Guitar Hero for the Wii and a metal detector so he was quite happy that Santa didn't disappoint him.  I do have to say, he took his time opening each present and he thanked us after each one.  Oh if Santa could only give him the moon, he would :)

Back to see if Alex maybe had any interest yet....Nope!

Maybe if Zach helped her....
She couldn't look less thrilled if she tried!

Sigh.  Maybe if Daddy helps....

Progress, at least she is actually looking at the presents with some interest!

Ohhh, some new movies....
and a new book....

...wait for it.......it's a Christmas miracle, she smiled!!!!

Because we weren't sure how Alex was going to be feeling we had decided that Aaron and I would have Christmas day at our house.  So maybe with family coming over Alex will be happier....
 ...maybe not!

We had a wonderful dinner, a huge thank you to my parents for coming early and helping me get everything together!  Mom has a pretty picture of my turkey - too bad I didn't get one :)

I most looked forward to spending the day with my family and despite Alex still not feeling good, I enjoyed my family. 

The cousins had fun playing and being together....

My brother, a.k.a, Mr. Christmas, was a happy, jolly, soul!
We got to spend time with my Uncle who was in from New Jersey
And with Shane's parents Pam and Leslie
There were more presents to be opened and more smiles...

Alex was wondering what in the world Papa thought was so great about her presents :)

but she showed some interest...

...and the one smile from that round was the "Future Mrs. Bieber" pj's from her Aunt Dana!

Although I love Christmas and love the excitement of Christmas morning, I was sad Alex just wasn't up for it. At the end of the day though, she was surrounded by so much love and that's something you can't wrap up in pretty paper and a bow anyway.
Merry Christmas!!

Friday, December 20, 2013

Still Feeling Miserable

Alex has been absolutely miserable the last few days.  Mornings are very hard for her and she wakes up crying and tends to cry all morning.  Right after surgery I noticed that her tongue was white and I just assumed it was from the anesthesia.  By Monday I mentioned it to her nurse Tammy and we've been keeping an eye on it.  It's been painful for Alex to swallow and she doesn't want to eat anything by mouth.  The last few days, despite lots of teeth brushing, her breath can knock you over from across the room - and she still has a white tongue.   I called my friend Christy whose unfortunately an expert at surgeries and anesthesia and asked her about it. I Googled it.  I've assumed it was thrush based on what it looked it but there didn't seem to be a correlation between anesthesia and thrush.    Yesterday I was talking with my neighbor and she said she's seen it happen and then I was having a conversation with someone else at Alex's school who said their son got it really bad after a tonsil and adenoid surgery.  We went to the pediatrician last night and they swabbed her for strep due to her lovely breath, but that was negative and she does have thrush.  Never a dull.  It really seems to be painful for her.  She doesn't really look good either.  She's pale, her eyes are very heavy and she's still really miserable so the doctor said she could also be fighting some kind of virus on top of everything else.  PLUS, despite using foam and gauze pads, the leg braces are rubbing parts of her skin raw - it looks terrible.  So much going on for her and she can't tell me what's hurting the most - that's the worst part of it all.  I just went and bought some mouth swabs and the pediatrician called in a prescription for the thrush so hopefully that will bring her a little bit of comfort.
While we were waiting for a room at the pediatrician's office we saw this tree....Alex LOVES, LOVES anything that has to do with water....this Christmas tree has a tube that runs up the middle and it has water running through it that bubbles - and then it changes colors!  I loved it....Alex loved it.

The doctor that bought these trees for the practice is no longer there so if anyone happens to have seen a tree like this, or knows where to get one, PLEASE send me a message!
In the meantime, prayers that she is feeling better for Christmas are much appreciated.

Tuesday, December 17, 2013

Battle Scars and PT

Needless to say it's been a rough few days but it's getting better and Alex is being SUCH a trooper.  She really is.  We changed her bandages on Sunday and I was prepared for her incisions to look much worse than they did so I was pleasantly surprised.   She's still been moaning and crying a bunch, but who can blame her?  With her having the reaction the pain meds, she's only been taking ibuprofen, and with the immobilizers on her legs she can't position herself so she's literally stuck in the same position until we reposition her.  Today we took her to physical therapy for some stretches and to try and get her to weight bear - Aaron and I couldn't get her to do it at home and Lord knows we weren't going to push her to do it.  She LOVED the fact that she was getting out of the house - we asked her if she was excited to go out in the car and she raised her eyebrows several times in a row (her new way of communicating yes - pretty cool, huh?!?) - we then told her she was going to see Ms. Shannon and she quickly blinked her eyes hard - which means No!  As much as we L-O-V-E Shannon, can't say that I blame her! I questioned myself on taking her to therapy so quickly after surgery, but with Alex's tone and the way her muscles contract, I really felt like getting her out and having Shannon stretch her, and show us how to stretch her, is going to be more beneficial than waiting a few weeks.  Alex probably disagrees.  :) 
So, here's what her knees look like....she has an incision on the left and right sides of both knee caps.

The part that makes my knees hurt when I look at it is the back of her knees where they did the actual hamstring lengthening...

That's such a sensitive spot and I would think that has got to hurt the worst.  The good news is that the incisions look really good with no signs of redness or infection. 
Unfortunately the leg immobilizers are beginning to rub on her skin and she's having a little breakdown.  Shannon put some foam on the inside of the immobilizers so hopefully that will fix that issue.

It was a little painful for us to watch as Shannon ever so gently began to stretch her out - and she was not happy about it.  But for the most part, she did great.  Have I mentioned she's a trooper?

Thank goodness for Daddy. 
And speaking of Daddy, I really, really have to give him a lot of credit - he has been by Alex's side ever since Thursday.  We had a hotel room in Charlottesville for him to sleep at but once she came out of surgery he wouldn't leave and he stayed with us in the room the entire night sleeping for a few minutes here and there in a chair.  Since we've been home he's been completely on top of her medicine, her positioning, her changing, he's the first one to jump out of bed in the middle of the night when she's crying and he couldn't be more attentive.  I don't ever give him the credit that's due and I certainly am so thankful for how involved he is in all of her care, not just with her surgery, but all the time. We're a good team and I couldn't imagine not having all of his help.  I'm not looking forward to him going back to work tomorrow! 

After the stretches and measurements it was time to stand her up and get her to weight bear a little bit - and that's when I kind of freaked out - just a little!  We're guessing maybe her blood pressure was a little bit low, or because she's been laying down so much that when she got in a standing position she got lightheaded because her eyes completely changed, she looked like she was going to throw up and the color drained from her face a little and it was pretty clear to me and Shannon that she looked like she was going to pass out.  Shannon, in true form, was very calm, repositioned Alex back a few times (thank goodness for the bungees and Ms. Kristen!) and slowly shifted her position a few times before she got her back on her feet and got her looking a little bit back to normal!   

Whew.  Glad that was over with!

Shannon asked her to smile for her Daddy and she made a very cute, very brief attempt at a smile.

She stood for just a minute and then we got her back in her chair to head home.  It's definitely going to be a slow road, today took a LOT out of her but we will slowly start getting her stronger and stronger. 
Thank you again for all of the love - Alex appreciates it and so do we!