Surgical Follow-Up

Today we went to Charlottesville for our follow-up appointment with the surgeon.  I will say that Alex is pretty good about recognizing landmarks while driving - it's what makes long road trips especially challenging because even if it's a 13 hour trip she wont sleep because she's constantly looking out the window to see if she recognizes any thing.  Anyway, on the way up to she got very serious quite a few times and I totally think she thought we were going back to the hospital and was a little nervous.  She was less than impressed when we got there too!

As soon as we checked in they sent us to x-ray to take films of her legs to make sure everything was looking the way that it should.

Here's a picture of her knees and you can see the titanium screws that are on either side of the growth plates in her knees.

Overall, Dr. Romness is pleased with how everything looks. She has six incision sights and with the exception of  one they look great and the x-rays show that everything is exactly where it should be.  I will say, we have been pretty nervous in how we maneuver and handle Alex since the surgery and he definitely was not as delicate with her as we have been - stunk for her because it made her cry really loud - good for me to realize I wasn't going to cause her any irreversible damage if I moved her leg the wrong way!  He said he's not sure really why Alex is still crying a lot as if in pain (and she definitely put on a good show for him) - he thinks that maybe getting her up, moving, and back into her old routines will help a bit. So speaking of routine, Alex has not been on the bus or to school in almost a month - so all day today we kept telling her she was going back to school tomorrow and the bus was coming for her in the morning - whoo hoooo!  Only now due to the temperatures and them not being this low in the last seventeen years there is a two hour delay tomorrow - and honestly, I'm not going to be surprised if it's cancelled all together.  Poor Alex, just can't catch a break!  The GREAT news is that we no longer need to wear her braces during the day!  She has to wear a special set of braces of night while she sleeps (and I'm too lazy to go take a picture of them right now) and she can go back to her regular wheel chair!  The only major  concern everyone has is her weight loss.  She's lost 7.5 pounds and it's really showing.  Yesterday I went to change her pants and when I went to pull her pants off her diaper came right off with them - she has no muscle left.  Her hips are bony, her butt is bony, her legs are bony....if you go about 3 inches up from her ankle to her calf area you can put your middle finger and thumb together completely around her leg and still have a little room left.  She still isn't eating more than 4 or 5 bites of blenderized food by mouth so I've increased her tube feedings to a can and a half.  It's definitely time for a nutrition appointment to see what we can do to get her to gain weight again.  Physical therapy is up to two times a week so that should help rebuild her muscle and in February we will start another round of intensive therapy (physical therapy 5 days a week, 3 hours a day for 3 weeks).  I suspect by the Spring we should be in a really good place. 

We are quite a site where ever we go - I usually refer to us as a train wreck...well, sometimes I use a different phrase but I'll refrain - let's just say today it was no different.  In the tiny exam room it was me, Alex, my mom and her nurse Tammy - and in the room with all of us is all of our stuff - coats, purses, wheel chair, feeding pump, back pack, two sets of braces, paperwork for the nursing company, etc. - it looked like we completely took over the room....and just as Dr. Romness' nurse was leaving the room she looked back at us and said "It takes a village, doesn't it?"  Amen sister - that is exactly how we roll :)

So the great news is she's getting there!  It can take a whole year for the plates in her leg to help get her legs completely straight, but unless she still seems to be in pain next week, we don't go back for another three months for another set of x-rays.  Here she is with her fine surgeon- who for the record was trying to push her legs together so they looked straight for the picture.  We absolutely love him! :)