Wednesday, February 13, 2008

Changing form

I'm giving this post the name 'changing form' because the word Metatropic comes from the greek word, “Metatropos," which means changing form. Today was Kaela's appointment with the Orthopedic surgeon. She also had cervical and spine xrays. We all went up to the hosptial this morning, so it was a busy morning. I took Kaela up for her xrays after checking in downstairs in Ortho and Matt took Will to get a bagel. The xrays were actually a little more traumatizing then I had imagined them to be. I walk into the big room with those big xray machines that hang from the ceiling and a big bed. I figure that's where she's going, but then the lady says, "we need to set her up here." It looks like a little torture chamber. There's this little 'seat' that sticks out (kind of like a bike seat, but much smaller) where her legs hang over the sides and then they put velcro straps all around her body, check, holding her little arms down and then this plasictic 'thingy' that goes from above the side of her head over her face, under her chin and back up. The poor little girl is sitting there looking like some crazy person having to be strapped down (only sitting up). She was still smiling though...until I had to leave her sight, then her little head turned as much as she could get it to turn being strapped down and couldn't see mama anymore! My eyes filled with tears and I wanted to run out there and hold her! After the first picture they let me put a vest on and go stand with her, which made her happy. She did her little 'ba ba's' after that :) Anyway- I'm dragging this out much more then it needs to be. We then go back downstairs to see the doctor, who I really like! It's just too bad he won't be around much longer, but at least he has the chance to train a group of people and educate them! SO, he brings in the xray pics and shows us the curve. We knew before going that her back was starting to curve because you can see it and feel it, but you don't really realize how much until you see the xrays. I just loaded a picture of her xrays so you can get an idea of what her spine looks like.

In 6 months she went from nothing to a 37 degree curve :( Now, we knew this from the beginning, but knowing this doesn't really make it any easier to 'deal' with. She is our baby and while you know it's going to happen and you know it's happening, you hope it won't. Sounds silly, right? But I can hope....I will continue to 'hope' and pray that it doesn't curve 'too' much. Well he seemed to be a bit worried about it, so he said he thinks we should start bracing her now. Again, I knew this was coming, and I actually even said before going that I had hoped he would brace her since I knew it was starting to curve and I want to do whatever we can to help minimize the curve. We went straight to orthodics to have her fitted for the brace. She will have to wear this at ALL times. Poor girl. It will help both the kyphosis and the scoliosis. You can see the kyphosis in the last picture. It's not too bad, but again, is supposed to get worse over time, so we are bracing for all purposes. She was a little angel getting fitted for the brace (of course). We go back in 3 weeks to get the actual brace, then back to orthopedics 3 weeks from that or 6 weeks from today to have xrays done with Kaela in the brace and out of the brace to see how it fits while it's on and to see if it's helped since wearing it.
As for the other parts- her legs are very bowed, which he said look as though they may have gotten worse. One of the bones can grow faster then the other, causing the bowing to worsen and cause the foot to turn inwards. This is happening. He said they try to let it correct itself usually until 12-18 months, then try bracing, and then do surgery. It is thought she will need surgery, but again, we hope that will not be the case! It may be something we look at sooner then 12-18 months if those bones grow faster and cause more curving.
The GOOD news...well, her neck is still stable. Something he wants to continue to watch every 6 months for now, and then possibly change to once a year, but knowing that is stable right now is huge! As those of us with dwarf children know. Also- one other thing he confirmed, which I knew, and have stressed to the PT, is that she should NOT be putting pressure on her feet, knees and NO trying to get her to sit. The PT's have been GREAT in helping her flexability and range of motion, rolling, etc...but sometimes it's hard to convince them I am correct about the sitting, knees and weight on the I'm glad to get it first hand from him. Kaela's trunk is really long, so he said that can cause even more problems then maybe Achon babies who have a shorter trunk, because she has more weight on top that she has to learn to control (although that is true for dwarf babies in general with head and trunk) but her trunk is extra long...even longer then the average kid! So falling forward can mess with her spine even more...something we don't need. It does enough of that on it's own!
There's an update on our appointment today. We pretty much left with that sad feeling of thinking, "poor Kaela," but also knowing we are doing everything we can for her and will continue to. Kaela has so many people that love and adore her! She has GREAT grandparents, aunts, uncles, cousins, friends, and family! So while I'm on that topic, I want to say a BIG thank you mostly to grandma and grandpa on both sides! You have been extremley supportive, loving, caring from the day we had that ultra sound that told us there may be something wrong. You all have been so great to us, being sure we are okay, and the kids are okay and just supporting our decisions and supporting and loving Kaela and William. So we love you guys and are so lucky we have you, and the kids are even luckier! I know that both William and Kaela will grow up feeling loved and cared for by all of us (friends and family included).
I also have some GREAT friends that I work with that have all been extremly supportive on a work level (time off for all these crazy appointments) and on a friend level (asking questions, making us meals, getting us groceries, even if it was awhile ago, it has not been forgotten) we love you guys and are so thankful!
Rachel-We love you and miss you! We know you are far away, but know how much you love all of us and worry! And don't worry, Kaela knows YOU are her aunt :) Will too! They love you and miss you tons! Come home soon.
All of you- we are lucky to have you and appreciate you all!


The Johnson Family 5 said...

Kaela is so lucky to have such wonderful parents that care about her well being! I think that is why we were given such special children because we would take such great care of them! At least the doctors are helping her now which should help in the future!!

Jennifer said...

Sarah and Matt, I am thinking about you guys and praying for your darling baby girl. She is such a sweet and good natured baby (as evidenced by letting Owen crawl all over her!!).

Anonymous said...

SARAH!! I didnt realize the severity of her condition. WOW! I teared up as I read what you are going through. But it sounds like this new group you have joined will be a GREAT support group for you guys. I love you all and you know if you need anything I will be there in a heartbeat!