So we have had a great week! We had our appointment in Philadelphia on Monday at Shriners Hospital. We met with Dr. Scott Kozin, and Dr. Phillip Alberger- who are hand and foot specialists that are quite familiar with Hope's condition (Amniotic Band Syndrome). They were awesome- they had come very highly recommended and we can see why!
First we saw Dr. Kozin- he and his collegues were amazed by Hope. I totally feel like I am bragging (and I am!) and you might not believe me when I say all this- but those who have met Hope know I am telling the truth. This kid is amazing- and charmed the pants off of these Doctors!! They could not believe that she had grown up in an orphanage- as usually the adopted children he sees are way behind in every area- he kept commenting on how AHEAD she was! The one Dr. said at one point said "look at her- she OWNS the room. She will have no problems in life- nothing will stand in her way!" He said that her hands did not NEED anything done- as she functions with them incredibly well- but that he could approve their appearance by fixing a little of the webbing between two fingers on the right hand (which could also improve function) and to release the "band" that is on her ring finger. The ring finger basically looks like she has had a rubber band wrapped around it for a long time- it is also her longest finger.
SOOO it is totally up to us- so what do we do??? We are still deciding- but we are leaning towards doing the surgery- b/c as the Dr. pointed out- she one day will care what her hands look like and will want them to look as best as possible. I personally think that her hands look just fine the way they are- but I guess I have to look through her eyes as she gets older. I wish it was not left up to us- it always easier when they tell you what to do!!
Now- onto her feet. She had X-rays done- and to our surprise- she has ten seperate toes underneath all that webbing! Perfect little footsies! The Dr. had her lay on her stomach- and within minutes told us that her left foot was a club foot- which apparently can occur in 40& of kids w/ amniotic band syndrome. This is a GOOD thing- because it means that all he has to do is lengthen the tendons that are causing her to walk on her tip toes- not interfere with any bones. I thought for sure that she would have to have bones broken, etc. He said that it is a mild case- and that after surgey she will wear a brace on that leg for about three months- and then after that only at night fpr awhile- then she will walk as straight as anyone!! Hooray!
This is all that we could have hoped for- he also said he will not touch her toes- I thought that he would want to seperate them. Her right foot has all of the toes connected. He said that could only do more harm than good and that she walks so well on that foot- that it could throw off her balance and make her have problems. He said that the toes never have to be seperated bc/ they do not need to grab things like the hand- and are always better left alone.So none of her toes will be touched- which means less recovery time! Yay- again! If she would liek to revisit this when she gets older- it will be her decision.
SO great news for us- and we are going to have the surgery done in September- so she can have a fun summer without a cast!
And on a side note- we have discovered that Hope is quite the dancer- when we had a ballet video on the other day- Hope did an entire ballet dance routine- (I really am telling the truth!) and I put the song on again and she did the exact same routine again. Crazy- this kid, is unbelievable!
Also- when I put her breakfast in front of her this morning she said "thank you Mama- I love you!" Oh- I love this child- she is a joy!
Ok- I will stop gushing now--I am sure that you have all heard enough- but I had to share!!
Love to all--and more updates soon!