Thursday, August 11, 2011

Ember visits Philadelphia

This past Monday Ember had her first visit to Shriner's Hospital for Children in Philadelphia. It was a long, informative day. The day began with an introductory visit with the lower extremity specialist Dr. van Bosse. He measured each angle of mobility in her legs and hips. For now it seems we will leave her knees alone. Her right knee has a fair amount of active bend to it but her left has very little. It is very tight. He sent us for x-rays of her hips as well as what exists of her left foot area.
After x-rays we met with an upper extremity specialist. This was disappointing in that first, it was not the Dr. that we were scheduled to see. I had requested another surgeon at the time of scheduling but apparently he was out of town. The second reason is that this Dr. didn't even touch Ember. He asked questions, watched her sit in her stroller, and actually seemed more interested in her missing foot. He said our first focus should be her elbows and trying to gain as much range of motion as possible. He says we should leave her thumbs in her palm so she has a grip and her wrists can be pushed into neutral. The hope is with therapy that her fingers too will loosen and gain some movement. Still, he didn't feel her arms, shoulders, hands, nothing.
After that meeting we met back with Dr. van Bosse who said for now her hips look ok. They may need surgical correction but right now we need to get her on her feet. We talked about what he will do to get her left leg ready for a prosthesis - it will need a little surgery to reshape the bottom. Then, he performed an Achilles tenectomy. With children Ember's age he usually performs this in the operating room but because of Ember's difficulty finding veins he opted for local anesthetic. Basically what this procedure does is to nick the Achilles tendon so he can flex her club foot to make it flat. Then he casts her leg from toe to groin so the foot will hopefully heal flat. She is to go back in 5 weeks for cast removal and if the foot looks ok she will be getting a brace to wear 24 hrs/day.
She has not had the best time adjusting to the cast - and I can't say I blame her. During the day she is now fine and rolls around like before. Night time is no fun. She cries - no screams. Off and on all night. And it is a mad cry. She now sleeps in a pack n play next to my side of the bed. She wakes off and on all night and cries hard. She is getting used to us being at her beck and call! Oh how I miss getting a full, uninterrupted nights sleep. Somehow I think those nights are a thing of the past for a while.
Another thing we did at Shriner's was meet with an OT who fitted Ember with splints to wear on her wrists at night. These splints will push her wrist toward neutral and start working her fingers out of extension. She is to wear them every night and as she grows and hopefully as she gains flexibility the splints will be modified to continue to improve her range of motion.
Of course once I get home I think of a hundred questions I wish I would have asked! We are looking at heading back around Sept. 12. I better start making my list of questions now!


  1. Poor baby! And poor mama! I remember all too well when Joseph had his "big cast"... and his screams. He actually did get use to it and even learned to crawl with it (the bend at the knee helped him learn faster... he was 6 1/2 months old)! Praying you all get some sleep soon.... remember, this too shall pass. Hugs, Grace

  2. Oh Lorene, I'm sorry you're not getting the rest you so deserve! I'll miss you by a week at Shriners :( Madeline and I will be there for a whole week... a long one. Praying for all of you.

  3. Glad to see such great progress and ideas... she is still such a cutie! Go with your gut instincts and get another appt with the other dr for upper stuff! You will be glad you did!
    Wishing all the best for the weeks to fly by with the cast!

  4. I'm sorry she is miserable!! We know. We know. Aaron has surgery this next week and we DREAD IT! We may bump into each other next month....

    Who was the uppers Dr.??

  5. Oh I forgot to ask... is the brace you're talking about an AFO? If so, make sure they drill air holes in it. Joseph had to wear his 24/7 too, and he ended up starting to get "jungle rot". His foot couldn't "breathe" because the material that the lining is made from causes skin to sweat, hence his sock and foot stayed wet. Sounds awful and it was... not trying to scare you.... just passing on info I wish someone would've shared with me. Hugs and prayers, Grace

  6. Hi
    My name is Jenna and I came across your site. Ember is an amazing, courageous, strong and determined fighter. She is a brave warrior, smilen champ and an inspirational hero. I was born with a rare life threatening disease, and I have developmental delays. i love it when people sign my guestbook. Ember is such a precious and special Earthly Angel, and She is lucky to have you as her mommmy.

  7. Ah, I hate that she is so upset but thrilled she is home and able to visit the doctor. She is such a cutie!!

  8. I love it when I get on here and there are Ember updates! I love to see her so happy and fitting into her new family so nicely. Sorry that she is having a hard time at night. Praying that she will adjust to her therapies, surgeries, and everything else that you all will have going on with her.
    Andrea Roseman

  9. Hoping to see another post soon! cant wait to hear how all is going!
    Becky Boland