Thursday, May 24, 2012

Worth it?

I am supposed to put a progressive splint on Ember's elbow for several hours each day. It isn't going very well.
She does NOT appreciate it in the least. Even with no tension on the splint she cries. No, she screams. Until I take it off she either cries or repetitively begs "off? off?" or "all done!" She just can't understand yet that this is meant to help her. All she feels right now is discomfort. Sometimes I wonder if the splint is worth it. Will it even matter? Will it work? Can I (and Ember) endure this for the next few months? Surgery is our other option. Would that be easier? Will we end up there anyway? I need a crystal ball.
I hate doing this to her.

Tuesday, May 15, 2012

Amazing

Look at this picture!!
I can not begin to tell you what a big deal this is and how hard this is for her. Normally she needs us to stabilize her rt. knee, or hold her arms - some type of support. I had been able to get her to stand alone for a max. of 5 secs. before her legs give out or she starts crying and panicking to be "all done!". I told her to stand strong so I could tie her shoe and she just kept standing! She stood alone for maybe an entire 60 or 70 secs. That is an eternity for her. I am so proud. She seemed quite pleased with herself! She is a miracle in the making. On another note - we got a letter in the mail yesterday from Shriner's hospital in Erie, PA saying that Ember has an appt. with their upper extremity orthopedic surgeon on May 30. I had applied for care there months and months ago and had sort of written it off but now we go soon! Go Ember!!

Friday, May 11, 2012

A visit to Shriners Children's Hospital

Ember and I just returned from a trip to Shriners. It had been 6 mos. since her last visit so she was due back. As always I get excited about the possibilities of these visits. I can't wait to hear from the drs. how well Ember is doing, how much progress she has made, and most importantly what we (they) will be able to do to help her even more. I came away from Ember's appointments feeling so frustrated. Let me re-cap her visits. First we met with Dr. VanBosse. He is the reason we travel all the way to Philadelphia. Among many in the arthrogryposis community he is considered THE "go to" dr. for lower extremities. I have been very satisfied with him. I trust his opinions on the path for Ember. He has always remained optimistic that Ember will walk. He seems to have a good balance between just enough medical intervention vs. not enough. His plan for Ember is to schedule anterior hip release surgery as soon as they have a place on the schedule. This will likely be several months out - maybe as many as 8 mos. He is a popular surgeon and in great demand. This surgery should allow Ember better control of keeping her legs underneath her instead of wanting to pull out to the sides. Her hips have quite a few contractures. She will probably need surgery on her rt. knee as well but we'll address that next year. In the meantime we will get our 2nd opinion here locally but I see us still staying with Dr. VanBosse.
The next appointment was with Dr. Z for Ember's upper extremities. Dr. Z is very nice. Great bedside manner. Seems to have Ember's best interests at heart. It never fails though that I come away from his visits feeling very discouraged, frustrated. He seems to be very "conservative" in his approach with Ember. There is nothing wrong with that but it frustrates me greatly as well. For now his plan is for Ember to wear a static progressive splint on her left elbow in hopes that she achieves a passive 90 degree bend in about 3 mos. At that time he will see if she has gained enough bend or if she will need elbow surgery to help get the bend she will need. This is fine. If we can avoid surgery I am all for it. But that is where my frustration also begins. He doesn't seem willing to look into anything that might give Ember better arm function - such as a muscle transfer. His reason is that her hands would be too limiting. Her fingers still don't bend - at all. They are stuck straight and will likely stay that way. However as time goes on she is getting better at pinching between her fingers and I believe she will only get stronger. I don't understand why that would limit his consideration into other treatment. I'm just not satisfied yet that Ember has so few options. I am sure we'll be looking for other opinions. These visits are so overwhelming for me. I try and remember to ask specific questions but it never fails that AFTER the appts. I have a million more questions. It is stressful to have to make such big decisions regarding which path to take. What is best for her? What will give her the best chance for better function? Will we make the right choice? I try and retain what the drs. are telling me, I take notes, but still I feel uneasy.
Medical technology has come so far in so many areas. It just seems hard to believe there are so few options for help for Ember - esp. her arms. I mean, there are robotics for everything these days, drs. can transplant almost any body part, so many promising advances. Why nothing to help Ember? Since Ember came home I have been tired. At first it was because we had to adjust to our new family member. Then it was because with 5 kids - 2 with special needs - I am busy. The girls have many therapy appts. each week on top of regular busy schedules. But it was more. My spare time is used differently these days. I research. I spend so much spare time at night when I should be sleeping researching. I read about what other families are doing for their children with similar conditions. I read about the best way to help Sienna learn or anything to help her reach her fullest potential. I read about Ember's possible options for improving her arm use. I read about what assistive devices will help her maybe walk. I read about where in the world - what dr. - will give her hope to be able to raise her arms. I am learning about how difficult it is to get Sienna's hearing aids working right for her due to her rare type of loss. And on it goes. Then I read blogs of other parents with children with down syndrome, or arthrogryposis, or other needs. Just so I can relate to them. I can see how others are coping and what decisions they are making and what is working, or NOT working for their kids. It is tiring trying to make sure these girls are given every chance for the best outcome. My head knows God is in control. He has a plan, His will be done... But I struggle with knowing what His plan is. Does God want me to continue to research so I find THE right dr? Does He want me to be content with doing nothing? There is a balance there but finding it is hard.
To move away from the subject of me wanting to "fix" Ember I am so glad spring is here. I love this time of year. Mackenna has his little flock of sheep and I enjoy that so much. I had always wanted to live on a farm as a kid. Mackenna being involved with 4H and raising these sheep is so great. The best parts are that he does most of the work but I still get to enjoy the sheep and also that this is something we can do together. I enjoy helping him get ready for the fair all summer long. It is also soccer season so I have the joy of watching him play at something he is good at and enjoys.
I worry a bit about the other 2 boys. I wish they had something they were really interested in or really wanted to do. They have smaller interests but it seems like so much of our lives revolve around either the girls and all their needs and appts. and Mackenna and his busy soccer schedule and sheep. I feel bad. I feel like I am letting them down somehow or not connecting with them as I should. Ember continues to just be a joy to have in the family. She is getting so chatty. She can have these big serious conversations that we can not understand - but boy she sure trys! I'm glad the girls have each other. I do think they will help push each other as well as help each other. They are both so amazing and I think they are amazing.