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.

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!!

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.

A long time

I can not believe it has been so long since I've updated here. Well, actually I can because I am terrible at things like this. I have such grand intentions but reality shows otherwise.
So much has happened since Ember's birthday. She is really doing well. She finally looks like she is putting on weight - she had been holding steady around 16 lbs. since we adopted her. I haven't weighed her but she just looks chubbier.
Ember is keeping me busy with therapy. Right now she gets 4 hrs. private therapy and 3 hrs. early intervention per week. Due to insurance though we are dropping OT for a while and cutting PT back as well. Totally frustrating as OT is so needed for her.
As far as how Ember is doing physically - I've seen great improvements in some areas and a disappointing amount in others. She is getting stronger in her legs and tolerates standing for very short times. She is afraid and that holds her back from trying too many things. Her core is still quite weak but she is getting there. Her prosthetic seems to be doing its job and she wears it daily without complaint. Her therapist does not want to use any sort of gait trainer with her and our walker attempts have not gone well. She can take steps with quite a bit of support on her legs and hips.

She still rolls to get around and since that both takes a while, plus probably doesn't feel too good on hard floor she spends most of her time sitting or asking to be picked up. I so wish for her sake she could get around better so she could at least try and keep up with her sister. It will come.
Then there are Ember's arms and hands. I admit to being so discouraged by this. She has gotten better at swinging from her shoulders and a little stronger at pinching small items between her fingers but that is it. She in my opinion has shown no improvement in using her arms in new ways. No active lift, no active bend, no ability to bend her fingers or grasp at all. Her elbows have gained some additional passive range but still not enough to reach her mouth by any means. I want her to use her arms so badly. I admit this has been a struggle for me to watch. I want to fix this so badly and I just can't. It is hard for me to envision how she will function in the future. I don't utter these thoughts out loud. But secretly I worry.
She is a happy generally easy going girl.
My other daughter Sienna has had some changes as well. Back in Dec. she had a sedated hearing test and her results were not what we wanted. Turns out she has pretty significant hearing loss. She has had tubes for 2 yrs. now and they are still open and working. This means it is sensory-neural and non reversible. So, Sienna now is the proud owner of hearing aids.


I was worried about how she would adjust and how I was going to manage keeping hearing aids on a 2 yr. old! Let me tell you - she doesn't touch them! What a good girl. I don't know if they are helping her or not. I can't say I've noticed a big difference but I guess we'll see.
Here are some pictures for "cuteness" sake.




I have so much to be thankful for. It is easy for me to wallow and focus only on negative things. Sienna's down syndrome brings about so many emotions for me. Oh how I love her, and I am so proud of her. It still hurts though sometimes. Hurts for her. She is wanting to talk now. She wants to but her brain just won't let the words out. I hurt for her. She is the single most loving person I know. She is unconditional and just an amazing soul.
When we adopted Ember I knew it wouldn't always be easy. But I knew it was right. She was meant to be ours. It hasn't been hard is many ways. She is a good girl who loves us and we all love her. She is affectionate and happy and adjusting so well. I want so badly for HER sake to have her limbs work. Well meaning people reach out to her for a "high five" or to hand her a toy and she can't move to take the toy or give a five back. I hear people say "poor little soul". I fight to not agree in my mind. She has tons of potential. But I to think "poor little soul". Like Sienna she faces so many challenges and battles ahead. That is my struggle. Watching my beautiful girls struggle. They are each so amazing and perfect in their own rights. I want everyone to see them the way I do. I don't want them to be hurt or to have to struggle with things most people take for granted.
Ember does not go back to Shriner's until around May so right now we are just focused on gaining everything we can through therapy. It will be interesting to see what the next course of action is for her - if anything at this time.

Happy Birthday sweet baby!

Today is Ember's 2nd birthday! She had no clue :) I'm so grateful that she is home where she belongs. I had to wonder though how her birth mother felt today. Was she sad? Does she wonder where her daughter is? How she is doing? Maybe she doesn't want to remember. I am so proud to be Ember's mom and so happy she won't have another birthday pass without her family.
I'm a lucky momma!

True Beauty

Beautiful both on the inside and the outside. I love these girls so much!

Another Philly trip down

Ember had a real quick trip to Philly for her initial fitting for a prosthetic foot. This is how Ember feels about drs. these days!

However, fortunately for her there was no pain this visit. I hope that getting this prosthetic will help Ember start the road to standing up and maybe walking. Our next visit on Nov. 7 will be a big one. She meets with the surgeon for her upper extremities, the surgeon for her lower extremities and she will get to take home her new foot! It will be interesting to hear what the next course of action will be for Ember's treatment. We are also seeing a hand surgeon here locally and getting their opinion on treatment. I can see having to make some decisions in the near future about which course to take, what is best for Ember, what is best for our family, finances, etc. Traveling to Philly is not ideal. It is by no means cheap or convenient. But we have to balance what gives Ember the best outcome. For others who are in same position - how do you decide? How do you manage?
Here are some pictures of Ember's prosthetic fitting.