Tuesday, February 28, 2012

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.

2 comments:

  1. A beautiful update! And adorable girls!!

    I know what you mean about the pain of wanting the best for them and for others to see their beauty. They will, in time. Our kids will show them in time.

    They both have come a long way. Way to go! The picture of Ember standing is worth 1000 words :)

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  2. Thanks for the update! I know I emailed your husband about WREX but I'm not sure he he got my email...The WREX is made 45 mins from Shriners at AI Dupont Hospital for Children's. They have a study that will pay for the WREX if Ember is a good candidate for it. It may be worth your time for an eval while you're in Philly in May! http://www.youtube.com/watch?v=f3WX4fBVqkE I really, really hope you can make it to Indianapolis this summer for the AMC Conference, even if you can only come for a day its worth it! You need to meet adults and older kids with AMC, I think it will help you see that Ember will be just fine even if she doesn't gain a ton of arm/ finger movement :-)

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