Tomorrow morning Emi and Misha have an appointment with the ortho peds surgeon. Misha is supposed to begin casting for his clubbed feet. He's going to be a bit miffed since he's so active. I'm happy that nothing invasive should need to be done. Emily is to be assessed by the surgeon to see what can be done to help her.
Emily, who came home under the diagnosis of Arthrogryposis, actually has Sacral Agenesis. This means that part of her spine, the sacrum, is completely missing. It causes her hip bones to rest upon one another, rather than the sacrum, and her hips are dislocated meaning the top of her legs are not in the hip sockets. Her knees are also stiff and her feet are clubbed. When we saw the ortho pediatrician we were not given much hope of fixing her feet, knees or hips. He said her hips would probably just slip back out of the sockets. If her knees were released so that they bend and then they became stiff in the bent position, she would not be able to walk. If they do not release her knees so that they bend, they cannot cast her feet to fix the clubbing since the cast/legs have to be in the bent knee position to cast the feet correctly.
If you're reading all this and your heart just skipped a beat, imagine how I felt while holding these two precious bundles when the doc told me all of this. I was devastated. My heart broke for her and what could be her future. I cried then and many times over the few days after we got this diagnosis. But it's been a couple weeks now and each day she continues to be such a joy. They all are. God has blessed us with some amazing children. Did I mention that Emily is already talking in three word sentences in English! She's amazing. The appointment tomorrow will be a consult. We will then take this information to Shriners to get their opinion. We have an appointment with them February 20th.
I've said all that to say this, please pray for us/them through all this. I believe God has amazing things in store of our kids, all of them, no matter how that presents itself.
Sunday, January 4, 2015
Many of you remember her as "Aubree" from the Reece's Rainbow website. We fondly call her Lyra which means music, and if you know our family, you know that her name is very appropriate.
When we first began to pray about adopting Lyra, all we knew was she had a diagnosis of Arthrogryposis and "moderate mental delays"; however, a video we saw of her made us wonder if there wasn't something more going on. She seemed to have some spasticity in her limbs and difficulty talking especially when excited. We were also privileged to see a videoed interview of her asking about what she wanted in a family, what her likes and dislikes where, her favorite color etc. In this interview, the interpreter, someone who knows and loves her, said she was much smarter than her speech would indicate. Since brining her home, we agree.
Lyra has been learning very quickly and although she still has a difficult time articulating her words, she is picking up English quickly as well as American Sign Language. The later she uses when she's unable to get a word out, like "thirsty". Although she never had the privilege of going to school until she came home, she loves school, participates well and is picking up everything very quickly. Unfortunately though her lack of education, special needs and that she is already 15 makes the possibility of her catching up to her peers bleak. However! It can be done.
Lyra has until the age of 21 to graduate with a diploma from the public school system. That gives her 6.5 years to complete 13 years of schooling. We have decided that this year she will stay in the special needs class and we will work on language immersion and early education. Next year it is our goal to mainstream her in a classroom of her peers. Somehow, someway, we can do this. Right now her education plan states she will receive a "certificate" which means she would not graduate, and then go on to classes for adults with special needs. Jode and I feel she is able to graduate, given the chance, and go on to college. She deserves this opportunity.
So wherever you are around the world reading this blog, please say a pray for her, and us, and all those in the education system who will rally behind her to make this happen. We know she has a "long row to hoe" as we say here in the South, but we serve a Mighty God for whom nothing is impossible.
Thank you for your prayers!