I haven't updated in a while primarily because there hasn't been any time! In case you didn't know we now have two children under two. They take up just a little bit of our time. A wee tiny bit.
The children are doing really well. Ayla is falling into her role as the "big sister" oh so well. She likes to make sure Isaac has his snack cup, his sippy cup and she keeps a close eye on him. She also will pat him on the head when he cries. She likes to pick out her own bows, headbands or opts for a ponytail. She is talking more and more everyday and is learning so much so fast! Isaac is always smiling and gives the best hugs. He is taking more steps everyday, loves to dance and do a little wiggle when he is happy. He is learning to hold his ground with Ayla and really LOVES to feed the dogs. He thinks it is SOO funny. When you see them together it's hard to believe they met June 3. They play together so well and love to be together. They are developing their own little language and talk to each other while they are in their cribs. They are awesome.
Everyone knows that we adopted through the special needs program in China. We have not written much about their special needs for a couple of reasons. The main reason was that we didn't know exactly what their needs would be when we got home and what that would look like for our family. We received medical reports with our referral paperwork but you just never know until they are home. They are doing so well and thriving. With that said we have some work to do!
We will start with the assistant mother. Ayla has fibular hemimelia. That means she is missing the fibula in her right leg (one of the long bones between your knee and ankle). Commonly associated with this diagnosis is a missing foot or toes. She is missing most of her right foot. This is not associated with any syndromes or environmental causes. It just happens sometimes. She is doing amazing and the surgeon was very happy with her current function. She is able to walk around the house fairly well with no help. She will undergo a small amputation of a portion of her right leg in the next one to two months. After that she will get a prosthetic foot. She will be up and running in no time. It won't be long and no one will be able to tell she wears a prosthetic. She will run and jump and play sports if she wants to. We think she will up and walking about one month after surgery. We hope to know her surgery date next week.
Now on to the baby of the family :) Isaac has spina bifida that was repaired in China when he was just weeks old. There are many forms of spina bifida that range from no impact on function to full paralysis. The very short explanation of spina bifida - your spinal cord is surrounded by a protective sac and in children with spina bifida a portion of the sac is outside of the body. In some children the spinal cord is also in the sac outside of the body at birth. Children with just the sac outside generally have less functional loss while children who have the spinal cord and sac outside generally have more functional loss. Isaac is toward the milder end of the spectrum. He can crawl like lightening, cruise all over and is starting to walk around the house without holding onto anything. He does have some weakness in his left leg that is associated with his spina bifida but we can definitely work on that.
We have been very busy with specialist appointments, assessments and diagnostic testing since we have been home. We have seen orthopedics, neurologist, cardiologist, audiologist, infectious disease, physical therapy, speech therapy...had xrays, blood draws, ultrasounds....and we still have many more appointments to go. Ayla has surgery, Isaac has an MRI scheduled and the list goes on. Both kids have been amazing through the appointments and traveling to Cincinnati Children's to see many specialist. Granted we may have been stuffing them with goldfish, cookies and whatever else kept them happy at the time. You gotta do what you gotta do.
So how is the rest of the stuff? Ayla and Isaac have had so much change in their lives. They have lost people that loved them deeply and people that they loved deeply. It's a big change. New everything. Everything they knew, gone. That is a lot for a little mind and heart to wrap itself around. We are wading through some of these losses and anticipate that we will be for a long time to come. Right now sleeping is our biggest challenge. Things are improving in this area but I think there may be a long road ahead. And that's okay. Right now we are sleeping in their room at naptime and throughout the night. One of us, mostly me, needs to be in eyesight at all times during the night. Jake tries but Ayla only wants mama in the middle of the night.
I just want to thank our family and friends for all of their support. Ayla and Isaac are so loved and we feel blessed that so many people have welcomed them home with us. I have to say that I promise my thank you notes are coming out! We truly appreciate all of the gifts and I feel AWFUL that I haven't sent them out. We have been surrounding these two with love, trying to show them that we will meet all their needs and teaching them that we are a family (plus toss in a load of doctors appointments) so that kinda eats up every single minute of every single day. A lot of things have just been pushed to the back burner much longer than I anticipated.
We will keep you updated on their medical needs, surgeries, etc as I know that many people are thinking about them. They are doing well and are amazing, wonderful children full of personality. I can't believe how fast they are growing and changing. I am not sure that I like it! I kinda want them to be "little" for a while.
