Everything in between

Since I started this blog while we were still in the hospital with Amelia and really haven't updated (except to vent, which I deleted those), I will try to give a brief summary of what has happened between Dec 2 and now. 

Amelia had to have a blood transfusion and then after 24 hours we were allowed to go home. Boy was that a scary time for me. The day we got home Matt had to leave 20 mins later to go to school. So there I was with this fragile little girl, all alone. "I got this" is what I kept telling myself. She slept and so I cleaned (I like to clean and organize when I am stressed or upset). I unpacked everything from the hospital, I washed, dried and put away clothes, I dusted and cleaned the bathrooms. I should have rested, but that isn't how I operate. I did fine alone. That next week Matt started working 7 days a week, 10 hour days with a 2 hour commute. I did well then too. 

In the next couple months Amelia was diagnosed with hydrocephalus, cerebral palsy, torticollis, and hip dysplasia. She also has vision problems that are strictly neurological. She had a VP shunt place March 17th and had her cranioplasty (along with a shunt revision) May 1st. That surgery lasted over 7 hours and she was in the hospital a week. She started physical therapy and occupational therapy in June. She goes 2x a week for PT and once a week for OT. She is also in a helmet 23 hours a day. 

We found out that the 7 hour surgery was useless. Her doctor took 3 of her ribs to make up the difference from the frozen bone and it didn't take. Her body is absorbing (well trying to at least) it. Her doctor is certain that the whole thing will be absorbed (or try to and he will have to go in and remove it) but we are praying that just a small area is rejected.  He thinks that in the next 6 months (possibly sooner) she will have to have another surgery. He will put in a temporary artificial plate until she is older and he can take more bone from her rib/hip. 

On Sept 9th she will have to have surgery on her hip. Her orthopedic doctor will go in and scrap out the fat that has built up and push her ball into the socket. She will then be in a spica cast until Oct 14th. Then he will remove it and see if the hip is back in place. If so she will be recasted and the cast will come off Nov 20th, the day before her birthday. If it is not then he will have to go back in and try again. She will then be in a cast till almost Christmas. We are praying everything works the first time. 

She has had so many appointments and has so many coming up. In June she had 3 days where she didn't have any appointments. Some days she had more than one. She decided to skip a few by getting admitted to the hospital. She was in there for 7 days because she had some drainage coming out of the incision on top of her head. She was threatened with surgery, but escaped that, THANK GOD!