We learned a lot of exercises we can do to help build her fine motor skills and speech. We also learned some stretches for her legs and left hand.
The most encouraging part of the day was when the orthopedic surgeon said, "Oh yeah, she'll definitely be able to walk," and the physical therapist agreed. We did not expect them to say that at all. I mean, we think she will be able to walk (because we believe in miracles, she can bear weight on her legs, and so far she has caught on quickly to physical skills), but we just never expected to hear those words come out of a doctor's mouth. So cool!
The therapists and orthopedic surgeon were impressed that her muscles are not that tight, at least not nearly as tight as they expected them to be considering her past sitting in a stroller all day. They were impressed with all the progress she has made since coming home. The PT and surgeon said that they think she will be able to sit up independently (without needing to use her hands to support herself) within a few months if we keep working on it. Wow!
Everyone agreed that there is not anything wrong with her spine that they can see. She has just compensated for her low tone in her trunk (core of her body) and when she leans forward it looks like her hips do not follow suit with her upper body. We were happy to know that there is nothing wrong there with her bone structure. Her bone density also looks decent which was encouraging (*When kids lack proper nutrition and do not bear weight on their legs for a long period of time (like our kids), they can suffer from low bone density, sometimes resulting in osteoporosis. This makes walking tricky because bearing weight on their legs could lead to bone fractures).
However, Nora's hips are slightly out of socket. Again, the surgeon was amazed looking at her X-ray that they were not more out of socket considering her past. He said typically with histories like hers they see much worse damage. She will need surgery though, probably in August, to bring her hips back into socket. He wants us to wait about five to six months before doing surgery to let her keep progressing since she is doing so well. Once she has the surgery, her recovery time will be four weeks long, and during that time she will not be able to bear weight on her legs.
At the end of a long day, we met with Nora's humorous neurosurgeon for the first time. He looked over her MRI and said that he is pretty sure that she does not need a shunt or any other brain surgery. She does not have hydrocephalus. Since her fluid is asymptomatic, it is not considered hydrocephalus anymore. Basically, she was born with hydrocephalus and should have had a shunt put in her brain at birth to redirect the fluid out of her brain. She never got a shunt, but her brain took care of the fluid itself and compensated for it, so now there are no symptoms of it. This neurosurgeon will not operate if the child is asymptomatic. There is what he described as a sort of gray matter in her brain now, but it does not need to be treated. The neurosurgeon asked us to see a special doctor who will look in the back of her eyes just to make sure there is no pressure on her brain. (He wants to be sure he is correct about her not needing surgery.) Shortly after coming into the room, the neurosurgeon said that he can tell she does not have any symptoms because she is so happy. If she were experiencing pressure from fluid build-up in her brain, she would be miserable with headaches and other symptoms. That is good news. If she is cleared, then her only big diagnosis is mixed cerebral palsy.
We have lots of follow up to do-- scheduling her hip surgery, seeing the doctor who will look in the back of her eyes to make sure she does not need any brain surgery (ie. shunt or another method), starting various therapies, going to a feeding clinic, getting her braces for her legs and a splint for her left hand. One step at a time :) We will start with an appointment we already have scheduled next month to order her equipment.
At the end of the day, we were all exhausted, but it was a great feeling having a team of people behind our daughter supporting her. :) We drove home amazed at how God has graciously sustained our two little ones. The Lord has been so gracious to Nora by keeping her legs loose, her hips still partially in the sockets, her brain dealing with the extra fluid in it on its own, and so much more! He really has protected our kids. We have MUCH to be thankful for!