So, you've heard all the good stuff about our trip, now here comes the tough part. I even dread writing about it.
After Victoria had millions of x-rays, I thought we would go back and meet with the doctor and have casts put on Victoria to help her legs bend. That was my plan.
I actually thought I had a plan! Ha!
Dr. van Bosse said casting her legs were the least of Victoria's problems. First, he wants to do a surgery that will fix the fact that both of her hips are out of joint. This involves something called a spica cast. The cast will begin at her chest and go all the way down around her feet. She would have to wear the casts for at least 6 weeks.
Here is a picture similar to what Victoria would have, except that her feet would be in casts too.
I think my brain kind of got fuzzy and numb at this point.
The surgery has to be done fairly soon, before she is four years old, otherwise it will be too late. She would be able to walk without this surgery, but she will probably have a lot of pain as she gets older. She will probably develop arthritis by around age 40 without the surgery. She could even end up confined to a wheelchair. But, it also might not happen.
I can't imagine my sweet baby in terrible pain and stuck in a wheelchair as she got older. Then again, I can't imagine my sweet baby in terrible pain now.
The orthopedic doctors I met with here in Atlanta said they didn't think hip surgeriey would really help Victoria, so I never really thought about it again. Of course, these are the same doctors that told me that "walking was never going to be Victoria's strong area". So perhaps I never should have given what they said much credence.
At least she will have her hands, that is, unless we do the other surgery the hand doctor wants to do at the same time.
Which brings me to the surgery she needs for her thumbs. Her thumbs are supinated, which means they kind of work more like an extra finger and it does limit her a bit. The doctors can break her thumbs somehow and do some skin grafts and make her thumbs more functional, which is great. The only risk is if they cut the growth plate on her thumb. Then she will have two year old thumbs for the rest of her life.
Of course, there is the risk of anesthesia.
She will also need a surgery on her feet since one of her bones, called the talus bone, is not in her foot correctly.
See how this talus bone is lined up with the other bones in the foot? Victoria's talus bone is basically vertical, pointing down, which puts alot of pressure on that bone. As she gets bigger, that is going to cause pain too.
The doctors also think she has distol arthrogryposis, which means she has a 50% chance to passing Arthrogryposis along to her own children. Just great.
Finally, she will still need her legs casted too, eventually. Which kind of doesn't seem like the big deal I thought it was.
I'm sure there is a lesson here that I am supposed to be learning, but oh, my poor baby!
Truthfully, I feel like running and hiding somewhere. Part of me wants to do nothing more, not take the risks of surgery and just deal with the "what if's" later. But, I can't, not even for a little while. Decisions need to be made and I have to figure out what is the best thing to do for Victoria.
I just hope and pray I make the right decision.
Because she is worth it.