The roller coaster continues

Gabbie got her braces last week. At first she didn't like them. But she doesn't like anything on her feet anyway. She spends a lot of time trying to remove shoes and socks whenever she can, so it was no surprise that she was going to try to remove the braces too. But the velcro is strong and goes around, so she hasn't figured it out yet. She doesn't seem too bothered by the braces, though - at least not any more than she is bothered by regular shoes. She is still crawling and doing everything she was doing before them. She tends to curl her toes and push the feet upward, and it defeats the purpose of the braces if she is trying to pull her feet up, so we needed to find shoes to go over the braces to pull the toes down, since the velcro part does not go all the way to the toes.

 We literally spent hours looking for shoes, going in every single store and department store at the mall, trying many pairs on, and still have not found one that fits perfectly. We bought a couple of pairs that will do for now, but eventually we will need to buy the hatchbacks that are made for that purpose. They are expensive ($60-70) and they wouldn't be ready before our holiday trip, so we decided to wait for when we come back.

Then yesterday we had the appointment with the orthopedic surgeon. He is a very nice doctor, very personal, very caring. He said that just by reading her files, he thought her condition was much worse, and he was very pleased with what he saw. He said it is not bad at all, but remember - he sees a lot of stuff, so not being bad at all may not mean really that. It just means that, putting in perspective, it could be much worse. He said that she has some flexibility in her feet, and with this condition, it was at its absolutely worse at birth, and that it is not going to get any worse, it will just improve from now. The level of improvement is what is still up in the air. It will depend on how much Gabbie will be able to do in the coming months and years. He doesn't want to rush into surgery because he believes she will stretch much of the contractures herself when she tries to stand and walk. Just like the doctor at Shriners, he believes that the brain commands these things, and since her brain is normal, she should be able to get up and try. And by trying, she will be stretching. And in the future, whatever she can't stretch, then maybe we will think about surgeries. It is a roller coaster. Not only of emotions, but of medical opinions. Every time we see a different doctor, we hear something different. First we hear "be ready for surgeries, she will need many of them and lots of physical therapy", now we hear different. We want to believe in this so badly that we are afraid of believing just to hear something different next month. I want to be able to run in the steady part of the roller coaster for a while. I want to believe that everything will be ok and soon. I want to believe that next year she will be walking. But I can't. Because part of me wants to be ready for the possibility that it doesn't happen that way. Because the more ready I am, the more I can help her. So call me a pessimist, but those of you who know me well, know that I have always been the Pollyanna, I have always been the one to see the bright side of things, but now it hit home too close. So I am hoping for the best, preparing for the worst, like that feeling that you have when you are going up on the roller coaster, but you know that it will go down at some point, you just don't know how soon or how bad, and then hopefully it is just a bump and the ride ends. 

Arthrogryposis

Arthrogry...whatsis?????? Yes, we finally got a diagnosis on Gabbie's condition. This month has been a very busy one for her with doctor appointments. It started with her appointment at Shriners. We had such high hopes for that, as I mentioned on the previous post, but nothing... Then we had a very good appointment with her physical therapist at Kaiser, who said we should take matters into our own hands and fight for what we want. She helped us by getting an appointment with an orthotist to get his opinion on bracing. We went there and the orthotist said he thought we needed to brace her feet now, that he was particularly worried with the right foot. The same day he got the measurements and was going to send it through Kaiser for approval. We got that feeling that we were finally moving forward!

Then we had her 12 month appointment with her pediatrician. It was a tough one because she got 6 vaccines (3 on each leg) on that appointment, but many positives came out of it. We discussed genetic testing with him, and he was all for it. In fact, truth be told, he wanted genetic testing done 10 months ago, but at that point he wanted to rule out spina bifida, which we already knew wasn't the case. So he put the referral for the genetics department immediately and on the same day we were already taking her to the lab to get blood for the tests (poor thing... on top of the 6 shots and ON her birthday). She was a trooper! We also got a referral to an orthopedist and a nutritionist, since her weight gain is very poor.

The appointment with the orthopedist was uneventful, pretty much she just told us that she thinks Gabbie will need surgeries soon to release the tendons on her feet, and referred us to the surgeon (appointment next week) to get his opinion.

The appointment with the geneticist was great. Both the geneticist and the counselor are awesome doctors, and listened to us and discussed her condition for one hour! We felt like they were treating us very fairly, and that they were really listening. They diagnosed her condition as mild arthrogryposis. In her case, it only affected her legs, with mild contractures on the knees and tight ones in her feet. It is actually much more prevalent than we thought - 1 in 3,000 babies. Doctors were very positive, and believe that Gabbie will be able to have a close to normal life and even run a marathon in her 20s if she wants to. We were so happy to hear all that. But then we got home and started researching about this condition and looking at the information online brought us to tears. Reading about it was disheartening, it was like it brought a whole new level of reality to us. I cried - a lot. My husband couldn't talk about it for 3 days. I know that we are very blessed, she is my perfect baby, but it is always difficult to hear, and see, and read. I think that deep down, while we didn't have a diagnosis, we still believed that it could be positional, and that, with time, it would go away and she would overcome all this. Well, I still believe she will overcome whatever is on her way, but now we know that she will need a lot of help. She will need a series of surgeries for many years, intensive physical therapy, and all the help we can give her to increase her range of motion.

I know that the best we can do for her is to stay positive, learn as much as we can and give her all our love. She has a tough road ahead of her, but she surely already showed us that she has the right personality to overcome all this. Tomorrow she will get her first pair of braces, and I am scared, and stressed! But we know she will take all this like a pro! I just don't know how mommy and daddy will take it...