A Journey In Hope: January 2012

The past week Mr. Boy has suddenly made huge strides in his mobility. Before, he could barley roll from his back to his front, and couldn't really get into the crawling position from a sitting position, and definitely couldn't crawl. I had to put him in a sitting position or prop him up standing, otherwise he was stuck. But his week he has learned to: go from sitting and pull himself up to standing at the coffee table, and go from his back, roll over to his front and get into the crawling position, crawl, and push himself back into the sitting position! And yesterday he even crawled all the way across the living room floor. We are so proud of him!

And none of this was accomplished with the help of that awful standing device I mentioned a few months ago, that the therapists gave us. I just couldn't wrap my mind around how it was ok for him to be strapped into it, based on his anatomy so I never put him in it. I finally asked our orthopedic surgeon about it one day and he said that I was under no circumstances to put him into that thing! He confirmed my thoughts that since Mr. Boy's pelvic bone is separated and points out, he will correct this in the next surgery by breaking the pelvic bone and fusing it back together correctly, bringing the bones together at that time. So there is no use in trying to force his legs forward and together at this time unless I just wanted to cause him unnecessary pain and frustration. It isn't a muscle stretching issue, its a bone structure issue, just as I had thought. I'm so glad I stuck to my instincts on that one!

Excited after pulling himself up to the coffee table

Starting to crawl

Those of you who know me, know that I am typically far from assertive. For a very submissive person, it is quite hard to be told when your child is first born, that you have to be his advocate against the drs. I like to believe that all Drs are all-knowing and perfect, so I don't have to worry about their judgement. Who am I to say what care is best for Mr. Boy when I don't have a medical degree? These arguments worked well for me while Mr. Boy was in the NICU because I hardly felt like his mother, much less a professional in his care since they took care of him 24 hours a day while I just saw him and helped out during the day. But even once Mr. Boy was home, I still felt powerless to assert myself in any decisions regarding his health. I was told when to feed him, how to feed him, how much to feed him, how to play with him, how to stretch him, how to do his diaper, how often to do his diaper, and even how to hold him... one therapist told me that the way I held him wasn't a good way to stretch his muscles so I should hold him another way. Plus, there just isn't a lot of information about Mr. Boy's condition online or even in the medical journals, if I wanted to find 'my own way.' There is little research about these cases because they are so rare and because it was only recently that people really survived infancy with this condition.

The Lord has really been working on my lack of confidence and helped me out in a huge way by giving me new friends! I found a private facebook group of other families from all over the world, that are dealing with the same birth defect, and have been truly blessed to know them ever since. David said it was like a burden was lifted from my shoulders when I found them. For the first time, I could laugh at the crazy things we were going through, because I had other moms who understood and shared their stories. We were no longer dealing with this "alone." They also empowered me in so many ways. When Mr. Boy was first diagnosed in the womb and we asked the dr what Mr. Boy's life would be like and what kind of prognosis he had, the dr said he had no clue and that we really wouldn't know until we could find some other parents to ask because it's just too rare to know. And our Urologist always reminds us that there is no "one way" to operate on these kids because there just isn't enough research to prove one way is better than another. So this fb group is not just an anchor for me, but a huge medical resource. I get to hear what all the other drs are doing for these kiddos around the world and have the power and confidence to go to our drs and suggest things, say 'no' to things, and demand other things.

After talking to the parents in the group on Monday, I got really motivated and called our GI dr and Urologist for different things and the Lord blessed my endeavors. I asked the GI dr to refer us on since we are not getting anywhere and he is still vomiting 10 times a day, and we can't figure it out. I suggested a few hospitals that we had heard specialized in GI issues, and the one that looked like the best, is where our GI dr did her fellowship, and so she said she would be happy to refer us, but she could also call them up and talk to them about Mr. Boy directly, which is better than a referral since now we do not have to travel all the way to Wisconsin (where the hospital is) for care. So that was a huge blessing. And then I called our Urologist/Surgeon and he called me back directly (usually you just get a call-back from a nurse... but he's just lovely), and asked him about changing some major things about Mr. Boy's upcoming surgery which is about 6 months away. He loved my suggestions and said he would do a lot of research on this and talk to some other specialists and get back to me in a few weeks. Needless to say, I felt like a superstar by the end of the day. We have really been blessed with the most wonderful drs all along the way, but its great to have the power and confidence to speak up when I want things done differently with Mr. Boy's care, and even better to finally have the wisdom and knowledge to back it.