June 20, 2009

A New Day

It was a very productive day today. My beautiful friend Heather and her little boy blue came to help clean the house. We gutted the nursery that had been my dumping ground for about 2 months now and got it organized and clean. She even organized the closet..and vacuumed. Bug and Boy Blue had a great time playing once they got reacquainted. We used to live three doors away from each other. They were our other family. I still refer to her for my kids as Mummy Heather.
We also gutted Lee's and I's room...my other dumping ground. We got it rearranged for adults and put the crib in the nursery. The front of the house needs some attention still, but the difficult stuff is done.
Bug is sleeping in her own bed (which she has done for several months now) but tonight it's in her own room. I can't help but look forward with some trepidation. I'm sure that all co-sleeping mummies must go through this. I worry that she'll be able to make the transition. I worry that she'll think I'm abandoning her. I worry that somehow this will scar her forever. Ahh..the frantic late night thoughts of a mum. She's taken two naps in there already and it is quiet in the back of the house, which bodes well...I hope.
I can't help but be emotional right now. I have such beautiful people in my life that so enrich it. Heather has always been honest, without ever hitting brutally honest. I know that she will tell me what she thinks and not what I want to hear. It's such a beautiful trait in a friendship. To know that you can be honest and that the friendship will stay alive.
I'm also emotional, however, about the passing of my grandmother. With such wonderful news about William on Thursday I wanted to pick up the phone and tell her. I knew she didn't understand things as well as we would have liked and things often got mixed up, but I knew she would be so happy. I can't help but kick myself and say I should have called more. I should have gone up more. I know that up above she doesn't want me to think these things, but I suppose it is something we do in this mortal life...wish for the past and wish we could change things. I suppose, that the only thing that we can do is learn from our mistakes. To do things that we wished we would have done for someone else. To take time in our relationships. To accept each day as a wonderful, glorious blessing to live life a little better, to strive to be a bit happier, to serve the ones we love..and the ones we don't with a purer heart. To know that today...is a new day.

Christmas in June

I had a hard time falling asleep last night..sleeping very well..and was up at ten to 6:00 this morning. I felt like I did when I was a little girl, trying to get to sleep on Christmas Eve. Today, I have a friend coming to help me clean and organize the house.
I'm so excited. We've lived here for 9 months now and I'm still trying to figure out a place to put everything. I desperately need a new pair of eyes to help me figure out what I can't wrap my mind around. The other thing is, my house has gotten completely out of control since the accident. This accident has really messed me up. I have a very difficult time walking, bending, showering, reaching up, etc. What a blessing it will be to have a friend come to help. I can't wait to have a clean house and have a place for everything. I have some very amazing friends.

June 19, 2009

William's UCLA

I've decided to start blogging again. I can't guarantee how long it will last this time, but I thought I'd try and stick with it. There are just too many cute things the kids are doing to not record them.
However, I thought an appropriate start would be to blog the results of William's X-Rays from UCLA. We were supposed to get the results in one to 4 weeks...three months later (and me feeling a bit guilty for stalker calling the genetics department) we finally got some results yesterday! They have pretty much all but ruled out the more serious of the two forms of dwarfism we were looking at. We are now looking pretty seriously at Hypochondraplasia. This was really fantastic news for us. His spine and skull were non-remarkable. Which means nothing wrong. His legs, at the time of the X-Rays, were proportionate. His arms, however, have proximal shortening. This means that the bones in his arms from the elbow to the hand are short. They are the same amount of short in each arm. I asked if this could be something else. Apparently not. Because they're the same amount of short and it's in both arms we are definitely looking at some sort of disorder.
I've done a bit of research on hypochondraplasia. There isn't too much scary about it. The short and long of this disorder is that the cartilage in his body has a hard time forming into bone. He will probably be around 4'10" - 5'4". A lot of children that have it do develop bow leggedness, but mostly grow out of it. The bones sometimes have problems in their sockets. Most children aren't diagnosed until Toddler hood when they stop growing. We think that because William was in such an amazing NICU unit for so long we caught it at the beginning of his life. Funny how sometimes such horrible tribulations turn out to be such amazing blessings. William will have to stick with the physical therapy for awhile, but we've already got him started in that, since he isn't hitting his milestones. There may be surgeries. There is conflicting evidence that about 10% of people that suffer from this disorder have some sort of mental retardation. However, like I said that's conflicting. The experts are starting to really challenge that from everything I've been reading.
So the next step is getting authorization from our insurance company to do the genetic/DNA test. Once that gets sent off it will take anywhere from 6-8 weeks at the earliest to get those results. In the meantime, I kind of got the feeling that we would be referred to Cedars Sinai Hospital, which is a large hospital out here in the L.A. area. They have a specialized Skeletal Displasia Unit....which I suppose is the clinical form of dwarfism. (There are over 400 different kinds of dwarfism. Some are lethal, some have shortened life spans, some have organ problems and some have very serious mental retardation.) When William was being evaluated for the first time at UCLA we had two doctors from that unit looking at him as well, because there was a conference on Dwarfism that day. God's mercies are never ending.
We are quite encouraged with the news and are feeling better and better all the time. I doubt we'll have any results before October when his birthday is. I try and keep that in the back of my mind so that I don't get too anxious. It is incredibly comforting to know, however, that God made my little guy exactly as God wanted him to be. You can't ask for much more than that. :)