Copy machine repair man

8/2/06

Today I was asked by the copy machine repair man at work how my baby is doing. I explained to him that unfortunately he passed away and gave a very brief explanation that it was due to genetics. I then went to lunch and had to fight back some tears. I really felt like crying because my mind replayed the morning after Orion was born and the doctors told me that he might die. I really miss Orion.

I’m still just waiting to hear back from the insurance company as to whether or not they will authorize me to have the testing and invitro done. I hope they at least cover part…all would be nice, but I’ve learned to take bad news lately.

Not only is it emotionally distressing to loose a baby it is expensive for the insurance company. My son’s medical bills are already reaching 40,000 and that’s just for two week’s of life. If they would pay for one or two rounds of Invitro it would only be half that. Imagine if a future child was affected by this disorder and was not as sick as Orion. This child could hang on for two to three years and have to be under some serious medical care. This would cost the insurance company way more money. I hope they will see this and help my husband and me out.

I used to feel like I wanted to have a huge family (I am LDS after all). At this point I would feel incredibly blessed to have one healthy child. Gone are the days that I wanted 4 or even 3 children. I would like to have two…maybe with the invitro we will have twins and be done with it. That may be hoping for too much though. I just don’t want to risk pregnancies without testing first. There is too much risk involved.

Dom and I went to visit the cemetery a few nights ago and we were pleasantly surprised to see Orion’s headstone had arrived. It is beautiful.

I’m anxious to get started with PGD and IVF! I think it’s going to be October or January before we try. It would be nice if October worked out, but we are also okay with waiting a bit longer. I think it would just be nice to know at this point. Once we get an answer from our insurance company we can get to the next step in planning.

I’m seriously considering starting up some sort of foundation for PGD/IVF funding. I think there should be help available for people in similar situations as my husband and I are finding ourselves. I even bought a book to look into it. This is something I really feel is important.

Its funny how quickly life can change; just 9 weeks ago we had no idea what Spinal Muscle Atrophy was, but now it consumes most of my thoughts.

I have a famous second cousin that recently had twins. I am very happy for her that her twins are healthy. I feel sad that things worked out the way they did for me, but I hope for the future. I don’t talk to this family member. I vaguely remember her from family reunions when we were both much younger. I recently saw a picture of Gwen Stephani’s baby boy Kingston and it made me a little sad. He was born the day before Orion was and I figure that’s about the size he would be right about now…it’s hard. I remember when I was pregnant I was so excited for Gwen and felt a kinship towards her because of the timing of our pregnancies.

I realize that my thoughts were kind of all over the place, but sometimes that’s how I feel. I try not to think about the sad stuff too often, so I stay busy with planning positive things like weekend trips and things of that nature.