Thursday, March 6, 2014

2 steps forward,1 step back

2 steps forward, 1 step back. That is how our nurse put it and I think it fits perfectly. We had a really good week! Noelie got a shower chair that works great. Birth to three thought he would be ready for a walker by summer. He sat on his own for several minutes, a couple days in a row! And he did great at his doctor appointments. It was a great week.

Except today I spent what seemed like most of the day, crying. I haven't cried like that in a very long time. The clinic called and told me that they couldn't tell me the results of the ct scan until the doctor got back on the 13th! I kept asking and finally talked to the nurse in that department. She said she doesn't know what the doctor is going to recommend the next step be for sure but she could give me the results. He does have 2 vertebrae that are fused together. The spinal cord inside is not compromised at all, so that is the good news.

The reason for my tears was, in part being told I had to wait till the 13th to hear results, and hearing the results of the x-ray of his hips. The left side is slowing moving out of the socket. She said that this is pretty common for kiddos with muscle tone issues. To tight, and the muscle pulls it out. To loose, doesn't hold the bone in place. He may need surgery. We meet with the pediatric surgeon on Tuesday next week to discuss how soon it can be done, if we should even do it (past history of coming out of sedation has not been good), what this would entail for the procedure and recovery, and the big question we have...if we do it, or don't do it, will he be able to walk like birth to three thinks he will...and what we keep striving for?

I don't know what the future holds. I have so many questions. So many worries. Should we do it? Should we not? Can it wait? Should it wait? How long is the typical hospital stay? How long is recovery? Will it hold for the rest of his life or will there be more surgeries? Who will take care of Samuel while I am in the hospital with Noelie? Well it is late and I am going to try and turn my brain off.

Keep praying people...Thank you

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