Toronto Day 10

9am...

That's the magic time for tomorrow. We saw ENT, Anesthesia, Metabolics and GI today, so everything is a go. Because of his lung and airway issues, Noah will go to the constant care monitored room for the night after surgery until the anesthesia has worn off.

Metabolics may add a skin or muscle biopsy to the list tomorrow but they are still waiting on information from Winnipeg regarding the testing Noah has already had done. Noah had a skin biopsy done over a year ago to test for a Mucopolysaccharidoses (metabolic storage) disease after having high MPS levels in his urine. The last I had heard, the freezer that the sample was in had broken down, so his sample had to be thrown in another freezer and now could not be removed (ok, don't ask me why!). Then I heard that they could no longer find a lab to do the testing they wanted....and on and on it goes. So I brought up the issue yesterday and I'm hoping that they will pick up the ball here and get us some answers. Metabolics has already made some suggestions for a skeletal and eye assessment.

We spent some time with physio this afternoon. Both OT and PT have seen Noah alot already since he has been here which has been so helpful. They have been working lots with mobility issues (standing/walking) and have done a very thorough assessment. I wish we could have therapy a few times a week like this at home. But hopefully I will go home with some good ideas to help with Noah's very tight muscles in his legs and hips.

I also had some company this afternoon and was finally able to meet Alison (who brought the gifts yesterday) in person. Thanks for stopping by...it was so good to meet you and a nice distraction in my day. Noah has been enjoying his new Baby Einstein book.

This evening Noah & I went to watch Tails in the Bear Theatre. Every Thursday evening a group of staff and volunteers put on a musical that one of the doctor's wrote. Noah really enjoyed it and I did too. It was very well done and alot of fun. I couldn't help but miss the kids, thinking about how much they would have loved it too.

Please pray that tomorrow goes smoothly and brings us some answers.