Thursday, May 15, 2008


It's been a pretty uneventful week. Physio on Monday and more bloodwork today. We also did an overnight oximetry study last Thursday without Noah's oxygen, to see if he still needs it. He did have some desats that we noticed, so I don't think we will be able to stop the oxygen, but we are still waiting to hear the final results. Oh, what a joy it would be to not need the oxygen anymore. Although, we have become so used to having it, I would be very nervous to give it up.

The weather is finally cooperating around here and we have been able to enjoy some beautiful afternoons outdoors, where Noah is happiest. I think he could quite literally live outside! We picked up our wagon from the children's rehab center today. They modified it by adding a waist and crotch belt so that Noah can sit in it safely. The kids have no school tomorrow so I think we will try it out at the zoo.

Noah enjoying the backyard...

Noah sporting the new portable Prism pump that we are trying out in place of the Infusemate. It's a bit heavy for him, but he manages. We are now able to concentrate his formula so that he gets 2 hours off his feeding pump in the afternoon (one less thing to drag around). During this time off, I belt the fanny pack to him and he does well dragging it around...


Anonymous said...

I don't know you personally but have followed your story and I just wanted to say it's wonderful to see Noah well enough to play outdoors!
I wonder if he'll be healthier in the summer with so many fewer viruses about.
Best of luck to you all!
( Sask. Canada )

Anonymous said...

Hi Nichole. Glad to hear that Noah is doing well and enjoying the great outdoors. I may not post everyday, but I check Noah's blog atleast 3x's a day. I love my Noah bean. Never seen or met you guys but think about you all daily.

Take care and may God continue to bless you all!


Anonymous said...

Oh, it is so good to see him outside. What a blessing to beable to enjoy being at home during this wonderful season. We pray that he will stya healthy. love mom