New Chair & Canceled Trip

This blanket was sent to us from the Williams family. It's a special prayer shawl made by Kitty Carr from Sacred Heart Parish in Bellingham. As the shawl was made, the crafter prays for its intended recipient. Thank you Matt, Bev, Lily and Sam! Nicholas loves it!
These are a couple photos of Nicholas in his new Tumble Form seat given to us yesterday by his physical therapist, Katie. A family she used to work with donated it to us after their son with cerebral palsy outgrew it. Nicholas thinks it is comfy and it supports his head really well. The best part is that the chair can move on the base, so we can sit him fully upright or lounge him back when he's tired.

Genuinely happy...Thank you, Katie!


These are a couple photos taken at my birthday dinner at the beginning of this month. We had made reservations at Beni Hana's in Beaverton, but there was a wind/rain storm and the power was out so we drove back toward home and ate a yummy dinner at Stanford's instead.


I had a really nice birthday and first Mother's Day. For my birthday Jeff and my parents bought me the Canon Elph camera I wanted, which was a significant upgrade from my old camera. For Mother's Day my folks bought me a willow tree to be planted in the new flowerbed Jeff is working on for me in our front yard. I will post some pictures of it when it is finished.



In other news, we have decided not to enroll Nicholas in the clinical trial at the University of Utah. We did a significant amount of research before making our decision, and ultimately decided it is not the right thing for our family at this time. The expense of traveling there, not to mention the stress of traveling with an 11-month-old seems too great when we can get the same drugs used in the study from Nicholas's neurologist at Shriner's. Yesterday evening I had a long conversation with a wonderful woman who lives about 45 minutes from us and has a daughter who's three weeks older than Nicholas with SMA. She told me that the care they receive at Shriner's and at other hospitals in the area has been fantastic. She has a lot of good information for me and since her daughter was diagnosed over four months ago, I am hoping she will provide us with as much knowledge as possible as we begin this medical journey with Nicholas. Also, since we have not yet seen Dr. Russman at Shriner's, we think it's best to see him next Monday so we can find out what type of SMA Nicholas has and ask him questions about the two drugs used with SMA patients: Valporic Acid and L Carnitine. I was full of doubt regarding the trip to Salt Lake from the start and now feel a sense of peace and relief that we have decided to stay home and find health care alternatives for Nicholas in the greater Portland area.