Thursday Sept 30, 2010

This past week has been a flurry of activity. From coming home from the hospital, resting for a couple rainy days, attending a wedding and then attending a two day seating clinic in Castlegar.

The seating clinic was fantastic and amazing. There is a team of professionals that come from the BC childrens hospital sunnyhill seating division to help handicapped children in the koots with things like wheelchairs, chairs that support their bodies properly, special beds, walkers, standers etc. Russ is the custom builder and he has a van outside the hospital and they take custom measurements and then customize your unit while you wait! It is just outstanding. Russ is the man of the hour. He designed and custom built both a chair and a stander for Anaya.




Anaya seems to really like the chair and the stander will take some getting used to and a lot of practice. It is hard on her body to stand erect, even strapped in as it is, because her little joints and muscles are so soft from never being used. Our physio therapist recommended that we start with a few minutes once or twice a week, after we get some special orthotics to help keep her feet aligned.

You can see in the pictures just how grown up she is now 13 months old! She has surpassed the average life expectancy for kids with Krabbe and we hope she stays strong and stays as long as she feels inclined.

I also got excellent news yesterday. I got accepted to the smart start program so I will be working on developing a business plan for the next couple months. I will need to spend a couple days a week in Nelson but the rest of the time I can work from home and be close to Anaya and HAVE AN INCOME!!! I'm really excited about the prospect of having a challenge that stimulates my mind, makes money, and allows me to be at home with my little love in case she needs me.

Anaya is doing very well health-wise this week and although the trips to Castlegar were strenuous I think some mellow time and rest today will do her good.