Journaling Jan 25

Here I am again. Christmas and studying for my final took up my mental energy until mid-January and then our computer was hit by a virus. Bruce has a few kinks to work out still but it was functioning well enough today to quickly check e-mail and write here. The up side to having the computer sick has been that we have had a lot more interaction with Camille, and it has been fun to have her about the house and wanting to converse.
A few weeks ago we had our now yearly visits with Tricia's orthopedic surgeon. Her weight is up to 40 pounds now. Dr D'astous says her cheeks are full and she is healthy and her small size is actually good because being lightweight has kept her mobile. She has developed a squishy bump on her back that concerned me. He examined it and determined that it was a "pillow" that her body had made around one of the metal connectors (like the 3 that were removed a year and a half ago) that was too close to the surface. As long as it stays that way and doesn't rupture all is well. The people at Shriner's are so good at making Tricia feel cute and smart and normal. They are so kind to us that it about ruins us for everyday life.
I have been worrying about what is to come for Tricia--Jr High, Young Women's, etc. You can never worry too early or too much is my motto. After talking about it to several people I decided that I would start to research options for Jr High. Among other issues, Sunset Jr is a two floor building, has inaccessible portable classrooms and the special needs bus arrives in South Weber at 6:50 am and returns at 4 pm--making it an hour and 15 minute longer day than the normal buses. I have driven her to school until now but the jr high is a 20 minute drive one way. I found the counselor at the school that was over this and made an appointment. Last week we met and I explained Tricia's needs and abilities. He was so warm and helpful. I had come to the right place, he told me. The school had to comply to her needs--ramps could be built, classrooms reassigned, an elevator key given, a suitable aide hired, the day shortened, a small bus with a wheelchair ramp sent to pick her up and take her home according to her schedule-- whatever she needed. His sister is the district nurse over the 504 program (the gov't funding program for children with special needs outside the regular parameters of special education). He had connections and he would get right on it so all would be in place in August. I can't begin to explain the huge weight that I felt lift from me. In fact I didn't even make it to the car before I was sobbing. I often feel so alone caring for her. I'm not really complaining but my life focuses so much on her--even in the best of times like now I am still dressing her, helping her bathe and go to the bathroom, making sure she has eaten, making sure there is food in the house that she will eat, taking her to school, assembling the scooter, opening doors, picking her up, carrying her around, being her booster chair at restaurants and at church, plugging her ears when there are too many babies screaming, helping with homework, trying to pre-think situations and adapt them for her, etc. I leave my cell phone in my pocket in case she needs me and I keep my life flexible so when she is sick I will be available. To meet someone with resources and a willingness (even if it was his job) to help me touched me deeply. It reminded me of the conference story about the man who daily carried several loads of firewood on his back (Bro Whitney Clayton Oct '09). Someone that day eased my burden and hauled a huge load of wood to market for me.