Tag: cellcept

We are all back to school doing full-day classes. Rachel has settled into 5th Grade, Julie is loving 2nd grade, London can’t wait to go to Kindergarten everyday and Boston is enjoying going to full-day Montessori. Boston has been acting up A LOT so I am trying to find ways to give him 1:1 time and so far I’ve been taking him on morning bike rides before school. This morning we went to the beach because we had a few minutes to spare and looked for shells. On my walk home from Julie and London’s bus stop I was lamenting to myself that getting all 4 kids ready for full-day school in the morning (NOW) is easier than it was when it was only Rachel who was going to school.  I can only imagine what the neighbors thought while Rachel screamed and cried and yelled and hit us while we got her dressed in the morning and that is pale in comparison to the intense sensory agony she was in while we brushed her hair, her teeth or put socks on her.  I am so grateful for medication and how it has given us intermittent good times with her at(read the rest)

I feel so cool blogging on a Friday night.  🙂 I took Rachel to her monthly girl scout meeting tonight and she had a good time.  It was hard to watch her try and weave a bracelet (to raise $$ for Juvenile Diabetes) because she can’t see and has a hard time with mental processing activities that require sight. I promised her that I would finish the bracelet AND she could buy it off of me towards Juv. Diabetes.  Such a good kid. She is on day 3 of the lamictal.  She is definitely more alert now that the risperdal is totally out of her system and her appetite is MUCH lower.  I wouldn’t say that she is totally under control (behaviorally) but I think even the baby dose of lamictal (25mg for the first two weeks) is helping somewhat.  She hasn’t been in school since Monday but I think she will go back next week. There is a possibility that the Juvenile Batten Disease drug trial – the first one ever – will be starting soon.  There has been talk of it as long as I’ve know about Batten Disease so I’m holding onto a shred hope.  Hope, even if only(read the rest)