Update

Rosalie had the last dose of her chemotherapy for this round on Tuesday. Now she is in her recovery weeks. Her hair is falling out again. We are very happy about her weight. She is 14.5 K now and she just looks so much better than when she had that awful rotavirus.

She continues to make progress in all of her therapies. Her speech is getting better and better. She has a very wide vocabulary and she is starting to use a lot more expressions. She can be difficult to understand (dysarthria) but this will get better the more that she talks. Her fine motor skills are a lot less ataxic, but tasks still take her a little longer to complete. She can put on her own socks, thread two big teddy bear beads, and her pincer grasp is back again. Her gross motor skills are stronger too. She is getting her gait trainer next week - hooray! I just know that she will be walking again someday. It will take time though. We are just praying and praying that her next MRI is clear - this would mean that her central line could be removed, which means that she could go in the pool again!!! Water therapy would be fantastic for Rosalie.

She turns three next month which means that her services will transfer from the Early Intervention agency (Golden Gate Regional Center) to other state agencies (SFUSD and California Children's Services). Wow! I am navigating new territory. Working with all these state agencies almost feels like a test of your endurance and organizational skills. I remember feeling this same way when I got my teaching credential. You need one form, then that form isn't enough, so you make another phone call to figure out which form would be better, so you wait on hold, then get disconnected, and on and on. No, I actually shouldn't complain at all because with some explanation all these steps make perfect sense. And our social worker at Golden Gate Regional Center has been great answering all my questions.

I took Rosalie to a meeting to have her deemed as disabled by the state which will enable her to access a few more resources including MediCal. They approved her without any fuss on a basis of not walking at the age of three. MediCal will be a nice safety net for Rosalie and while our primary insurance will cover most everything, it will be helpful to use MediCal for our many co-payments. When I asked one of the eligibility workers at CCS what would be the downside of having MediCal she answered that basically some parents don't like the stigma of the word disabled. The way I see it, I should hope that Rosalie has enough confidence not to feel embarrassed about the fact that something really scary happened to her when she was 21 months old. She had a brain tumor, they had to go through her brain to get it out, and it caused her to need some major rehabilitation. And in a day when millions and trillions of things are being diagnosed, we probably all have some sort of disability! :)

We hope all of you are enjoying the summer. I can hardly believe we are at the end of July - time is just flying!

All the best,
Carolyn