6/14 Going Well, and Another Milestone

Josie is progressing well and not so well at the same time. Tuesday she had a visit with an Endocrinologist Doc to assess her normal growth progress. It seems like a good idea to talk to the experts in the know about how well she’s progressing considering all she’s been through over these last two years.

Josie’s growth was on a normal track until about the beginning of last summer when she pretty much stopped growing. That’s when all this GI stuff started happening and the spiral of Doom spun almost completely out of control. It been only in the last few months that she’s shown signs of growth again now that her nutrition is better and she’s not as ravaged as before.

The Doc met with us and gave Josie a poke or two here and there and gave her a once over top to bottom. He was going to go over her nutrition profile and what she might need in order to get back on normal track on the growth scene. We should be getting his recommendations sometime soon.

During this visit we happened to bump into Dr. Saltzman, Josie’s surgeon who saved her life late last year. He was happy to see Josie and thought she looked great. He gave her tummy a quick look and we gave him the lowdown on her pancreatic tube being removed last week and that we were going to come in later this week for the other tube to come out. He said “why don’t we do it right now?”. Perfect! So he put on some gloves grabbed hold of it and pretty much yanked it right out. In about one second it was over. A single band-aid later, and that was that, end of tubes. Josie, of course, needed to show Mom so I had to pick this tube out of the garbage and carry it away in a zip-lock baggie for show and tell later.

Josie visited with Dr. Vehe yesterday and he was definitely frowning his brow at her skin issues. There’s a bit more involvement this week and that’s not what we want to see. Things have been progressing in the right direction for so long, it’s a bummer to be headed backwards again.

He decided to add Plaquenil to her drug list. This is the drug she’s been on before and when effective it can decrease damage to the tissues of the joints, skin and other organs in the body. This pill tastes terrible but because of Josie’s feeding tube we only need to crush the pill up, mix with a little water and then shoot it into her tummy bypassing her mouth altogether. She's in favor of that plan vs. eating it.

Today Josie had some fun with Jocelyn at Physical Therapy. They played and walked and played and worked and played and stretched and played and played. Josie loves visiting Jocelyn. Josie’s strength is improving really well. She’s able to get herself around nicely with her upper body strength but the walking is still a problem. She still real ginger on her broken leg but that’s coming.

The best news of the day though is that Josie got up off the floor from a sit to a stand without any help whatsoever! Not holding onto a chair or table either…all on her own. I don’t think she’s been able to do that for almost a year or more! She was so impressed with herself that she did it again and again and again…about eight times…it was great to see.