Monday, March 03, 2008

3/3/08 Update

Wowsers, is time marching on or what!? Another day, another week, another month pass on by and we’re still plugging along, scratching and clawing our way toward a full recovery for Josie.

So what’s been happening these last three months (sorry about that…that’s for sure my bad)? Well…it’s sort of a mixed bag to report. Generally speaking she’s doing great, but examining the components of the whole…some areas are not so good. Her underlying disease is still very active, and that stinks to high heaven.

We’ve been boogying Josie around to PT and doctor visits and this and that. The grind of her lifestyle is now our norm. Her relatively stable condition makes it pretty easy to handle the schedule, though.

In December, Josie had a follow-up visit with the Endocrinologist who wanted to get a read on her growth progress. Things are growing! At that time she had grown 1.5 inches in the previous few months…and that’s awesome! She’s now on the height charts…only at the 3rd percentile…but she’s on the charts. The trend line is really zooming heading to the meat of the curve of normal – that’s for height. As for weight though, that’s a different story. She has not gained any weight in the last 18 months. It’s a steady flat-line curve…a concern for sure, but no one’s really freaking out about it.

Josie’s appetite has increased just a smidge during the last few months. She’s still getting almost all her calories from her feeding tube overnight every night. We’re trying to throw between 1000 and 1200 calories each night and then squirt in another couple hundred during each day. Whatever she eats on top of that is just bonus calories. She’s always eager to eat, but the quantities she takes in are just so small…like two bites of this, and a sip or two of that. We’ve tried lots of different approaches to getting her to take more food normally including appetite-stimulation drugs, but even that doesn’t seem to work – at all. It’s a struggle to get her eating volume up and it’ll continue to be a struggle with no end in sight as we continue to move forward.

Josie’s spirits are really great. She’s happy, feisty and fun loving most of the time. Her spot-on Mr. Hyde impersonation has largely been absent recently and he rarely makes encore appearances (R-O-L-A-I-D-S). She’s having so much fun at pre-school these days…she just loves going and has a great time every time…she’s smiling when I drop her off and smiling when I pick her up, which is so cool.

Josie’s strength is coming along very slowly. She’s able to maneuver small staircases now without too much trouble. She’s still a little wobbly and is easily knocked over so she steers clear of precarious balance situations…and she doesn’t like it when our big dog comes running into the house. Physical therapy is going well and progressing, again, slowly. She likes running and is just barely leaving the ground on some steps now rather than the funky speed-walk running gait she’s become known for. It’s hard to tell if her strength is being hamstrung by the disease still or if it’s just a slow recovery after being so beaten down and withered from last year.

Perhaps the worst thing Josie’s dealing with now is calcinosis. Calcinosis is a condition where calcium is deposited in her skin. These deposits create nubs and bumps and disks and hard patches which range in size from a BB to the size of a quarter with the biggest being about the size of a playing card on the back of her left leg. This calcinosis has been coming on for some time but over the last three months its progress has accelerated significantly. She now has dozens of bumps and lumps all over her body with concentrations in her arms and upper legs. These areas are painful to the touch, but most are generally pain-free unless touched with pressure. A further problem Josie is facing now is that there are at least 10 larger bumps on her butt area and the back of her legs which are causing some pain while she sits. If the calcinosis-building process doesn’t stop then these irritated areas could actually wear completely through the skin, which will mean extreme pain and possible infection. There’s no way the good Doc’s know of to stop or reverse the calcinosis process. They do know that if they stop the disease then they’ll stop the growth of the calcinosis areas and then over a long period of time they should eventually dissolve. But, if the bad areas get super bad or way too uncomfortable then we’d have to consider surgically removing some of the nastier ones.

Josie’s medicine regimen is till hefty and dynamic. Cellcept, Methotrexate, steroids, IVIG are the biggies. Vitamin C, Vitamin D, Calcium, Diflucan, Ursodiol, Protonix and Bactrim are all taken daily to help. It’s tough to say what the right cocktail is, and this bizarre disease is so hard to treat. It’s not like a bacteria or virus…it’s simply a matter of telling her body to stop attacking itself. Such an easy concept, but it’s proven to be a futile quest for almost all autoimmune diseases.

So we roll along while keeping the faith that it’ll all work out. Josie’s proven to us that she’ll keep on fighting...what else would you expect, right?


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