Tuesday, November 24, 2009

11/24/2009 - Update

Now that it’s November (Thanksgiving time) I figure is long overdue (emphasis on L – O – N – G ) that I get you all updated on what’s happening with Josie and all her business. The Reader’s Digest version is – pretty good.

Now that we’ve got that out there I can take another six months off from posting. Thanks for reading. See ya.

……………..

Ok, I can’t leave it just at that…so here goes.

Since May Josie has completed kindergarten, had summer break, gone to a family camp for a week, been to the doctor many times, had gallons of medicine poured and injected into her system, had a surgery, started first grade, been to Florida for a week, started first grade, had tons of fun with friends, and has been generally living life and doing what most kids her age are doing. No professional surfing or mountain climbing…but pretty active indeed.

On the Dermatomyositis front she’s been doing fairly well. It sounds like a broken record but the disease is still active but subdued. Her raging calcinosis has improved which is probably the biggest and best news of the last bunch of months.

The rate of change is so slow it’s fairly challenging to see the improvement or deterioration of her condition. Thinking back, though, at how severe those calcinosis areas were on her knees, elbows, butt, and chin, it’s clear there have been reductions in the severity of the calcinosis. There have not been any of those pancake-batter eruptions lately (although those were kind of fun to pop and ooze – just like that zit you can’t keep your fingers away from, you pop it, gross yourself out, then want to do it again – why are we like that?) and that’s great news. There are just a few spots now where the calcinosis contents are clearly liquid within the skin, most of the calcinosis areas are hard or at least firm like a rubber eraser. Some are little white pebbles or rocks just under the skin, while other areas are more like sheets of hardness. Her forearms continue to be pretty bad and are lumpy and bumpy and a little disturbing to see and feel. There used to be two really big calcinosis spots on her butt that were causing a fair bit of discomfort when Josie would sit on a hard chair, but great things have happened with that keester of hers. One of the spots has completely dissolved…I mean gone…no sign of it at all. The other big spot has dramatically reduced so sitting is no longer a problem. Now of the rest of it all can see such great improvement.

Josie’s been fielding a lot of questions from kids asking what’s wrong with her. She cheerfully explains “… I have a disease but don’t worry, you can’t catch it.” The kids are great because they look and then ask, in contrast to some of the rude adults who just stare. It’s natural, and I find myself doing the same thing with others at times…can’t help it…it’s human nature. But I sure do notice the glaring sometimes.

It was just that unneeded attention which kicked us over the cliff for some surgery for Josie. She had two very noticeable calcinosis growths under her chin which seemed to be the biggest draw of gawks, so we chose to have those removed. Josie was in the hospital last week for a little cosmetic surgery to hack off those ugly bumps. Surgery went great and the stitches just came out a few days ago. We can tell already that it was a fine idea which looks to be very successful.

Josie continues to be a heavy consumer of drugs. She’s currently taking prednisolone (steroid), Cellcept, Metaclopromide, Diflucan, Tacrolimous, IV imunoglobuline (IVIG), Methatraxate, Bactrim, Plaquinil and probably a bunch others I’m forgetting about. Recent visits to our trusty Rheumatologist, Dr. Vehe, have gone pretty well. He seems to be generally pleased with Josie’s overall condition and progress, so he’s essentially not changing course too much. Perhaps a little weaning of steroids and adding a little time between immunoglobulin infusions might be a good idea, but generally it’s a let’s-not-rock-the-boat-too-much-here position on the drugs.

Josie still has her feeding tube in place and is still getting much of her calories overnight with the food pump. Sounds tough, but it’s no biggie, really. Just dump a few cans of the Ensure-like liquid food into a bag, pop the tube into the pump, reset the pump, hook it onto the feeding tube attachment thinger in her stomach, hang the bag and turn it on – no big whoop at all. The best part of a feeding tube, though, continues to be the administering of all the oral medication. That stuff tastes terrible, but all we do is shoot it directly into Josie’s tummy via the feeding tube so she doesn’t have to taste it at all. If she had to actually take all that stuff by mouth twice every day, I don’t think we’d be doing as well as we are. Taking medicine is no problem at all.

First grade is going great. Josie’s reading is coming along and we’re starting to get into some math concepts too, which is exciting (sort of). But mostly first grade is nothing but fun with great teachers and great friends and fun experiences. The tough academics can wait for now.

Recently we had a production crew out to do a story on Josie for inclusion on the website of our home health service provider, PHS. They’ve been doing great things for us by supplying us with many of Josie’s drugs, and the administering of the various infusions over the years. Here’s a link to the story complete with a little video too. http://www.pediatrichomeservice.com/our-patients-josie.php

Generally speaking, Josie is really thriving at home and at school and at life. She has tons of friends, is feisty and friendly and happy and fun and just about perfect (but don’t ask her sister, you might get a different answer). It’d be great if we could snap our fingers and make her better and totally healthy, but we’ll take the next best thing. Life marches on and so do every one of us with challenges and all. Josie is a glass-is-totally-full-all-the-time kind of gal, and that makes all of us who surround her much better because of it. She’s awesome.

6 Comments:

Blogger britta said...

Great to read that Josie is living life as normal as possible! I am done seeing Dr. Vehe now as I am OLDer, but I miss him a lot. Keep his humor in check for me! Happy Thanksgiving to everyone!

britta from northern MN

2:05 PM  
Anonymous Julie B. said...

wow, you all have been through so much. I'm speechless. Anything I say sounds so inadaquite(bad speller, I know).
I just hope the best for ya'll.
I will think of you alot.
Please continue your post.

Sincerely,
Julie Bergeron LA.

12:49 AM  
Anonymous Anonymous said...

From what I've read the paleolithic diet has worked miracles for people with autoimmune diseases. The whole premise is that diseases of civilization are due to the diet and lifestyle habits of civilization. You cannot hardly find any sort of autoimmune, cancer, diabetes and even tooth decay is traditional peoples eating the diet pre-agricultural, around 10,000 years ago. delay the idea that hunter gathers didn't live long enough to experience these diseases, because many of them certainly did live long enough and still do without experiencing these diseases. Also, Hunter gathers had a low life expectancy due to high child mortality and accidents "lions and such" not because of type 2 diabetes or lupus. I learned alot from this website, and a book titled "Neanderthin" was written by a guy who had diabetes and rheumatoid arthritis which is an autoimmune disease and was cured due to his dietary changes. Its very interesting stuff and I would recommend you at least giving it a try for a few months, it may help your little girl.

Good luck, Crews

http://www.paleodiet.com/

3:22 AM  
Anonymous Anonymous said...

This post has been removed by a blog administrator.

6:15 PM  
Blogger Angie Barna said...

I have only very quickly skimmed through a few pages of your blog, but the photos of swollen lips and rashes caught my attention. It looks like you already have a diagnosis for your daughter, but it reminded me of one of my daughter’s friends who has severe allergic reactions to all fruits and nuts. Her lips also swell and she gets rashes. I'm certain you've had allergy tests done, but figured I'd note the similarities anyway. Your daughter is beautiful. (I came across you blog after searching images for Fifth Disease.)

8:20 AM  
Anonymous Anonymous said...

i found your families site today while google-ing the word "angel" for a project due for school; and was inspired and captured by your families strength that each of you hold.

i cannot say that i know what little Josie is going through, but i can say that i myself (being a teen) have spent a lot of time in hospitals in the past year. i know the feeling of being sick daily, not knowing what comes next, and the fear of fate itself. i know the tremendous heartache that is involved and i know the stress levels can seem overbearing. you family is strong and courageous.
Josie has a very strong spirit and is a very special and blessed child.

may the lords spirit, and a happy heart be with thee always!

sincerely cierra~
irasmartee13@yahoo.com

6:19 AM  

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