Monday, September 26, 2005

More New Things

Ok. Talked to the therapist today about our concerns over J's skin. Told her we were wondering if it might not be a bad idea to stop wrapping for a week or two and let her skin get back in good shape, just do our massage and the like.

Wow! That was nixed in a hurry. Gretchen says we ~need~ the wrapping to prevent fluid we move from flowing back. I agree, partially, but am still VERY concerned about J's skin. So...

Today we did extensive massage on J, with extra work with the little handheld massager on her toes and dorsum. (She was unwrapped from midday Saturday til therapy at midday today so the dorsum was a little firm, nothing like as hard as it has been, but definitely a little firmer.)

We then did the now-usual elastomoll wrap around her toes, a light elastomoll wrap to about 2in above her ankle bone, and a single 4cm bandage from just below the ball of her foot to the top edge of the elastomoll. When J was wearing her socks and shoes you couldn't even tell she was bandaged. Gretchen seems to be trying to reduce the bulk of the bandages since we are experiencing an unusual heat wave in Austin (temps over 100 for the past 5 days!) .

We took guideline measures further up her legs, above the bandages and below the knee so we can try to determine if these shorter wraps make things worse up higher (since we're fairly sure J's LE only extends to her ankle, currently).

What have I noticed so far?

Well, we need our vetrap. The bandages, when I took off her socks and shoes at bedtime, were rolling up off her heel and generally a little loose. Adults have less trouble with their bandages, but I think this is because they are nowhere near as active as a preschooler! I'll check both the unadorned bandages and the measures further up her leg in the morning and try to figure it out from there.

Oh! And my last bit of anxiety. We have confirmed that J and I will be flying out to SoCal for some family things in a week and a half.

A) I'm not real keen on flying. Not paranoiacally afraid, but not keen either.

B) I've never flown with a 4yo - what have I gotten myself into??!???!

C) I've never had to prep lymphedema legs for flying before. I've got some tips and tricks I've been saving from Bob Weiss and others on various LE lists, but am still a bit nervy. She sees the therapist for a full to-the-knee wrap the day before we fly, but I have to prep her myself for the flight home. (ack!)

Ah! If we have any lymphkid friends in the SLC area, we should be there for a day or two around Oct. 10th and we'd love to meet up...

Saturday, September 24, 2005

The Good - The Bad IS The Ugly

Well... Things with the shoes have been going well. The tops of her feet are staying soft, and slowly getting a little shorter/flatter. Real slowly, but we'll take what we can get.

That was the good.

The ugly bad is that at least some of the fluid is moving back into the toes, especially in her right foot, and we've lost all the ground we gained with them. Poor little piggies are all full up again and look SO tight and painful it made me want to cry for her. She's also getting heat rash on her toes, under the kinesio-tape, so we just taped the tops of her feet Friday morning and lotioned up the toes real good.

It looks as though therapy may be a little ~too~ intense in this unseasonable late September 100 degree heat we've been having. We've been pretty darn aggressive since I really WANT to get her feel to a "normal/maintenance" state this time. Maybe too aggressive. Her skin is starting to seem fragile; thinnish, easily marked by pressure of the bandages, and HOURS after unwrapping if she experiences any kind of temperature change (in today's case, playing on the slip 'n slide with her cousin) the areas where she was bandaged pop up raised and red again, as though the bandages had just been removed.

We did an UBER light wrap Friday, elastomoll 'round the toes, wide 3in elastomoll up the legs with a small foam pad on either side of the ankle and coban/vetrap for compression, no artiflex or compression bandages in hopes of reducing the heat/bulk problem. The heat rash looked better today when I unwrapped her to play in the water, but I'm worried.

Her skin has always been ~so~ good. Tough hide, NEVER had an infection despite having gotten cuts/scrapes/bug bites on the affected areas. If what we are doing is breaking down the skin should be stop, give it a chance to heal, then resume? We've made it to four infection-free and I want to stay that way as long as possible. Once she gets her first round of cellulitis things will never be the same. Her susceptibility to it will increase dramatically and this will become more than an inconvenient condition, it will become a potentially dangerous one.

So... She's unwrapped, asleep after several hard days of play with her Rita-refugee cousins, and I'm gonna take a hard look at her skin in the morning. Gonna have to do some hard thinking about continuing therapy right now...

Wednesday, September 14, 2005

MORE Trying New Things...

Hmm... Another new thing with good results in the toe region...

We have be doing amazingly well reducing the height of the swelling in J's dorsum, and are back in shoes, sometimes. Granted they are a half to a whole size too long, and wide-width, and pretty boring, but they are shoes.

Well, Ms. Gretchen wanted us to try something new. We've foregone almost ALL the foam and padding, no chip bags, no nothin'. Just (in order even):
  • stockinette to the knee (open-toed)
  • 1-inch elastomull in new and increasingly creative weaves around the toes
  • artiflex to the knee
  • foam pads for the front and back of the ankle area (each about 1 1/2-in x 2 1/2in)
  • bandaging from just below the toes (toward ankle) to knee - we recently switched from 4cm to 6cm 'cause (sniff-sniff) my baby girl is growing up...
  • another short piece of stockinette over the toes to protect them since they are open with this wrap
  • and vetrap (today it was red) to hold it all together. We did socks over the bandaging last week and earlier this week and the bandages slip off over her toes under the socks, so today we're back to our vetrap. It's only in a single, thing layer though, just enough to hold the bandages together... Oh, yea, and for those worried about me using horse supplies on the kiddo, it's the same stuff as coban, just a heckuva lot cheaper
Then, over all this, shoes, tied as tightly as is comfortable. HUGE results in the toes this way, the therapist was thrilled to see 'em today! It has a good, even pressure effect on the fibrotic areas on top of her feet, but now that we've got that down some I agree with Gretchen, it's time to see about getting regular size piggies on my girl...

Oh, if you're wondering... The links above are just the places I found good info and/or pictures of the type of thing we use and are in no way, shape, or form an endorsement for any particular product or supplier of products. But if they wanna give me free supplies that could change--I'm flexible ;-)