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On The Road Again...

We are gearing up and getting ourselves together to head out to Dallas in the morning. We typically leave on a Monday morning and her appointments with her CLT begins on Tuesday and ends on Friday. Thankfully there is an awesome resource called The Ronald Mcdonald House. This will be our 4th time staying there and there are really not enough words to describe how amazing this place is. It really is a place where families can be together and not have to worry about ANYTHING. Different charity groups come in and feed the family 3 meals a day as well. The only thing RMH ask at the end of your stay is a donation IF you want to. We have met so many people from around the world and the USA here. If you are looking for a place to donate to, Ronald Mcdonald House is really a great one to do so.

Back to our trip this week. Tuesday, after her therapy we will go to the women's health boutique and try on her night garment that came in last week. Also, we will be trying on a thigh and knee piece that will partner with her farro Velcro calf and ankle wrap. I am pretty excited about this because the farro Velcro wraps REALLY worked for her, but we had to stop using it 2 weeks ago because her knee and thigh were swelling pretty badly. Even though we aren’t back to her normal thigh size we are smaller than what she was a week ago.

I am really hoping that we are ready to be sized for her day garment (compression stocking) but honestly, I don’t think we are there yet. Which saddens me because we have been actively trying to reduce her size for 2 months or so. I have no doubt we can get smaller but based off of the humps we have had to get over, I don’t know how long it would take to get her to a desired maintained size. Who knows, her therapist might decide to go ahead and get her fitted. I wonder, even if we are in compressions, can she still be downsized? Hmmm. Good question that I will have to add to my notes!! One thing for sure, the ups and downs of the swelling can be very discouraging, especially in the beginning because you can’t help but think it is something you are doing wrong. Frankly, I hope it is something I am doing wrong. We can fix wrong.…

I will end this blog here and hope to add more to this post once we have our first visit with the CLT and get her input on the progress we’ve made.

Ok guys, I did try to post to this blog while we were in Dallas to give live updates but for some reason, I was having trouble with the "save" button and everything I wrote has been lost. I am blogging from the comfort of my home. A week since we had our trip.

Tuesday was our first appointment with our CLT since last month. She was disappointed that we had lost our progress from the first two weeks solo after our last sessions but assured me that there were still milestones achieved.

1.) Her fibrosis is in fact breaking up nicely.

2.) Her skin on her foot and ankle have returned to 94% normalcy.

3.) Wrinkles on the bottom of her foot. (I never noticed it!)

4.) We did not get bigger. She stressed that this is part of living with the disease. Things will happen and you will have to make decisions to address one problem even though you might lose some ground on the other.

She gave me tips and tricks to use in the future if we happen to run into that again, but being that I was limited on options, we did exactly what she would have expected us to do being that we are at a disadvantage of not having a local CLT. She did her thing with Jo in regards of in depth MLD and Compression and we left there to venture out to the North side of Dallas to pick up her night garment.

So, this is Jos custom TributeNight. Of course, she chose pink, and we are in LOVE with this thing. In the shop when the fitter put it on, she had this fancy paper foot thing that helped slide her foot right in. Of course, it looked like work once the foot was in place, I know for sure the lady broke a sweat while getting this up the rest of the way. HAHA!

With this garment the fitter added at the bottom of the foot grippers for walking, and she added it to the slipcover as well. There is a heel pull loop and also to pull loops on each side of the leg that Velcro's down once you have the garment in place. We didn't want to do a zipper as we thought it would be an accident waiting to happen in regards of snagging her skin when putting it on. Smart right? She explained to me that this is not just for nighttime it is in fact for "light activity" so when she is at the house or car rides it works for those types of activities. Just an awesome tool to add to our kit! Also, as she decongests its free fittings on this garment!

Once our day ended with our appointments, we went back to the Ronald Mcdonald House and Jo found her way to their library. This could not have made my soul happier. Book after book and hour after hour. This is how she spent her evening relaxing.

When we woke up Wednesday morning and headed back to the hospital for another CLT session. We were shocked to find that her ankle and foot had returned back to the desired size and feel of those two weeks from October. Her CLT and I were jumping for joy and celebrating which indicated to her that we had in fact achieved that weeks prior and made her outlook over the next few weeks even more promising as we now have this garment and will have her thigh Velcro to wear with her farro for day use. She continued on with her MLD and wrapped her in bandages and we touched on techniques in regard to her bandages. Wednesday was really a great day of progress and Jo enjoyed a RMH birthday bash that evening as well.

Thursday came and went and of course we saw even more progress. We incorporated new MLD for home and went over everything we had learned up to that point. We sure were getting excited for the next day to get her measurements. We couldnt leave the hospital that day without Jo having to stop in at the TV station. ( I will talk about that more later) She will does shine the brightest in the spotlight and I love watching it.

And we also got her thigh/knee piece for the

farro calf! YAY! We are set for 23hours a day of compression!!

So, the thigh/knee piece is ONE piece. Ill include the pics of what we are using in garment wear!

I have carried on too much and will end this post here. :)

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