Tuesday, May 20, 2014

Home...Finally!

We finally made it home on Thursday of last week and are slowly getting back to normal...whatever that is. Bailey has been doing well and we even made the trip to Tennessee and back with no repercussions. We ended up staying in Tennessee for about 9 days and enjoyed seeing friends and family for an extended visit. So many people have asked me for information on what the Drs. in Colorado came up with. There are some things that are unclear at this time and we are working on answers. They do not know why he wasn't born this way, why it happened out of the blue when he was 3, why it is so aggressive, why he blisters, why his adrenal glands haven't started back up on their own, and why he has the problems with the immune system. Hopefully some of the testing will reveal a few of these things, but here is what they think. They think that Bailey has a rare form of an already rare kind of eczema. It was more than likely caused by damage to his skin barrier. He was diagnosed by Vanderbilt with this from multiple biopsies, but it doesn't look like any cases of this form of eczema that they have ever seen. However, it does respond to some of the same treatments. They basically went forward with treatment, even though they weren't sure that it would work, and low and behold. It is working. They said that Nummular "blistering" eczema is a rare form, and Bailey's is even more rare in appearance and behavior of the disease. We are continuing the same treatment that we were doing at the hospital and have moved down to a lower level of care than when we left. He is still in the moderate category, even though to us he looks amazing. We will stay on this program until hopefully all of the redness fades. He now has NO open places and is feeling really good. He has to go to the Dr. in Orlando and here in PCB to show the Drs. his amazing progress. He is also enjoying his food choices and I can tell he is gaining a little weight. His diet was so restricted, it was impossible for him to gain. They were hoping to increase his calories and this has not been a problem. He is eating everything in sight!! (except for Pnuts) I will post some pictures in the next day or two so that you can see some before and after pics. Until then....it's time for another wet wrap. Gotta run!~

2 comments:

Patty's Stitches said...

Praises to God for his awesome improvement! So thankful for God's grace and the way he is working in Bailey's life! Prayers continue for him. :-)

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