Monday, September 24, 2012

A lot to catch up on

 So much has happened since I last posted. I really need to quit the habit of waiting so long! Right now overall, Gunner is doing pretty well. I am still staying home and taking care of our lil guy. This is only possible because of God and my wonderful HUSBAND (yes, I said husband!) that works so hard for us so that I have the ability to stay home.

Yes, it is true, on August 29th, Cody and I got married. It wasn't a big wedding, just us, but we are married all the same as if it was a big ceremony. We will have our big wedding and a vow renewal in the future and we will have the country wedding of our dreams then. We went to Eureka Springs, AR and stayed in these really cool tree houses and got married on the back deck. It was really awesome.


Have you heard of the "I refuse EB" campaign? It was started by none other than the A-MAZ-ING Christie Zink. It is a campaign to raise funds for the puckfund. (Pioneering Unique Cures for Kids). We sported our I refuse EB shirts in Eureka Springs on our wedding day. :)

The back of the shirts have the names of other butterfly children like Gunner, and also butterfly angels that have passed away from EB. I love this shirt and wear it as much as I can!

Gunner is developing his own little personality and becoming his own person. I love watching him learn everyday. We are working with his physical therapist twice a month now. He is wanting to become mobile, he is getting braver and braver reaching for toys at his side and bringing his nose all the way to the floor and sitting back up. He gets bored to easy sitting in the same place or laying on his tummy or back and playing. So, our next step is to try and see how he tolerates crawling. We are working on him coming out of the sitting position on his own.

His PT knows a school with PT students that have an assignment to design and build something that will help a child with positioning and weight bearing that has special needs and she elected Gunner as one of their children! So, the PT students will be coming out early October and visit Gunner, talk with Cody and I about what he can and can't handle as far as his skin goes, and how they will come up with something for him. We are very excited to see what they come up with for him.

We went on the 20th of this month for Gunner's upper GI study in Oklahoma City. The radiologists were not familiar with EB, and they said that everything was normal, but that he swallows slow and his stomach is slow to "dump" into his small intestine. But as far as strictures go, there were none that they saw. But, after the fact I was talking to one of my fellow EB parents, and if a radiologist is not familiar with EB, they are not looking where strictures usually occur, which is higher up than usual. I did not know this. But the good thing is we go to the children's hospital again on October 3rd to see the EB specialists there so we can bring it up to them then. Otherwise, everything in Gunner's GI tract is anatomically correct and working fine they say.
Gunner is so happy all the time. Unless he is hurting, or mad at mommy because she won't let him pull of his dressings (he's getting a little temper haha) he has this sweet smile on his face. I love him so so so much. With Cody traveling for work all the time it is mostly just Gunner and I. It gets hard sometimes, and I break down a lot. Like the queasy feeling I get in my stomach when I am about to do Gunner's dressings and I am easing off the old dressing dreading what I am going to find underneath. I get so sad sometimes and tears threaten to start, then I look at Gunner and he is just playing like nothing is wrong. I think to myself, Gunner is handling his EB better than I am. He truly is a warrior, so strong. He is holding mommy together.

We are going to start the process for trying to find out Gunner's subtype. We know that Gunner already has Recessive Dystrophic Epidermolysis Bullosa (RDEB) which was found out through the skin biopsy they took from him at a week old, but there are also subtypes such as:
RDEB-Hallopeau Siemens
RDEB-non Hallopeau Siemens
Acral RDEB
Pretibial RDEB and
RDEB centripetalis.

All subtypes have common denominators, but are slightly different in their own way. All this information is at and You can also go to these sites to see the specifics of how they are different. We have been told some opinions of what people think Gunner's subtypes are, but of course nothing is confirmed without the test. This test that we have to do is $6,000 and we are not completely sure that insurance will cover it. But we have heard from members of our EB family that if we fight it and tell them that it is for future planning for Gunner and his care, future planning for more children, and ongoing diagnosis that there is a possibility of it being covered. So that is what we are going to do. We are PRAYING that it gets covered. You may ask what the need to know the subtype is. Well, the subtype is more in depth of a diagnosis, severity wise. It will also give us ideas on our decision for future children (and children for Gunner in the future), and it will also let us know what exact genes in Gunner's DNA are mutated. Also, to participate in any clinical trials for possible cures for EB, the type of EB AND subtype have to be known. Some people have questioned me asking me if it is really going to change the way we care for Gunner if we know the subtype and try and come up with that money if insurance won't pay. The answer to that question is no, it will not change. But it will benefit Gunner in many ways and also help us make decisions for our family in the future. Again, you never know what kind of decision you would make unless you are in someone's shoes.

Cody is due home this Thursday after being gone for almost three weeks. He is coming into town for his uncles wedding and so we can go to Colorado. He misses Gunner and I like crazy, just as we miss him. Things are just so simple, peaceful, and stress free when it is just the three of us.

Gunner's feet are the area that is most affected on his body and the most severe. At times, his feet will look so good. Well, I say good, it is good to us, but to someone who has never seen an EB wound, it may still be disturbing to see. But when they look like this.. I let him play with them a bit since he doesn't have but one fingernail that can damage it. He doesn't get the sensation of his feet feeling anything but a bandage very often.

Today during dressings, after I took off his old bandages and felt the relief that nothing new was there, we said our usual "Thank you Jesus for healing me!" prayer, I decided to give Gunner's feet a little tickle on the healthy skin. He giggled so hard. It was so sweet to hear that laugh, then I realized a very sad thought. I don't think Gunner has ever had his bare feet tickled. Automatically tears came to my eyes, the littlest things that I and other people with their children take for granted. Being able to be a little rough and playful with your kids and hear their sweet laugh in response. That can't happen with Gunner he will laugh if you tickle him but it usually gets interrupted with a whimper or a cry and the moment is ruined by EB once again.. I hate EB. I was told to never hate anyone or anything, but I can't help it, I hate EB. For making my baby and so many other children and adults feel the way they have to feel, that my son is going to have to hold back and some things because he is simply not going to be able to do because it will cause him pain. Things he doesn't even realize yet.. I just don't understand,

This blog post has stirred up emotions I didn't know I had been holding on to. I am glad that it is updated and will sincerely try harder to update on our precious boy more often. Thank you all for reading and I pray that you all are well also.