Sunday, February 3, 2013

It's late evening on a Sunday...

 Cody and Gunner are both in bed. My poor husband has been so sleepy lately, and Gunner always goes to bed around this time. So, that means quiet time for mommy to catch up on the blog and eat some milk and cookies. :) Gunner is doing pretty good, both of his big toes are open and draining, but thankfully are starting to clear up. Both of his sides are open and sensitive, and he has open wounds under both armpits and a circular wound on his chest. His nose is also still giving him problems. We found out that it is from him rubbing his eyes when he is tired or cranky. Now, both sides of his nose and across the bridge of his nose are looking pretty rough, but actually are starting to heal. His mouth has been a problem this week as well. He had a HUGE blood blister that didn't let him eat normally for a day and a half. Here is what it looked like, the thing coming out of his mouth is the tip of the blister. It went all the way to the back of his mouth inside.

 But, as always, he is my little warrior.
Mommy got creative about a week ago with Gunner's hair. It is getting long enough now that it stands up and wont lay down right sometimes. So, the other day, it stuck up on its own like a mowhawk. Mommy has gel and hair spray of course, so I put gel in it to make it stay. :)
We have been blessed this past week. We got approved for SSI for Gunner! This will help with the extra expenses monthly to help care for our little guy. :) We are having a small problem with insurance though right now. I am working on getting it worked out, but we could use some prayers that everything gets fixed quickly! Thank you!
Cody is doing well too. He loves his job here locally and it is great for mommy and Gunner for daddy to be home every evening and on the weekends.
The other day, we got a package from The Butterfly Fund. Not for any certain reason, it was a "just because" package. It had in it some really soft shirts and a onsie from a company called Kicky Pants. Their clothes are so EB friendly. They are REALLY soft and made from bamboo. :) Also they are pretty breathable, which is good because too much heat and pressure of tight clothing can make the blisters and skin slough off. Oh, how we love The Butterfly Fund!

We have been working with Gunner to do some sign language. He now can sign "more" and "please". He is so so smart.
It seems like at least everyday, I learn something new about EB. Whether it be little or big, everyday I learn something, and it is almost always from a fellow EB parent or an adult with EB. I learned today, that people with EB have sensory overload with their skin. A lot of times I have noticed that Gunner will whine or arch his back and act like touching a certain part of him hurts, even when their is no blister there. For example, Gunner had his back break down really bad back in July/August of last year. Now, it is healed for the most part but still has the milia (white bumps) and scar tissue where that wound once was. I will be changing his clothes and I will rub aquaphor on his back (to keep it lubricated) and he will cry like something happened or a wound is there. I will check for any new blisters or wounds, and nothing will be there. Well, one of my fellow EB moms asked this question, and got responses that EB skin gets sensory overload. :( I will now be more aware of what areas he acts like this in.
I am so very thankful to our EB family. Yes, doctors help us, but in all honesty I have gotten SO much of my knowledge of EB from my EB adults and parents! It is scary/frustrating/exhausting and makes me want to cry when you go to a doctor and they do not know what to tell you to help your child, or what they tell you to do you already know that it won't work because they do not know about your child's disease. But I find comfort in knowing that I can cry, let out my frustrations, then go to my EB family and vent and re ask the question and get a better idea of what to do. God sure has blessed us.

Finally, I want to close this post with some GREAT news!!!

Gunner's blood work is sent off to the company that is doing his subtype testing GeneDX!!! Gunner did get scared when they drew his blood. He started crying before we even got back to the lab. We go to the doctor and see specialists so much, that immediately now when he sees someone in scrubs he automatically cries. BUT, good news is, we came out with no open skin or blisters from the blood draw!! GeneDX called earlier this week to let us know everything looked good, and that the lab has started working on his blood and we should expect results mid to late March. It takes so long because since Gunner has a recessive form of EB, they do not know what specific areas of his DNA to start looking at for the altered genes. We are so thrilled! Thank you to each and every one of you that have supported Gunner and to continue to support him! We are so very thankful to each and every one of you!

                                                                                   Photo Courtesy: Christie Zink

1 comment:

  1. It is so amazing to see Gunner is doing so well!! Praying for the insurance to work out in your favour and for continued health and healing for Gunner.