Tuesday, February 12, 2013

Gunner has been doing...

good lately. He is quite the character! He is so full of love, and life. I love him so dearly. I wanted to let you all know that Gunner's insurance issues have been resolved, Praise God! He is now on a different type of insurance he already had that is specifically made for children with a disability. Now, if he will need some type of formula like pediasure or boost (we will know at his 15 month check up in March depending on his weight then) they will pay for it. Also, they will pay for any type of assistive device he may need. As well as diapers (if for some reason he continued to need them past potty training age). This program is great. I truly believe (and not just because of this happening, I have always believed that) that when something happens, and you feel like it the world is crashing down around you, wait. God has something planned for you that is bigger and better and that will bless you in a way that you did not even know was possible.

Last week when Gunner had his weekly PT appointment, a representative from a child's chair company came. We tried Gunner out in this chair that is really padded with soft material and it will make him stand and learn how to walk forward. Once he is comfortable with walking forward, we will add different wheels that will allow him to go backwards and side to side in it. They don't want him starting out with the other wheels at first because that would be too much stimulation for him at first and all at once. We tried him in the chair and Gunner looked like such a big boy in it! He cried when we put him in it. Not because he was hurting (which I was afraid might happen), but because I wasn't directly holding him and he was close to the chair representative so he could adjust the chair. He kept wanting to get by me ha ha.


You might be wondering if the straps will hurt his skin. I am not going to say that they cant hurt him, because they CAN. But, they are adding extra padding to his straps and lowering them a bit so that they will not be right underneath his armpits (one of his really sensitive areas). The strap will also not be needed for long (if at all) because he has really strong trunk control. They are also lowering his chair an inch or so. We got to pick what color chair and we chose a deep metallic green color. The front wheels will be clear and will light up when he moves (more motivation to want to move). We will get it in a few weeks. We are excited for Gunner to start being mobile and getting into everything!

Gunner is so smart. He has this elephant that shoots plastic balls up in the air out of it's trunk. He got it from Santa Claus for Christmas this year and he has just learned how to push the button and turn the music on and he will dance to the music. He LOVES to dance and move, ALMOST as much as he loves to go outside and go for a drive. :)

Gunner's feet have been looking pretty "angry" lately so we are back to doing bleach baths and using antibiotic ointment on them. Finally today we are noticing some healing with them. Slowly but surely. It is a little strange to us, because Gunner usually heals (even with an infection) in about 3 or 4 days and it is taking a little longer this time. He is also itching SO bad lately. He will literally rub his raw red feet together because they itch so bad. One of our EB mom friends suggested that we do the bleach bath like normal, then drain the water and do the Aveeno oatmeal bath to soothe his skin because the bleach can really be itchy on his skin. Itchiness is a side effect of EB, but bleach makes it worse. SO since we started using the oatmeal bath after the bleach, it has helped with his feet. He still itches the wounds on his sides and breaks them open repeatedly, but his feet seem to have some relief.

 This blister wrapped around his entire top part of his foot around to the back. I had to lance it in several places to drain because there was so much pressure. Even then, all the fluid didn't come out in one try. It is just too sore and sensitive for Gunner. All that pressure of the fluid and the needle popping it, it just hurts him.
This is the picture after I popped all that Gunner would let me. You can see a little bubble of fluid at the bottom that I wasn't able to get. This was about a week ago, now, this place is really raw, red, and draining.

But, like always, you would never know anything hurt Gunner by looking at him. He is something else, and I am so proud to call him my son. I am so so blessed. :)

Thank you all for reading!

5 comments:

  1. Praise God the insurance came in!!! O that will make things so much better when it comes to getting what he needs.

    He is adorable!! Thank you for sharing the little clip on him playing with his ball. :)

    Praying and praying for him and you. This such a nasty disease. His foot looks so sore and raw, praying it heals quickly and that he will be able to move around a lot with that snazzy looking chair thing. ;P

    Blessings,
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  3. I am praying for you guys and for Gunner and for healing. God bless you. I know God has already blessed you so much. It is amazing to read how positive you are. By Gods grace right? :) I hope very much for a miracle. In Jesus name. And hope does not disappoint.

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