What we learned..

Cody, Gunner, and I left for Colorado this last Tuesday, the 2nd, to see the EB specialists at the Children's hospital there in Aurora. We have to make this trip every six months. We learned quite a bit more this time, mainly because Gunner is getting bigger and we are running into some more difficult areas than when he was so little the last time we went in April.

Colorado is a ten and a half hour drive from us. Thankfully we were blessed with being able to stay at the Ronald McDonald House there in Aurora again. That is truly such a wonderful charity. They are so nice and work hard to get you a room when you need it. They have a Ronald McDonald out in front of their doors. We decided to make it a little "tradition" to take a picture by Ronald every time we go, since we go there so often and just see how Gunner grows.

 

We saw a dentist this time. Gunner doesn't have any teeth yet, so there wasn't a WHOLE lot that we could talk about, but she did tell us that children with genetic disorders are often times delayed in cutting teeth (which Cody and I didn't know) and that we can still brush Gunner's teeth with a SOFT bristle brush but not vigorously brush back and forth. She also said that patients she sees with EB often elect to have their back teeth taken out. With EB comes scar tissue, and over time as a child gets older, scar tissue from sores on the outside and inside of the opening of their mouths narrows their mouth opening and it gets hard and painful for them to open their mouths wide enough to reach their back teeth to properly clean them and keep them cavity free. But, as long as we try hard to keep them clean from the get go, we will be able to put off that problem as long as possible. We will see the dental team from here on out and maybe by next time we go in April, Gunner will have some teeth to show off.

We then made our way over to the EB clinic in the dermatology department and met with all the same doctors that we saw last time. They were all so happy and impressed with how Gunner is gaining weight and on the growth chart. We saw the pediatric dermatologists, the wound care nurses, the regular pediatricians, physical therapy, occupational therapy, the nutritionists and more. They are all so nice and understanding. Gunner has one room that we stay in and everyone rotates through to us so that we don't have to keep moving Gunner in and out of every room.

They asked how Gunner was overall, and overall yes, Gunner IS good. But we did bring up our concerns that we still have with feeding. They too were also concerned. They are contacting Gunner's pediatrician and asking him to contact doctors in eith Tulsa or Oklahoma City that are part of a feeding specialty team and we are going to have, in their words "a complete feeding study" done to rule out strictures, aspiration, and just watch his muscles as he swallows to make sure everything is working correctly. That will calm my worries and also help the specialists in CO to tell us what to do as far as the next step in Gunner's feeding problems. I keep thinking there is something going on only because he is interested in trying things, will take it off the spoon or your finger, but cannot push his food back to his throat to swallow. The food he puts in his mouth literally stays in his mouth until it eventually travels back to his throat, and then he gags and gags until it goes down. We are praying we can see the feeding team soon and they will be able to give us more info.

We also were told to start putting eye ointment (like an eye lubricant) in Gunner's eyes at night to keep them moist and prevent eye blisters. Yes, Gunner gets blisters in the whites of his eye, and could also get corneal abrasions (he has not had one yet). Blisters and skin breakdown occur anywhere there is mucous membranes and connective tissue. They also prescribed an antibiotic ointment for his eyes in the case that he does get an infection with an eye blister.

They also lowered the dose of Gunner's pain medication. The dose we had was too strong for him. This way since it is lowered, we can give it before bandages if we need to, and not be afraid of the dose.

They looked at Gunner's wounds. The healed ones and the open/draining ones. They said that they looked "good" (as good as an EB wound could be) and that we were taking good care of him and his skin. Gunner's toes are still fused together. We asked about toe release surgery, but they won't do it until he gets older, and even if they do, there is a good chance it will just come back and fuse again. So really, we just have to see if the benefits out weigh the risk of the surgery and anesthesia that would come with it. Gunner was really upset when they were doing his dressing change. (The wound care nurses do it at the clinic.). He is developing really strong stranger anxiety, as well as a little attitude haha. It was a mix of being mad, being in a strange place doing dressings, have strange people other than mommy or daddy doing dressings, and pain from a big blister they had to pop, but he was so mad. They had to order some medicine from the pharmacy to give to him. I hate dressing changes like that. Gunner gets this look in his eye like, "Mommy, stop them" and I feel so bad. But thankfully the nurses up there know what they are doing and know that air touching his wounds hurt so they did one limb at a time and hurried as fast as they could.

Other than his feet, Gunner's mouth is the second worst part of his body affected in my opinion. There are days where he has such a huge blister or an open sore that he will push his bottle away and start whining when he sees his bottle. It will hurt so bad to eat that he goes so long without eating and we end up having to get a 10 ml syringe and force something down him. He will be so cranky because he is so hungry, but it is so painful to eat. So, the doctors prescribed Gunner what they call "magic mouthwash". It is one part Kaopectate, one part Xylocaine, and one part Benadryl. We will take a toothette, (looks like a q-tip with a little sponge at the top) and dab it in Gunner's mouth where the problem areas are, then wait a minute or two and let him eat. It will coat the sore or blister and the xylocaine will have a numbing effect. Other EB moms told me it only give a five to ten minute relief, but at least it will get him to start a bottle and get SOMETHING in his tummy. We cannot pop the blisters in his mouth like we do on the outside of his skin. It is just too dangerous to go into his mouth with a huge 18 gauge needle. Gunner is also starting to itch. It is doing damage to his skin from his constant scratching and picking at his wounds. You may think "I thought Gunner didn't have fingernails, so how can it do damage?" Well, he has one nail on his right hand, but even with the rubbing of the tips of his fingers back and forth on his wounds, his skin is so fragile that just that motion and no nail scratching will rip his skin back open which prolongs healing and makes itching and pain worse. :(

Next time we go to the clinic they are planning on doing blood work on Gunner. Anemia is common in patients with EB. So we know that they will be checking for that. I have also recently learned from an EB mom that those with RDEB are more prone to kidney and heart problems, so they check to see that those levels are OK, as well as vitamin D and zinc levels. So we will get those checked as well.

We are also working right now on a way to get Gunner mobile. He can sit up on his own now really well, but he will not come out of sitting on his own. He wants to move and do things on his own so bad. Our PT is working with us now to come up with a way for him to work on this process without causing too much friction. Tomorrow we have a PT appointment and she is bringing with her PT students from a local university to meet Gunner. They have an assignment to come up with an adaptive "tool", and asked our PT is she had any children that would be a good candidate for their project and she recommended Gunner! So they will meet Gunner tomorrow and get their ideas of what they want to "build" for him and get their project going! Gunner's right leg kind of bows a bit, as well as his leg turning in. His right hip is also kind of tight and he cries when we try and bend that leg at the knee. We brought it to the attention of the doctors at Colorado, and they said that sometimes it happens before children bear weight and start walking. They said that even though it is strange that his left leg is straight as well as his left foot and his right foot and leg are bowed and turned in, they won't consider it a concern until he either starts walking and it stays like that or he is two and it hasn't fixed yet.

Gunner did really well on the ride to and from Colorado. We have fuzzy car seat strap covers for his neck and we stopped often to let him stretch and change his diaper and everything.

Cody's uncle got married on September 29th. Cody was a groomsmen so he got dressed up and all snazzy for it. This is probably the only time I will get to see Cody dressed up haha. Otherwise, it's jeans, boots, and an old tee shirt. Gunner and I dressed up too, so it was a great time for family pictures by the beautiful gardens they got married in. Gunner's grandma Shelly took these pics.

      

 

I absolutely LOVE this picture!

Gunner is working really hard at holding his own bottle! Every now and then he will get stubborn and not want to. But most of the time he does and it is a big help to me. He will feed himself while I cut bandages and it saves time and Gunner's patience haha.

 

Last Friday our local news on 6 did a story about Gunner for EB awareness. EB awareness week is October 25th-31st, 2012. So to do our part for awareness we contacted the news station and they came out and were very interested in learning about Gunner and EB. You can see the video and read the story here.

THANK YOU NEWS ON 6!!!!!

 

I have been debating on this for a while, about posting pics of Gunner's wounds. A lot of my fellow EB parents out there post pics of their wounds/their child's wounds and I never thought I could. But to REALLY get the true sight of how HORRIBLE EB is, and how REAL and PAINFUL it is for Gunner and all the others affected by it, I think that maybe I should. On Facebook, many of my EB family have gotten their accounts banned, or frozen for a little while, or their pics taken down because someone has complained, but this is real, and more importantly it is our REAL LIFE. How can I raise awareness if I am not showing people what is happening to my baby day in and day out? I mean, yes I tell them that Gunner's skin blisters, then we lance it, then it's an open raw nasty area that looks and hurts like a second degree burn, but if they SEE it, I really think that will impact them more.. Some may agree with me, and some may disagree, but it's EB, it hurts my baby, and I want awareness out there so that we can find the cure and maybe this pain will end for Gunner and all the others affected.

We are also trying to get a donations account set up for Gunner and more fundraisers going on to raise awareness most importantly and to raise funds for our traveling to and from Colorado every six months and for any extra bandages we may have to purchase towards the end of the month. There will soon be a "donate" tab on our blog. Thank you all for your interest, support, and prayers for our little Gunner. He truly is the light to my world. Such a smart little firecracker! I really believe that he will be the type of kid that doesn't let anything get in the way. I can just hear him now asking me to go play this, or go do that and I will be nervous and he will tell me "Mom, I am going to get blisters whether I go play or whether I sit inside the house." And I know I will give in. I just love him so much. Can't wait to see what our little guy is going to give us in the future.

 

On our way back to the RMH after our day of doctors. He was WORE out. This is his almost asleep face.

 

Feeding ducks with daddy at the lake by our house.

Happy boy looking at pictures of baby deer that his Grandpa Bill (Cody's dad) gave him.

 

 

Love,

6