Thursday, March 21, 2013

I find myself dreaming...

 Of the cure (or even a successful treatment for that matter) for EB more and more everyday. Because, every single day that goes by, EB gets harder. Especially for our Gunner, but also for Cody and I having to watch what EB is doing to our prince. Those of you that are close to us are probably thinking to yourselves, "What? I think Gunner is doing pretty good right now", and your right he is, in most things. His skin I would say is decent right now. The usual worst places are open and draining, and it seems like everything is O.K. But, the thing is, as he is getting older and more aware of what is going on, EB is affecting him emotionally also. It seems that once we get one problem cleared up, here comes a new one.

It is safe to say now, that Gunner's anxiety is through the roof. As you all know, I stay at home with Gunner while Cody works. Which means I am the one that does dressing changes, the baths, the diaper changes, the blister popping with the horrifically large needle. I do everything. To Gunner, I am the one that represents pain and being uncomfortable. I am the one he is constantly watching, seeing what I have in my hand now. No lie, Gunner has gotten to where he starts whimpering (sometimes even tears) when he sees me come to him and pick him up. No mother should ever have to explain to their child that "mommy isn't going to do anything that hurts baby, I just want to hold you" before their child will be calm in their arms. It breaks my heart- no-shatters my heart that he is constantly.... nervous around me. Here is some of the latest wound pics:

His whole foot was a blister here.

The sound of a package opening, the sight of a needle, or the bath tub, or the container of bleach, a diaper, scissors, any dressing product sends Gunner into freak out mode, On top of the daily EB problems, he is teething. Which, don't get me wrong, I am THRILLED about, but it makes blisters on his gums before the teeth come in, and his mouth hurts probably double what a non-EB child would when teething. We have to put orajel on his gum so that it feels better for him and gives some relief, and even the pad of our finger against his gum opens new areas on his mouth. Especially when I don't get my finger in and out fast enough and he jerks his head back and forth. Sometimes the pad of my finger brushes his tongue and he then gets a huge blood blister on his tongue and can't eat, but yet he is hungry.

We have also been seeing Gunner getting frustrated with himself. Besides his EB, he is a "normal" child. He still has the urge, like any 15 month old would, to get into everything, and pick toys himself, and open drawers and such. In order to do those things, Cody and I have to figure out what it is he is wanting. He will whine and whine and Cody and I go through 1001 things (usually we start with EB problems that could be happening, then to diaper, then hungry, then assorted toys) before we actually get to what he is wanting. Thankfully, he now knows what "show mommy/daddy" means. So we ask him to show us, and even still it takes a little bit to know what he is wanting exactly. In the process of waiting on mommy and daddy to figure out what is going on, he will slap himself, or hit one of us, or try to take off some of his bandages, or simply scream and shake his head and fists. He literally looks like a little boy with just... rage built deep inside. Red faced, screaming, hands balled into fists, and shaking. I absolutely hate it. Not because of his actions, just that he is having such a hard time INSIDE too. We have been teaching him to sign words like "more" and "please" and "drink" and "eat" and he is smart and remembers them when prompted, but to just do it to let us know what he wants before becoming frustrated, we are not there yet. But, we are working on it. He still isn't walking yet, but he is somewhat scooting around the floor. He will reach really far for something, then he is so far stretched his bottom and legs scoot up to his arms to then he is moved forward. He doesn't know to scoot for something he wants deliberately though. (Some of that is that he knows someone will eventually get it for him, but when I am with him, I make sure what he wants is within reach and let him get it on his own, then make it a big celebration when he does.) So, he has no mobility yet, and doesn't know exactly how to communicate with us for what he wants, therefore, he is frustrated. Frustration makes him act out in behavior. So it is this vicious cycle.

When I tell people we are doing this for him, or that for him I often get the response, "Well, will he really need that?" "I thought EB was a skin condition?". Yes, EB IS a skin condition, but, it affects people on the inside just as much physically as it does emotionally and we are seeing that first hand. If you read the above, hopefully you understand a little better.

Gunner's kid walk (the assistive chair that is going to help him learn to walk that I posted about a while ago) has finally been approved by Oklahoma Medicaid. It was ordered by the company last Wednesday and we were told it takes 2-3 weeks to make. So we should have it soon! Also, we were seen by an orthotist a week ago today. Gunner's feet turn in all the time towards one another. It is the default position that he keeps them in due to them being wrapped all the time. I have been wrapping the opposite way to pull them out and it has helped some but not much. He is starting to stand and put a little pressure on his feet in his walker. Which is good but his feet most of the time turn in and he ends up putting pressure on the sides of his foot.

The blister that formed from the strap from crocs that we tried on his foot.

So, we thought shoes would help, and they probably would keep them straight while he is standing in his walker and learning how to walk, but we ran into a problem. He needs a size 5 for them to stay on his feet. But a size 5 is too tight around his bandages and there is NO way we can just put his foot into a shoe. Pressure and tightness makes blisters too. SO that is a no go. We move up a size to a 5 and a half, then a 6, and they would work, but his ankle is starting to contract. Meaning his heel chords in his ankle shorten lifting his ankle up. So that his foot doesn't make the 90 degree angle we have and doesn't lay flat. So his foot wont hold in a 5 and a half or a 6. Back to the orthopedist, we explained all this to her. She was extremely helpful. Gunner is getting some splints that have tread on the bottom and look like a boot you would wear after a surgery or something. They just aren't black. They are lined with sheepskin, which is what will touch his bandages, then a foam on top of that, then the Velcro straps to hold the splint on. With the splints and the kid walk, we are praying our lil guy takes off soon and never looks back. Both things should be ready around the same time.

Gunner went on a fishing trip with daddy a couple weekends ago. Not far, just down the road, but he loved it. He loves being outside in general. Loves looking at animals. We have a screen door now that Gunner loves to look out. The pig pen is right in view from the front door. The other day I was looking outside with Gunner and said "Gunner pigs go, (oink oink)" and said it a couple more times. Then I changed it up and asked Gunner what sound a piggy makes. He then made his own piggy noise (sounds more like when you have something in your throat and can't get it out) lol it is so cute. Now, when he sees the pigs, even before I do, he makes his piggy noise. Gunner loves animals so much, we wanted to get him a small dog to play with. Thinking about it, we decided not to. For one, dogs will jump and play rough. If we raised it to be gentle, we would still have to go through the puppy stage and deal with blisters. There is no way to prevent not one blister. I asked the opinion of the EB community on who had dogs, what breed, etc, and a lot of people have dogs. The only thing they said was a continued problem after training them, was that even dogs that barely shed the hair gets under bandages. It sounds crazy, but it gets through all the layers of bandages and then embeds in the skin. When the skin heals, it grows over that dog hair. Which can cause a lot of problems and then parents have to dig out the hair with a needle. I believe it, because at times when I have unwrapped Gunner's arm dressings I find one of his own hairs. Not under the skin just on it, but still. Plus, if a wound was open at the time, and a dog hair embedded on it, that would be totally unsanitary.We could rescue an older dog, but we just really don't have the room right now. We will probably hold off getting a dog until we move. So, we decided to get him a hamster. Yes, a hamster. It is small, requires little care for right now, and Gunner can look at it and play without actually holding it. We bought it a big cage, with all these tubes and things to run in and a running wheel. We also got it a ball that it runs around the house in. Gunner loves that. He is gentle with it now, but at first he didn't know what to think. He likes bouncing balls and thought that the hamsters exercise ball was one he could play with and he threw it across the living room. The hamster, (or "squishy" as we named him) is still alive and kickin.

Gunner making the "piggy sound".

Sleeeeeeepy Gunner

Gunner and daddy playing games together at the Wal-Mart gameroom. Cody is actually the one that asked me if I had money for any games haha.

Gunner and daddy at Incredible Pizza. We went with Papa Bill and Grandma Kari and Uncle Wyatt and Kolton. He had fun on the horse.

Gunner eating a cookie. He is finally trying more things. But only things we eat. He gets excited about seeing food or drink and wants what we have. He will not eat baby food though. I have even tried making my own and he just does not like it. But he eats mashed potatoes and gravy really well. Anything we have I chop up real fine and he will take 4-5 bites of it. For him that is really good. Things like a cracker or cookie or cheeto, he sucks on rather than bites down on it. He doesn't know to mash the food so he sucks until it is soggy and then swallows. It works for us now. We go back to see the pediatrician on the 25th to check Gunner's growth. Last time at his 12 month well child appointment, he was in the 9th percentile. His ped wanted him on formula as his main nutrition until 15 months then we would recheck. I'm hoping the ped is happy with his growth. But at the same time, he doesn't eat enough now to sustain his weight only with solids let alone gain any weight. That is why we are going to see a speech therapist again. We have a home appointment with the new ST next Tuesday, and I am hoping she can give us some new ways to help Gunner. He has really developed a fear of things going into his mouth. He also like I said doesn't know to mash his food. His tongue being fused to the bottom of his mouth doesn't allow him to form a bolus (the ball of food you make with your tongue before you swallow.) to eat. He is also getting teeth now (his first two teeth are through the gum at 15 months, yay!) but all and I mean ALL his teeth are coming in at once. His first two teeth were his two side teeth on top. Now, his jaw teeth on top are the closest to coming in next. Plus there are 3-4 more bumps on top that I can feel under the gum and 4-5 on bottom that I can feel right under the gums. Plus his mouth is always very open and sore and with blisters so his teeth on top of all that is making him cranky pants lately. Who wouldn't be?

I have also started watching my best friend's son, Landon during the week. He is 4 months older than Gunner. Gunner and Landon both are adjusting well. Needless to say I have been busier, but I love it and am so happy that Kara has trusted me to watch the lil guy. :)

Yesterday in the mail, we received a package from a sweet EB mother. She found online some all natural mentholated rub and got some for Gunner and sent a scentsy buddy (a monkey). The scentsy buddy was part of a fundraiser for EB babies a while back and we are so thankful for everyone that participated! The mentholated rub is needed because it is a natural way that other EB families have found to relieve itching instead of putting their child on medication. It doesn't work for every family of course. At first, we tried regular OTC mentholated rub, and Gunner had a reaction to it. SO far with this natural version we have had no reactions and it seems to have relieved the itch. Praise God! Itching is very common in EB. Wounds that are healing (sometimes even raw ones) itch very intensely. It makes the person wake up at night even to itch sometimes not actually "waking up" and scratching through bandages down to the skin. Only to wake up and have another open wound and no bandages on anymore. So controlling the itching is very important. Thank you SooAnn!

Until next time,