This post..

 This post has been hard for me to make.. I've been trying to make it for a day or so. I told you all last time I would be posting pictures of Gunner's wounds and keeping you updated that way, another way to raise awareness and to share OUR reality. When it comes to looking through the pictures of now what was almost a year ago, it gets to me. His feet just looked so bad. It brings me back to the pain that he was in, hearing that distinct cry that he made in the NICU when we would have to literally peel away his old bandages taking his skin with us. Now, I can tell his "pain cry" between his "cranky cry."

Sharing these photos is a big deal for Cody and I. In the beginning, Cody and I only wanted certain people to be in the "dressing room", and didn't want people to accidentally open up a photo on our computer that had a picture of Gunner's feet or a wound on his body. It is something that was (and still is) so private to us. It is like opening people up into a private part of our lives that we have kept between a chosen amount of people for so long now. But, what has made us decide to share with you all is to raise awareness. To post these nasty wound pictures to show Gunner's reality. Today, Gunner's ankle was really raw, we then easily peeled back the old bandage on it and it took even more with it and his ankle just started bleeding. He is developing anxiety (I believe) with his baths now. He cries when I lay him in the living room floor to start to unwrap his bandages. I do it here because it is where we have the most room, we also do diaper changes here and pop blisters and do maintenance bandages here too. He knows SOMETHING will be done to him that hurts when we lay him down and he automatically starts crying. He cries the minute we walk into the bathroom, before we put him in the water (because the initial dip into the water stings his wounds, which is why we put pool salt in his baths.) He is fine in the water, but he won't lift his leg out of the water anymore because going from in the water to out, the air stings his wounds as well. He also starts crying when he sees me lay out his towel. He knows I'm about to get him out, and as soon as I grab hold of his leg to lift him he is in a full blown cry. It breaks my heart, baths were the ONLY thing that he had peace with. But now, it is just another reason for him to be scared.

I DO want to raise awareness. So this is why I am going to share some pictures. Today I also tried to set up a facebook page for Gunner. I got all the way to adding pictures. I know I didn't HAVE to add wound pictures to that, but wanted to, and I just couldn't bring myself to do it. Maybe I will set up a facebook page for Gunner soon, but I just can't do it now. I AM however, going to set up a paypal account so that I can add the "donate" tab I was talking about to this blog. Also, we are working on a local benefit dinner with our local "Rib Crib" restaurant and will be posting the date very soon. This will raise A LOT of awareness and we are looking forward to it!

                                                               Gunner sitting on daddy's shoulders at the Tulsa State Fair

************** I haven't taken many "new" pictures of Gunner's wounds, and from the ones that I am about to show, his feet look A LOT better from at birth. Remember, this is REALITY of EB. This is what my son has to go through everyday, and has been since day 1. This is why we need awareness and why we need a CURE. No child or adult should EVER have to deal with the constant pain from EB.*****************

The very first time we changed bandages with Gunner at only hours old. His little feet were saw raw from the "trauma" of childbirth. We were using totally different dressings than we do now, and wrapping in a totally different way. We learn something new about EB and his wounds, how to wrap, and to wrap with what every single day. We have come a long way in his wound care since December of 2011, which is why his feet aren't as raw. But then again, when this was happening, we were JUST learning about EB, right along with the doctors and nurses. Literally before we did our first dressing change, our nurses and Cody and I watched a video on youtube of an EB mom showing what supplies to use and how to wrap. Talk about scary, what if you brought your child to doctors who you trust and look to have all the answers to what is wrong with your child, and they didn't know what to do or what to tell you? How would you feel? THAT is why we need to raise AWARENESS!

Now, remember these were back in December of last year. Gunner's feet look so much better compared to this. It is hard to look about yes, but imagine how bad it is to feel this everyday, to see your child in pain because of this, and there is nothing you can do to soothe them or make it better but to just cover it back up with a dressing so that it isn't hitting air anymore.

That is all that I will post for now. But that is what we were dealing with from the get go. I will start taking daily pics of Gunner's wounds and posting some with every post. If I lose some "followers" or readers from my blog because of posting wound pictures, then so be it. But this is what EB is.

On a happier note, Gunner is doing good today. Besides the traumatic dressing change today, he is being his normal self, playing with daddy in the floor.

Thank you all for your constant prayers and thoughts for our family. They are really truly appreciated. To donate to funding for research for EB please go to www.irefuseeb.org.

Love,

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

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
RDEB-inversa
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 www.debra.org and www.ebnurse.org. 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.

Where to Begin..

Hey everyone, hope that everyone is doing well. It's been a long while since I last updated. Our little guy is just growing right before our eyes. He is truly a blessing from God. He will be 8 months old on the 14th of August.

He has such a happy and wonderful personality. He is oficially saying "mama" and making all kinds of faces and noises, playing with new toys, and sitting up for a little while on his own. He isn't crawling or getting on all fours yet, but we work on that daily. His physical therapist is just awesome.

A couple days ago we had a feeding specialist come out to our house and she watched Gunner eat the first stages of baby food and his formula in all different ways (through a bottle, a spoon, a syringe) and she said that something is definitely going on in her opinion with the swallowing of his baby food. His tongue is fused to the bottom of his mouth so he chokes and gags food down. Gunner doesn't have a problem eating with a bottle and I mentioned that, but she said that the nipple on a bottle is so long that it puts it in the back of his throat and all he has to do is swallow, he doesnt have to lift his tongue to push it back then swallow. So, she said that there would definitely be a need for a swallow study to be done to see what exactly is happening when he swallows and HOW he swallows, which brings me to the next thing...

We went to the Children's Hospital in Oklahoma City last week and saw a ped GI. He was very knowledgable about EB which was refreshing to us. (Not many doctors know or understand EB, we often have to explain to them and they get suggestions from us). He ordered a swallow study to be done, he said that he didnt feel like it wasn't as urgent as he thought since he is still getting great nutrition from formula, but wanted to get it done soon. He is going to call the Children's Hospital in Colorado that we go to every 6 months (EB specialists are there) and see if he could have them do it up there when we go. I am waiting to hear word on when and where they are going to do it. I am thankful that they are finally going to find something out.

Cody is working right now in Minnesota, this job is about 6 weeks, he said yesterday that they are confident that they will get done sooner. I'm ready for him to be home. Gunner misses him badly as do I. We need a family vacationg bad. Just to get away from everything. We will probably go somewhere close when he gets back. Just us three. Gunner and I are even considering going with Cody on the next job if it is short and in a cooler state. :) That would make us all three happy.

I recently had to quit my job, Gunner had an infection that was getting pretty serious. The company was so amazing and understanding! I can go back if/whenever I am able to. I liked to work, but my baby needs me more. And I will do anything and everything to protect him.

Last week I got a tattoo to raise EB awareness EVERYWHERE I go. I got it on my left wrist so that it can be seen and people will ask me about it. :) I love it. It says "For my Son, For the Cure"

He is looking more and more like Cody everyday. I love him and Gunner to the moon and back. They are my life. Cody and I are thinking about finally getting married soon. I am so ready, and BLESSED. (In caps because I am screaming at the top of the hills that I am BLESSED) BLESSED to be marrying my best friend, the father of my son, someone who loves me at my worst and my best.

Recently there have been many wildfires across Oklahoma. Many have lost their homes and everything along with it. My grandma and grandpa thankfully have a home still, but they are without electric as powerlines and poles have fallen down and burned. While the electric companies are fixing this problem, they are staying with me and Gunner. Gunner and I enjoy it as do they.

Thank you everyone for reading! Until next time! :)

Just an update..

Hope everyone is doing good! We are always so so busy that it is hard for me to update often. Our little prince is 6 months old and doing so many new things. Rolling over, holding things, making sounds and the cutest smiles. He is really developing quite the personality! And we love it. He really is the greatest baby. We are truly blessed.

I've reached a big milestone lately, I have FINALLY gotten to where I can do dressings on my own. That's right, just mom! This makes me so so happy. Not that help isnt wanted or appreciated, or that past help isn't thought of. But to me, not being able to do EVERY single thing for my sons care really got to me.. But I can do it now! It takes me a while and Gunner is becoming quite the wiggle worm but we do it. :) He has also gotten to where he will grab the dressings and wrappings as my hand is going around him, makes me smile seeing that.

Recently Gunner has had yet another infection. We have gotten it under control now he is healing and on oral antibiotics, but he is doing a lot better.
We have finally gotten the referral for the GI doctor! Just waiting on a call from the GI office to schedule our first appointment. Also, the PT Kim, that works with Gunner is in the process of having a feeding evaluator come out she is awesome! He is still not eating baby food, we have tried everything my fellow EB parents and friends have suggested and nothing is working, so hopefully we find more info out soon.

We made our next appointment to go to the Colorado Children's Hospital EB Clinic on October 3rd. We will be adding a dental appointment this time so we are excited to go.

Cody had his very first Father's Day this year! He was gone working in Louisiana. He is working with his papa now welding and working in tanks traveling wherever they send them. But we did send daddy a video. Gunner was so excited to see his daddy when he got home!

My job is going well, it is still hard leaving him but he is doing well with my mom watching him.

I feel like lately I have really been sad about how Gunner has to go through all this, but then I think, there are other parents out there that have unfortunately lost their children to this horrible disease, how selfish am I when I have my child right here with me everyday? And they are the people that I know that have such strong faith, and are so optimistic and positive. It opened my eyes to think in that perspective. I feel like I have been such a negative person and have such a negative outlook on life since EB has affected our baby, and it's time to come out of this slump. To start thinking positive, to lose this weight that I have added on from this slump, and to just be strong and happy and set the best example for my boy so that he can be strong and confident as he grows. I don't want him to be sad and insecure, I want him to be happy and love his life. And I know that he will, but that will come as Cody and I build him up.

This is a subject that Cody really helps me in, he is so straight to the point and positive, and where I am weak, he is strong for me. He made me realize that I'm hurting and being negative towards the ones closest to me. And I don't want that at all. I take this as a time to be a new me. A strong me. An advocate like no one has ever seen. My son relies on Cody and I, and it is my mission for him to look up to me and follow my example about being strong and accepting EB. Not to let EB have him, but for HIM to have a hold on EB.

Thank you for all of the strong EB moms, dads, family members, and those with EB themselves. Just so you know, your positive outlook and strong faith have really inspired me. Thank you and love you all! :) <3 til next time!

Busy busy bees!

 Hey everybody! It has been a while since I have posted, sorry to keep all of you waiting! I as well as Cody and Gunner have been so so busy with so many things it seems. Now that I've come to a slow down point, I can share what we have been doing. As I've said before, we have so so many people in our lives that love and care about our son soooo deeply! Whether they be family, friends, or complete strangers. Grandma Shelly and Grumpy (Grandpa Jeremy) have spent the last few months working on building us a little place for us. They love Gunner so much and would go to any lengths for him. Spending so much time and money and sweat building this for us and we are so very thankful! It is finished and we moved in a couple of weeks ago. We are back to having our own little space. While it's nice to have our own little family space, we all still miss seeing our family all the time! Although we make sure to see them everyday. We still have dinners and just go to visit a lot too. Ha ha.

It really is amazing the people that God sends us to cross our path everyday. My grandmother, Gunner's great grandma Brown has a hairdresser that is just the sweetest her name is Lisa.  My grandmother has been telling her about Gunner since he was born and she owns ponies and sets up and different events doing pony rides. She contacted me and asked if she could do a benefit pony ride for Gunner! It was so so sweet and she did that a couple weeks ago for us, it went very well. We opened up an account for Gunner for expenses to and from Colorado to the Children's Hospital every six weeks, or other necessary expenses that might come up. Lisa and her family are a true true blessing, she even wants to do another event in the fall. My grandma and grandpa both went out to the Pony Rides and helped.

I have finally went back to work and am working with my license. I LOVE my job, but at the same time it is so hard to be away from Gunner. I'm sure every mom feels/felt this way when they leave their babies to go back to work for the first time, but for me it is more. (Not that every other mom's feelings aren't important), but it just breaks my heart. I come home and see a new blister or red spot on Gunner and I automatically think, "How am I going to work?" My mother (Gunner's grandma Nance) is watching him during the day while I work. She comes to our house so we don't have to tote Gunner back and forth.

We STILL haven't got a referral to see a GI doctor. Meanwhile, we have been persistent with Gunner trying to feed him baby food. Grandma Shelly bought Gunner a bottle that is specially made for babies to learn to eat baby food. It takes away from having to learn to eat from a spoon and eat a new texture of food at once. He will suck the bottle a couple times then start crying. He leaves the food in his mouth until it goes to the back of his throat and he chokes it down. At first I was thinking that it was just the new food/texture/tastes, but now I am starting to wonder if it is EB related. Not sure what it might be, but I am concerned. Whether it is a sweet tasting food, or a regular food. He acts the same way. Now, anytime we come at him with anything to go into his mouth (even his formula bottle) he is piercing his lips real real tight and wont open up until we can get a little drop of something in his mouth and he realizes what it is.

On the other hand, Gunner is doing so many new things, "talking" up a storm, starting to put his fingers in his mouth (making more mouth and lip sores), trying to roll over, and grunting and making faces! I think he is starting to teeth too. He is chewing on his fingers, kind of irritable, and drooling. His gums are looking tight and white in spots too. He is so attentive to everyone and everything. He knows who everyone is, and is starting to have attachments. He LOVES his daddy.

As I've said before, the heat and humidity in Oklahoma is really getting to Gunner's skin, BUT Mrs. Christie Zink (a loving, caring, sweet, most amazing EB advocate) gave us an inflatable swim toy for Gunner that has a canopy to block the sun! It is very EB friendly. We got it in the mail and put Gunner in it in the pool. The pool water is great for his skin. They tell us to add pool salt to Gunner's bath water also and we have started doing that too. To our surprise, Gunner actually loved the pool, and stayed in about 30 minutes!

He was just relaxin! Today was a special day for me. For six months now, every dressing change, I don't do much but try to keep Gunner calm. Cody and I can do dressings on our own, but all I do is hold his foot. Even though I am a nurse, it just really kills me to think of doing dressings and doing something to my child that I inflict pain doing. But it is something that has to be done for my little baby. I do random changes every once in a while, if something gets dirty from his diapers or something but never a bandage change down to his skin, let alone BY MYSELF. Well, today I did it! I'm so so so so proud of myself! I really needed this. Now, (we always technically could if we HAD to) but now I can do dressings whenever, wherever. I just needed this push I guess. I feel confident about it now. I have never felt a worse feeling, than needing help taking care of my son. I know that this is a different circumstance, but it still crushed me. But no more! Great day for me! :) God is GOOD.

Love to you all and God bless!