The most WONDERFUL time of the year!

 Hello Strangers!! (Who am I kiddin'? I'M the STRANGER!)

We have been doing so wonderfully during this wonderful time of the year. Since I last posted SO much has happened. We wanted to let you all know that all the money for Gunner's testing HAS been raised. Praise the LORD! The only thing we are waiting on is for all of the money from the fundraisers, etc to start coming in. After, we will make an appointment to get Gunner's blood drawn (I will let you all know when we do that), and then we send it off to GeneDx and wait. They told us that the testing takes 7-8 weeks to get the results back. Since Gunner has a RECESSIVE form of EB, they have to look more in depth at his DNA.( If he had a dominant form, they would know a "hot spot" to target to look for the altered genes.) So that is the first great news!

Thanksgiving was great! We spent time with all sides of our families. We had great food and good times with loved ones. That is what Thanksgiving is all about... RIGHT? :)

As you all know, Gunner's VERY FIRST birthday was on December 14th. We had his birthday party on December 15th at the local community center. They had a spacious room to rent. His party "theme" was jungle animals. A sweet woman named Patsy handmade both Gunner's smash cake and his big birthday cake. We described what we wanted it to look like and she went beyond expectations! It looked and tasted great. Everyone was talking about how good it was!

 The big cake was half white and half chocolate and his smash cake (below) was all white cake. :)

 

 Gunner starting to blow out his candles.

 Daddy had to help Gunner a bit. :)

After Gunner blew out his candles and everyone clapping for him!


Gunner did great with his cake. Cody and I thought that he was going to just rip into his smash cake. We put it in front of him and he didn't know what to do at first. I put his hands in it and he eventually started squishing it in his hands and tasting it a bit. :)

I LOVE this picture ^^^^^^^^^^^^^^^^

He also got so many wonderful gifts. From clothes, to gift cards, to toys, and even a toy shelf to ORGANIZE all these toys! (Everyone knows mommy is thankful and loves to organize :))

Gunner also got an early birthday from his "nene" Shelly, Aunt Paige, Uncle "Day Day", and "Grumpy" (Jeremey).... a blue car that Gunner can ride in and we push him in it. He loves it! Gunner's Grandma and Grandpa Nance, Aunt Katy, and Aunt Mia also got him an "off road" radioflyer wagon that he loves too! We take them both almost everyday and push or pull him around. :)

Also, on the 14th, Gunner's birthday, we got a bog box in the mail from an unknown person. Inside was a butterfly glow stick, a bumble bee pillow pet, a toy semi truck (that he loves), TWO pairs of EB friendly shoes, and a card. The card was so sweet. It wished Gunner a happy 1st birthday and wasn't signed a name, but signed, Love, your EB friends and family. It also said they love reading his mommy's blog and keeping up with him. I was so humbled. It brought me to tears knowing that someone sent all these things to our prince for his 1st birthday. Not wanting any recognition just to say Happy Birthday and he is loved! :) Well, we are recognizing you. THANK YOU!

There is an AMAZING organization called The Butterfly Fund. This is a family run organization that helps children with EB. They held and organized their second annual Secret Stocking Project. People would sponsor a child with Christmas gifts. This program was such a BLESSING to our family and I know many others as well. Gunner got an activity table, a puppy that teaches him his ABC's and 123's, a little lamb that sings a lullaby, leap frog maracas, and a baby einstein music player. He loves it all!

Mommy also got a butterfly tote bag, some make up, a beautiful figurine, and two hand made ornaments. I LOVE the personalized teddy bear one!

Thank you again sweet Butterfly Fund and our secret stocking sponsor!!

I bet you all are wondering... DID GUNNER GET TO GO VISIT SANTA??! Why, yes he DID! There is a local Christmas tree farm by us (the same place that has the pumpkin patch we visit in the fall), and we went there. As daddy and mommy thought, he cried before he even got on Santa's lap. But sometimes, I think those kind of pictures make the cutest Santa pictures! Santa told him that in a couple years, Gunner and Santa would be best buds, and I'm most certainly believing that they will.

Cody, Gunner, and I also went to a church in Tulsa called Rhema. Every Christmas season they put up sooo many lights and have many different displays. In the picture below we were on a bridge and the lights moved with the Christmas songs that were playing. :)

Cody is now working here locally. He is not traveling anymore. Gunner and I are so happy that he is home every night after work and on the weekends. :)

Christmas was great! Christmas Eve, we went with my family to my grandmother's house with all my family and had a big dinner and exchanged gifts with them. Christmas morning we woke up early and went to see what Santa brought Gunner. It took him a while to wake up that morning. It is so cute. When we try to wake him up, we whisper his name and eventually say it louder. The little bugger just gives this little smile and keeps his eyes closed or rolls over haha. No coal for this boy! He was good! Santa brought him an elephant that shoots up colored balls in the air, and a little Cars couch that is just Gunner's size. It also folds out into a "bed" and we use it to lay him down on to watch Barney movies he also got while mommy does dressings in the morning. Gunner also got new Barney and Sesame Street DVD's and a few assorted types of sippy cups. He has so many toys now with his birthday and Christmas being so close together, but we are so thankful and he loves them all!

Gunner is doing great right now. He is actually eating a little rice cereal in his bottle and tolerating it being thick. I am so thankful for that. I know most one year olds are eating normal table foods by now, but Gunner is doing everything at his own pace and we are okay with that. At his one year appointment we found out that he is only in the 9th percentile for weight and the 10th for height. He is also in the 12th for head circumference. His pediatrician wants formula to be his "main" source of nutrition right now until 15 months. Then at his 15 month check up we will see where he is at again. We saw a speech therapist on Christmas Eve, she said because of where he is at in his weight, to stop pushing the baby foods so much, and make mashed potatoes, or puree our own foods added with lots of extra calories and just try to get him to eat those foods with a spoon instead of the baby food. We try daily with the spoon. He will take bites off of it but will not swallow. He will though swallow thick cereal in the bottle now without gagging. We will be having a speech therapist come to our home after the new year and work with him more often. We are really trying hard, because malnourishment is common with EB. Butterfly children's bodies are using the calories they take in for healing instead of growing like in a child without EB. Or there is also the times when a mouth blister or throat blister prevents them from eating from the physical pain and they simply cannot consume enough calories to do either healing or growing. This is why g tubes are so common for EB children. BUT, we are staying positive that we can get Gunner back on track soon and that won't be an issue. If it comes to that we will deal with it, but for now we are working super hard for him! We just love Gunner so much. He is so so smart.. Watching him play with his toys like a big boy makes me smile and breaks my heart all at the same time. Thank you ALL so much for following our sweet boy. We are SO thankful for all of you! Have a Happy New Year!

 The padding you see around his car seat straps was handmade by some students that are studying to become OT and PT's! They made these out of a memory foam mattress and designed them to custom fit to his car seat and strategically placed to not rub his neck or his hips. this is such a blessing to us as well! They were so sweet and did such a great job. They were inspired by Gunner and you can tell they put their heart into this and it wasn't just another school project. Before this we had to put a blanket in between all the straps, which wasn't ideal for Gunner in the summer. It would cause him to be hot and heat makes him sweat and makes his skin even more apt to break down. We are so happy these straps were made for him. Thank you ladies for making these!

 Helping Nene decorate her house for Christmas!

 

Gunner holds his own bottle now!

Quick Update

Hey everyone. Just wanted to give you a quick update. We have an online fundraiser finally going to raise the funds for Gunner's subtype testing. Thank you all ahead of time for stopping by and always thinking of our baby!

You can go to: www.indiegogo.com/GunnerKing

Gunner has been doing great, although I've been feeling a little crummy lately. Gunner's hair is growing like crazy. He is looking even more like his daddy. He is learning to blow raspberries with his mouth and yelling at us to get our attention if he wants something. He is waving bye bye and just about getting the hang of knowing what Hi means too and will wave when he hears that. If you ask him for a kissy, (you gotta say please ;)) he bends his head down for you to kisses little forehead. And he kisses his toys you. Now, if he wants a kiss hell just hold his head down until someone plants a kiss on his forehead. He cuddles with you when he's sleepy. I just love this boy.he is SO ticklish everywhere. We gotta be careful ofcourse but he likes to play rough with his daddy. He copies his daddy and tries to box him lol. He will act like he is chewing on something with his mouth if he sees you eating or chewing gum.

We are working with our PT trying to get him to bear weight on his feet and he is actually doing it for a few seconds. His right foot turns in a bit, we don't know if it is fixed that way or if that is just the position he keeps his foot in because it is comfortable. But he will sit on your knee and bounce up and down pushing against the floor with his feet. He will also sit on your knee and reach for things on the ground or out in front of him and that makes him near weight too. This makes me so happy. I've had two dreams since Gunner has been born of Gunner running around and walking and I'm believing that those dreams will come true. It may be on Gunner's own time but I really believe he will be able to walk on his own. I'm praying so.

Gunner is really showing his personality. Haha he is so stubborn like his daddy. He shakes his head no when he sees me get dressings out, he tells at you when he wants your attention or a toy (even yelled at the top of his lungs in Wal Mart the other day). He's also really trying hard to bend his legs back and move in the floor while he is playing, he will do one leg but not both at the same time. We've got such a strong little guy.
But with him knowing more of what's going on, comes hard things. When he sees me get dressings out he is happy but still shakes his head no at me. But then when we are actually in the dressing chair and I have to get a needle to lance a blister he screams at me before I'm even there with the needle and shakes his head no and tries to hide his hand or he will raise his leg in the air to try and get it away from me. When he has a mouth blister (or lately a lip blister) he tries to suck on his bottle but can't because it hurts and he will look at me crying like, "mom why are you doing that, why can't I just eat?" That look he gives me makes me feel about an inch tall. He looks at me like I am controlling it and I am doing it.. I just wish he could understand.

But for the most part our little prince is doing great. Along with the online fundraiser, our local BBQ restaurant is hosting a benefit dinner for Gunner to help as well. So many people are handing out flyers and letting people know about it so I'm sure we will have a wonderful turnout! Plus, they are letting us set up a donation jar. We have a wonderful community!

For Gunner's first Halloween we went to trunk or treat and got some candy too. He liked it. He was a little bear cub, he had a cute little outfit with claws on the feet and a bear hood but he wouldn't wear the hood he kept yelling everytime we tried to out it on. We also took him to a local pumpkin patch a couple weeks ago and he like that too.

Thank you all for the continued thoughts and prayers for our lil guy. It's so humbling to know that so many people care about Gunner and love him without even meeting him.

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! :)