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,

Gunner has been doing...

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

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

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

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

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

 This blister wrapped around his entire top part of his foot around to the back. I had to lance it in several places to drain because there was so much pressure. Even then, all the fluid didn't come out in one try. It is just too sore and sensitive for Gunner. All that pressure of the fluid and the needle popping it, it just hurts him.

This is the picture after I popped all that Gunner would let me. You can see a little bubble of fluid at the bottom that I wasn't able to get. This was about a week ago, now, this place is really raw, red, and draining.

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

Thank you all for reading!

It's late evening on a Sunday...

 Cody and Gunner are both in bed. My poor husband has been so sleepy lately, and Gunner always goes to bed around this time. So, that means quiet time for mommy to catch up on the blog and eat some milk and cookies. :) Gunner is doing pretty good, both of his big toes are open and draining, but thankfully are starting to clear up. Both of his sides are open and sensitive, and he has open wounds under both armpits and a circular wound on his chest. His nose is also still giving him problems. We found out that it is from him rubbing his eyes when he is tired or cranky. Now, both sides of his nose and across the bridge of his nose are looking pretty rough, but actually are starting to heal. His mouth has been a problem this week as well. He had a HUGE blood blister that didn't let him eat normally for a day and a half. Here is what it looked like, the thing coming out of his mouth is the tip of the blister. It went all the way to the back of his mouth inside.

 But, as always, he is my little warrior.
Mommy got creative about a week ago with Gunner's hair. It is getting long enough now that it stands up and wont lay down right sometimes. So, the other day, it stuck up on its own like a mowhawk. Mommy has gel and hair spray of course, so I put gel in it to make it stay. :)

We have been blessed this past week. We got approved for SSI for Gunner! This will help with the extra expenses monthly to help care for our little guy. :) We are having a small problem with insurance though right now. I am working on getting it worked out, but we could use some prayers that everything gets fixed quickly! Thank you!
Cody is doing well too. He loves his job here locally and it is great for mommy and Gunner for daddy to be home every evening and on the weekends.
The other day, we got a package from The Butterfly Fund. Not for any certain reason, it was a "just because" package. It had in it some really soft shirts and a onsie from a company called Kicky Pants. Their clothes are so EB friendly. They are REALLY soft and made from bamboo. :) Also they are pretty breathable, which is good because too much heat and pressure of tight clothing can make the blisters and skin slough off. Oh, how we love The Butterfly Fund!

 

We have been working with Gunner to do some sign language. He now can sign "more" and "please". He is so so smart.
It seems like at least everyday, I learn something new about EB. Whether it be little or big, everyday I learn something, and it is almost always from a fellow EB parent or an adult with EB. I learned today, that people with EB have sensory overload with their skin. A lot of times I have noticed that Gunner will whine or arch his back and act like touching a certain part of him hurts, even when their is no blister there. For example, Gunner had his back break down really bad back in July/August of last year. Now, it is healed for the most part but still has the milia (white bumps) and scar tissue where that wound once was. I will be changing his clothes and I will rub aquaphor on his back (to keep it lubricated) and he will cry like something happened or a wound is there. I will check for any new blisters or wounds, and nothing will be there. Well, one of my fellow EB moms asked this question, and got responses that EB skin gets sensory overload. :( I will now be more aware of what areas he acts like this in.
I am so very thankful to our EB family. Yes, doctors help us, but in all honesty I have gotten SO much of my knowledge of EB from my EB adults and parents! It is scary/frustrating/exhausting and makes me want to cry when you go to a doctor and they do not know what to tell you to help your child, or what they tell you to do you already know that it won't work because they do not know about your child's disease. But I find comfort in knowing that I can cry, let out my frustrations, then go to my EB family and vent and re ask the question and get a better idea of what to do. God sure has blessed us.

Finally, I want to close this post with some GREAT news!!!

Gunner's blood work is sent off to the company that is doing his subtype testing GeneDX!!! Gunner did get scared when they drew his blood. He started crying before we even got back to the lab. We go to the doctor and see specialists so much, that immediately now when he sees someone in scrubs he automatically cries. BUT, good news is, we came out with no open skin or blisters from the blood draw!! GeneDX called earlier this week to let us know everything looked good, and that the lab has started working on his blood and we should expect results mid to late March. It takes so long because since Gunner has a recessive form of EB, they do not know what specific areas of his DNA to start looking at for the altered genes. We are so thrilled! Thank you to each and every one of you that have supported Gunner and to continue to support him! We are so very thankful to each and every one of you!

                                                                                   Photo Courtesy: Christie Zink

Our smart little Prince..

 Gunner has been learning so many new things lately! I thought that I would make a post about how smart our little prince is.

Gunner can "say" or what we call saying some new things. It's mostly sounds, but we know what he means. He can "say"

"Nuh Uh"    For no..
"Uh Huh"    For yes..
"Huh?"       When we say something to him and he wasn't paying attention..
"Dada" or "Daddddddyyyyyyyy" or "Dadadadadadadada"   for when he wants Cody..
"Mamamamamama" or "Momma" for when he wants me or my attention..
"Yeah Yeah Yeah Yeah Yeah"   for yes...
He will say "Nana" for my mom or for Cody's nana
He will say "Nene" for Cody's mom
There is a local commercial that plays for a local lawyer and at the end of their commercial it is the lawfirms phone number and they sing it. Gunner likes any singing and any music. The commercial goes, "call 7-2-8 8-8-8-8-" So Gunner will say "eight eight eight eight eight eight eight" over and over. He also will say it if he hears it while we are watching Sesame Street or if he hears someone say eight for whatever reason.
He is also making "E" noises and "A" noises
He is even starting to stand for a few seconds longer than he used to be able to. With both feet flat on the ground. (His feet turn in a certain direction because of constantly having to be wrapped up.)

Gunner also will reach for things that he wants now. He holds his own bottle as I have mentioned before. Anytime he hears music, he will dance to it, whether we are at home or he is in his carseat, he will dance. Gunner is also becoming quite the little ornery thing. He will try and sneak in a hit or two to your face if he doesn't want you doing something. Also, when I am changing his diaper or doing dressings or laying him down for a nap, he will kick his legs down really hard and growl at you if he doesn't want you doing something or if he doesn't want to do it.

Dressings are becoming more challenging since Gunner is getting older. He likes to grab the already cut and sanitary dressings and put them in his mouth, or throw them on the ground so I can't use them. He will also do that thing where he kicks his legs down really hard when I put him in his dressing chair. This is really nerve wracking for me because if his feet hit anything besides the soft blanket I put underneath him (whether it hits hard or soft) it will make a blister or slough off his skin. Needless to say, he is becoming a handful with dressings, but he is my little handful and I wouldn't trade him for anything. <3

Yesterday, I went to get Gunner up for the day and got him out of his crib and he had a spot on the left side of his nose. We don't keep any toys or stuffed animals in the crib, and we have the crib borders up to keep the railings from getting his skin while he is sleeping. But, when Gunner sleeps, he ends up sideways in his crib by morning. Just the slow transition of how he lays while he sleeps just peeled his skin back.

We went to the park the other day and got some really sweet pictures of Gunner. We are planning on going again this afternoon, it is supposed to be in the high sixties today! That's Oklahoma weather for ya! Gunner and I love having Cody home every evening with him working locally. Even though he doesn't make as much money, it still outweighs him being gone all of the time and being home in case (God forbid) Gunner had to be hospitalized again, or just to be there with me when Gunner has appts and such.

I'm sure many of you all made a New Year's Resolution, well, mine is to be more positive and more helpful (and the oh so famous eating healthy and getting fit). I am trying to reach out more to EB familes and being nice and having a smile on my face even to strangers. The end of 2011, our prince was born, I honestly would say it took be most if not all of 2012 to soak EB in, realize to let go and let God. He is the one that WILL heal EB. On the perfect day, in the perfect hour. Until the cure is here, this is our life. I want to be more positive, because Gunner will get his view of how to handle his EB from Cody and I. If we are not always looking at the postitive, how will we expect Gunner to?

Thank you all for reading! God Bless!

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!