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!

The HEALING power of God..

Hi everyone, Sorry I didn't post anything last week. I was trying to keep it to a once a week thing to post but I missed a week. When I think about updating the blog, there is so much in my mind that I want to share, but when I sit down to write it's like I can't remember it all. So, if there is something that you have been wondering or are curious about and I haven't shared, please ask away!

We were gifted a wonderful highchair from a sweet family next door to us this week. We put Gunner in it for the first time, and he LOVES it! Gunner likes to be held with us standing up, and this allows him to be somewhat level to us and he likes it. Actually right now we are on the back porch and he is hanging out in his highchair, letting me post the blog. :)

Last Sunday, I went to church and we had a guest speaker. He has came to the church before and I liked him then, but I really listened to him Sunday and I feel like God was speaking to me. I have always been full of faith, always going to church. This may be hard to admit for some Christians, but I will openly admit, EB has really tested my faith. The devil has really been trying to get at me. And I have to admit, for a while I had been unknowingly "letting it in".  Needless to say I really needed to get back into church. But anyway, I went to church on Sunday and the guest speaker was giving all kinds of testimonies about him being around the world and coming across all kinds of people at these healing meetings and God speaking to them through him. (I was thinking in my mind as he said this that I would like him to pray for Gunner.) As he was wrapping up the service, he told about a healing believer's meeting that was going to be held Sunday night. I kept hearing this voice saying "I need to take Gunner to this, I need to take Gunner." So when Cody got off from work I told him I wanted to go and he was all for it.

We got to the church Sunday night, and as we walked in, I just felt that awesome, just overwhelming feeling of God. I hadn't felt that in a long time. We started with praise and worship, I sang and raised my hands and shouted all of God's praise! I couldn't help but smile and just cry with the songs that I was singing. Not to mention Gunner liked all the lights and the band singing too :). The guest speaker came up and he prayed over all of the children that were there. Then he kept saying there are still more children that I need to pray for here! Come forward! Immediately Cody and I walked up to the front with Gunner.We didn't tell him anything about Gunner or EB when we went up there. He looked at Gunner, and just smiled and laughed. He laid his hands on him and prayed. He said in the name of God, this child will never be the same, he prayed for pain relief and a CURE!! A CURE!! How did he know that Gunner's condition needed a cure? How did he know that EB didn't have one yet. I can tell you how, GOD! God told him to pray for the cure for EB. I was amazed and balling and smiling all at the same time. He also laid hands on Cody and I and prayed for us as well.

Church really did me some good. I can just tell that my overall spirit is just lifted and my personality is just like it used to be. I'm not down and sad all the time, I'm not wondering about this or that. I just feel at peace. That is such a wonderful feeling to me.

Gunner is learning SO many new things each day. He is babbling and squealing all the time and developing quite the little personality. I can't believe that in 6 days my baby is going to be 5 months old. I say it every month but I really can't believe it. I often think back to the day Gunner was born and how our lives changed in just a single moment. Because for one, we had become parents, but for another reason, EB. I can say that I have learned more in the last 5 months than I probably have my whole life.

Another thing that we have noticed lately is that as it gets hotter (we have had 90 degree days in Oklahoma already) Gunner's skin has more blisters. His feet have been looking pretty harsh the past couple bandage changes and the back of his head and back of his neck have sores now as well. As it is hotter, we are of course dressing Gunner in cooler clothes, we are getting more and more questions about Gunner. People ask what has happened to him, or they ask if he has eczema or we even got asked this past week if he was born with clubbed feet. Some people just stare, or give me and Cody dirty looks like we have done something to him. I often wonder about the future and am concerned about what things people will say or do when Gunner is older and going to school and able to realize that his skin is just a little different than others. I think that I am going to get some little cards (about the size of a business card) and hand them to people who ask, or even to the people that stare, or smile at us but are still too afraid to come up to us and ask. This of course was not my idea, many of my fellow EB mommies have done this before and they say that it works. They have even come up with a short little catchy poem to explain EB as well.

We still haven't heard anything about seeing a GI doctor, we are still waiting for our dermatologist to find a doctor that will help Gunner with his EB. I believe that they will find one soon. I am really praying so, because Gunner has really good days where he will eat so easily, and then he has other days like today where he is so hungry but just can't eat until a mouth blister pops.

Today, we went and visited the NICU that Gunner was in. We saw so many nurses that helped Gunner and took care of him and taught us so much as well as learning about EB themselves. It really takes someone special to take care of a baby so well with a condition that no one had ever heard of. I guess that is why they call EB "the worst disease you never heard of." BUT, while we were there at the NICU we saw the main nurse in all of Gunner's care.. Lindsey. Sweet Lindsey.

This woman is an angel. Her true love and dedication to her job is just amazing. She was the main nurse in all of Gunner's care. The one that connected us to Stanford while in the hospital, the one with all of the wound care information and just being right there with us through the first bandage changes and all of the emotion and hurt that went along with them. We truly love her! This was the first time that Lindsey got to hold Gunner since we left the hospital Christmas day 2011.

Gunner is such a blessing. Right now we are able to only keep his feet wrapped. We were wrapping his hands all the way up to a little past his elbows. While Gunner does still get blisters on his hands and fingers, I am more worried about his hands developmentally. Don't get me wrong, if his hands are bad at a certain time, we do wrap them. But blisters are going to come and go. It's almost as if we have to choose between no blisters but barely any strength in his arms and hands, or to leave them out so he can touch and grab and feel (he loves to feel daddy's prickly beard) and deal with the blisters. As another EB mother told me recently, with EB we have to throw out the "normal" baby how to book and just go with what we feel best for our son. Everything is trial and error with EB.

I saw an article on Facebook that a fellow EB mother posted as her status. It is about what it is like to have a child born with a disability after you thought the whole pregnancy that your baby was fine. It explains exactly how I felt and feel to this day. Although not everything is how we planed or pictured for when Gunner was going to get here, we have adapted and love our life as it is. I'd like to share the story:

WELCOME TO HOLLAND
by
Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Thank you all for reading!

Wonderful week with family and friends

 This past week has been so busy! I feel like we have been going, going, going every day, but all the running was well worth it. Cody got a new job this week and is now working days. He worked nights for the longest time. I can honestly say that his twelve hour shifts at night went by so much faster and weren't as hard as far as getting errands done, than the twelve hour day shifts. (Probably because I was sleeping).

My dear best friend Kara got married to her husband Larry Saturday! :) I was one of the bridesmaids along with our other best friend Lindsey and Kara's two cousins Shelly and April. We had so much fun and the wedding went so well, and so smoothly, which made for a stress free day for everyone. I was so thrilled.

But back to why our week was so busy! Thursday was Kara and Larry's rehearsal dinner. We brought Gunner and he did so well. Kara has a son named Landon and Lindsey has a daughter named Makaila. Landon was born in August, Makaila in October, and then Gunner in December. SO, needless to say, they will become the best of friends as well! Because Gunner was in the NICU immediately after his birth, it was a while before Landon was able to met Gunner, and, until Thursday night at the rehearsal dinner, Gunner had never met Makaila.

 Makaila was wanting to touch and give Gunner a kiss so bad!

Haha she finally went for it!

Friday, we had a dermatologist appointment. I expressed my concerns about Gunner's mouth, throat, and eating problems lately. He said that the Carafate (the mouth coating medicine that we were prescribed at the EB Clinic in Colorado) should be working, but if it's not, we should have a swallow study done. So, he plans on emailing a pediatric GI doctor locally and see where we need to go to have a consultation with them. We will either go to one in Tulsa, or in Oklahoma City. It will be from there that we get more information on the swallow study and a possibility of needing a g-tube. The dermatologist doesn't think he necessarily needs one right now, but that it might be a need in the near future. That is another reason for the consult with a gastroenterologist.Otherwise, the derm said we are doing really well with Gunner's skin. He is eating a bit better. I say that, but just tonight he started fighting his bottles again. It takes him a good five minutes or longer sometimes to take his bottle. But for the most part he is doing better. After the appointment we went up to my grandma and grandpas house and spent time with them for a bit.

Saturday was wedding day! We woke up early and went to the hair salon, we all got our hair done and fixed then headed to the church and finished last minute decorating.

We all got dressed and the wedding began. It was so beautiful! I was in tears as I watched my best friend walk down the aisle, I looked over and Lindsey was in tears too. It really was a beautiful ceremony. At the reception, I got to see people I haven't seen in a while, some who I haven't seen since Gunner was born. It was refreshing to see those faces and the people that love us as well as Kara and Larry.

Sunday we celebrated my dad's 53rd birthday with a birthday dinner for him. So Gunner and I (Cody was working) went up to my mom and dad's and spent time with them.

We gave Gunner some cereal today. He wasn't too fond of it in the spoon really, not that he couldn't do it, he really just wouldn't open up for it. As soon as he saw the spoon coming for him he started whining, I think that he thought it was his medicine. He starts to whine as soon as he sees me coming with the syringe now with medicine. But Cody put the cereal in his bottle and he drank that right up haha. His pediatrician said that she didn't want all his intake of cereal to be in his bottle because all it does is add calories. So, we will keep trying with the spoon.

Gunner is getting so big and learning so much every single day. He is able to sit with support now. He loves his bumbo seat. He is so alert, loves to play, and loves the outside. If he cries, we just take him to a window and let him look outside, or take him on the front or back porch and he is fine. He looks at the trees, birds, Paige (his aunt) playing out side, or anything moving and he just loves it. I know he's going to love being outside when he gets older. Sometimes I think about the future and wonder what he might and might not be able to do. And every time I ask Cody, "Babe, do you think Gunner will be able to do that?" Cody just reminds me and says, "Babe, Gunner is just like any other baby, and we have to treat him like that. He will probably be the one telling you, "Mom, I'm fine, just let me do it." Cody is right, Gunner is just like any other baby and we have to just keep reminding ourselves to not hold him back with this condition. I love him so much. Today I was by myself driving and just imagining him learning to walk and learning to run, just the simple THOUGHT of that made me tear up. The truth is, nobody but God knows what Gunner will do. But I just have to keep reminding myself that he has a plan, and that no matter what if God leads us to it, He WILL see us through it.

Love,

Welcome

Hello everyone! First of all I would like to thank you for taking the time to even stop by. I never really thought that I would ever want a blog necessarily, but I think this is good for me for many reasons. It will help to get feelings out whether they be happy, sad, angry, or anything in between. This is the story of our butterfly prince. Why a butterfly prince? Because Gunner was born with a rare genetic skin condition called Epidermolysis Bullosa or EB for short. EB children are often called "butterfly children" because their skin is as fragile as a butterflies wing., and we just always call Gunner our little prince. :) I hope that this blog raises awareness with every view it gets. That is my main goal. I pray that everyone that reads my posts and updates about Gunner now has ACCURATE information about what is going on, but if something is heard about him that may seem fishy, you can always refer to this page and get the right information. I have learned so much about myself in these past four months since Gunner has arrived. I have learned to forgive, forget, be my own person, make my own decisions and not let anyone influence me, I have learned physical and mental strength, and I know now that it is okay to have a cry every now and then. Gunner is my whole world and anyone that truly knows me knows that is a fact.


Now for an actual update on Gunner <3
Today was Gunner's four month appointment. He got his shots and they told us that we could possibly start him on cereal, but we are unsure of how and if he will be able to eat solids because of his tongue fusion. He has been very irritable and just uncomfortable today. He is fighting his bottles every single feeding. We think that he may have an esophageal blister. He had one last week and it took what seemed like forever to heal up. We think that another may have developed today from the really bad screaming he did from his shots. Cody and I literally had to hold him down and give him his formula with a 10 ml syringe. He is so wore out today. He is laying in Cody's arms right now kind of taking his bottle. I just hope my little man can sleep good tonight. We love him so very much and cant stand that feeding time is becoming just another uncomfortable thing for him to do every day.

I just want to thank everyone that loves us and supports us in every way for all of your concern today. Hopefully this blog will clear up the issues. We love you all!