Monday, April 23, 2012

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.


Monday, April 16, 2012


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!