Saturday, June 30, 2012

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!

Tuesday, June 5, 2012

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!