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!









1 comment:

  1. Hi Emily,
    Great pictures!! Thanks for sharing them. :)

    How wonderful you can do the bandage changes all on your own. That is a big job. It is a great feeling, knowing we can care for our children. You are so blessed with such a beautiful baby and a wonderful husband and support group; family.

    Praying for you often.

    Blessings,
    <><

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