Wednesday, March 7, 2012

It's Been TOO Long

Sorry it has been so long you have heard from us. Carson has had a lot going on in the past year. I am going to try to keep up with this blog more often. In the past year or so Carson has gotten a g-tube placed, and we had another baby, named Charlie. Charlie is almost three months old and does not have EB. Carson has been doing great with his g-tube ( feeding tube). He uses a pump at night to get most of his nutrition. He stills eats during the day, but only a few bites at each meal. He has actually come to love his feeding tube at night and so has mommy. A ton of stress is lifted from me knowing that he is getting what he needs to help him strive. He has gained about 5 lbs since July when it was placed. Woohoo! Dr.'s were very pleased with this progress. Tomorrow we go to Cincinnati Children's hospital for his esophagus dilatation (stretch) so he can be more comfortable. He is anxious and so is mommy, but prayer should take care of that. I am also concerned with changing his pain medication for afterwards. It seems in the past he always gets sick (stomach upset) and dry heaves for 24 hours after surgery. I am thinking that his reaction to the med is what makes this happen, so I am in hopes that changing the med will take care of your prayer intentions please ask Him to guide the Dr's in dealing with this. I really hate watching my Carson get sick afterwards when we just had his esophagus worked on and more agravation to it, can't be good.

Carson is a really good brother, he is always lovin on Charlie. He has his moments of jealousy, but it has really subsided some in the last couple of weeks, yeah! I will get a pic up as soon as I can for you to see the two of them together. Thanks for following us, till next time and I promise it will be sooner than later! Thanks for your prayers!

Friday, June 4, 2010

Having Fun...Enough Said!

Well, we have been enjoying our days. Today Carson is having an extremely good day and seems to be enjoying life...Praise the Lord. I wanted to attach some photes of the most recent fun we have been having: Enjoy! Putt Putt, Butterfly show, playschool and playing of course!

Sunday, May 16, 2010

Every Day is a Mile Stone

Carson is doing wonderfully after his second esophogus dilitation which was last Thursday. He is still on his steroids which makes for interesting days...but I am so glad it is over and we are doing well. His chest is healing better with just zinc oxide ointment these days and he is enjoying bath times. Yes, you read this right, he is actually enjoying playing in the tub these days. It makes me so happy to see him enjoying himself like a normal kiddo in the tub. We have been praying to St. Gianna, which Carson seems to take a liking to...I think she is to blame for this healing power over him. Thanks God for St. Gianna!
Recently, Carson has been obsessed with riding in his "coup" the old fashioned red and yellow coup car. He is in absolute heaven over it and loving every moment he can spend time in it. So I took so pictures of him at his grandma's house riding it so i can remember this prescius time. I have a feeling it is going to feel like it is " here today, gone tomorrow". Where is the time going? My little boy is getting so big and I miss my baby Carson, but am so thankful to the Lord he is doing so very well today! Every day is a milestone for him.

Friday, April 23, 2010

A rainy Friday in April

I sit here today full of tears as I read a fellow EB Bloggers site about the struggles of loosing a child. She waits patiently to get to Heaven to be with their child, while she lives a life with another EB son. I will keep them in my prayers.

Everyday I struggle with EB and worry and worry and worry and worry. I pray daily to God to help Carson and give me wisdom, and to give us a miracle. But for some reason, I feel this tug on my heart that says, "It is more than you'll ever know-let Me lead." Well, somedays (most days...who am i kidding) I feel like I need something else to fix Carson, something more, a cure!!!! The stresses of EB is unbelievable! Today I just feel helpless. We are scheduling test, for the month of May and the stress build up is already here.....blah. I know go pray about it, I'm on my way right now...hopefully tomorrow will be a better day.

Friday, February 26, 2010

First Official Day of Playschool at Our House

Our first day at playschool went great and Carson fit in with the boys perfectly. I love those little guys...and their mommies!

Saturday, February 20, 2010

Saturday Blah

After an exciting night of shopping for Scentsy products at our house, Carson woke up this morning with an eye abrasion. BUMMER!!! I was hoping we could get out today due to being couped up in the house for the last four days of winter snow. Oh well, maybe tomorrow will be better. He is really a trooper though...playing with Daddy with his eyes shut and trying to make the most of his discomfort. Till next time...I'm out.

Thursday, February 18, 2010


We just got back from the dentist. Carson did a spectacular job!!! YEAH! The dentist said, "I've never been able to clean EB patients his age that well before. He really did a fabulous job and is such a big boy". Carson is such a trooper and even though he was scared...he toughed it out and let her do what she needed to do....thats my boy! I am again a very proud mommy today!