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

PRETTY TEETH FOR THE "C" MAN

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!

Monday, February 15, 2010

Valentines Day and Heart Shaped Pancakes






Above were some of my favorite pics of February so far.

The month of February has been treating us pretty well. We've only had issues with a chest wound. Carson loves to bother this wound in his bed while sleeping (atleast this is what I think). I have changed the ointment that we are using on it to help clean it up. Vinager and water squares everyday also helps the wound that is infected. He doesn't like it very much, actually he is petrified when he sees the water bucket...but a moms gotta do what a moms gotta do. I can't image what it is going to be like when he is bigger than me and I have to hold him down for these types of things. Oh well...time will tell.

This past week Southwest Local School District came out to get paper work transitioned over since Carson will be three soon ( In 1 1/2 months...scary). Anyways they shared what I thought was very good news. They are going to make sure he gets all technology support he needs to strive at home. I was pumped to hear that. I guess sometimes there is good things that come out of EB. Also a preK teacher will be coming out to our house once a week for an hour. I am also excited about that being I am a teacher and all. I see it as a great opportunity to "team teach" Carson.

I have also instigated by email a group of moms who have little boys around the same age as Carson. We are going to start a structured "play date" time once a week. I will use some of the homeschool material I have already been doing for Carson with them as well. It should be good for all involved. The moms need to get out and the kiddos need the social time too. I should be able to post some pics from these times too to remember all the fun we are going to have.

The snow in February so far is rediculous. We are having a snow day again today. We already have about 8 inches of snow on the ground from last weeks snow storm, but now we are going to get another 6-8 inches by the end of today. The one good thing from this is Carson and I get to be with Daddy more since he doesn't go into work on these snowy days. Instead Dave works in the basement and comes up to visit with us during "potty breaks, lunch, nap, and dinner".

We've started planning for our third annual Walk for Eb this month. I am started to get excited about this now that Carson is older and I can get more involved. It feels good to have a purpose for something and have such strong connection to research that will affect our lives. I thank God for all those Doctor's who are working so hard for my son. I have so much faith that a cure or something that will help Carson's daily living will come about.