Summer 2010

We decided to make a mini vacation out of our appt to Tampa to have a new ENT consult. My mother's neighbor works at Bush Gardens & he gave us 4 tickets to go. It was wonderful. I am always so scared to take Caleb anywhere, but it turned out ok bc it wasn't too busy. We had lots of areas where we could uncover Caleb & let him enjoy it too. It had started to rain a bit so we went to see the Elmo show until it stopped. The Sesame Street characters blew us kisses & came & loved on Caleb. Caleb LOVED it. Devin had so much fun riding the rides & just spending some time being a kid. We got drenched on the Congo..we laughed so hard...Devin was jumping around...he was so happy...we needed family time. We all took turns watching Caleb. On saturday we went to the beach along the causeway. The regular beach is too far from the hospital. Caleb didn't enjoy that much bc of the wind. Eventhough he was covered up in his playpen, he didn't enjoy it much. Devin got to play in the water for a bit but then we bribed him with dinner on the water so we could leave. He is such a wonderful boy. The people at the restaurant were so accomodating. I told them I needed to have a spot somewhat away from the crowd. They made it happen. Everything worked out perfectly..It was a fabulous weekend. We made a lot of special memories & I loved being there with my mom. GOD IS GREAT...ALWAYS.

Daddy's gonna get you

Caleb's getting cleaned up & ready for the night. Daddy loves playing with him. Caleb's new thing is rocking back & forth shaking his head. He will look out of the corner of his eye to see if you are coming :)

Getting a massage

Caleb is getting his relaxing massage before bedtime. We are working on his heightened sensory issues...he's doing pretty well. He is still really sensitive but he is getting more use to different touches.

Being fitted for my new wheelchair/stroller

Such a BIG day! Our DME from Gainesville came to fit Caleb for his new Otto Bock-Kimba Stroller and adaptive seating. I cannot believe we are doing this! I never thought that this day would ever come. He is getting so big, he's even starting to get his big boy face :) Having this new stroller/seating will allow him to be more social with others and for him to see the world from a whole new perspective. It will be great for him to sit and watch his brothers play, for him to do his playtime and therapies. I can't wait to get it. Hopefully there won't be any insurance hiccups! With God anything is possible....

Sweet sixteen birthday!

Happy sweet 16, Caleb!! These toys use to belong to a beautiful little girl, Brianna. Her mommy wanted to share them with Caleb and gave them to him a while ago. He is finally able to enjoy them..he smiles & laughs at them....another milestone. God is so good...always.

Caleb & Daddy Being Silly

Nothing like the love of a child to make a grown man act like a big kid. Daddy was just making noises when he noticed Caleb laughing at one of the them. Don't know why it made him laugh but it was hysterical. Caleb fully interacts with us. He is such a happy baby. Never in our wildest dreams did we think we would be sharing moments like this. God has shown us once again his miracles in life. THANK HEAVEN FOR DADDIES!!

FOLLOW UP: I got the whole story...daddy was playing Battleship with our other son Devin. Devin sunk daddies ship..so of course daddy being the big kid that he is had to make the sound of the ship going down! Caleb thought that was hillarious!

After Starting Lasix

Just got back from Cardiology appointment. All I can say is THANK YOU GOD!! Caleb's liver has shrunk back down. The left side of his heart is no longer enlarged & the right side has started to shrink a bit. His pulmonary hypertension is slightly lower. The words came out of the dr's mouth "he may be a candidate for heart surgery". I about fell to the floor. The look on the dr's face was priceless, never seen him so happy. We are still not there yet. We need to know why Caleb is still needing o2 & what is going on with his obstructions. Last thing we want is for him to be stuck on a ventilator. I am thrilled beyond words. And the Doctor continues to be amazed...all in GOD'S HANDS

We have to watch to make sure his lungs are not getting damaged from the blood that is accumulating in them. There is a balance with the heart doing well and the lungs may not be. We will have to make decisions on surgery if things start to change. We always pray for guidance.