Happy Memorial day, too many pictures and an update...

Thank you to all those out there who have and still are fighting for our freedom.

We are all enjoying an extra day at home and just relaxing.

Carson has been well lately. We have seen a few extra seizures with this last full moon, but seem to be back to normal now. Last week we had several tests run on his blood to check all kinds of things. We were mainly worried about his extra water retention, edema. Carson had gained another pound in 2 weeks and seemed to be more puffy. Checking his blood was able to tell us if he needed a diuretic (to make him pee more) or to add more protein (sometimes if the body doesn't have enough protein the water does not move like it should). While we were taking some blood we decided to run all the tests we could. CBC, BMP, Chem 7, liver and kidney function. So any way, to our surprise all his tests came back normal! His bilirubin was a little low, but nothing to be concerned with right now. No meds are needed for his extra fluid, to help get rid of it we are going to do more movement and massaging. We are so happy to hear this great news!!

Just me and my dad.
These kids wear me out!
But I love them.

Cool dinosaur, thanks for sharing with me.

Matthew helping brush my teeth.
Look how big I am!
Me and my new shoes.
I am catching up to my mom.
So cute.
These are my new Crocs...
Look out, they may bite!
Wow, look at these rolls.
Big yawn.
Hair cut with Aunt Jen.
First time using the buzzer, no too sure of this.
But all is good when all said and done.
I was telling Aunt Jen all about it.

Me and my cousins.
Yea, that is the spot.

Happy Memorial Day

Thank you to all those out there who have and still are fighting for our freedom.

We are all enjoying an extra day at home and just relaxing.

Carson has been well lately. We have seen a few extra seizures with this last full moon, but seem to be back to normal now. Last week we had several tests run on his blood to check all kinds of things. We were mainly worried about his extra water retention, edema. Carson had gained another pound in 2 weeks and seemed to be more puffy. Checking his blood was able to tell us if he needed a diuretic (to make him pee more) or to add more protein (sometimes if the body doesn't have enough protein the water does not move like it should). While we were taking some blood we decided to run all the tests we could. CBC, BMP, Chem 7, liver and kidney function. So any way, to our surprise all his tests came back normal! His bilirubin was a little low, but nothing to be concerned with right now. No meds are needed for his extra fluid, to help get rid of it we are going to do more movement and massaging. We are so happy to hear this great news!!

More ups and downs continue...

The ups and downs have been continuing for Carson and us. The first 4 weeks of April were very rough, he had a hard time getting used to the increased Phenobarbital. He slept pretty much all of those 4 weeks, he had a few hours a day when he was awake. The last week of April Carson was awake the majority of the days, alert and talkative. It was great to play with him! Carson's body temp has been staying pretty close to the 97 mark, our new normal.(very different from last year, when he would get hot very easily) Carson has also had two episodes of very low bradycardia (heart rate). One episode was in the middle of April, his heart rate went to 38 beats per minute, yes 38. This was a very scary moment, but as soon as he was aroused his heart rate came right back up. The second episode was last Saturday (May 1), it dropped to 48 and again as soon as we aroused him, it came back up. All we can attribute this to is he disease and body weakness (due to inactivity and meds), his heart beat has gotten weaker and runs normally in the 80's. To give you a point of reference, a typical boy child his age runs 125 beats per minute. We are still living a day at a time, and loving every minute we have.

OK, OK, take a deep breath....on a lighter note here is a funny story that happened to me over the weekend.

I was doing my usual grocery shopping at a local grocery store. As I was waiting in line, the woman in front of me was paying, the checker being a young boy bent down to wipe/pick his nose with a little piece of paper towel (clearly too small for the job). I was waiting for what a 'normal' person would do, use hand sanitizer! But he did not, all I could think about was that he was then going to touch all my groceries...oh no he was not. I quickly go the sanitizer out of my purse and asked, "Did you use some hand sanitizer (waving mine in the air) after what you just did (gesturing picking my nose)?" The pore boy got all embarrassed and flustered, he had no sanitizer at his check out station, he had the ask the next checker for some. All the while, the sacker, clearly a friend, trying to contain his laughter! I then went on to say that I had a fragile boy at home and I do not need to take any more germs home than I needed. So moral of the story, where have your grocery checkers hands been before they touch all your groceries?

Have a great day and keep us in your prayers...keep looking at the bright side, Carson was sent to us for a reason and has been our blessing!