Thursday, May 19, 2011


Driving down the road on the way home tonight, a sweet little voice in my back seat whispered, "I don't want to grow big yet, Mom." I thought for just a second about saying.. " you and me both!" but instead I gave my 'growing older is fun and exciting' speech. You know the one.. think back to an episode of an oldie goldie sitcom like Growing Pains or Full House. I completely get how she wants to just stay where she is..don;t rock the boat. Bless her for those feelings of butterflys! I wish those were the extent of all our worries forever on..

Here are pics from Bella and Sofie's graduation/ end of year programs. Isabella's class award was for being "Most Expressive." This is NO suprise - whereever did that come from?!

Such sweet girls!

Samuel has been pretty sweet himself..even when not feeling so grand. He had a touch-and-go weekend with some transitionary GI pain. We tried to keep things quiet and not disturb the balance. Sunday night he seemed much better and I shot a few cute pics with his dad goofing around. He is making some progress in recent weeks. He even got some peas down the hatch this week in therapy!

Then yesterday, we had just walked in the door and I had a few things to put in the frig so I left Sam in the car seat in the dining room for a minute or so. As I walked back his way, I found him stone grey, eyes bulging and fully rigored in a hypoxic pose. It was back to that adrenaline rush that always makes me sick. I am amazed I don't have a heart attack myself. I start stimulating and rubbing him, pulling him out of the seat and trying to get him to just breathe. It does not get still feels like a rather animal instinct..all I am thinking at that moment is.. please no.. please no.. please no.

Overnight, he was ok but today while I was at Sofie's program, Sam had another of these horrible bradycardia and dsat episodes. His oxygen saturation was down to 30 and then even when she got the O2 on him he hovered in the 70s trying to get him back up to 100. She called me on my cell and said we might need to mobilize for the hospital and I shot out of there in a flash..something in her voice told me she was scared for him. I was so worried about him going into cardiac arrest. Calling 911 is such a hard thing as it is hard to know when to take this step with Sammy if it is going to happen often and he will usually recover. Clearly if your child is doing this and turning blue or grey you would call if you did not know his history.

The adrenaline of these episodes is going to put me in the grave. It just isnt healthy. He went on to have two more today, neither as bad as those first two but accompanying these increases in events, was a new unusual symptom.. skip ahead if you hate my BM talk.. but basically many, many loose pale stooles and an incredibly foul odor. On top of that the GI pain seemed to kick back in. Never fails.. we can't go a week or two without some new issue.

So, we have an appt for him tomorrow and hopefully the rest of his evening is less eventful. On a happy note, Jason came home early to relieve me and I was able to go up to my church to help out at the dinner and attend choir practice. I worried about leaving Jason with Sam after such a bad day, but I needed to get some room to breathe after being such a bundle of nerves all day. It worked.. I felt better as I soaked up some comfort as we sang, "Do Lord.. oh Do Lord.. Oh Do remember me.." It is all going to be ok.

Praying tonight for a friend who is awaiting biopsy results and another friend who is by her brother's side as he was in a horrible car accident and has sustained very serious injuries. God give them all calm and strength to get through each day.

No comments:

Post a Comment