Thursday, May 8, 2008

Is it Friday yet?


Last night took a few more hours of sleep away from us. Abby has been getting up early and last night needed to be rocked back to sleep twice. A typical night between 9 and 7 includes at least three James feedings and a few pump sessions.

James currently requires the full attention of 1 parent at all times. Sometimes he will stay content in the crib for about a half hour before getting cranky. We try not to let him stay cranky because his voice is now gone and he gets figity and causes more blisters. We are going to add gas drops to the medicine list to ease that pain as that accounts for a lot of it. So far the stools are still runny and can explode at any moment.

When Abby is around 1 parent can manage both kids only for very short periods. James requires too much attention and focus which leaves Abby starved and getting into mischief. Since Dad works when Abby is being watched, that really leaves zero time for ourselves. It does take it's toll and we are longing for a break this weekend even if for a few ours out of the house together and a few more hours of sleep.

It seems as if James is still gaining weight but the scale didn't move up the last two mornings. His feedings are as strong, but he has compensated by eating more often. He now coughs an average of twice a feeding and this really wears him out.

His skin is still progressing along with signs on the inside as well. His bottom is the same and it's likely that the rest of the wounds are healing slower now. With that great week he had we were getting more optimistic, but the last 3 days are what we expected. It just seems faster that it progressed with Tony.

James is feeding better, but that may be attributed to higher calorie formula. It wasn't until we were home with Anthony in his 4th or 5th week that he was coughing and this hoarse. Not great news, but that's the way it is with these kids.

We did talk with the nurse educator from Debra (the non-profit EB cure and resource organization). Not much new we didn't already know, but she did mention siblings almost always have the same severity of the disease.

The hardest part right now is seeing our Son suffer and know there is little we can do about it. We pray that if it is not God's will to heal him that his suffering will be minimized. Though we love him so, there is also a selfish part of us that want to be relieved of the resposibility of his care.

We hope James is touching your lives like Tony did for many. As long as he's with us we hope to share him as best we can.

Abby has been enjoying her day care and has been doing some exiting things. She likes the sandbox and playing with her new friend. We measured her today and she grew over an inch the last month. She is so big now compared to James, but most kids make her look petite. She seems to be adapting and just wants some more attention.


Longing for peace for James,

Stu, Tashia, Sprout, Jimbo

2 comments:

Anonymous said...

You guys are in all my thoughts and prayers -- always! Give JG a kiss for me; give Giggles a tickle; and a big hug and kiss to both you and Tashia. I can't be with you in body but I'm with you in spirit.

Love you all bunches!!
Aunt Debs

Jason said...

Praying hard, praying urgently, praying constantly...

Jason