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Tuesday, April 12, 2011

5 weeks old

Joey is already 5 weeks old today!    Time has gone by so fast!  We are still here taking it day by day.  Joey is still very colicky at times:(  Screaming for hours on end.  Mostly during the middle of the night which makes sleep for us difficult.  A 2 or 3 hour stretch of sleep is a treat around here.  His hands have also been bothering him.  We hadn't been wrapping them since they haven't been too bad but then they either get too dry and crack and bleed even when we apply Aquaphor or lotion.  We have tired gloves and the ones that allow the skin to breath, he pulls off within minutes.  We have other silky ones that are really soft and have a way to secure them to his wrists (gently) don't allow the skin to breath nor do they offer much protection.  Last night we wrapped his hands with what we use on the rest of his body and they were really well protected and he slept so much better!  He wasn't hurting himself when his hands rubbed against his face like they did before.  But this morning his hands were really stinky from being wrapped up in a moist environment.  So I unwrapped them and its now 3pm and he is JUST taking this first quality nap of the day:(  Before he kept hitting his face with his hands or hitting things around him (or me).  Hopefully we can come up with a better solution tonight. If anyone has any suggestion, I am all ears:)

Everything else is going ok.  Trying to get into a routine during the day.  I go back to work in 3 weeks and i'd like that transition to go smoothly if possible.  Right now our biggest worry is dressing changes.  We currently do them after Joe get's home from work, except when i go back to work I normally leave right when he gets home.  It will be just two night a week but Joey required daily dressing changes otherwise his wounds become infected.  And its just too hard to do alone at this point.  It wasn't until Sami was 4-5 months old I was able to change her dressings by myself during the day but that was without other kids to care for.  If anyone wants to help out sometime with dressing changes please let me know:)  Or if anyone wants to share on how they manage that when both parents work outside the home, we are open to suggestions.    Me NOT going back to work is NOT an option and getting a home health care nurse isn't an option right now either.

 The girls are adjusting well to having a new baby in the house.  His EB doesn't bother them as much as does the "normal" baby stuff...i.e. crying and changing A LOT of diapers. 

My lupus related arthritis is flaring up again....the lack of sleep isn't helping either.  Right now I am still physically able to move and care for the kids, but I worry about the day that I might not be able too.   

Here are some pictures from the past weekend

can no long be refer to as 'the girls'

A Butterfly, Hello kitty and  a Ninja Turtle

1 comment:

  1. Don't know if this would work for an EB baby, but thought you might like to take a look at it. It would keep him from hitting his face, and maybe his hands wouldn't need to be wrapped too much.

    jenlar3 (mostly a lurker, but I pray!)