"Whether we are filled with joy or grief, our angels are close to us, speaking to our hearts of God's love."

Saturday, September 18, 2010

???

Does anyone know what day it is??? We've been home for awhile now and Benjamin seems to have his days and nights in check, but the rest of us don't!

He looks perfect, but in all honesty it's been hard to treat him like a normal little baby because of his neurological issues. A few days before we left the hospital we had a meeting with Benjamin's neuro team so we could have a better understanding of the new meds he's on and his condition in general. We were told that they are 100% sure he has cerebral palsy (although they can't officially diagnose him until he's 2) and they feel the type he has is spastic quadraplegia which, of course, is the most severe because all limbs are affected. We thought we had heard the worst, but this was just devastating. Every time we have to administer meds or set his feeding pump, we're constantly reminded of the struggles he's going to face.

As far as what we've been doing since he came home... we administer 8 different meds (17 total doses) between the hours of 6am and 9pm. He has to feed every 3 hours and we're doing almost exactly what they were doing in the hospital. He can nurse up to 2 times a day. Sometimes he does well, other times not so much. During the other feeds, we offer him a bottle and then what he doesn't take runs through the g-tube. If he's sleeping, we put everything through the g-tube.

He loves to be held and is getting spoiled rotten because the minute he cries, one of us runs right over to him and scoops him up because we still live in fear he's going to desat! He is sleeping in our room for probably the next few months and for a majority of the time we've slept with the light on because it was the only way I could tell he was breathing (my eyes would play tricks on me if the light was off). He does make some really strange noises in his sleep, like grunting sounds... if any of his night nurses are reading this... is this what he normally did?

We did make it outside for a walk today and I think he really enjoyed the fresh air! Hopefully the weather will stay like this for awhile so we can venture around the block a few more times.

He still has his fussy moments, but we get lots of smiles. Jadyn loves to make Benjamin smile and is an awesome big sister. I guess she's been talking about him quite a bit at school because all her friends and teachers knew he was coming home this week. She hasn't been able to go out much since he's been home, but she seems to understand and accept the fact that this is how it's going to be for awhile!

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