Friday, September 28, 2012

Updates on Bobby and General Life

Life has been a little crazy around here.  I had to have a colonoscopy and endoscopy on Monday, so I had to spend the weekend prepping for that (disgusting, not fun, thank you very much) and then spent Monday recovering and not getting nearly as much sleep as I planned on.  In the meantime, I seem to have caught a nasty virus, and I feel like I was run over by a truck.  I would seriously like to curl up in bed and sleep for the next, I don't know, two weeks?  To top it all off, we (along with our best friends Steffie and Ross) are taking the boys on their first vacation, to Seaside, Florida.  We'll be staying in Peter's mom's house (so no dealing with hotels, thankfully), but this will be the boys' first flight.  It's only an hour and a half, so I'm hoping it's survivable for all.  What I'm really worried about is the nights.  We've been having major trouble getting James to sleep.  I'll get him to fall asleep, put him down in his bed, and he immediately wakes up and starts screaming (and I mean *screaming*).  The only solution seems to be to let him play himself out until he'll take a bottle and pass out in Peter's arms, anywhere between 9 pm (not such a big deal) and 11 (rather a bigger deal).  He will then frequently have a bad dream, because he's overtired, and wake up screaming a few hours later.  I fear Ross and Steffie will get absolutely no sleep.  I also worry about getting the boys to go down (and stay down) for naps.  I figure at worst, we can put them in the car and someone will drive them around for an hour or two.  Of course, then that person doesn't get a nap, which is the sucky part for them.  Yes, I said sucky.  I'm tired, okay?

In the meantime, we met with a new sleep specialist for Bobby last week.  His neurologist wanted him to be seen for treatment immediately, once she had ruled out any brain or genetic issues, and his previous specialist couldn't see him until November 26.  Not exactly helpful.  So we met with Dr. Susarla, a sleep specialist in the neurologist's practice.  I cannot say enough good things about him!  We had to wait for about 45 minutes to see him (not super cool, but survivable), but once we saw him, I liked him so much.  He agreed that Bobby definitely needed to be treated immediately - he said that because he's getting so little sleep, there is really no way to know how much he's being affected developmentally.  Even if he hasn't been affected yet, it will be harder and harder for him to process the world and develop new skills running on so little sleep.  He prescribed a BPAP machine.  He will start the fitting process for this next week, before we leave.  Dr. Susarla said it can be a very long process; because Bobby is only 11 months old, he may really hate having it on his face.  He says we'll get him used to it by putting it on for short periods during the day while he plays, watches cartoons, or does other normal things - not at night, since he's already scared of going to sleep.  If that doesn't work, they have a behavioral/occupational therapy clinic that they use for kids such as those with Down's Syndrome (who apparently have major issues with anything touching their faces) that we can use for Bobby, and he's confident that in the end, we'll have a happy, sleeping baby.  I'm so relieved!  I know it's going to be a long road to get him comfortable with the machine, but I'm so grateful to have a treatment and an end in sight.  I just want my baby boy to be happy, healthy, and well-rested.  

11-month update will follow soon (they turned 11 months a week ago, and I still haven't gotten pictures taken!), but in the meantime, here's some general cuteness!

 Bobby models his new sunglasses for the beach

James plays in a baby-sized Poang chair at IKEA
Bobby munches on a string bean at the grocery store - we now call these "bobber beans", as James hates them!

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