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!

Wednesday, September 12, 2012

10 Month Update

Well, the boys turned 10 months on August 21, but I've been a little slow about getting pictures up.  The pictures were taken about a week late, so I guess I'm just late all around!  In terms of updates, the boys haven't both been to the doctor recently, so I don't have numbers for both.  At the neurologist on Monday, Bobby was 22 pounds and 31.5 inches long.  James is lighter and shorter, as usual.  Bobby still has just the one tooth and is perfectly happy crawling around, although he is doing more cruising.  James is sporting five teeth at the moment and desperately wants to walk.  Both boys love to play with just about anything (including kitty toys) and enjoy watching Dinosaur Train, Caillou, Sesame Street, and Daniel Tiger's Neighborhood (a new addition).  They really love anything with music.  Jamesie "sings" along with the radio in the car.  Bobby has been pretty clingy of late; I'm hoping this is a phase that will pass soon!  They both love bath time, and they love to crawl into Peter's and my bathroom and go to the tub.  Bobby then turns the water on (thankfully he can only reach the cold water) and watches it flow.  The past few days he's started turning it off, waiting a bit, and then turning it back on.  Jeremy (one of our cats) often hops up to watch this game; he finds it most entertaining!  James has also randomly bitten my toe twice today, and let me tell you, with both top and bottom teeth, that's extremely painful!

Bobby lounges

Bobby also shows off a lovely toy-induced bruise under his eye

It was very hard to keep them in one place - hence Peter's hand!

Bobby thinks this is all hilarious

But mom, I want to help!

My favorite!

Also pretty darn cute

Jamesie poses

Side-shoulder pose

James cruises around with his pirate ship (excuse Bobby, who is crying in the background because I'm not paying enough attention to him)

Monday, September 10, 2012

Updates of Various Sorts

I see that apparently the last time I posted was August 17....  Way too long ago!  Things have gotten a little crazy around here (so what else is new) - we bought a new bed for our room (king size, finally!), so this spurred me to paint the room before it was delivered.  Between painting, and trying to organize rooms that I've been meaning to work on since we moved in, I haven't had much time for blogging.  I've said it before, but I'm really going to try to post more often!

We met with Bobby's neurologist today and got the results of his bloodwork back.  His genetic tests were normal, and there was only one metabolic level that was a little high.  She said that it was likely because of diet, so we will repeat it this week first thing in the morning, before he eats.  She said there's no way he has whatever issue this is the metabolic marker for - apparently it causes frequent seizures and makes you eat around the clock.  Definitely not Bobby!  After getting those results back, we can check all our ENT and neurologist testing off the list and are left with unexplained central sleep apnea.  This is good, in that it means he may outgrow it (he wouldn't have outgrown a genetic issue, for example), but bad in that there is nothing specific to treat.  Dr. Jones (the neurologist) now wants us to go back to meet with Bobby's pulmonologist/sleep doctor, Dr. Jon, because she didn't feel comfortable making treatment decisions without Dr. Jon's input.  Unfortunately, our appointment with Dr. Jon isn't until November 26.  I'm trying to get it moved up, and if we can't, I'm considering switching him to a sleep specialist in Dr. Jones's practice whom we could see earlier.  We'll see.

Both boys are continuing to be super-duper mobile; James is working very hard on walking.  I think at this point, it's more of a confidence issue than anything else.  He'll take many, many steps holding on to an adult's hands, not putting any weight on the hands, so I think he's almost there.  Bobby isn't working as hard on walking; he seems much more content with crawling/scooting around, although he is doing more cruising around on furniture.  The house is finally completely baby-proofed, so they are just wandering around, and they're very happy with their freedom! James is working on his fifth tooth - three on top and two on the bottom!  Bobby still has just the one tooth poking out.  Bobby started saying "mama" yesterday directed specifically at me, although so far, he's only done it when he's upset!  

James says hi from the big cart at Central Market!

Bobby models a headdress at Ikea

The carts at Costco are perfect for twins - although James is not so sure!
James works on climbing the stairs, spotted by Peter