I'm ONE!

The party started Saturday, and we're still partying today! And just in time for his birthday, he learned how to pull himself up to standing on furniture! Big guy!

We have really enjoyed this summer. It's been nice to just go outside and sit on the grass, go to the splash pad, or just hang out inside.

I bought Micah his first pair of "big boy" PJ's.. I think they'll have to wait at least another month or so!

Hard to believe...

It's hard to believe we get a 3 month break from Cincinnati. What a nice, nice thing. Then, if all goes well, we'll get another 3 month break before his big surgery. For some reason, we're both finding peace in doing it in February, despite it being cold and flu season. As Travis and I pondered yesterday, the next big surgery is going to kick off what's likely to be a very busy medical year, so we'll take the break while we can get it.

Micah had a busy day yesterday, and is so pooped today it's not funny. He only took two half hour naps yesterday, then slept almost 11 hours straight overnight. Needless to say his diaper didn't contain his "abilities" (as Heathcliff Huxtable would say). I can't say I minded him sleeping that long!

So, about 9:30 this morning, I heard fire trucks going down the road (which isn't too common where we live). Looked out at the corner by our house, and saw a handful of them sitting out there. Went out and, whoa! Gas leak! It was bad enough that I packed Micah up and left. Nothing like a road trip!

He was in a swallowy mood!

He did great on his swallow study! They gave him liquids by mouth for the first time, and he did just fine! We were so surprised! He is really careful with what they give him, which is perfect for him! The doctor said he is really protecting his airway, which is so refreshing after hearing for so many months that he wasn't protecting his airway at all!

He is really slow getting the food swallowed, it's almost methodical how he moves the food around and swallows just a little bit at a time!

So we're cleared to give him liquid by the baby spoonful! He's probably not ready for a sippy cup yet, but we'll take whatever we can get! Hooray!

Off to his Video Swallow Study... let's hope he's in a swallowy mood! *crosses fingers*
Then we're off!

A year ago today...

A year ago today I was admitted to the University Hospital here in Cincinnati with Micah. At the time he still had 8 weeks to his due date, and the doctors were darn sure they didn't want him coming anytime soon. They drugged me up with every medicine they could find, only to figure out he was basically saying "psych"! Even though they kept me for 17 days, it wasn't too bad. The doctors wondered (out loud, multiple times) why I wasn't all that upset... I still don't know! I guess I was convinced that the Doctors knew what they were doing, and that Micah would be okay. Anyways, it's been a looooong year... with many more complications than they really anticipated (or at least they told us about) but Micah's here, and he's doing pretty well. Kind of fitting though that a year later, we're here again.

Lets see, we were here
Aug 2-Oct. 30th
in December
January
March
April (twice)
June
and now, August.

But the good news is, if all goes well, we don't have to be back till November! Three months!

Meh.

Haha, mom, it's passey muir valve.

Either way, we didn't get one. Darn.

They want to schedule his surgery for sometime in the next 3-12 months. At our convienence, whatever that means! I hate that! Dr. changed his mind, probably not going to do the whole surgeryat once. Too long. Looking at booking the OR for 4-5 hours. (As opposed to 7-8 hours). It looks like we'll be down here for a week and a half, give or take. It seems like the doctor would prefer to do it in 3-6 month time span.

First we have to get his nutrition in order, which has been quite the task. One of the other docs we see was really frustrated with his feeding situation (hooray!) and is going to talk to his GI surgeon about adding some medication to help with his GI motility (how he moves things out of his tummy). Luckily everyone is on board with not switching to type of tube where he has to be on continuous feeds all the time. Ew. No one wants that.

Speaking of continuous feedings, I forgot to pack an extra feeding pump bag. I've never forgotten ANYTHING (short of dish soap) on a trip to Cincy. Of course, the bag we had broke.. or the pump is broke, hard to say (I think it's the bag). Either way, I don't think I can get one from the hospital since it's after hours. I'm going to try to pull every other string i know. He gets fed continuously at night for 10 hours, and it would really stink to do that manually, but it's my fault for being a numbskull.

Numbskull, numbskull, numbskull. Meh.

Grandma's Boy!

Micah having it his way! Whats new! Celebrating with Grandpa for his birthday.

Looks so big sitting up in the high chair.

Please pray for his video swallow study on Wednesday. Hopefully, he will be cleared to have liquids. They will be checking his mass on Tuesday. We are praying that it shows some improvement from last month. They are looking foward to him getting a Passive Mural Valve to help his vocalize. But his airway needs to come back to center for this to happen.

His eating has gotten a little better, only throwing up once or twice a day now.

I am sure Britt will be posting more after they see the Doctors.

Brenda