A case of the giggles to rival Anderson Cooper :)

 

We got a new app for our Nook Color (thank you grandma and grandpa for the birthday gift card!) We've been wanting to get a few things to occupy him when baby sister comes.  Needless to say, this one was a winner (it's "Monkey Lunchbox Preschool").  Unfortunately, the funniest thing that happens is when you get something wrong... So, not a lot of learning going on :)  Cute app though, and very age appropriate.  This morning it wasn't nearly as funny, but still entertaining, so i'm glad i got the video when i did!  if you need a laugh, you've come to the right place!

And if you don't get the Anderson Cooper reference, here it is... i've watched it probably ten times, and laugh every.single.time! 

Anderson giggle fest 

Baby sister seems to be doing fine and planning on hanging in there til Thursday.  We're about as ready as we're going to get, i suppose... Things aren't coming together perfectly smoothly, but oh well.  As i told someone yesterday.. things have been crazy and unpredictable for the last 3 years, why stop now?  

We SOOOO appreciate all the prayers and joy w/ this baby... We didn't get a "fun, easy" pregnancy last time, and we're having such a good time around this time.  A couple in our church have been especially funny, as they have two little ones and  know exactly what's coming!  :)  We also are so grateful for all the yummy food that's showed up on our doorstep over the last few days... Our fridge and freezer are full... Such a blessing!  

Silly boy.

Well, apparently Micah has decided whenever he needs a step stool, he can go get moms big pot out of the drawer, turn it upside down, and voila, a step stool.

He's nothing if not resourceful! :)

You know you have a tubie when...

Here's a little snippet of my life as mom to a tube fed kid. One facebook group asked the question...
"You know you're a mom to a tube feeder when..."
- when Caleb was looking at a toy store at a GI doll. My mind went gastrointestinal and it took me a minute to realise it wasn't a doctor doll, but a soldier.
-You see a cute outfit for your baby, and wish it had buttons instead of a zipper.Any one piece outfits that have feet in them, that were given to you.... have a tiny whole cut in the foot/leg.
- When your holding your child and all of a sudden you feel something warm...you think he/she pee'd through their diaper when come to find out its stomach bile coming out of the med port that never stays closed without being taped!
-When you celebrate and praise your child for putting food up to his mouth. (not that he took a bite, but he tried!)
- Who are a mother of a tubie when your child starts screaming and instead of pulling out a teddy bear as a lovely you give him a syringe and he is quiet


Hope you enjoyed.

Oh, so silly.

We're at the Ronald McDonald House now! It's good to be here, but we're still wishing we were home. Micah is enjoying the playroom and all the toys.

When you spend some time here, you realize how good you have it. I was talking to another mom from New Jersey. She had one week to pack herself and one of her twin one year old girls and relocate to Cincinnati... for the next YEAR. Another mom has been here since before Micah was born. I don't think anyone realizes how many families have to completely uproot their life to take care of their childs medical needs. Crazy.

On a lighter note, Micah was having fun playing peek a boo last night at the hospital. For some reason it's not posting... let me work on that. Consider it anticipation.

Meet the Trach Fairy..

This is the trach fairy. The sign says "When a person no longer needs a trach, the trach fairy takes it and gives it to someone who needs one. This year B5CA (floor) and the trach fairy have collected..." And this sign says 6, but now it says 7! Happy decan to the little guy down the hall!

And someone, please let Ronald know next time it's going to snow. He might want to dress warmer.

Here's Micah making (hopefully) his last visit to the playroom. We have to go through the main concourse so we like to try to keep the germs away. He doesn't even really mind the masks!

Well, ENT just came by and took out the stitches from his incision and hooked up his drain to suction (a little squeezed bulb). That should (SHOULD) be the last thing.

Funny, funny kid

Labeling posts... So, almost two years later I figure out how to label the posts... with 218 posts to date, I can't label them all. I went through and picked out the big milestones and hospitalizations. It's an easy way for me to keep track of hospitalizations, and for the people that surf on over to learn about lymphatic malformations, trachs or whatever.


Micah seems to be doing well. He's only on tylenol and is sleeping... like a baby. :) We'll see how he acts the rest of the day. I'm hoping since he wasn't under anesthesia for more than 45 minutes he won't be too out of it. He woke up much more quickly (and happily) this time than most. Hooray!

So, I look over to see Micah doing this: (It's too bad he got interrupted). This came out of nowhere... I'll narrate:

"one fell off and bumped his head... mama called the doctor and the doctor said.. no more monkeys jumping on the bed."

If this doesn't make you smile, you must need to go back to bed or something!

The next Howie Mandel?

Hand sanitizer, anyone? I think we're making a compulsive little boy :) It makes me laugh, though, everytime. This was the night before surgery in our little hotel room.

They've got soft little elbow straighteners on, so he can grab any number of things he shouldn't have. The surgeon gave us a call and said he'd come by in the morning (thank you!) and that we should get the pressure dressings changed then. The drainage has slowed considerably, but that's always subject to change. When I asked about when we were getting out of here he gave a little chuckle. He knows how antsy I am. Unfortuately it's one of those things you don't know til you know. The drainage needs to slow to a minumum and everything needs to look good underneath the dressings. We also found out he can't get the stitches out til a week after surgery. I think we'll just end up staying down here til then. Not a lot of sense hauling him in this state back to Indiana Tuesday (or so) to bring him back Thursday. We'll see. He can get morphine every hour, but he only seems to need it every 3-4 hours, which is good.

Micah's a tough little cookie, and he's starting to win over the nurses, even while he's not fully awake yet!

Lizziey, that fist bump pic is for you. You're the first one to teach him that.

We're looking at surgery at 10am on Thursday. They'll call us and tell us the time for sure sometime today. Last we heard they're booking the OR for 5 hours, although that could change too.

Micah saw his pediatrician yesterday, and he gave us a resounding "all clear" which was a big relief. Of course, it's all up to the anesthesiologist on surgery day.

I've got a lot on my mind this morning... stupid stuff like supplies that I need to sign for that need to show up today, how my plant is going to stay alive (I'm sending it to you, mom! LOL).. The trash, the recycling (Craig, you might be getting a text about that one). It's funny how the little stuff drives you crazy when you're already stressed out. Luckily this is my morning to get out of the house... But as I write this, I realize how surrounded we are by wonderful people that will help us out if we just ask. Not everyone is so lucky.

Micah is doing awesome. In the last week he's started to eat more than I've ever seen him eat. He's tolerating his tube feedings like a pro, and at times he's chattering up a storm. He said "dada" for the first time a week or two ago, much to his daddy's delight. We're not sure what sounds he's making most of the time (but that's any 18 mo old!), but we're thankful for anything.

Anyways, we'll try to let you know if anything changes in the next 48 hours. (Yikes... only 48 hours til surgery..)

Here's Micah walking around, jabbering about who knows what! He's just recently started babbling like this, it's too fun!

Now THIS is vacation

If this isn't chillin' with dad, I don't know what is. :)

In other news, the trip to Cincinnati wasn't the most productive ever. Orthopedics told us that his shoulder problems aren't skeletal in nature. I'm kinda shocked, really. But, it helps us narrow down that it's probably something related to his first big surgery, damage to part of the 11th craniofacial nerve. He seems to have damage to part of it, but not both of the parts (unless I'm not sure what I'm looking for). Well, if it's nerve damage... It is what it is. He seems to be functioning well enough.

His upper GI on his stomach showed exactly what I thought it would. NOTHING. Everything looks normal, and the wrap on his stomach is supposedly working fine. It didn't seem fine when he was vomiting today. Ugh. Again, I think we're at a point where it is what it is. He's still growing and that's the most important thing.

Clinic went as expected. The mass has grown, not tons, but it's growing. The doc wants the surgery in late winter/early spring. He's planning on starting up by the temple and trying to get behind his ear as well. Still looking at booking the OR for 4-5 hours, although that won't get it all for sure.

But now, we're on vacation. And we're chillin.

So you think you can dance?

Check out these moves :)

Rollin', rollin' rollin!

Micah's skill of the week is rollin! I can't keep up with him! I walked out of the room for just a minute, and he'd rolled multiple times in one direction, and reached into a basket and pulled out a picture! He was just staring at it, like "What? I'm just trying to make sure you're not holding out on me!"

He loves to just "chill" (as in the first picture). If he can kick his feet up on something, he will!

And also, why is it that kids want what they're not supposed to have? I can surround Micah with toys, but nothing is more exciting than his feeding tube. He'll hold it up to his face and stare at it for hours if I would let him! Kids will be kids!

I'm glad that I'm finally somewhat back in the loop. Micah and I are going to church pretty regularly.

Would you pray that Micah isn't getting sick? I'm starting to wonder... And of course, he always pulls stunts like that over the weekend!

Fun pictures...

Prunes are apparently not for the eating, they're for the wearing!
We are leaving Sunday for Cincy, will be back by Tuesday afternoon, hopefully. Pray all goes well.

(forgive the picture quality on all these, they're camera phone pics!)