Tuesday, September 29, 2009

Weekend Update

I went to Indy for a March of Dimes Mom Photo Shoot on Saturday. Then on Sunday we had the NICU reunion. As you can see, Mikan still is in his clingy mommy/daddy phase.

Despite his attitude, I still think people were happy to see his progress.

Wednesday, September 23, 2009

Therapy and Roid Rage

Mikan had his newborn follow-up clinic evaluation today with some of his old NICU girlfriends. He did pretty well with them until the end. He likes opening doors now and all he wanted to do was walk to the door and pound on it. Mikan also had ST and OT today, he's a trooper. His evaluation showed significant improvement. He is at least keeping pace with his adjusted age for his cognitive skills. He is a little behind in everything else, but we're floored that he is learning new things every day.

He has finally been sleeping better at night. Whatever he was fighting seems to be leaving his system. And we're done with the temporary steroid boost. I'm thankful for that because I've been attributing his lack of afternoon napping and crabbiness to some roid rage.

Mikan LOVES the computer. We can't have it on when he's in the room.

Mikan's ritual of "eating" food. (Putting it in his mouth and sucking all the flavor off, then spitting it back out...This was a tortilla chip goatee)

Saturday, September 19, 2009

A Plethora of Problems

Mikan found a green bean in our garden that we let grow a little too long.

After a week straight of going on no more than 2 hours of uninterrupted sleep at a time, I took Mikan to see his pulmonologist and ENT. Both concluded that he probably had picked up some kind of bug since surgery that may have been resistant to the antibiotic he was taking. The constant cough probably wasn't allowing his airway to heal normally either. Oh, and he has an ear infection...and he's getting teeth...and his g-tube is really sore...and he is growing more granulation tissue on the outside of his trach stoma, leaving it really tender. No wonder he's been crabby. But he finally has been sleeping better the last two nights. I hope this is a good trend. His doctors put him on a steroid for 5 days to help him heal (I thought we were done with those...), Augmentin to hopefully kill his bug, Xopanex breathing treatments, and a steroid cream for his granulation tissue (We used some silver nitrate on it at home too). Oh, and he got a flu shot and blood drawn that day as well. Poor guy.

His pulmonologist gave us a little depressing news, although we'd been predicting it anyway. He doesn't recommend that Mikan gets his trach out this fall, even if he is ready. We are rapidly approaching cold and flu season and he wants to be cautious, which is understandable. With this new illness delaying our capping, I don't think he's going to be ready for awhile anyway.

Sunday, September 13, 2009

So Tired

Ever since his surgery Mikan has been sleeping horribly. The first few nights he was waking up in the middle of the night for hours at a time completely inconsolable. He also hasn't been napping. This makes for a tired mom and dad. Each night has been getting better, but we haven't had a chance to really catch up yet on our sleep. On a positive note, Mikan has been tolerating his PMV and his stoma irritation is finally diminishing.

Mikan is also signing "eat." Although it appears that he attempts other signs as well, I would say he only knows "up" and "eat" consistently.

Today we had family pictures at John's parents' house. The first time Mikan was expected to sit with someone other than John or I, he completely lost it and wouldn't calm down for the remainder of the pictures. Every single picture he is crying or trying to rip his glasses off, or gagging on his own saliva from being so hysterical. Can't wait to see those.

We also had a photographer at our house last week who wanted to take pictures for the March of Dimes chef auction and Mom of the Year dinner. It was the day after surgery and Mikan had only a thirty minute nap all day. I expect similar results. He's a mamma and daddy's boy lately.

Tuesday, September 8, 2009

Still Talking About It...

Mikan spent most of his early morning flirting with the outpatient surgery nurses and chewing on plastic silverware in the hospital lounge. After the procedure we received some pretty good news. Mikan's ENT is still talking about getting rid of the trach! The fact that we get to discuss those plans is so exciting for us. She was unable to downsize during surgery because more granulation tissue had grown inside the upper airway where the trach rubs, and she needed to remove it. However, she didn't have to use the lasers and she just pushed it through his stoma. His lower airway looked great!

So, where do we go from here? Well, she has given us the order to experiment with capping the trach at home once he heals from this procedure. After that she wants to take a look at him again in her office. She mentioned sleep studies and possibly another scope before she removed or downsized, but at least we are moving in the right direction! Thank you God and thanks to everyone who has been praying for Mikan!

Saturday, September 5, 2009

Nutter Butters and College Football

Mikan found another favorite food to lick.

As a faithful Irish fan, Mikan thinks this is the year for Notre Dame football. 35-0 is a nice start.

We have another shot at a scope on Tuesday. Mikan's feeling better so we're assuming it's a go. Thanks to everyone for your continued prayers.

Wednesday, September 2, 2009

What do Crash Test Dummies and Mikan have in Common?

WARNING: If you don't know the song "Mmm Mmm Mmm Mmm" by Crash Test Dummies this post will not make any sense and might repulse you. However, I figure I needed to balance out the beautiful Jenna's "Apples and Beaches" post with a little guy post. Believe it or not, Jenna made me tone this post down quite a bit. Please comment if you want the unedited version. Or comment if your leaving this blog as a result of this post.

Once, there was this boy who's sac broke early and his mom went to the emergency room.
But when we was finally born he was twenty-eight weeks old and really small.
They said that if they knew why they would a win a Nobel Prize.

Mmm Mmm Mmm Mmm Mmm Mmm Mmm Mmm

Once there was this boy who, wouldn't eat at the table with all the other boys.
But when we finally made him, he would just taste the food and then spit it out.
They couldn't quite explain it, they said that it was from the nose tube.

Mmm Mmm Mmm Mmm Mmm Mmm Mmm Mmm Mmm Mmm Mmm Mmm Mmm Mmm Mmm Mmm

Both sac breaking and eating weren't bad, cause one time he had it worse than that.

Once there was this boy whose parents hoped he'd be regular at least every day.
And when his diaper was clean for four days, he got glycerin to help him out.
He couldn't quite explain it, it was just stuck there.

Mmm Mmm Mmm Mmm Mmm Mmm Mmm Mmm Mmm Mmm Mmm Mmm Mmm Mmm Mmm Mmm