Saturday, November 28, 2009

Happy Thanksgiving

The evening we left our house to go visit the relatives for Thanksgiving, we noticed Mikan's nose running. (He looks a little out of it in the picture above) It hasn't stopped and he's now developed a cough. His activity level remains the same, but his secretions have increased. We've been giving him Xopanex since we returned home last night. We haven't capped him in a few days.

Last night Mikan slept for an hour in the car, and was rejuvenated for the evening. He didn't fall asleep until midnight. John thinks it was because he read him "Five Little Monkeys Jumping on the Bed" while we were trying to get him to fall asleep. On the bright side, Mikan learned the "jump" sign last night.

Mikan's trunk strength is improving. He now enjoys ramming his Radio Flyer car into our baseboards.

Saturday, November 21, 2009

News Story and Mom of the Year Dinner

I didn't win Mom of the Year, but we had a wonderful time. I wanted to post the link to the news story of Mikan. They didn't upload video to the website, but here is the link to the story:

WSBT Story

Aunt Debbie, Nina, me, Alexa, Angela, Aunt Cindy

Me and Angela (my wonderful friend who nominated me for this honor)

The March of Dimes Mom of the Year Award Dinner was a blast! I saw a lot of family and friends, and some of Mikan's nurses even attended. The winner of the award lost a child after three months in the hospital. She was born at 27 weeks. All of the finalists had pretty profound stories. It was an honor to attend.

Mikan's g-tube problem is solved for now. He now has a fully functioning g-tube in his stomach without tape wrapped around his abdomen. We also have a back-up. Hopefully these last longer than the first ones.

Friday, November 20, 2009

G-Tube Dilemma

Lately we've been having problems with Mikan's g-tube balloons bursting in his stomach. We've gone through two balloons in three weeks. Each one is supposed to last three months. Our home care company warned us that they would have to start charging us whatever our insurance wouldn't cover. They are $219 apiece. Well, we ordered a back-up a week and a half ago when the first one burst. I called to follow-up about not receiving a back-up twice after my first phone call. Guess what? Last night our back-up burst. Why wasn't one delivered? I'm not sure. No one thought it was immediate enough of an issue to bring one out yesterday evening, so this is what we had to do to Mikan's stomach to make sure the damaged one didn't fall out.

Today I have to run into South Bend and miss Mikan's PT in order for him to get a new g-tube before the weekend. No one was driving out to our area today, so we were informed we had to pick one up ourselves. John's at work and I am leaving for Indy in a few hours, so as soon as his home care nurse arrives, I am off to get a new g-tube. Why do they keep bursting? We are going to try and return the damaged ones so we hopefully don't have to pay. Sigh.

Monday, November 16, 2009

A Trip to the Dome

Mikan and Dad at the Golden Dome

Mikan in front of Touchdown Jesus

Mikan checking out the football stadium

We took advantage of what was possibly the last warm day of the year by walking Mikan around Notre Dame. We had to delay his nap, so we drew a little attention with a few of his stroller tantrums, but overall he enjoyed getting outside and seeing the sights. Mikan has no comment on the Notre Dame game last Sat., but he's happy for the Colts.

Mikan's sleep schedule is still a little erratic. He wakes up sometimes before 5 a.m. no matter what time we put him down in the evenings.

Thursday, November 12, 2009

Mikan's Signs

Mikan showing off a few of the signs he's learned recently. I'm not sure what he's doing with his hands in between signs. It seems like he's always practicing something. We're pretty proud.

Today I took Mikan into a Child Development class at the school where we work. The class checks this blog as part of their curriculum. We dragged the vent with us to show them how it worked. Lugging that machine around made me appreciate all over again that he no longer needs it.

So far Mikan's been staying healthy. He got his first Synagis shot this week and he is due for his second H1N1 shot next week.

Sunday, November 8, 2009

Capture the Flag and Tractor Rides

Mikan has finally been sleeping better at night. We are trying to get him to take only one long nap. We aren't completely successful yet-he prefers sleeping in hour spurts and staying up late- but hopefully with time it'll work itself out.

On Saturday we went to Grandma and Grandpa's house for their annual Capture the Flag extravaganza. As is typical, after two rounds of play and several arguments about the rules, there is still a debate about who actually won each game. Mikan chose to sleep by the bonfire instead of hash out the intricacies of the game.

Early in the day, Mikan screamed the whole time he rode with Grandpa on his tractor. But later Mikan and I got to ride on a combine and harvest some soy beans with a neighboring farmer. He loved staring out the huge windows and watching the blades turn. He's set his sights higher I suppose.

Mikan's signing has really taken off. He just learned "ice cream" this weekend and he's pretty proud of himself.

Sunday, November 1, 2009

Happy Halloween

Although Mikan opted out of collecting any H1N1 infested candy, he still dressed up and partied at Nina and Poppi's house, then spent the night at Grandma and Grandma's, falling asleep watching Notre Dame beat Washington State.

The last two mornings Mikan has woken up at 3:45 and refused to lay back down. I'm not sure how he's had the energy to do anything this weekend. We don't know exactly what the problem is. Last time he wouldn't sleep he had an ear infection. But he doesn't get fevers with his ear infections, so it's hard to tell exactly what is going on. So, we'll just wait it out I suppose. In the meantime, we could all use a little more shut eye.