Thursday, April 29, 2010

March of Dimes Walk and Sleep Study Update

Apparently South Bend's sleep clinic isn't equipped to handle special needs children, so we will be traveling to Ft. Wayne to get tested. This actually works out better because their sleep lab had an opening much earlier. So next week we are headed to Ft. Wayne to hopefully hear some good news.

We had to take Mikan back to the orthodic center to fix his SMOs. They were digging into his feet, and his PT was worried about sores. So far he hasn't had any more redness, so hopefully they are fixed for good.

The March of Dimes walk was a success. Our family raised over $800, and our team raised much more, although I don't know the final total.

Here are the adorable twins we walked with, exhausted from the wagon ride.

Mikan, Dad, and the rainbow outside our house this weekend.

At the walk, Mikan was fascinated with the March of Dimes bear. He kept signing "bear" and pointing to it. As a result, we spent a lot of quality time with the bear. Here is a video of our final visit on our way to our car. Mikan couldn't let us pass him up once he was in sight.

Thursday, April 22, 2010

Buckeye Boy

Mikan's g-tube infection is much better, but he is still on his antibiotic. I think we caught it early enough that it didn't do too much damage. We're happy we were able to take care of this at home.

Mikan is getting used to his SMOs. He still isn't showing any interest in standing, but his PT has noted his improved stability. We're just happy he isn't screaming when we put them on anymore.

Mikan's sleep study is scheduled for mid-May, but we are on a cancellation list, so we hope to get it taken care of earlier.

Mikan has rediscovered a football toy that was given to him at birth. It alternates between playing the Ohio State fight song and yelling "Go Buckeyes!" when it hits the ground. Mikan LOVES it. He cheers and dances for the Buckeyes whenever the football prompts him. If any family members are disturbed by the video below (Ahem...Uncle Ben...), then perhaps they may want to find a Notre Dame football for Mikan. I think it will take an equally awesome Notre Dame toy to get Mikan back on the Fighting Irish side.

This weekend (despite the crummy forecast), we are walking to support the March of Dimes with our family and friends. You can still donate by clicking on the March of Dimes badge in the left margin of this page. Thank you to all who have donated. We are excited to be a part of such a wonderful organization.

Thursday, April 15, 2010


Mikan's Fighting Irish SMOs.

It's been awhile since we've updated. Mikan has kept busy. We got his SMOs this week. He hates when we put them on. He screamed the entire time we visited the orthopedist. I haven't noticed any improvement yet, in fact he gets around much more awkwardly with them at this point. I'm sure as he gets used to them they will help, but right now they are a big pain. He still isn't showing any interest in walking, but we know it takes time.

Before Mikan is scheduled to be decannulated, his ENT wants a sleep study done. We are waiting for this to be scheduled. This may delay the big event several weeks, but it makes sense to ensure that the doctors are making the right decision.

Mikan also recently contracted an infection around his g-tube. It is extremely sore, and he had a fever last night of 102. He is on an antibiotic now, but the poor guy justwasn't really acting like himself for several days. He is finally looking better this morning and his fever broke.

We are walking in the March for Babies Walk next weekend. If anyone would like to donate to our team, please click on the March of Dimes badge in the left margin of this page. Thanks for everyone's support!

Tuesday, April 6, 2010

Happy Easter!

Mikan wasn't quite quick enough to take advantage of the Easter Egg Hunt at Grandma and Grandpa's house. He collected a few eggs that were thrown back for him after someone already found them, but, for the most part, too many cousins swept in before he did. But he took notes and is motivated to compete better next year.

Yesterday John watched Mikan, and I took a trip to Chicago with some of Mikan's cousins. It was the highlight of my spring break. The rest of the week is devoted to doctor appointments and therapies for Mikan.

Today we visited Mikan's pulmonologist who said that Mikan looked great. After his bronch last week, Mikan's trach tube was downsized from a 4.0 to a 3.5. This will help him breathe around it better while he is capped. Before the scope, both he and Mikan's ENT were uncomfortable with his mild retractions when he breathed. However, today the pulmonologist said that he thinks Mikan's breathing has improved, possibly due to the downsizing of the trach, which is a good sign for life after the trach. Sometime in May we will go to the hospital with him and attempt to take the trach out. We are so thankful for this opportunity for Mikan. He's been through a lot and this is an exciting step.

Here are some pics from the Easter Weekend.