Tuesday, March 30, 2010

Best Bronchoscopy Ever

Mikan's bronch went well today. All is clear for an attempted decanulation in May. He handled the day pretty well. I actually let him use the portable DVD player for the first time today (our surgery was about 1.5 hours behind schedule). Upon waking up from his anesthesia, he was signing please, dad, please, dad, please dad, until they brought him to us. At first, the nurses thought that he was just flailing around until they realize he was doing the same motions over and over again like he was trying to communicate with them. Mikan communicating in sign language with people who don't understand is going to be entertaining over the next couple of years.

Then he wanted nothing more than to have his IV out, then the gauze off of his hand. We left the hospital shortly after.

So he's set for a decanulation attempt in May. We're excited. We have big summer plans for Mikan without the trach! We figure a little sand in the g-tube doesn't hurt. Kind of like the gizzard of a chicken.

Thursday, March 25, 2010


Mikan got sick with some sort of cold on Sunday, then gave it to me on Monday, and John on Tuesday. Mikan is acting fine, but his ENT wants him on an antibiotic to be safe (since he is scheduled for surgery on Tues). He was coughing up yellow blood tinged mucus earlier this week. The good news is he is acting like nothing is wrong. His activity level remains the same, and he is still tolerating his cap all day. We've given him breathing treatments and tried to get him some fresh air. We really don't want to push back this scope again. Prayers for Mikan's speedy recovery are much appreciated!

Friday, March 19, 2010

More Equipment

Mikan got fitted for his SMOs this week. The orthopedic specialist said that Mikan would be able to learn how to walk without the SMOs, but he would be making compensations for his lack of ligament strength which would later lead to awkward running, clumsiness, and possible lack of coordination. Mikan has what some might call "flat feet." He said the difference between a kid with SMOs who needs them and one without is the difference between the kid running at the head of the pack at recess and the one straggling behind, then finally sitting with a book in the corner because it's too difficult. We love Mikan no matter which kid he is, but we also want to give him every opportunity to be successful. We should have the SMOs within a few weeks. The orthopedist also noted that Mikan crosses his second and third toe when he walks. He may have to get fitted for a special strap to correct this as well. Just load on the extra equipment...

This week during trach care I met some resistance while I was changing Mikan's trach. I applied a small amount of extra force and the tube went in smoothly, but I definitely felt like I had to "get past" something. Mikan's scope is in a week and a half, so I guess we'll find out for sure what is going on then. I hope this doesn't mean he has another obstruction. He is still tolerating his trach cap during the day, but anything is possible.

Here are a few videos from this week. Mikan is exploring all parts of our house lately.

Mikan loves doing the "dancing" sign whenever music is playing.
Mikan and Dad karaoke part 2.

Wednesday, March 10, 2010

Help Us Give Back

This year we are participating in the March of Dimes March for Babies walk in South Bend. If you would like to donate to our team, please click on the March for Babies badge on the left side of this screen. Just look at the slide show in the previous post for proof of how this wonderful organization has changed our lives. Any little bit will help. You can make a donation online by following the link. We'd like to thank everyone for their continued support over the last few years.

I made a cake for Mikan's birthday. The shape was a dinosaur mold, but when I tried to flip it over after it cooled, it split in half and didn't look hard enough, so I ended up frosting the underside to make it look alright. I also did an awful job with the writing. So I'll never be a cake decorator. Oh well.

Mikan playing with a new toy

Friday, March 5, 2010

Happy 2nd Birthday Mikan Boy!

It's official. Mr. Mikan is 2 today. We're so proud of the progress he's made since last March. Here are just a few notable achievements:

1) Ventilator-free 24 hours a day
2) Learning to sit up on his own, crawl, and cruise
3) Learning sign language
4) Learning how to laugh more often and use his voice
5) Learning to keep his glasses on his face

We saw his ENT this week, and she said that if Mikan only needed a small amount of granulation tissue removed, she would still consider downsizing his trach and scheduling a sleep study/removal of the trach in April. However, if a large amount needs to be removed, then we will have to have another scope before we talk about decannulation. Unfortunately, Mikan has been showing signs of respiratory difficulty after playtime. One evening this week, he laid down on the floor to rest, which he never does. He tolerates the PMV fine, but the cap makes him tired. These are signs of more granulation tissue growing. Right now we'll just monitor him. He's still been able to wear the cap during the day, we just hope it doesn't get any worse.

Mikan's PT has also made the recommendation that he get SMOs. "Supramalleolar Orthosis" is a custom molded brace designed to stabilize weak muscles around his foot and ankle. These are supposed to help him learn to stand and walk. We're anticipating that they will only be temporary, but we don't know how long he'll need them. He gets fitted for the braces in a few weeks. I was hoping to avoid yet another piece of plastic on our son, but if it will help him walk, I'm all for it.

We are having several small celebrations for Mikan's birthday, hoping to avoid a mass gathering of potentially sick people.

Here's a flashback look at the last two years of Mikan's blessed life.
Thanks to everyone who has prayed for Mikan along the way.

John chose the music. My suggestions were much more sentimental.