Monday, August 30, 2010

Speaking, Beaching, and Eating

Mikan is now using his voice augmentation app to communicate his needs. It's called Voice4u. We like it so far. He can choose from a list of items and touch the iPad screen to hear our voices say the name. You can also record video clips to go along with each item, and add whatever other pictures or audio you want to use. He already understands how to use it and will often ask for it to play with.

This week Mikan has an ENT appointment to follow-up on his sinus infection, discuss the possibility of ear tubes, and check the status of his stoma, which may need some surgical revision. If he needs both of these procedures, we'd have them done at the same time.

We still haven't heard when Mikan's AFOs will be ready to pick up, but we're anxious to get them because his walking is still pretty stagnant. His PT says that he sits and stands much better after his horseback riding sessions, but we've noticed that our day-to-day stretching and practices just don't seem to be getting him anywhere fast.

Some beach pics from Sat.

Just like last year at this time, Mikan enjoys licking apples, but refuses to consume any fruit. His biggest eating accomplishment last week was eating a whole brownie. He doesn't seem to have a problem with the chocolate flavored foods.

Tuesday, August 24, 2010

Ortho Update

Last week Mikan saw an orthodic specialist and an orthopaedic surgeon. Mikan's feet and ankles are still too tight, preventing him from gaining strength for walking. After he is stretched out during the day it improves, but when he sleeps, he tightens back up. Mikan was casted for an AFO (Ankle-foot orthoses)that he will need to wear while he sleeps. The hope is that the AFO will keep him stretched out during the night, so when he uses his SMOs during the day he can walk easier from the moment he wakes up. I was hesitant to embrace the new equipment, but we want to do anything we can to help him walk. He maneuvers pretty well in his walker, but does very little independent standing or walking.

The surgeon said his pelvic x-rays looked normal and that Mikan appears to just have a muscle/coordination problem. We already knew this, but it was nice to rule out just one more abnormality. He said that there are sugeries to correct his muscle issues if he were to fight his braces in the future. Obviously this is something we'd like to avoid.

Mikan's eating is progressing. If he could live off dry cereal, goldfish, and milk we wouldn't need to keep the g-tube. Unfortunately, he refuses to drink water, and whenever we offer him fruit, he only licks it. Most of the time he prefers to lick it while it sits on the table, like in the video below.

At the end of the video, he is signing "Mikan" because he sees the camera and wants to watch a video of himself. He's pretty vain.

Monday, August 16, 2010

MRI Results

Mikan's MRI results came back normal. We don't meet with the neurologist until mid-Spetember when he has a sleep-deprived EEG, but we were given the unofficial news over the phone today. I guess we'll discuss what it means in light of his severe PT delay at that time, but for now it is a relief. Nothing new to worry about.

He's had a runny nose for about a month now, and his congestion is worsening, most likely developing a cold on top of some allergies. We've been avoiding taking him to see a doctor because he is acting normal and isn't running a fever.

Below is a video of Mikan's "practice walking." It's more of a controlled fall towards furniture or people, but hopefully it is something to build on.

Monday, August 9, 2010

Voice Augmentation

Mikan has his MRI last week. We won't know the results until sometime later this week. He was able to get chlorol hydrate through his g-tube, so no pokes, which he appreciated.

This week a few of Mikan's cousins came to visit. We went to the beach on Saturday and then John took them rafting at the East Race on Sunday. Mikan and I took pictures from land, him not meeting the height requirement, and my pregnancy disqualifying me.

Mikan's eating continues to improve. He still prefers dry foods that he can pick up with his hands (cereal, goldfish, crackers, etc.), but at least he is swallowing them. He refuses to drink anything besides milk, acting like we've poisoned him if he accidentally sips water or juice in his cup.

His speech therapist thinks he needs a voice augmentation device so that he will be able to communicate better with people who don't know sign language. He doesn't have too many words, and his speech is likely to be delayed for awhile; however, because his receptive skills are caught up, she thinks an intervention is necessary. Specialized voice augmentation devices can cost upwards of $5,000 and although insurance sometimes pays partial amounts, it takes a long time for approval. After Mikan begins speaking, which he eventually will, this pricey item will become virtually useless. As a result, we are considering some apple applications that allow us to use cheaper resources and hopefully achieve the same results. We've searched for a few that allow us to upload pictures he can touch and the computer speaks for him. If anyone has experience with using voice augmentation apps and has some advice about which ones to go with or which to avoid, we'd appreciate any input. There is a lot to choose from.

(These are their "game faces")

Tuesday, August 3, 2010


I have spent some time looking over past blog entries. I'll quote one now,"He'll be walking before he crawls."

I wish.

Mikan is starting to walk. At the library tonight, he took nine steps before crashing into the couch in the play area. These were marionette style baby steps. The first couple are quasi-controlled steps while the last five are a controlled fall. But, when given the option, we picks his walker. Watching Mikan in his walker can be a frightening experience for the untrained eye. As we visit neighbors on our street, their constantly reacting to his jerky walking shows how wobbly he can be. I know he won't fall, they don't.

By using his walker, he enjoys the outside independence boys need. He finds the puddles to make his mom react. He walks up to signs to shake them and see the tops move. He pulls on one part of the mums to see how they're connected. He tries to get into the nurses cars. He lays down on the concrete when he's all done. He walks three blocks towards the basketball court, just to get thristy when I forget the drink and we end up going back home. He never stays on the street sidewalks, constantly walking up to peoples' houses, especially if they have a basketball hoop.

Mikan knows the bedtime routine. I can't help but have watery eyes when he tries to delay bedtime by signing "Basketball, Please." A hoop in his room provides hours of entertainment that is pretty difficult for me to say no to.

A friend made a comment to me last week, "Man, it must have been a tough 2 years to this point." I was unsure of how to respond. And I still am.

It really has been a fast 2 years plus. Parts of it have been tough. ALL of it rewarding. But I'm glad God thinks we can handle so much.