Thursday, March 28, 2013

Happy Holy Week

Mikan has been working hard in PT on riding a bike.  He usually gets distracted and has difficulty steering, but it is clear that his strength is improving, and when he is motivated enough, it is a skill he will eventually master.

A trip down Memory Lane:  Mikan's Easter picture from March of 2008.  He still wasn't permitted to wear any cute Spring outfits.  I just had to settle for bunny ears.

Friday, March 22, 2013

Something Different

Yes, every once in awhile, Mikan draws something besides solar system pictures.

(In reference to Anica's wet diaper)

Is he mocking how Dad calls him "picky?"

Dora picture

Saturday, March 16, 2013

Physiatry News

We drove to Indy this week to see Mikan's physiatrist.  She was pleased to note his progress, but she did mention that she was considering botox injections.  In the past she didn't think he needed them because he had good foot and ankle range when he relaxed.  He still has good range when he relaxes, but she said that his spasticity triggers during any activity, which gives him an awkward and inefficient gait.  She didn't say yet that she wanted him to have the injections, but she said she wanted us to try a new flexible AFO for awhile and see if he could continue to make progress.  The botox would relax the spasticity so that he could have a better chance of walking with a heel to toe gait.  The hope would be that during the time when the botox was effective, his brain would receive enough input to eventually train his body to walk more efficiently.  There is no guarantee there will be any carryover once the injections wear off, but the chance is there, and it has apparently worked for many other kids with varying degrees of spasticity.  We aren't close to making a decision about this.  We obviously have a lot of things to consider.

There seems to be some disagreement about whether or not Mikan's g-tube stoma needs surgical closing.  We will probably wait until the summer to make a decision about this.  While the general surgeon doesn't seem to think it is a problem, Mikan's pediatrician and physiatrist have expressed their concern.  For now we will wait until we gather more information.

Mikan has taken an interest in Dum Dums lately.  Butterscotch is his favorite flavor.  I am pleased that it is something different to add to his very narrow repertoire.

Thursday, March 7, 2013

Happy 5th Birthday Mikan

On March 5th we celebrated Mikan's 5th birthday.  Five years ago we set up residence in the hospital with our tiny baby for nearly six months.  Mikan has met many milestones since then, including getting rid of a ventilator, trach, and g-tube.  He has learned to walk, talk, and eat (all with extreme effort) and has many academic accomplishments and interests well beyond his years.  He makes us want to be better parents and better people.  God is definitely working through him.

This year Mikan said he wanted to go to McDonalds for his birthday dinner.  I was thrilled he didn't just say he wanted Pringles, so we started out (in the middle of a snowstorm) for the short drive.  But John slid into a curb and our rim was damaged pretty badly, so we drove instead to an auto shop close by to get it repaired.  We did eventually make it to McDonalds and Mikan ate one bite out of 8 different chicken nuggets (which means it was a success).  He didn't want cake, but instead asked for a donut (again, we were ecstatic he asked for something that wasn't crunchy).  Anica wanted to celebrate her birthday again too, so we got two donuts and two birthday candles.  He didn't eat any of the donut, but he did eat a couple bites from his donut I bought him the previous weekend for his "practice" birthday party.

Some notable achievements in his 4th year of life:
1. G-tube removal
2. Speaking in full sentences without prompting
3. Eye contact when speaking to someone
4. Drinking juice and water regularly!
5. Using a spoon with dry cereal
6. Play dates with friends
7. Potty training!
8. More gross motor independence (he has almost learned to ride a bike)

Below is a video montage with some snippets from the past five years.  I can't wait to see what he will accomplish in year 5.

We've also begun fundraising for the annual March for Babies walk in April.  If you'd like to donate to our team, please click on the link at the bottom of the March of Dimes badge (in the left-hand margin).  This will take you to our team page where you can make an online donation.  Every little bit helps.  Thanks for supporting us.