Sunday, July 29, 2012

Town Fair Therapy

Mikan shocked us this weekend when he tried a few new foods.  We took him to our town's annual "Hometown Days" festival for dinner one evening.  After we sat down at a picnic table and Mikan finished his regular meal of Pringles and cereal, he said "You want some fries."  Because he still gets his pronouns confused, he was actually telling us that he wanted some fries.  John and I looked at each other and then I promptly found a vendor selling some fries while John went to purchase an elephant ear.  After Mikan ate several fries without gagging, he said "You want an elephant ear."

What?!  I thought.  An elephant ear?  This kid hasn't eaten anything non-crunchy in almost 2 years.  And before that the times were few and far-between.  So we broke off pieces of the elephant ear.  And he ate them.  And he asked for more.  And he ate those.  And then he asked for more.

Needless to say, for the rest of the weekend we kept asking him if he wanted to go back to the festival to eat.  Since I couldn't be certain about the availability of elephant ears anytime in the next year, we took him to dinner again the next evening at the festival.  There probably aren't too many parents who are ecstatic about their kids eating a weekend of carnival food.  Baby steps.

Sunday, July 22, 2012

G-tube Update

Last week Mikan saw the surgeon who checked his g-tube scar.  He said that it didn't look like any stomach contents were leaking, but the redness and drainage may be due to his skin rubbing together since his skin kind of collapsed in on itself as it tried to heal.  He wants to let us watch him for another 7-8 months before we decide on a revision.  However, if the site begins to bother him, he will fix it up right away.  I don't think it has bothered him too much yet, so we plan on giving it some time.  Avoiding/delaying another surgery was good news to me, and, since I celebrated my 29th birthday on the same day as his doctor visit, I considered this part of my present.

Mikan will have a weight check soon, his first since ditching the g-tube.  I am fairly certain he has lost weight, but I don't think he is wasting away.  Hopefully time will help with this as well.

Right now we are going through the process of finding a new house in a location that will centralize all of Mikan's therapies (PT, OT, ST, and ABA).  Right now his therapies are separated by about a 70 minute drive.  Moving seems a little overwhelming, but cutting down on the driving that I will have to do with all the kids in the car will definitely be worth it.

Mikan proud of his upside-down dressing.  Boxer shorts on the head and tank top on the bottom.

Wednesday, July 11, 2012

Wordless Wednesday

Wednesday, July 4, 2012

Happy July 4th 2012

Mikan was pleased to hear that today was the 4th, since 4 is his favorite number.  He's been talking about it throughout the day.  With the dry weather this year, fireworks are scarce in this area, so we won't be staying up for any shows.  We spent the morning at Lake Michigan with some of Mikan's cousins.

Mikan's g-tube still hasn't closed.  The drainage is very minimal, but I will have to schedule a GI follow-up to determine whether surgery is necessary.  

Mikan has now completed his first month of ABA (Applied Behavior Analysis) therapy.  The first month was mostly made up of assessments, and we recently met with the therapy consultant to discuss his results.  Mikan entered the program with many skills to build on.  Right now he is attending therapy 3 days a week for 8 hours.  However, we were a little surprised to hear a recommendation for a more intensive program.  The consultant basically said that many autistic children who attend therapy school part-time and a general education preschool part-time tend to take longer to make progress since negative behaviors are unintentionally reinforced (She said this was true regardless of a child's severity.).  So her recommendation was an aggressive program five days a week to build a quicker and more solid foundation before we transitioned him back to a regular classroom.  She also explained that Mikan would not be missing out on too many academic skills at his age and that they could work with him to continue developing academically.  He also already has many of the academic skills necessary for first grade, but he lags terribly in socialization.  

Anyway, this gives us a lot more to think about since we do not live close to his therapy school, and we were hoping for a short bout of ABA.  It sounds like he may need ABA for another 2-3 years (either full-time or part-time).  Of course it is impossible to predict anything now, but we are beginning to recognize how his delays are impacting him.  

So we are still deciding on a permanent schedule for him, trying to sort out what his "best interests" are, if that ever could really be determined for sure.  On a positive note, he really enjoys his ABA school and they treat him very well, with activity-based learning so he isn't aware that he is working.  I think I originally had a more traditional perception of ABA and was worried that he would participate in "drill and kill" tactics.  This doesn't appear to be the new approach.  

Mikan checking out the numbers and letters outside of the mailbox.

Mikan was sitting happily with his sister and cousins, playing in the waves two seconds before this picture was taken.  Then he returned to drawing states in the sand (which drew a small crowd of impressed strangers).