Thursday, September 18, 2014

Gross Motor Update

Mikan's most recent physiatry trip was a little disappointing.  The physiatrist can't figure out a way to stop him from dragging his toes when he walks.  She didn't mention wanting to back off on any of his bracing, only try new adjustments and therapies.  Mikan doesn't appear to have any foot or leg issues that are causing him problems, it is his ataxia that is the root of everything.  Ataxia is a condition that affects the part of his brain that controls balance and coordination.  Because of his ataxia, his movements are varied and unpredictable.  His bracing is supposed to support his walking while also preventing bone deformities that might need surgical correction.

The physiatrist reminded us that as he grows, each issue becomes harder to correct because we will be trying to control a bigger, stronger body.  She said that we shouldn't rule out the possibility of surgery down the road and that he may need to practice using a walker in public for safety reasons.  He already uses his walker at school during some transitions.

So after she tried a variety of different contraptions in his shoes and on his legs, she decided to recommend experimenting with ESTIM (electrical muscle stimulation) during his PT sessions.  She isn't too confident that this will help; she said her treatments are all just trial and error right now for him since he isn't responding very predictably.  It seems like just six months ago we were talking about downgrading to SMOs and now we are discussing walkers and surgeries.  We follow up in three months to discuss the EMS therapy and whether or not he tolerates it.

A video of a recent "fight" Mikan and Anica had over where they wanted to travel to:

Wednesday, August 20, 2014

Back to School

It's been a while since we last updated, but we've had a busy summer!  This was Mikan's first summer off in three years.  He was able to attend several camps and other extracurriculars including gymnastics and swimming.  Today was his first day of first grade.  He was brimming with excitement waiting for the bus.  I can't believe how fast he's growing up.  He has recently become more interested in playing with his siblings and he and Anica have enjoyed spending more time together this summer playing make-believe and making their own movies (Usually some version of what they call "Mean Boy Steals Little Girl's Basket').

Mikan's current interests include: Pangea and the evolution of the continents, galaxies, nebulas, and stars.

A brief medical update:
Mikan had previous tests confirmed that revealed a low frequency hearing loss in both ears.  We explored the possibility of hearing aids, but they are not covered by any of his insurance policies.  We are going to try an FM system that amplifies sound for him in school first before we make any final decisions about hearing aids.  He functions well without any support, he just asks for things to be repeated sometimes.

On the balance beam

Our butterflies are finally coming out!

First grader

Waiting for the bus

Friday, June 13, 2014

Vision and Hearing

Yesterday an audiologist confirmed that Mikan has a mild low frequency hearing loss in both ears.  We have scheduled a follow-up appointment to discuss possibly getting him a hearing aid.  Mikan's past hearing results have never been definitive, and we began to wonder about his hearing because of his frequent requests for us to repeat ourselves.  His high frequency hearing barely meets the normal range. But he functions well at school and home, we just often need to repeat ourselves or speak louder for him to hear us.

When we first walked into the audiologist's room, she asked me, "Do you think Mikan has problems with hearing?"  I said, "Yes," but Mikan immediately interrupted me with, "No!  I can hear you just fine."  But unfortunately, the audiologist didn't chart that response and Mikan was still subjected to multiple beeps and phrasing tests.  He kept asking how many beeps were left and then just started raising his hand randomly, even if the beeps weren't sounding because he wanted the test to be over with.  I think that he thought that if he kept raising his hand, it would move things along.

Mikan also saw his eye doctor this week who said that his glass patching has been extremely effective over the past year.  His left eye has now caught up to his right and his overall vision is 20/60, which is permissible for daytime driving.  His prescription is also stabilizing, which is a good sign that the damage from his ROP may be under control.  We have taken the patch off of his left eye glass, so hopefully he will be able to see better for the next six months.  As long as his vision remains the same, we will lose the patch.

On a non-medical note, we were able to visit some of our good friends in South Haven last weekend.  Here the kids are enjoying the beach.

Monday, May 12, 2014

Gross Motor Setback

Our most recent physiatry appointment brought us a little disappointment.  Mikan isn't progressing with his left SMO, so he got fitted for a new pair of AFOs on both legs again.  Mikan is disappointed because he doesn't think he can run as fast with AFOs, but his doctor is still waiting for him to develop a better heel-toe walking pattern, which will hopefully prevent the need for future hip surgeries.  We are also trying kinesio tape again, but it never stays on, so I doubt it is doing him much good.

This summer Mikan is signed up for all sorts of exciting activities including swim lessons, an academic camp, baseball, and Vacation Bible School.  This will be the first summer off from full-time therapy he's had in the past three years and I think he is enjoying the change.

Enjoying goodies from an Easter egg hunt at our subdivision park last month

Mikan's new bike fitted with "fat wheels" and shoe holders.

Drexler leading the way on our walk through the park woods

Monday, April 14, 2014

Spring Break Indy Trip 2014

We began our spring break with a doctor's appointment for Mikan (with the developmental pediatrician) and an extended stay in Indianapolis.  Mikan's doctor said he was doing great and recommended we enroll Mikan in an art class so that he could have more opportunities to socialize with peers who shared his interests.  

We also took the kids to the Children's Museum, which was a big hit.  Some pictures below.    

Digging for dinosaur bones

Mikan's favorite spot (the mirror maze).  In his words, "There are like millions of us!"

Monday, March 24, 2014

Gross Motor Plateau

Mikan's school PT doesn't think Mikan is ready for his shorter SMO brace on his left foot.  His clinic PT is also skeptical.  We follow up next month with his physiatrist to make a final determination.  He doesn't get too many heel strikes when he walks on that foot, but he really loves the freedom of movement he has with the shorter brace.  He will be devastated to return to a full AFO if that is what is necessary.  Mikan tells us regularly that he can't wait until both of his braces are short because then he will be able to run really fast, "like cheetah speed," he says.  When I mentioned that he may have to go back into a longer brace, he was very worried and said that he needed shorter braces so that he could run faster.  We hope he can learn to adjust with his new brace so we can keep looking forward.

He still falls all the time though.  It's hard for me to tell, but I don't really see much improvement lately.  He can walk relatively well and move quickly when he wants to, but he can't jump or run, and he falls a lot, especially if he is near other people and is bumped (even slightly).  He has to plan each of his movements, and it is difficult for him to react to unexpected obstacles.  Although he doesn't seemed too discouraged most of the time, I can't help but imagine how frustrating his physical disability may seem as he grows older or how embarrassing his falls may feel to him.

Despite his difficulties, it is great to see how he enjoys movement and physical play.  He finds ways to participate in whatever his siblings do.  He likes doing flips off of the top of his bed onto Anica's lower trundle bed.  This dance/gymnastics video below is a typical scene at our house in the evenings.

Wednesday, March 5, 2014

Happy 6th Birthday Mikan

Today we celebrate the start of Mikan's sixth year of life (and Mikan woke up extra early to remind us).  It seems incredible how much our lives have changed since his birth.  Many would tell us this when we were pregnant, but it is impossible to know the depth of that truth until you live it.  We are incredibly proud of his hard work each and every day–hard work to be the best Mikan he can be.

On the Horizon:

-A follow-up physiatry visit to determine if Mikan can keep his left SMO or if he needs to return to an AFO.  To keep the SMO, he needs to exhibit more heel strike patterns and improved balance.

-Entrance into the high-ability program at his school.  This qualification means he will continue to receive differentiated coursework throughout first grade.

-Gymnastics lessons!  Mikan is really excited about joining a gymnastics class through a local recreation center for children with disabilities. 

-March for Babies.  This is the time of year we are trying to fundraise in honor of Mikan and so many others like him who have a rough start at life.  If you are interested in donating to our team this year, you can visit Mikan's March for Babies Page.

Below is a video montage of the past year of Mikan's life, along with a few brief trips down memory lane.

Thursday, February 6, 2014

Months of the Year

These are Mikan's new "Months of the Year" orthotics.  Each time we go to the orthotics office to order new ones, we are handed the book of prints most kids typically like.  Mikan has never chosen one from "the book."  They are able to print anything on there he wants, so he always has his own ideas.  In the past he has asked for planets, letters and numbers, and states and countries.  He has one AFO on his right foot and a new SMO on his left foot.  We made the trip to see his physiatrist in Indianapolis today for a braces check.  I had the three kids by myself since John was speaking at the HASTI (Hoosier Association of Science Teachers, Inc.) conference in Indy today.

During the appointment (as I'm trying to have a meaningful discussion with the doctor), Drexler ate a few crayons, ate the paper lining the examination table, fell backwards down the steps leading up to the examination table, and pooped his pants (not necessarily in that order).  Anica and Mikan fought about whether the sole notebook I brought with us should be used as a "doctor's check-up book" or a "70-month planner."  It must have looked bad because when the doctor left to write her summary note, she asked to take Anica back with her while I "cleaned up."  So I took her up on it.  Anica felt special writing her doctor scribbles in the doctor's behind-the-scenes office.

The physiatrist thinks that he still needs to get more heel-strike motion with both of his feet.  Because he seemed to be balancing well while he walked, she said that she is willing to try the shorter SMO brace on his left foot for a few months to see if the increased range of motion will help further improve his balance.  We will go back to reassess his balance and ability to isolate foot movement (lift his toes and move them side to side).

A few lessons learned from driving three kids aged five and under more than three hours in a van (for the first time):
1. Make sure to choose the DVD that plays repeatedly and not the one that gets stuck at the start menu until you press 'play.'
2. Have plenty of food in the front seat to chuck back at them because you will miss the first few times.
3. If they are sleeping, don't stop.  Don't stop for gas.  Don't stop at a drive-through for coffee.  Just. Don't. Stop.

Monday, January 20, 2014

Gymnastics Lessons

Mikan attended a birthday party yesterday held at a local gymnastics center.  Most of the parents dropped their children off at the party since there were organized events hosted by the center.  I stayed behind with a few others to help Mikan participate.  He loved all of the different stations and obstacle courses (balance beam, vault, bars, trampolines, etc.), but he would not have been able to participate in everything the other kids did had I not been there helping him through much of it.  For example, he couldn't crawl out of the "marshmallow" pit without help.  He couldn't climb on some of the ladders and higher obstacles either.  I was planning on signing him up for gymnastics lessons at the same gym through the local center that organizes activities for children with developmental disabilities, and this party was an opportunity to get a glimpse of the facility.

Below are some lessons I learned from this party:

  • Most of Mikan's classmates ignore him in high-energy settings with a lot of opportunities for physical activity.  He can't keep up with them, and they have no interest in engaging with him.  I'm guessing this is what recess usually looks like.
  • Mikan does well in group eating environments.  They served pizza and chocolate cake at the party.  He ate several bites of pizza crust and chocolate cake.  No prompting.  No encouragement.
  • Mikan's interests are still sometimes random and this turns off some kids.  For example, he kept asking his peers in line around him to check out his football jersey he was wearing.  One girl just gave him a weird look and ignored him (just completely turned away).  When he later asked the same girl if he could try the rings after her, she responded, "These will be too hard for you." 
  • There are people his age patient enough and nice enough who will promote his interest in social relationships.  When Mikan asked a second girl to check out his jersey, she gave him a very animated response with how much she liked it and even circled around behind him to look at the back.  She also cheered for him when he was completing some obstacles.
  • I am grateful of the opportunity Anica and Drexler will have to grow up with someone who has a physical disability.  It is my dearest hope that they learn to treat everyone with dignity and defend the rights of those cast aside by society.  I completely understand that young kids typically do not know how to act appropriately around peers with disabilities, but I can still hope that Mikan's influence will help his siblings learn to be more like girl #2 and not girl #1.  

Sunday, January 12, 2014

What's What?

It is hard for me to observe Mikan and not try to figure out why he does what he does.   Right now my mind puts behaviors into one of three categories...Because he's Mikan, because he's autistic, or because he has CP.

I am not sure if this is a fair or right thing to do, my mind just does it.  So here are some of those observations I'm recording here to let you know what he's up to.  

Because he's Mikan
He wants to take off all coats, jackets, sweatpants whenever we get inside from being outside (regardless of the temperature in the house-I often turn off the heat before we go out).   The conversation usually goes like this.
"Dad it's hot in here, I'm going to take off my jacket and pants."
I respond, "Oh, so we don't need to turn the thermostat up from 61 degrees, we can keep it there."
Mikan's response, "No, turn it to 70"
Me "How about 68"
Mikan "No, 2 more, 70"
Me "68, you said it was hot"

He wants to wrestle me and be lifted on up on my feet.
He looks forward to school, riding the bus, and swim school.

My gut/heart tells me everything should really be in this (Because he's Mikan) category, but that's how my mind treats it.

Because he's Autistic: 
Wants to wear jerseys or shirts with numbers on them all of the time.
Wants to draw timers or calendars.
Never introduces himself by saying his name.  He will not say, "My name is Mikan."
Wants to search for clocks/timers at Goodwill.
Wants to take something with him where ever he goes.  "Come on Mikan, let's go."  "No, wait. I need to bring something."
He looks at people eating ice cream and pizza as if they are crazy for liking to eat those things.
-But then I remind myself that I didn't wear shorts until I was in upper elementary school, because I demanded that I wore sweatpants.

Because of CP:
Opts to stay inside instead of going for walk on a day it gets up to 40 degrees.
Needs extra help at swim lessons getting in and out of the pool.