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.