Sunday, May 19, 2013

Questions we asked Mikan's Walking Doctor, Botox and Looking forward...

How long will it take for the botox treatment to wear off?

Will botox require general anesthesia?

How often will he need treatment?

What is the worse possible scenario regarding using botox in this way? Why does the internet describe lethal scenarios using botox on kids?

What should we expect in X number of years after Mikan's legs become immune to botox treatment (if we continue getting treatments)?

How much of a change in baseline flexibility and mobility will we see after the botox treatment has run its course?

How exactly does Botox get this effect within the leg?  How is that different from botulism? (AP Bio level of explanation related to neurons and acetlycholine here).

I asked Mikan today..."Will Anica need leg braces when she gets older?" His response...
"Yeah, not right now though."

Mikan will probably get a round of botox in his calf muscles in about a month (pending insurance approval).  His flexibility and stability have not much improved over the past period of months, therefore we are going to do a mildly experimental intervention to hopefully help him out.  The botox will be three small doses in each calf while he is under general anesthesia.

Jenna and I are very curious about how he views his physical instability.  He is starting to reveal glimpses of awareness with random comments.  Usually these are times he is discouraged.  I am starting to understand how it is going to be living the reality of having a son with CP.

Largely, he has been sheltered from the world to this point.  He will start kindergarten in August.  I feel like he is thinking about this type of transition as well.  I notice it mainly in the way he is eating. For the last two weekends, we have eaten out at a restaurant or at a large family gathering.  In those situations, he is much more likely to explore food options that are new and pushing his comfort level.  In my mind, I am picturing in his mind that he knows there is social pressure to eat more normal foods.  Therefore, he is eating in these contexts.

Based on his responses in these more socially pressed situations, I think he is going to be a school gamer.  Where the following phrase comes from his teachers, "He does what at home? We don't see any of that here at school. That's strange." I am already getting that vibe from his therapy school.

Wednesday, May 15, 2013

The Schooling Decision

 Well, we are feeling pretty conflicted about Mikan's schooling future right now.  We've consulted with his IEP team who all think he needs to be in kindergarten.  The problem with sending him to another year of preschool is that his interests are too mature.  It will be difficult for him to socialize with kids who are not interested in the same things that he is.  Right now we are leaning towards sending him for nearly a full day of kindergarten and then taking him to his ABA therapy center for a few hours at the end of each day, or at least a few times a week (assuming our insurance approves the hours).  I observed at the kindergarten we would send him to and I realized that he already knew everything they were learning.  The kindergarten teachers are qualified to differentiate instruction for him and scaffold his learning, so I really am beginning to think he needs to be there.  He still is very emotionally immature, but he will have a full-time aid at school that will help set up social opportunities for him to be successful.  We are putting our faith in God that this is the right decision for him.

We are heading to Indy soon to follow-up with Mikan's physiatrist.  We will discuss the possibility of botox injections and other bracing regimens.

 The weather is warming up, and we've been playing outside!!!

But it was cold enough last weekend to need a winter hat still...

Mikan was pretty proud of his "city."  Each of the objects on the table he said represents either Granger, South Bend, Mishawaka, Elkhart, his ABA school, his future kindergarten, Meijer, and United Art and Education

Thursday, May 2, 2013

March of Dimes Walk, a Schooling Change-Up, and The Book

Last weekend we participated in the annual March for Babies walk.  We want to thank everyone who donated to Team Mikan Boy.  The weather was perfect, the kids loved the bounce houses afterwards, and we all got to explore the minor league baseball stadium.  

After much discussion with Mikan's doctors and therapists, we have made the decision to send him to a half-day preschool program next year instead of kindergarten.  He will remain in ABA therapy for the remaining half of the day as planned, but we have decided to transition him into a mainstreamed preschool setting rather than kindergarten due to his social immaturity.  I still feel like I have to explain what he wants or intervene whenever he is approached by a typically developing peer in order to maintain the conversation between them.  We are optimistic that this will give him a chance at a more typical social experience.  His ABA program will continue to give Mikan opportunities to explore his academic interests so that he won't become bored. 

Finally, I recently self-published several print copies of my personal essay collection about Mikan's birth and the first three years of life.  It is available for purchase through  You can also click on the book cover on the sidebar.  Please share this with anyone you think may be interested in our story or may benefit from it.