Wednesday, July 31, 2013

Botox Update and Hacienda Mess

I've been having trouble keeping up with life lately I guess as evidenced by my lag time between posts. Mikan's botox injections went well.  He was terrified of the procedure, but once he woke up he was fine and acting normally.  The injections start to take effect after two weeks.  It has been two and a half weeks so far, and we are just starting to notice some changes.  He is having a hard time walking without his braces, and he will vocalize this, saying something like "My foot isn't working," or "I keep falling."  His braces are a little easier to put on and we can stretch his calves much easier.  Hopefully this period will give him some good walking practice.  We have increased his PT to twice a week for now, and we see his doctor in a few weeks to follow-up.

The day after his physiatry follow-up, Mikan will have an inpatient surgery to close his g-tube stoma.

I was able to observe Mikan at his ABA school recently, and I was happy to see how much progress he has made.  This has helped me realize that the transition to kindergarten was the correct decision.  He has had some great therapists who have done an excellent job making sure he was having fun, but also learning.  Although Mikan is nervous about the change, I know he will transition well and it will only be a matter of time before he is excited about kindergarten.

Below is a video taken at Hacienda after we were served churros and chocolate hot sauce.  I think most parents would have been horrified if they witnessed their child doing this in public.  Instead I got the video camera out because I was so pleased about the great progress it documented.  Before this video was taken he also ate part of a hot dog bun and a french fry.

On other fronts, Anica is in a poop-smearing phase, and Drexler won't sleep more than 2-3 hours a night.

But I don't want to end complaining, so I'll add that both Anica and Mikan are extremely entertaining with their affinity for singing pop karaoke.  At our house you can regularly hear their renditions of Alicia Keys' "This Girl is on Fire," Kelly Clarkson's "Catching My Breath," Christina Aguilera's "I Just Want to Feel This Moment" or Carrie Underwood's "Before He Cheats" (which Mikan knows all of the words to).  A video to come.

Monday, July 8, 2013

Cherry Picking and Botox on the Horizon

We have been pleased with Mikan's interest in new foods.  He still will rarely eat anything outside of his crunchy favorites, but his attitude about food is changing.  I know this is a result of constant exposure in a non-threatening environment.  It is taking way longer than I ever thought it would, but I can see a more typical diet somewhere in his future.  We took him cherry picking recently and the pictures prove that he wanted to try them!  He only licked the skin, but he did it without any prompting.  Blueberry and apple picking are in his near future.

Later this week Mikan will undergo his first round of Botox injections in his gastrox muscles.  He will receive additional PT during the weeks following the injections in order to maximize their effect.  This is the first procedure he has undergone where I am not very optimistic about the results.  I know the effect is temporary, and I know that he will continue to develop more muscle problems as he grows.  We are struggling with accepting this ongoing issue.  It's good to know that time and therapy will make things better, but we can't be sure that is true for his ataxia and spasticity.  These issues will need to be managed lifelong, and I'm not sure I'm ready to sign him up for a life-sentence of Botox.  We have made the decision to try them once and see how he feels.

We have also decided to sign Mikan up for additional OT sessions through the summer since he has a little extra time.  But after this summer I think it is time to scale back.  I am ready to say "no" or "this is too much" or "he's doing fine" to anyone suggesting additional treatments.  Mikan will soon be able to communicate better what he wants and better direct his therapy.  Right now I am deciding those things for him.  But it's wearing me out.  And I'm not even the one in therapy.