Monday, June 3, 2013


Thought I should post a medical update on the twins.  I will start with Blake.

Blake had a minor set back which caused him to not be able to practice with his prosthetic leg.  As of last Tuesday, he received the OK from his surgeon to begin practicing again.  Blake, however, is now very nervous about using his prosthesis.  He is afraid his incision will drain again.  We held off pushing the issue until Friday.  We casually talked about how we had to begin practicing again.  On Friday, we told Blake we had to start.  As many of you know, Blake is the type of kid that is extremely nervous to try anything new.  He needs a big push, then he instantly is happy when he realizes it is something he can do.  Blake most likely would put off trying his prosthesis forever, if we did not insist.  So we gave him his needed push and he moved around the house for about 15 minutes or so.  He whimpered the entire time.  He is scared to put weight on the prosthetic leg, which is interfering with his ability to bend the knee and ankle on the prosthesis.  As soon as he realizes the leg can hold him, practice will go much smoother.  He practiced a little on Saturday and again on Sunday.  On Sunday, he did much better. Very little whimpering and he seemed very proud to be moving along a bit better.  He still will not put weight on it, but I am sure that will come in time.  He is scheduled to see his prosthetic doctor tomorrow and begin physical therapy next week.

Blake also recently had a follow up appointment with his ophthalmologist.  He does not need to wear his glasses anymore because he has 20/20 vision.  He was a bit disappointed because his cousin Conner wears glasses and he wants to be just like Conner!  The bad news was that his strabismus has not improved.  The doctor wanted him to have surgery in both eyes.  She wanted to do it right away as soon as school is out.  Blake has been through so much this Spring with his leg, we decided we would wait until Fall.  We are going to be diligent about him wearing eye patches daily for two hours at a time.  His next appointment is in September and we are praying his strabismus shows some improvement and possibly he can avoid surgery altogether.  Our decision is based on the fact that surgery is not a permanent solution.  He could need a second surgery as early as one year after the first.  The patch therapy is a permanent solution.  He is capable of bringing his eyes together and focusing on an object.  We just need to train his eyes to do it on their own.

Have not yet had the twins first real dental visit.  Had to reschedule their May appointment because Emery had a fever.  Turned out it was just caused from updated immunizations, but didn't want to take a chance that she was sick.  They go in two weeks.  So we will see how that goes.

Now for Emery.  Emery has been continuing her therapy at Horizons.  She still loves going and loves her therapist!  Her apraxia has improved slightly.  She has started to say some words spontaneously, but not many.  This process is very slow.  I wish there was something to move it a long, but there just isn't.  Apraxia is difficult, but possible, to correct.  We just have to keep going.  Emery does not like learning new things in therapy unless they involve something physically active.  But, when pushed, she catches on quickly and then enjoys working with the new skill and masters it in a relatively short amount of time.

We have also began a neurofeedback therapy treatment with Emery.  The therapy is called LENS.  It can be extremely helpful with Emery's sensory behaviors and even her speech issues.  Not sure how long she will receive the treatments, but praying they make a significant difference for her.  This therapy is done during her normal therapy time and is included in the price we are already paying.  So no additional cost!  It has only been about 3 weeks, so changes are minimal at this time.

Emery has to keep wearing glasses because she has astigmatism.  Her strabismus has improved!  The doctor wants us to increase the eye patch therapy to two hours per day, rather than one hour, and we will have a follow up appt in September.  Hoping surgery is avoided for her too!  The funniest part about the visit to the ophthalmologist, is when the technician handed Emery her glasses back, Emery stretched the bows apart and broke her frames. Right there in front of the technician.  Fortunately, the frames were still under warranty and they were replaced at no charge.  Emery did require a new prescription, so we did have to get new lenses.  We got her lenses from our long-time optometrist at about 50% the cost of the ophthalmologist's office.

Overall, we are basically where we thought we would be medically with the twins.  Still some work to go, but we are getting there.  Other than a few minor colds, the twins remained healthy over the winter season.  Hoping by Fall Blake will be comfortable with his leg and the number of our medical appts will be decreasing!

I have to write an education update post about the twins.  Will try to get to it soon.

1 comment:

  1. My daughter from BG has apraxia, too, and was basically non-verbal at age 3.5, only saying two words, kind of. We started her in PROMPT speech therapy (after getting no results from traditional speech therapy) and now at about 10 weeks in with PROMPT, she says about 20 words clearly and uses them across contexts and has about 10-15 word approximations that she uses as well.

    You should look into PROMPT for Emery. Just google PROMPT Institute.