Bioness Muscle Stimulation - So Cool!

Wow - it's Friday already!  Cole had therapy Monday and it went very well.  Although happy with his progress, Heather agrees with Jill's assessment two weeks ago that he has abnormal extensor posturing which is causing him to arch his back and protrude his belly.  The good news is that it should resolve itself over time.  I asked both therapists about it because I was worried it was a developmental issue with his spine.  We have a few new exercises that will help him build the muscles necessary to "even out."  Any activities that require him to carry something with two hands will be helpful.  We are going to have some fun being creative!

Tuesday Reagan had PT and Jill explained an option we may consider in a few years to help with her high tone.  I've mentioned botox and achilles tendon surgery previously but this is something different.  It's an advanced technology from Bioness Inc. The system sends an electrical stimulation in a precise sequence, which activates the muscles to lift the foot to take a step.  As you know, Reagan trips because her brain isn't efficiently sending the signal to the muscle to raise her toe.  Similarly, there is a system for her hand since she has trouble straightening her fingers.  If she is able to tolerate the impulses it could eliminate the use of the foot brace completely.  Feel free to read more about the solution - Bioness Leg Cuff

Wednesday Cole met with his neurologist, Dr. Lavenstein, and we had a great visit in the new office in Fairfax.  He was very happy with Cole's progress and we reminisced about Cole's humble beginnings, the night he started having seizures, and how Dr. L finally tracked me in the hospital cafeteria to give me the bad news that Cole needed an EEG.  Cole's skin was so thin we were specifically told by the nurses that we could touch him but should never move our fingers on his skin because it could bleed/breakdown.  I couldn't imagine the glue and probes attached to such a tiny, fragile baby. 

As usual, he asked a lot of questions about cognitive and physical development.  As part of the questions he asked if Cole is seizure free.  Caught a little off guard, I confirmed he is and asked if we should be worried about seizures for some reason.  I know seizures can occur if he has a shunt malfunction, but perhaps I blocked out that Cole has an increased risk of seizures since he has a foreign object in his head.  Ugh...I think one child with epilepsy in this family is sufficient.  We go back to see the neurologist in January.  After Cole's 2 year check-up and the ophthalmologist with both kids in October we don't have another doctor's appointment for 3 months!  That means we can relax and enjoy all the upcoming holidays!  In January we have two neurology appointments, two neurosurgery appointments and a CT scan for Cole but we will think about that after a birthday party, two halloween costumes, a turkey and a guy with a white beard in a big fuzzy red coat.

Reagan also had OT today and it went well as usual.  In addition to growing out of her foot brace she has also grown out of her hand brace.  We will have her fitted next session for a new one.  Perhaps purple this time?!

The most exciting update that I have for this entry is that Cole started using three word phrases yesterday!  As you may remember, combining words is an 18 month skill.  Cole started putting together words at about 22 months such as, "close it" and "shoes on."  Out of the blue I was cleaning him up after dinner last night and he looked up with those beautiful blues and said, "Thank you mommy."  I just about fell out of my chair.  Then we started our nighttime routine and when he leaned in to kiss daddy to go to bed he said, "night night daddy". 

I know to many of you these developmental steps may seem "standard" but for a mom of a child with such a tough beginning, many tears have been shed not knowing if he would ever learn to talk or have any cognitive processing at all.  "Standard" is so exceptional.  The fact that he is not only putting together three words but also non-tangeable concepts is a signficant developmental step (a "shoe" is easier to conceptionalize than "thank you").  We are so excited for our little Ironman. 

As we move closer to Cole's birthday the memories of where we were two years ago come flooding back.  I finally ordered Cole's Caring Bridge book and have been reading the journal entries.  Although the memories are still painful we are in awe of how far Cole has come in the last two years and look forward to seeing where life takes us in the next two!