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!  

Beachin' It!

The Bischoff family took a much needed trip to the beach this week!  We were blessed with amazing weather that made the vacation absolutely perfect.  We rented a beautiful house in Rehoboth, DE with several friends - the Golino's, Solomon's and Coullahan's.  With 8 adults, a four year old, two three year olds, an almost 2 year old and 3 infants it was definitely a week filled with activity!

We spent our time on the beach, going for walks on the boardwalk, fishing, painting ceramics and shopping at the outlets.  Reagan spent the week with Abby and Emma, her two BFFs (best friends forever).  Although like most 3 years olds she had a little trouble sharing sometimes, she thought it was pretty neat getting to sleep with them every night.  On the second night I was putting her to bed and she said, "mommy, who's house is this?"  I tried to explain the house is like a hotel and we're just borrowing it for the week.  On our drive home today she said, "mommy, do we have to go to our house now?"  When I said yes, she started crying and said, "why can't we borrow that other house?"  So cute to see how kids think!

 

Reagan had a great time painting ceramics.  After she picked Mickey Mouse I promptly showed her the one already painted to help her know what to do.  When the store manager took her to pick colors she said she wanted to paint Mickey orange.  After telling Reagan that Mickey is red and black I got a nasty glare from the store manager who looked at Reagan and said, "honey, this is YOUR project.  You pick whatever colors you want."  Although slightly taken off guard, the project quickly became a very good exercise in letting go.  She had a great time, did a great job and is very proud of her piece that is displayed on our mantel at home. 

I try to remind myself that I am going to blink and my children are going to be grown and gone.  I try to take mental pictures to slow life down but haven't found it works.  Although hard to return to the daily grind, we are glad to be back at home where there isn't sand on the floor and we look forward to being back in a routine that includes nap time again!  We are gearing up for a busy week with three therapy appointments and a neurology appointment next week.

 

 



Trip to the Eye Dr. & New Kicks for Reagan !

Wow, what a busy week! Cole had an appointment with the opthalmologist, Dr. Jeffery.  The appointment went well and she said his eyes look good.  She recommended we reduce the patching from four hours to two hours.  We were definitely excited to hear that!  She said it's important he has time for the eyes to work together (to reduce the crossed eyes).  I also clarified the discussion we had about surgery.  Dr. Jeffery said the surgery for his nystagmus would probably be done sometime between age 3 and 5.  The goal is to tighten the muscles and reduce the shaking since it causes his eyes to have more trouble focusing.  We originally thought this surgery would be much sooner so we are glad to have a little more time before we have to think about it.  She asked to see Cole again in 8 weeks.  Because Reagan's school schedule changed she wasn't able to make her appointment but she has an appointment with Cole on October 22nd.


In addition to putting in a lot of hours this week to meet a deadline for work and going to the opthalmologist, Reagan also had a therapy appointment to get her new brace fitted.  One of my goals for this blog is to share tips and tricks with other parents who struggle with the issues involved in having a special needs child.  Leg braces are one of those!  Because Reagan only wears a brace on one leg she needs two different size shoes.  Because it's hard plastic it's very difficult to find shoes that open wide enough to fit them.  Most kids shoes at Reagan's age have tight elastic laces so parents aren't always struggling to keep them tied.  Unfortunately the only store we have found that will sell two different size shoes is Nordstrom.  They have been AMAZING and I highly recommend them to anyone who needs to have shoes fitted for their children. There is also a store in Potomac called ShoeTrain.  They specialize in fitting children who wear braces, and they will sell us two different sizes, but will charge half price for the second pair of shoes.  So we generally go to Nordstrom and purchase whatever shoe will fit the brace.  We usually end up with about two to choose from.  We cross our fingers that we like the way they look. 

Reagan currently wears a Jumpstart Kangaroo DAFO (Dynamic Ankle Foot Orthosis).  The cerebral palsy (CP) causes her gastrocnemious (calf muscle) to always be tight.  Some children with CP have the opposite issue and have low tone.  The high tone causes Reagan to point her toe and therefore trip.  The DAFO forces her ankle to remain at 90 degrees and prevent her from pointing her toe.  We do stretches to also loosen the muscle but the brace helps reinforce that angle.  Future treatment options include botox shots and/or a surgery that lengthens the calf (it's called gastrocnemius-soleus intramuscular aponeurotic recession).  At this point we are hoping that with enough stretching, therapy and the right physical activity she will be able to avoid these treatments.  After a trip to the Nordstrom in Tyson's Corner today we were able to find a pair that fit.  She's very excited about her new shoes and we're hoping they will last as long as the brace does!  As you can tell from the picture, she still loves pink !