Neurology, Neuro Ophthalmology, Neurosurgery Oh My!

I can't believe how much has happened in the last three months!  I'm going to have to keep things short so we can fit it all in….

B-E-A-R-S Bears! Bears! Bears! 
Let's start with a fun update.  The Bischoff family took a day trip up to PA for a Hershey Bears game and had a GREAT time.  Not only did both kids have fun, they made it through the entire game AND caught 3 pucks!


Family Trip to the Dentist ~ Dr. Hindman
Reagan had her second trip to the dentist in February and her teeth look great!  Cole had his teeth counted but was more than willing to wait until next time for the full treatment.

Cole's visit to the Neurologist ~ Dr. Lavenstein
We had a good visit with the Neurologist.  He was very happy to see Cole's progress but also concerned about his continued delays in fine motor skills and therefore recommended we go to see a Developmental Pediatrician.  We are still working on getting that appointment.  We plan to go back in a year to see him.

Cole's visit to the Neuro Ophthalmologist ~ Dr. Avery 
We had a good visit with Dr. Avery.  He was extremely surprised by how well Cole was able to perform during the vision tests.  He shared a GREAT analogy that really helped me with regards to Cole's delays.  He said to think about a digital camera.  You have the camera, you need a computer and you need a cable to plug it in to download the pictures.  The brain is the computer.  The eyes are the camera.  The optic nerves are the cable.  And his glasses are like focusing the lens.  Basically Cole has issues with all three components which make taking pictures extremely difficult.  And he wears glasses to focus the image, but if the camera takes a blurry picture because there is something wrong with the camera, the glasses can't make that image clear.  Although discouraging, it was a helpful analogy.  We plan to visit again in a year when Cole will be able to perform more complex testing that will hopefully tell us more about what his lifelong capabilities will be.

Open Up the Gates…here comes a FLOOD!
Well we keep praying that our long stretch of hospitalizations stops in 2014 (running since 2008).  Unfortunately our house took the hit in February and although thankful we haven't had any hospitalizations, this was a bad one.  A pipe in the master bathroom shower burst (we just had a bathroom renovation a few months ago).  Unfortunately I was out of town and Johnny awoke at 4am to water pouring out of the wall, through the floor, into the family room, through the floor, and into the basement.  By 5am the pipe was fixed.  By 9am the demo team was at the house and by noon we no longer had floors, ceilings or walls in about 1/2 of our house.  The kids are able to sleep in their rooms, but the only other livable space is the main room in the basement.  All our belongings (except the kids'  rooms and the basement couch) were moved into storage the following weekend and we are living in the basement.  We are calling it an adventure and so far the kids are tolerating the chaos very well!  Who doesn't love eating dinner on the floor every night?!


INOVA FFX Beam Signing
After running into one of our NICU docs while presenting at the National Neonatologist Conference in FL we were invited to the beam signing for the new INOVA Children's Hospital in Fairfax.  We were one of a few families in attendance with the INOVA executive team, high level local donors and INOVA staff.  It was a lot of fun being part of a ground breaking ceremony and we hope we never set foot there again!

Nascott Orthotics and Prosthetics ~ Shawn Koehler
You may remember that Dr. Morozova (Physical Medicine) recommended we have Reagan fitted for a Dynamic Movement Orthoses (DMO).  Although Reagan has tried other types of gloves for her hand such as the Benik neoprene pediatric glove, they have limited her movement and sensation such that we don't think they have been very beneficial.  They encouraged her thumb and first finger to remain isolated, but because it was so thick, she had trouble manipulating objectives. The DMO is lycra and provides increased sensory stimulation and functionality.  What I didn't know going into the appointment is that it takes 5-10 minutes to put it on because it is custom fit and very tight.  Shawn measured every finger and every part of Reagan's arm/hand and will order the custom fit glove in Reagan's chosen color - purple!  We will go back in 3-4 weeks once they have insurance approval and it is made to check the fitting.

Cole and Reagan's visit to the Neurosurgeon - Dr. Myseros
We had our yearly visit with the neurosurgeon today and there is nothing earth shattering to share.  We did talk about when Cole will need another scan and he said it is no longer necessary as long as he is doing well. How exciting is that?! As you probably remember, we would really like to stop exposing him to radiation.  We go back in a year to see him again.

UVA ~ Take Three...Times Two!
Another big update is that Reagan was screened and accepted into the CHAMP Study at UVA.  Reagan will receive constraint therapy three times each week during the last week of July and three weeks of August.  Unlike the previous constraint sessions, however, she was selected for the splint group and will only wear the splint during the therapy sessions (not for the entire month).  The study is researching whether the length of time and the type of constraint method affect overall improvement.  Although we look forward to seeing what progress she will achieve during the study, we know it will be a grueling month with a lot of challenges.  The good news, however, is that we can use the pool since she won't be in a cast all the time!!  Not to mention eating was one of the most challenging activities and again, she will not have the splint on during meals.  Given Cole is a little older and Reagan knows what to expect I have decided to take him with us. We are concerned he will lose functionality being away from his regular therapy for a month so I scheduled therapy for him with the traditional OTs who provide outpatient treatment at the Kluge Children's Rehabilitation Center.

Coming in the next two months we will have updates from neurology (Reagan), opthalmology (Cole), physiology (Reagan), orthoses (Reagan), pediatrics (Reagan), and IEP review (Reagan).  And hopefully renovations from the flood will be done !