Reagan hits the slopes and tests e-stim!

What an exciting way to start 2013!  We were able to schedule Reagan for an adaptive ski lesson at Wintergreen Adapative Sports.  They were nothing short of amazing. She had four instructors who were very knowledgeable about high tone and how to accomodate the support during Reagan's lesson.  She was very shy at the beginning, but quickly realized how fun skiing can be when you really get moving fast.  From the moment she saw the chair lift she was determined to go for a ride!  After 2 hours of practice she finally convinced the team to let her give it a try.  She did really well and has been talking about it all week.

We also had a busy day today.  Reagan had her regular physical therapy session with Jill this morning and an evaluation with a specialist, from Bioness, an electrical stimulation foot drop system.  The specialist put a small electrode inside Reagan's shoe with a chip that clipped on the edge of the shoe.  She then velcro'd a band (we called it a bracelet) right below Reagan's knee.  Every time Reagan picked up her foot the system sent an electrical impule to the brain tell her toe to lift.  It took a while to get the impulse strength high enough.  She decribed the feeling as "tingling" and after it came off Reagan said she would be willing to try it again.  Unfortunately Reagan's therapy was not able to be at the appointment so she would like to see how it changes her gait before we invest in the solution ($7,900 only partially paid by insurance).  She is still very young and it's important that she wears the device if we choose to try it.  The theory is that over time, the brain develops new pathways to raise the toe and she wouldn't need the device long term.  We've decided to do a little research on "e-stim" (electrical stimulation) and see what outcomes can be expected.  Additionally, we need to consult with Reagan's neurologist.  Since the device sends an electrical impulse to the brain...and a seizure is an electrical impulse being sent to the brain...we need to talk through the potential concern that this could "excite" certain areas of the brain that we don't really want to "wake up".  Timing is perfect - we meet with him in two weeks! 

Saying Good-Bye to 2012

Although very busy, the Bischoff Family had a wonderful holiday season.  Johnny was able to take more than a week of vacation so we had a lot of fun as a family.  Henry the elf arrived in the Bischoff household with the advent calendar on December 1st.  These were two new traditions that Reagan loved immediately.  And such great motivation to get her out of bed in the morning!  Reagan asked Santa for Rex the Toy Story dinosaur and a mermaid barbie doll and Cole was very excited about the new roller coaster and noisy trucks that he found in the living room Christmas morning.  It's amazing how every Christmas gets better when you have little children who get so excited.

We took Cole to his first theater movie, Monster's Inc.  We were hoping he would love the big screen and dark room.  He loved it so much he quickly fell asleep and took a great nap!

We had a few weeks off from therapy and doctor appointments and it was a nice relief from a hectic year.  We started 2012 with the hope that our family might avoid any sleepovers at the hospital but didn't get our wish.  At least one person in our family has been hospitalized every year since 2008.  We are hoping for a hospital free 2013 ! 

One of my favorite parts of the new year is being able to move the the insurance Explanation of Benefits file and the claims reimbursement file to the archive box in the basement.  My four month battle with reimbursements for Reagan's therapy hasn't quite ended so this will be delayed this year.  I did get notification yesterday, however, that the Medical Review board has finally approved Reagan's therapy and we should be receiving all the reimbursements owed since September.  I fax a claims report every month that generally includes about 18 pages of documentation.  It's amazing how quickly the paperwork fills the filing cabinet!  This year Reagan had 78 appointments, one hospitalization (with EEG), and one MRI at the hospital.  Cole had 27 appointments and one CT at the hospital.  So that's 108 in 2012 for the Bischoff family (not including mom and dad).  We are glad to be moving into 2013 and look forward to the excitement it will bring.  In the next six weeks we have two neurology appointments, two neurosurgery appointments, one CT scan, one evaluation at UVA and an adaptive ski class for Reagan in addition to therapy and swimming.  Updates to come!  We wish each of you and your family a Happy New Year filled with health and happiness.

Neuro Optho Joins Team Colton

Wow - I can't believe how busy we have been!  I have been working almost full time on a contract for Comcast to build a briefing center in Chicago and Johnny's work has been extremely busy with some tough cases and long hours to stay on top of things.  But life doesn't stop, so we just keep trecking....

We decided to visit a neurological opthamologist, Dr. Avery from Children's National Medical Center.  He was very knowledgeable and we are very happy we took the time to see him.  He is very familiar with Dr. Jeffery and was glad to hear we are under her care.  He agrees with her current direction and clarified the difference for us between a neuro optho and a traditional optho.  His focus is on neurological reasons for vision issues, like a tumor constricting the optic nerves.  He does not prescribe glasses or do the surgeries that Dr. Jeffery said may be in our future.  He said he is interested in joining Team Colton but that we may choose to see him yearly, every other year or if we are considering surgery to get his second opinion.  He did recommend we start Cole in school in the Fall and start to research vision services such as the Virginia School for the Blind.  He also recommended a vision treatment center in Bethesda which I have called to see if they take patients as young as Cole for vision rehabilition.  He said he does not agree with vision therapy so we are trying to find the line between the two and determine if we want to start those services.

We also requested his Early Intervention Specialist bring a Vision Specialist with her for Cole's monthly appointment.  We met with them today and it was very a good appointment. She said there are a lot of new vision technologies that help kiddos like Cole.  For example, she said many schools have camera carts that can sit right next to Cole's seat with a monitor that he could zoom into content on the board or on the teacher and see it on his monitor.  So although it's discouraging that we have to worry about these services, we hope the more we learn the more we'll be able to advocate for Cole.  We have several new therapy tasks including beading, stacking and continued work on object identification.  Both therapists felt the delays that we see with Cole may be attributed to his inability to see versus a cognitive disability to learn. 


Reagan also had a busy couple weeks.  We have been talking about putting her in a restraint camp but haven't found one for her age.  Constraint Induced Movement Therapy (CIMT) is a therapy designed to specifically treat “learned non-use” of the affected arm as a result of stroke, cerebral palsy, or brachial plexus injuries. CIMT involves using a cast to constrain the dominant arm while providing simultaneous intensive practice of movements in the hemiplegic arm.  We had the cast made this week and the therapist will add a fleece liner and velcro closures.  We will be able to pick up the cast next week and are hoping we can convince Reagan she has not one but TWO super gloves ;)  It's all about the spin right?!

Our little rock star also graduated from Swim Tots 1 to Swim Tots 2 !  That means she will get her face wet and is able to blow bubbles.  After class she was told to stand on the stool, ring a bell and they wanted to take her picture.  The poor kid - she was deathly afraid she was going to fall off the stool and was really cold.  But she is very proud of her accomplishment and is looking forward to continuing to take swim lessons.

She also had her first experience with Build A Bear.  We went with my friend Lisa and her two children, Kaitlin and Evan and my nieces Emily and Allison.  Clarice is her new best friend and goes with her everywhere. She had a great time and is already talking about going back to get Rudolph! 



 



Ophthalmology Visit - the good, the bad and the ugly

We had a follow up appointment for Cole today with Dr. Jeffery. Reagan also had a new patient visit because she had questionable results on her vision exam at her 3 year appointment with the pediatrician in May.

Reagan's appointment went very well and she passed with flying colors!  Only the mom of a baby with brain damage is excited when she hears, "Her optic nerves are bright pink and plump."  We are very relieved to know that her eyesight is good and we don't need to bring her back for several years.

Dr. Jeffery was also very pleased with Cole's progress.  She said he is using both eyes very well and she recommended we stop patching!  This was a big surprise and we are very happy patching is behind us even if it is temporary.  She wants to see us again in 6 months to check his progress.  As with many appointments during the 3 year journey with our children, however, I then got kicked in the stomach.  A blow I should have been prepared for, but wasn't.

I asked Dr. Jeffery to help me understand why Cole is running into things, walking off curbs and why he holds the iPad three inches from his face.  She said we need to remember that he has a lot of issues with his eyes.  Hopefully I will relay the explanation clearly...

Cole has two different problems - 1) he has structural issues with the eyes and 2) he has damage in the visual center of the brain.  The shaking in his eyes (nystagmus) is the outward sign that the eyes and brain are having trouble communicating.  If your eye is longer or shorter than what it should be, a corrective lens can change the refraction to adjust the image and ensure it lands on the retina.  Thus, glasses adjust where the image lands after it is received and therefore help with the structural issue. 

The reason Cole's issues are so complicated is because he also has brain damage from the brain bleed (IVH).  This isn't new information, but I have to admit that I didn't fully understand the dynamics between the structural and neural connections until today.  Cole can point out images in his environment, he is learning new words everyday and we have been so happy with his progress.  He knows several of his alphabet letters, he knows almost all his shapes including hexagon, pentagon and trapezoid.  So today was a sobering reminder that we have a very large hill in front of us. 

Glasses will help the image get to the retina but once the image is sent to the optic nerve (which we know is damaged because it is a pale pink) the brain has trouble processing that image.  Dr. Jeffery said Cole will probably never have better than 20/70 sight.  She expects he will need special services at school to help him in the classroom - whether that means just sitting in the front row, bigger printed textbooks or possibly more significant support requirements.  She said we probably won't know the true extent of his issues until he can start communicating with us (hopefully by his 3 yr birthday).  The vision requirement to drive is 20/40.  Whether his lenses will be able to get him to that minimum level is yet to be determined. 

It is hard to share how it feels to be told your child may not be able to drive.  Ask any parent who has a preteen how many times he asks how long until he gets his permit.  You would think after everything we have been through that I wouldn't be surprised by this news. And that after thinking he may be blind, that just knowing he smiles when he sees me pick him up should be satisfying enough.  So perhaps I'm looking a gift horse in the mouth....perhaps I'm counting my blessings and I should just be happy that I have any to count at all.  But I can't imagine how not being able to drive changes everything in your life.  How do you get to work?  This controls where you can live to have public transportation.  How do you take a girl on a date?  Don't get me wrong - I know we are so blessed to have Cole to love and hold.  Not a day goes by that I don't remind myself how lucky we are.  But with every bit of progress we see I want more.  I feel selfish wanting him to be ok but I know that is the dream every mom has.  My heart is heavy tonight as we are reminded to be thankful for every bit of progress that Cole makes.  This appointment has reinforced my interest in getting his Child Find assessment to learn what vision services are available.  We have an appointment with Early Intervention next Tuesday and we will discuss it then.  It is a lengthy process and he won't be able to start school until next Fall, but at least it helps his mom and dad feel like they are able to do something to help him.  The feeling of helplessness came the day he was born and I couldn't hold him.  The first day he was hungry and I couldn't feed him.  And even though today I can hold him and feed him every day, that feeling of not being able to help him seems just as challenging...