Bischoff Year In Review

Wow, and as quickly as 2013 came it's heading out….

We had a nice, relaxing evening at home for New Years celebrating with our friends, the Coullahan's.  When you have two kids under 5 it's much easier to stay home and why not?!  We kept the tradition we started last year with Johnny streaming last year's ball drop on the TV over YouTube at 8pm.  The kids don't really know the difference and they had fun counting down to "midnight".  With the craziness of the holidays they are completely off schedule, but that will come to an abrupt end Thursday morning when the bus arrives at 7:28am.

As I reflect on the last year it's amazing to think about how much we've done and how much progress we've made!  I took Reagan to 106 appointments this year and she had another 48 therapy sessions while at school.  I took Cole to 17 appointments with another 36 therapy sessions while at school.  That means driving to an average of 2.4 appointments per week (not including those during school).  Needless to say, both kids worked very hard this year and it shows!  Both have shown amazing improvements and I can only imagine what I will be writing next year at this time!  I learn so much watching Reagan and Cole and feel so blessed to be their mother.  Many days I wonder if I push them too much, too hard or too often.  And then I wonder if I'm not pushing enough.  But in the end I see the amazing progress they are making and know that it is defining who they will become.  We all have hard days and we all shed tears, but Reagan and Cole know that I love them unconditionally, no matter who they become, what they can do, or where they take the gifts that God has given them.  

We went into 2013 hoping for a year without hospitalizations and we almost met that goal.  Both kids were in the hospital - Cole was in the ER with a shunt scare in June and Reagan was admitted and put under anesthesia for Botox injections in July.  We did have a year-over-year improvement, however, in that no one SLEPT in a hospital.  Although who really sleeps in the hospital anyway?!  We have 5 appointments coming up in January and February with specialists (not including therapy) so we will start 2014 with a busy schedule.  But we are very hopeful that 2014 will be THE year without hospitalizations!!  We haven't had a year like that since 2007 so we personally think it's WELL over due.

We had such an exciting year with camping, museums, a beach trip, and several visits to amusement parks including our first trip to Disney.  Reagan had a full year without seizures and we're hopeful to keep them under control.  Cole made it through his third year without a shunt malfunction and we're hopeful to continue that winning streak in 2014.  Remember - there's a 99% chance of a malfunction in the first 10 years and I know several kids who have had multiple revisions in the first 5 years.  So we are very blessed that he hasn't had any problems.

And with that, I'd like to end this year with the following poem, "Look Well to This Day" (Anonymous).

Look well to this day,

For it and it alone is life.

In its brief course

Lie all the essence of your existence.

The Glory of Growth

The Satisfaction of Achievement

The Splendor of Beauty

For yesterday is but a dream,

And tomorrow is but a vision.

But today well lived makes every yesterday a dream of happiness,

And every tomorrow a vision of hope.

Live like you are young again.  Play in the leaves just because you can.

And always let those around you know how much you love them.

Bischoff Christmas

I can't believe Christmas has come and gone and now we're facing New Year's Eve!  We had a wonderful Christmas opening toys in the morning in front of the fire place and enjoying a cup of coffee.  This was the first year Reagan got really excited about Santa and even had a plan to ensure he could make it through the glass doors on the fire place.  Cole wasn't quite as excited, but he was quick to follow her lead and excitement.  The both had fun searching for their elf, Fred over the last month and opening the Advent calendar.

Reagan asked Santa for Pinkie Pie and Frost the Snowman.  All Cole wanted this year was a taxi.  Not sure where he was hoping to escape to, but he got his wish!  Santa also brought a drum set and tractor for Cole and a karaoke machine for Reagan.  It was a little overwhelming for Cole to open his presents, but Reagan helped him and we were able to get dressed and head out the door to start our day.

We headed to Grandma and Grandpa's house for the usual quiche, fruit soup and tea ring for brunch.  The kids had a fun time playing with their cousins.  We had a relaxing visit and Reagan opened her little barn animals from Grandma and Grandpa and Cole opened his MagnaDoodle.  Both were pretty excited!

We also took a little time to break in Mommy's present - a Smith and Wesson 9MM M&P Shield.  Although I've shot a 22 and a shot gun, I've never shot a handgun.  Needless to say I did pretty well - I hit 5 out of the first 7 shots that I took.  Not bad!  Daddy was practicing using his new toy - a Ruger 9MM handgun.  Uncle Mark, Grandpa, Jordan, Timothy and Robert also joined in the fun.

In the afternoon we went to Nana and Pop's house to visit with the Bischoff cousins.  Reagan and Cole had a blast opening all their presents and playing with their cousins.  With all 10 cousins it was a lot of fun!  I love seeing how well they all play together and how much fun they have.  If only we got to see everyone more often!  It seems like just yesterday they were all babies.

I've been lucky enough to have some time off between contracts and Johnny was able to take two days off last week and two days off this week.  Reagan and Cole have been so excited and finally understand what a "vacation" is!  Although they've both talked about school and miss their friends, they have enjoyed the extra time with Daddy and not having a schedule.  We even went to see the new Disney movie this week - Frozen.  It was excellent!

We also went to the Bull Run Festival of Lights for the first time this year.  Although the kids liked driving through the lights, the big excitement was the carnival, camel ride and roasting marshmallows.  It was an unusually warm night so it was really nice.  This was a first time riding a camel for me and for the kids.  I have no idea how uncomfortable it would be!  But the kids had blast and Cole even snuck a kiss from Eli after our ride.  We are definitely all off our schedules from sleeping later than usual and staying up later than usual.  None of us are looking forward to trying to get back on track on Thursday but the memories are all worth it!

A Few Bischoff Firsts

Well last week we had several firsts in the Bischoff household that are worthy of sharing.  I know I often share a lot of medical information and challenges, but it's important to share successes too!

First, Cole ate an entire bowl of cereal WITH A SPOON!  This is huge progress because he generally scoops the cereal and milk with is fingers.  Although he will eat food from a fork if you poke it, he does not generally use silverware unless you put the food on it.  Although we haven't seen progress with the fork, this is a huge step for Cole from a fine motor standpoint.  Way to go Ironman!

Second, Reagan started diving for rings at swim class!  She has been doing really well with her instructors and we are seeing great progress.  Although she is not ready to move to the next level yet, it was a huge step forward to be able to go under water with her eyes open and holding her breath to find the rings.  I am definitely looking forward to the pool next summer now!

Third, we had our first photo with Santa with TWO SMILING CHILDREN!  I truly questioned whether this day would EVER happen.  Although Cole was hesitant at first, seeing Reagan walk up to Santa and start talking put him at ease.  All Reagan wants for Christmas is a Frosty the Snowman stuffed animal and a Pinky Pie (My Little Pony) stuffed animal.  Cole whispered to Santa that he wants a toy taxi.  They are both excited about finding Fred the Elf every morning, opening their Advent Calendar door, seeing their cousins and grandparents and of course about Santa coming on Christmas.  

It's important to me that they understand that Christmas is not about receiving presents, but rather giving to others.  We adopted a two children from the Salvation Army this year and Reagan helped pick out their presents.  I'm not sure she fully understood that they wouldn't have presents if we didn't buy them, but I know she will get more from giving as she gets older.  They also gave presents to all the important people who influence their lives every week.  Reagan gave gifts to 2 teachers, 2 school staff and 5 therapists and Cole had gifts for 2 teachers, 3 therapists and 4 bus drivers.  I hope they all know how much we appreciate the hard work they put in every day to help our kiddos and keep them safe!

Neuropsych Eval Results

As I mentioned in my last post Reagan was fitted for a new brace and she has really liked wearing it.  She was excited about her new "running shoes" to fit the new brace and has declared that she can run "Santa fast" now!  It's great to see her so enthusiastic about it given she needs to wear it outside her pants now whereas her last brace could be hidden under her clothes.  It's called a Cascade 3.5 AFO that provides her a little bit more flexibility than her previous brace (Cascade Kangaroo).  You can see in this picture, Reagan has had numerous size and style support to walk.  She got her first orthotics (on the right side of the photo) when she started walking in June 2010 followed by a new brace each year since then.  Her therapists are a little concerned that the brace is too snug, so we will return to Orthotic Solutions next week to have it reshaped or possibly have a new mold made to ensure it provides her room to grow.  This one fits ok, but we're worried it won't last long given how well it fits now.
Given it was over $800 we want it to last as long as it can!

We had our first snow for this Winter season and the kids had a lot of fun playing in it.  Reagan insisted that we build a snowman and our snowman kit came in VERY handy!  Unfortunately given how wet the snow was (and how cold Cole was) our snowman was a little on the short side this time.  But it was great practice and she has checked him for melting every morning on our way to school.  Unfortunately today he lost his pipe, eyes, and buttons.  His hat, nose and scarf are still going strong!

This week we also had an appointment with Dr. Schneider with Fairfax Neonatal Associates to review the results of Cole's four hour neuropsychological evaluation.  Our goal with the evaluation was to better delineate Cole's current pattern of cognitive strengths and weaknesses and assist in treatment planning (education plan).  We met for an hour and a half to review the 10 page document that outlined her findings.  Although our discussion started with, "he did much better than would have been expected for a preemie who started with such a complicated medical history" it was still very humbling.  I think I went into the appointment with a few concerns but overall feeling like Cole is doing so well that I wanted someone to agree.  We had a very good conversation and I have several take-aways that will enable me to help Cole work on his challenges.  Unfortunately there were several areas of development that caused red flags.  Primary concern was his delayed fine motor skills given he scored at about 18 months for most tasks (he's 37 months).  Of secondary concern are the visual issues that create numerous complications for learning.  I have a home visit with his teacher tomorrow and plan to discuss some options for more occupational therapy time.

There is a longitudinal research study being conducted on preemies at Fairfax Hospital in which Cole will be asked to participate in July.  The evaluation will be very similar to the one we had with Dr. Schneider but we will not have as detailed a report from the research study.  Dr. Schneider would like to see those results, however, and compare how Cole is progressing on several of the areas where she is concerned.  This will provide additional details on whether he is able to overcome some of the developmental delays that he has.

In reflection, it was very hard to receive this information. I caught myself wanting to explain his delays and as I read the 10 page report I found myself getting defensive about his abilities.  So natural as a mom to want to protect our children.  And while there may be an explanation (e.g., vision, low tone), it's hard for any parent to be told their child has weaknesses and that he may or may not grow out of those.  It's very humbling.  You would think from where we've come I could be satisfied that he is doing as well as he is. But I find myself searching for ways to help him overcome these weaknesses.  I can't say that this evaluation answered the question of why he has trouble with some tasks that developmentally he should be able to do, but what I do know is that the intense love that we have for both our children is more than I ever could have imagined.  I know that I will do everything I can to advocate for our children.  I know that every hour spent at appointments and every dollar spent on supporting them is completely worth it.  I know that the road ahead is going to be challenging as we face more missed developmental milestones and I pray that I have the strength to face these challenges with grace and teach my children to do the same.