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.

Playing Catch Up

Wow, I can't believe how behind I am in journaling!  I have been very busy with a contract with Boeing that is taking all my time.  It's almost Thanksgiving and I haven't even posted pictures of Halloween yet!

The kids had a fun Halloween dressed as Rosetta (Tinker Bell's Garden Fairy friend) and Captain Hook.  They went trick-or-treating with dad on our street and then came back to hand out candy.  Reagan loved commenting on everyone's costumes and giving them candy.

We've had a fun month with both kids taking swimming class at the Tom Dolan Swim school. They think it's a lot of fun and wish we could go every day.  They are both becoming more confident in the water so we are achieving our core objective!  Reagan was evaluated last week for a potential move to the next level but we are going to wait a little while.  Although they like being in class together, I think they may pay attention a little better if they had separate classes.

Reagan continues to take horse back riding classes.  Unfortunately she had her first fall last week.  She was a trooper, though, and got back up on the horse to finish out her lesson.  She had a great class yesterday and really enjoys it.  Cupcake is her favorite pony but she also rides Max.

Reagan was also fitted for a new orthotic for her leg at the low-low price of $887.  We went to Orthotic Solutions and Reagan got to pick the colors.  Because it's a custom fit, they make a cast mold and then we go back to pick it up next week.  We also had an appointment with a representative from Bioness to re-evaluate Reagan for electrical stimulation.  This would replace the custom orthotic but would be more proactive in nature.  The goal is to rebuild the connections in her brain so long-term she doesn't have to wear a brace.  The doctor and Bioness rep both felt Reagan is an excellent candidate and it worked well, but Reagan was not tolerating it very well.  It essentially sends a shock to her leg every time she picks up her foot which triggers her brain to lift her toe (so she doesn't trip on it).  As a team we decided to move forward with determining if insurance will cover it but may need to wait until she is able to tolerate the device.  It could take up to a year to work through the Medical Review Board at AETNA to get authorization since it's about $5,000.  We are hoping by that time she may be ready for it.

Cole Turns Three!

It is always with mixed emotions that we celebrate the twin's birthday.  When we planned the Disney trip it was intended to be on Cole's birthday so he could celebrate with Mickey.  Given he had one of the best birthday presents a kid could hope for we didn't plan a birthday party at home with his friends this year.

Daddy and the kids picked me up from the airport (coming back from the conference in TN) and we went to Red Robin for a birthday lunch, the obligatory singing from the wait staff and an ice cream sundae.  We went home after lunch so everyone could take naps and then, as with years past, we celebrated with a family picnic, a campfire and by sending a lantern to Kendall in Heaven.  A bittersweet day for us but so wonderful to spend it together as a family doing what we love.  The sunset and weather were absolutely perfect which was welcomed after last year's sketchy drizzle.  And of course Cole celebrated with his favorite food (a Schweisthal tradition) - pizza!

What truly matters in a birthday is not the presents or the party, but a celebration of birth and appreciation of having another year together.  We are so blessed to be able to spend every day with our little ironman and look forward to the next year!

I would like to dedicate this journal entry to our beautiful baby girl, Kendall Kaye.  You were with us for what felt like the blink of an eye and yet you've impacted so many people with your time here on earth.  I am thankful for the people you have brought into my life and for helping me feel such a deep sense of love for a daughter I barely knew.  A piece of my heart will always be with you and I hope you know how much your mommy, daddy, big sister Reagan and baby brother Cole love you.  We blow you kisses every night and I pray that you look over us in the way only an angel can.  I yearn for the day that we can be together again and that I can hold you in my arms and tell you everything will be okay.  

My dearest Kendall Kaye...

In life I loved you dearly,

In death I love you still.

In my heart you hold a place

no one could ever fill.

If tears could build a stairway

and heartache make a lane,

I'd walk the path to heaven

and bring you back again.

...We love you sweet baby girl

Safe in His Arms ~ Forever in our Hearts

NANN Conference and Preemie Parent Alliance

After an amazing trip to Disney, I started to refocused and prepared for my trip to Nashville, TN.  I was asked to share my story about Kendall at the National Association of Neonatal Nurses Conference just days before the twins 3rd birthday.  Although honored to present, this time of year is especially difficult as the memories of some of the hardest days of our lives are brought back to the surface.  The goal of the presentation was to share the scenario, ask nurses to volunteer to roll play how they would have handled the situation and then have me conclude with the actual events that took place.  My goal was to share how difficult it was to take Kendall off the ventilator as Cole was going into cardiac arrest and to provide ideas for what I think could have helped during this challenging experience.

Although not a flawless presentation, I know from the tears in the audience that my story was understood and hope that sharing it gets easier with time.  If I am able to help just one nurse who can in turn help just one parent, then my experience is worth every moment of reliving that heart wrenching experience.  I have been asked to present again at the National Neonatologists Conference in February and hope I can share my story in a meaningful way once again.

In addition to supporting the presentation, I represented Preemies Today at the Preemie Parent Alliance trade show booth that was part of the conference.  All 23 organizations that are part of the Preemie Parent Alliance were formed by preemie parents to support other preemie parents.  I spent five days with an amazing group of men and women who shared their stories willingly and openly.  Each story bringing it's own unique experience to the journey of being a preemie parent.  After the NANN Conference the Preemie Parent Alliance had a separate meeting to share best practices for managing our individual groups and gathering new ideas for supporting other parents.

Disney Vacation Day 6 ~ Hollywood Studios here we come!

What a whirlwind! It was Friday already and it was our last day at the park.  We decided to start at Hollywood Studios and although we got an early start, we waited a long time for a bus and ended up at the park a little later than expected.  We started with the Little Mermaid show followed by the Disney Junior Show. Both were excellent and a big hit with the kids. They even got autographs from Jake and got some gold de blumes! Reagan also wanted to visit the shops and fell in love with Eore. When I said, "are you sure that's what you want? He looks sad." She said, "well I know, he's sad because he doesn't have a mommy! We need to buy him so he's not sad." You can't complain about that logic.

We had a bite to eat at the Sunset Market and then decided to head back to the hotel so the kids could nap before our big night at Mickey's Not So Scary Halloween Party.

Daddy decided to nap with Cole and Mommy took Reagan to the pool for an hour. After a quick dip in the pool the kids got dressed in their costumes and we headed to the monorail for dinner at the Magic Kingdom and Mickey's Not-So-Scary Halloween Party.  Our last dinner was at the Liberty Tree Tavern, a family style dining. Then the kids did a little trick-or-treating and rode a few rides. Cole went back to his two favorites with Daddy, the Carousel and the Dumbo ride. Reagan never turns down the carousel but chose the roller coaster over Dumbo.

After a few rides we headed back to Main Street to watch the Halloween Parade. Although there was a significant rain delay, it finally made it's debut and it was totally worth the wait. And much to Cole's excitement, the monorail was broken yet again, so we took the boat back to the hotel and were able to watch some of the fireworks from the water. A beautiful ending to an amazing week.

Disney Vacation Day 5 ~ Animal Kingdom here we come!

Day 5 we decided to go to the Animal Kingdom while the rest of the group went to Epcot.  Although it was pouring down rain the entire bus trip there, the clouds broke and it ended up being a nice day. We walked around for a little bit and then decided to have lunch at the Pizzafari before going on the Kilimanjaro Safari ride. Reagan's class in preschool has an owl for a mascot so we took Ollie all over Disney World with us.  She was especially excited to see the owl mural in the Pizzafari.  It was fun for the kids to see some animals we don't have at our zoo like the hippos, rhinoceroses and warthogs. Cole was thrilled by the bumpy ride in a cool jeep-like truck. 

After the safari ride we let the kids look around the shops and Reagan decided she needed a stuffed Simba. She's all about the stuffed animals! Cole got a pirate Mickey shirt and matching hat/ears.  Then we went a show called It's Tough to be a Bug which was a 3d show with intense sounds, fog, pitch black at times, squirting water, bees that sting you in the back and cock roaches that crawl under your legs. Both kids thought it was a lot of fun although definitely on the scary side.  Then we wandered into Dinoland and rode the Triceratops ride. After a fun visit we decided to head back to the hotel to see if Cole would lay down for a nap.

Dinner Thursday night was at 1900 Park Fare in the Grand Floridian with Cinderella, Prince Charming, the Fairy Godmother and the wicked step sisters. The girls were dressed in their princess gowns; Abby was Snow White and Reagan was Aurora.  Once again we clamored for our autograph books and took lots of pictures.  Cole even got a kiss on the forehead from Cinderella!   

After dinner we headed back to the hotel so the kids could swim in the pool. Unfortunately Cole never did take a nap so he and Daddy went to the room after swimming for a little bit and Reagan and Mommy watched Rapunzel on the big screen on the beach in her PJs, playing in the sand with Abby, watching fireworks and eating popcorn.

Disney Vacation Day 4 ~ Magic Kingdom Take Two

On Wednesday, Day 4, we went back to the Magic Kingdom in the morning. We met almost all of the princesses and although Cole loved seeing them, he begged to ride the carousel. Reagan loved giving them hugs and asking for their autographs.  Both Reagan and Cole have autograph books.  We rode the carousel, the Dumbo ride, met Tigger and Poo and ate lunch at the Starlight Cafe in Tomorrowland. After lunch daddy took Cole back to the hotel for a nap and Mommy and Reagan stayed with Abby and Patti to ride the Small World ride and the Little Mermaid.

After a fun filled day in the park we returned to the hotel to change and go to dinner. Dinner was at Chef Mickey's.  The kids loved meeting Minnie, Mickey, Pluto, Donald and Goofy.  We also had a cake delivered and sang Happy Birthday to Cole to celebrate him turning THREE!  After dinner we got back on the monorail to the Magic Kingdom to watch the laser light show on Cinderella's castle and the fireworks.  We also rode Aladdin's magic carpet ride and the Haunted Mansion. And with two exhausted kids we made it back to the hotel about 10pm and both slept really well!

Disney Vacation Day 3 ~ Magic Kingdom here we come!

Another magical day! When we woke up Tuesday it was still raining so we took it easy in the morning. I brought breakfast back to the room and we had Mickey waffles in bed and watched the original Mickey cartoons.  It's amazing how much they have changed! We then wandered over to the Grand Floridian to see their shops.

The Coullahans arrived just in time for lunch so we had a quick bite to eat at the hotel.  Reagan and Cole were so excited their friends had arrived!  We headed for the monorail after lunch to go to the Magic Kingdom.  Luckily the rain gave way to a hot and sunny day. The kids had a great time meeting Mickey and Pluto with barely any line at all. We saw several parades, rode the Little Mermaid ride, did a little shopping (Reagan really wanted Lady from Lady and the Tramp). Then we went to Tony's for dinner. After dinner we took the boat back to the hotel. Cole didn't nap so he stayed in the hotel room with Daddy to get to bed early and Reagan and I took a quick swim in the pool before getting to bed.

Disney Vacation Day 2 ~ Visit from the Azzinaro's

Day two started with some play time at the pool and beach. Reagan built a princess sand castle and Cole loved throwing the sand. He especially loved hearing the horn from the boats as they came in to the hotel dock and left for the Magic Kingdom. After some play time we cleaned up and had lunch with Johnny's cousin who lives nearby, Donna and her husband Ronnie. They were so sweet to brings the kids lots of activity books to play with during lunch. We ate at the Kona Cafe at the hotel and enjoyed catching up. By the time lunch was over it had started to downpour and continued to rain all the way through Tuesday. Not knowing what to do, we took a ride on the monorail to waste some time and the kids thought that was fun. 

Then we cleaned up and headed on the bus for Downtown Disney for our dinner reservations at Raglan Road. It was wet and miserable the entire night, but we had ponchos and a rain cover for the stroller so we stayed relatively dry and made the most of it. We walked around downtown looking at shops. Reagan really wanted a Minnie Mouse and we had her look at all the shops and decide which one she wanted. It was an easy decision for Cole - the mouse. For Reagan she needed to decide which outfit she wanted Minnie to be wearing.  Who knew you could buy Minnie in all the princess outfits?  Not I!

The restaurant where we ate dinner is an Irish Pub that had live dancers and musicians. Unfortunately Cole didn't get a nap so he fell asleep in the stroller after we got to Downtown Disney. But we were glad he got some much needed rest. Reagan was asked if she wanted to go up on stage with several other little girls and they danced together with the Irish dancers. She thought that was great ! She did a really good job and even got her first signed autographs!

After dinner we let the kids pick out stuffed animals and we headed back to the bus for a cold and wet ride back to the hotel.

Disney Vacation Day 1 ~ Visit from the Majors

After 40 years of anticipation, we hit the road for Disney! The best part about taking two young children is that every part of the adventure is fun. The kids loved the train at Dulles Airport and Daddy knew to get us on the front car.  They both loved the plane and thought it was going really fast.  This was Cole's first trip on an airplane, but Reagan has already flown to Florida and Minnesota (twice).



After landing in Orlando we got on the Disney Magical Express Bus and headed to the Polynesian Resort. Again, another big winner sitting in the front seat of the bus and getting to ride the elevator at the hotel several times every day!  The Magical Express Bus was very handy because after we checked our luggage at the airport we didn't see it again until it was delivered to our hotel room.

Unfortunately our room wasn't ready since check-in wasn't until 4pm (and it was noon).  Also, our luggage hadn't arrived.  But we had a quick lunch at the hotel and then my first best friend from kindergarten, Aline arrived about 1pm.  She and her family lives in Tampa and they came to play at the pool for a while so we could catch up. She was with her husband Eric and three children.  Luckily she had an extra bathing suit so the Reagan could swim. Our room was ready shortly after they arrived and Johnny took Cole up to nap. After a couple hours of swimming the storms came through so we took the kids to the hotel arcade and let them play for a while before having a quick dinner at Captain Cook's quick service restaurant at the hotel.  We were most impressed by the $19 refillable insulated cups that had RFID chips inside to let the machines know they were "paid for" and to activate them to fill with drinks.

After saying our good byes, Johnny and I headed to the beach with Reagan and Cole where the hotel staff was roasting marshmallows and we let the kids play at the beach. All-in-all a relaxing first day!