Surviving the Unknown - Corona Virus (COVID-19)

We are five months into the year and I haven't had a single post!  And while it feels like the blink of an eye, a lot has been happening.  Most notably, the Coronavirus, or COVID-19 as it's being called.  Although coming to the US in January (or possibly earlier), it didn't spread enough to cause panic until March. Schools shut down March 12th and we are navigating unprecedented times as we all find ourselves trying to figure out what to do, how to act and what it all means.  I find it not dissimilar to 9/11, although then we are were united.  "United We Stand."  "Let's Roll."  And American flags EVERYWHERE.  And yet this disaster finds people polarized by different views on how it should be handled.  Throwing stones at those they think aren't handling the situation properly...as if there's a book to know how to handle this.  Our leaders are in a tough balance between safety and another Great Depression if this quarantine carries on too long.  Many families will struggle to recover and others may not survive the illness.

But that is not what makes me want to write today...not at all.  What makes me want to write is hearing the fear from people I talk to.  The desperation.  That fear of the unknown is what is truly hardest for people to cope with - if we were told this will end July 18th [insert any date], we would at least have something to work towards.  A light.  That is what this post is about - how do you find the light?

Reagan had 435 seizures before brain surgery after which we were told "her left side may be weaker".  Talk about uncertainty. What does that mean? We signed a waiver that we would not hold the hospital responsible if she died. Then THREE months of bed rest - I couldn't leave my hospital room.  No trips to the grocery store or Home Depot let alone going out of my room to see people.  But the difference was the direct impact on life or death.  These two little lives in my stomach were counting on me - the gravity of the situation was real waking up in a pool of blood every morning.  I got to leave my bed once a week to be wheeled for my sonogram. Unlike now, where we may or may not personally know someone who has been died from CV-19.  

And that is what this post is about.  How do you survive the unknown?  The feelings of fear and despair?  Especially when our goals and targets are ever changing.  Everyone deals with it differently.  Blogging definitely helps me to work through my thoughts.  I also had a calendar to count down the days - it gave me a sense of progress.  Faith is another big part - this has helped me lighten my burden.  Having faith that I will have support to make it through the hard times...even if (and when) the outcome isn't what I had hoped.

My father always said, when faith and hope have been lost, there is always love.  And so I ask you each to remember this. Many of us are having feelings of lost hope and possibly even lost faith.  But you can love those around you.  You can brighten someone's day.  To this day, I remember those who brought me flowers, cupcakes, knitting kits, magazines and dinner.  They gave me hope that I'd make it another day.  I went into the hospital in JULY and was due in JANUARY.  Imagine 6 months when you couldn't leave your ROOM!  And yet after losing Kendall, I would give ANYTHING to have stayed on bedrest past just a little bit longer...I would have made that sacrifice for her, but I wasn't able to.

Today we each have a choice to decide how we react to this fear and more importantly how our children will remember it.  And I BEG you, do not let it create fear. It feels like a burden now and will always be remembered, but "this too shall pass."  Give those around you the gift of kindness and show resilience. FAITH, HOPE and LOVE will go SO much further in life than feeling like you have lost something that was owed to you...like a graduation ceremony.  We are all making sacrifices for the benefit of our country and we are CHOOSING this sacrifice.  Between cerebral palsy, hydrocephalus, epilepsy, blindness, I could absolutely allow myself to feel bitterness at what I lost and some days I do but our world is SO much bigger than this one defining thing called CV-19.  Regardless of whether you think we should continue to stay home or believe we should reopen, find a way to see the beauty in what is around us and know one day this will be in the past.  Choose to see all the families who are finally at home together for dinner or out for a walk...together. Look for  where we are GOING, not what is lost.  Grieve with those who have lost, but remember that brightness will return.  I remember the feeling when Kendall died that nothing would ever feel happy again.  I don't remember when that changed, but time brought healing.  And we will heal from this too...if we choose to.

So we are reminded that we must remember the good times, move forward and have faith that normalcy will come again. The Bischoff's have had a fun year so far that included snow tubing, skiing, Great Wolf Lodge and Alexandria's St. Patrick's Parade.  And while we couldn't take a Spring Break trip and our 5th grader won't be able to see her friends for her promotion ceremony, I know there will be fun adventures this summer.  We may just need to get a little more creative! Wishing you all health and happiness.  Stay safe!

And in the blink of an eye, 2019 is a wrap!

Every year around this time I get a bit nostalgic.  I always print my annual family photo album by New Years Eve and love looking back at all the memories.  I'm always a little sad to say good bye to the year before, but hopeful for what the next year will bring.  We had quite the year in 2019.  We made it through with NO hospitalizations (not including outpatient procedures).  We had a flurry of doctors appointments this year - 24 total not including the orthodontist (7) or dentist (2).  The big religious milestones are behind us, Reagan started her last year of Elementary School, and we took the kids outside the US (to Canada) for the first time that they will remember (they were too young when we went to Bermuda). I know 2020 will bring all kinds of new adventures and challenges as we face the transition to middle school.  I've already attended an IEP middle school transition meeting.  I guess you can never start too soon!  We will discuss her class schedule at her next IEP meeting in March.

As each year passes, I think about the hurdles the kids have overcome and the ones yet to be seen. I try to squelch the fears of the unknown...like how we will modify keyboarding class and change after PE but still make it to the next class on time (dressing takes longer).  And although I try to anticipate these hurdles before they arrive, we magically seem to overcome them regardless.  Like finding an adaptive recorder last minute to ensure Reagan could pass all 7 levels of her belt test.  Who knew?!

I marvel that this year was by far my worst for keeping up with my memories in this blog.  I spoke to another mom at a New Year's Day party who said she journals even the little things - like favorite quotes and memorable activities.  It made me think that perhaps I shouldn't feel we need to have ACCOMPLISHED something for me to post an update.  Perhaps blogging SHOULD be more about the little moments, not the big ones.  Not a task, but rather a reflection on the little things that make life so amazing.  I often consider deactivating my blog, but every time I do, new challenges arise and people ask me to continue so they can hear what's doing on. I always hope that other families with similar needs follow my blog to help them, but it's hard to say.

As we wrap up 2019, I think about the little girl who hated having Happy Birthday sung to her because she didn't like the attention.  Facing the big stage as she was chosen to play Wacky Cat in the 5th Grade Musical Aristocats.  She has come so far!  She practiced every Monday and Wednesday for 2 hours from September to December.  She didn't complain once and really had fun practicing with her classmates and acting out her part as one of the alley cats.  She also participated in the morning news show for another month and started as a Leadership Mentor who goes to the kindergarten classroom to help the kids pack out at the end of the day.

We also had a chance to get away for a Hershey Bears hockey game. It's definitely one of my favorite Bischoff traditions.  Not only did they get to see Coco, but Reagan caught a game puck!  We love our annual tradition of driving up for a game.

And with that we close out 2019 and as I always say to my children, "don't be sad because it's over, be happy because it happened."

Niagara, A New School Year, Fall Fun and a new SLP

Wow, I'm WAY behind on blogging...AGAIN.  Doing some catch up today...

Niagara Falls
As summer was winding down, we decided to take a spontaneous trip to Canada with the kids to see
Niagara Falls.  We were planning to go last year, but after Johnny's knee surgery we decided that probably wasn't the best plan.  Although not their first trip outside the US (we took a Bermuda cruise when they were 1 and 2), it was the first one they really remembered. It was fun to see all the differences in a "foreign" country despite Canada being very similar.  We showed them different money, the streets signs using different measurements, and of course the accents!  We got an amazing room overlooking the falls and did all the usual touristy things.  The kids had a great time and it's definitely a fun family memory.

School is Well Underway!
This is Reagan's last year at Potowmack Elementary School and has Mrs. King-Woerner.  I'm
realizing that with 5th grade comes many fun opportunities not offered to younger students.  The first was that Reagan was chosen to be one of three students to star on the morning news show!  So she presented the news over video broadcast into all the classrooms or manned the teleprompter every morning for about 6 weeks and then the baton was handed to another team.  She was asked if she wanted to return, and of course is very excited about starting back in December for another 6 weeks.  She was also given the opportunity to apply to be a Leadership Mentor.  This involves going to a kindergarten class for about 8 weeks to help them in the classroom.  Again, this has been something that Reagan really enjoys.  She is also participating with the Battle of the Books again - she reads one book (selected by the librarian) each month for 6 months and meets with other 5th graders to discuss what they learned and draft questions about the book.  In February, the 5th grade will "battle" the 4th grade to
see who can answer the most questions correctly.  Last year she participated as a 4th grader and they won!  Let's hope she can keep up the winning streak.  It is such a creative way to make reading fun.  And lastly, she tried out for a part in the 5th grade play and will be playing an alley cat in the Disney production of Aristocats next week.  They have been practicing every Monday and Wednesday after school for 2 hours since the beginning of September.  She is very excited!  After a tough 4th grade year, it's fun to see her volunteering/applying for all these activities. It has provided her additional opportunities to show areas of strength amidst all the struggles she feels she is having.

This year has been amazing so far - she has a great teacher and the accommodations that were put in place through her IEP really seem to be helping her.  She has also been working with a private tutor through Illuminos for about 8 weeks now who is focused on the executive functioning piece of how we learn. Helping her develop better strategies for learning and finding ways to help her memorize her content.

The goal of school is learning.  So every parent must ask themselves, what does MY child need to learn.  A blind child needs braille.  A child who can not walk needs a wheel chair to access the classroom. You would NEVER think to withhold these tools to students who need them.  Similarly, how many of you read a map to get to a new destination?  Probably very few.  Many of us listen to Waze to provide directions.  Alexa reads me my weather every day.  More people every day listen to books during their long commute into the city.  I am realizing that while we TALK about different learning styles, it is important to really embrace them and seek out opportunities.  I've recently been introduced to the concept of "ear reading" - never thought about that before. Sighted people (non blind) generally "eye read".  But more and more people are using "ear reading" to learn.  Cole, although learning Braille, prefers "ear reading" using digital content on his iPad so he can see images and enlarge them but also rely on the sound of the person reading when his eyes fatigue.  We are learning that children with Dyslexia often learn better through ear reading as well.  One of Reagan's accommodations is a "read aloud" to ensure she is able to understand test questions and therefore be tested on her ability to know the information, not have it held against her that the Dyslexia makes it difficult to read the question.  She is having a great year - she feels positive about learning and we are finding ways to help her that allow her to see how smart she is!  This is such a blessing.

Cole is now in 3rd grade and was very excited to find out he has Reagan's teacher from 3rd grade, Mrs. Sherry.  He's having a great year with very good grades and better classroom regulation.  He has made a few new friends and is always willing to share in class.  His Braille instruction has continued this year with twice weekly for 30 min.  We made the decision to reduce that from 45 min to limit the amount of class instruction he is missing.  Unfortunately the number of Teachers of the Visually Impaired still has a shortage in Loudoun County so he TVI travels an hour between schools and therefore can only provide instruction certain days/times which prevents us from being able to control what subjects he is missing during that instruction.

Fall Fun 
On a fun note, Cole decided to have his birthday party at Dulles Airport.  It was so much fun - held in the terminal and the team there did such a great job.  Lots of fun airplane related activities including a demonstration from a drug sniffing dog and his carrier.  The kids got to watch the dog find the suspicious package, hide the package and see her find it and of course pet her after her work was done.

Cole also decided he wanted to do soccer again, so he took another skills class at Dulles Sports Plex.  He had a great time running around and meeting new friends.

Reagan decided she wanted to try travel lacrosse for the Fall so she tried out for the Cavaliers, based in Leesburg.  She made the team and had a lot of fun playing in three
tournaments this Fall.  We learned a lot about the tournament circuit...to include that parking is always a challenge, the food truck line is always really long, a cart is a must especially when you sign up to bring water and being warm is really important when you're sitting around between games for a long time.  Reagan also decided she wanted to get more serious about playing goalie (like her dad).  So she was goalie about half the time and is having fun picking up new skills...in addition to some bruises!  It was such a great experience though and she met a really good group of girls.

Speech/Language (SLP) Evaluation
One of the outcomes from the neuropsyc evaluation in July was a recommendation for a Speech and Language Evaluation based on numerous difficulties that were evident in the testing both from the neuropsyc and the educational testing at school.  I called for that appointment in July, Reagan finally got on the schedule to take the evaluation in October, and finally received the report last week.  The findings indicate that she has both a receptive and expressive language disorder that includes weakness in working memory which causes challenge in recalling sentences; phonological awareness; abstract thinking and auditory cohesion which is required to make inferences, deductions and abstractions to understand the meaning of passages.  While this is very concerning, it explains a lot of what we've been concerned about.  And while concerning, the good news is that Blue Ridge Speech and Hearing was able to get her on their schedule and she starts today!  Getting an appointment quickly for an SLP in our area is UNHEARD of...so while she isn't necessarily excited about it, I'm looking forward to seeing if they can build the strategies with her to understand how to help with receptive and expressive language.  It's just one more step in a large puzzle called life!  Her session went well today and she really liked Courtney so it's a great start!  I look forward to learning more about tactics we can build into our study habits.

And with that, I'm off to enjoy a few days with family to give thanks for everything good in our lives.  It's easy to focus too much on the challenges, but this time of year always reminds us to be thankful for everything that is right in the world.  I am thankful for a year without hospitalizations.  A year without any seizures.  A year without a shunt revision.  I am thankful for a year of answers and understanding.  And I'm thankful to soon move into next year and hopefully one that brings as many blessings as this one.  To all my friends and family, I wish you a happy Thanksgiving surrounded by the love and kindness.

Some summer fun, a 2nd Neuro Psych, Finalized IEP and New Orthosis

And just like that, we blink and summer is over!  And although the end comes with mixed emotions, it was a fun summer so we have many new memories to last a lifetime.

National Geographic Egyptian Museum
Those of you who know Cole know that he LOVES anything Eygptian and is saving for a trip to visit there.  We learned about a traveling exhibit visiting the National Geographic Museum in DC and took a trip to visit with my parents.  We met with the director and she was able to provide some "touchable" items for Cole since some of the exhibits are hard to see for him.  He was able to tour the museum carrying the Ankh of Life.  He was super excited to see all the artifacts.  The 3D virtual reality room where you walked into Nefratari's tomb was definitely very cool!

Hershey Park
It is also a tradition to take a trip to Hershey Park.  This year we decided to stay overnight at the Hotel Hershey so we could spent one day at the park and the the second day making our own chocolate bars, seeing a comedy show at Chocolate World and watching the new 4D Chocolate Mystery.  The trip was a lot of fun and for the first time the kids made it ALL DAY at the park!  Historically they are just DONE by about 3pm.  And not only did they last all day, they were roller coaster crazy!  They both loved Wild Cat, Lightning Racer and Wild Mouse.  It was a lot of fun and both broke their records for number of steps on their Fit Trackers.  Cole hit 16,475!  Needless to say they are excited about going back next year.  They are building a Chocolate Town and are rebuilding the entire front entrance of the park.  It will be fun to see it completed!

Washington's Mount Vernon
We also took a day to go visit George Washington's home at Mount Vernon. It had been YEARS since I'd been there and we all had a good time and learned a lot.  It's fun to see the kids getting to the age where they can make it through tours without melting down and wanting to go home.  The bribes for ice cream are still included, but it's getting better!

I had no idea the house is actually wood siding that they paint and then add sand to in order to make it look like stone.  Cole's favorite part was seeing the tombs LOL Reagan's was seeing the horse barn and carriage.  My favorite part was seeing Lafayette's bedroom and the key to the Bastille!  The tour involved a LOT of walking but was a lot of fun.  I would love to go back when we have time to take the sightseeing tour on the Potomac or getting the audio tour to learn more about the areas that didn't have guides.

Hyco Lake
We were also lucky enough to sneak away as a family to a lake house in North Carolina on Lake Hyco.  Although a very small town with very little to do, we enjoyed quiet time sitting on the dock, fishing, sitting in the hot tub, roasting s'mores, swimming in the lake and taking out the kayaks. Cole caught his first ever fish and both kids said the best part of our vacation was when Johnny caught a huge catfish. They definitely got a lot of practice catching and releasing!

A relaxing week with no schedule was exactly what we needed to gear up for a busy Fall for all of us.  Johnny will be teaching a Cybersecurity course at GWU, I have a few new projects for work and the kids will be busy with school and activities!

Neuro Psyc 2nd Opinion
I gave a long update in my last post about the neuro psych report.  Amongst numerous other appointments, part of that report was a recommendation for an MRI to determine potential issues with the corpus collosum.  After making the request to the neurologist he called and we had a long talk about the recommendations.  Unfortunately, he requested that we get a second opinion from a neuro psych at Children's, Dr Berl, who has a focus on epilepsy and post operative patients.  I called Children's back in March but the wait was a year.  Dr. Laventstein gave me her direct line and after a lengthy conversation providing background she agreed to squeeze us into her schedule the following Friday to review Reagan's case.  She was very knowledgeable and had a lot to share.  Long story short she believes our focus should be on executive functioning, reading comprehension, attention and self advocacy.  Most importantly, she and the neurologist do not believe there is a value in the auditory processing or visual processing disorders. So although we had the hearing test, I cancelled the vision exam, the APD and VPD evaluations.  We both agreed, however, due to the phonological processing issues that we should keep the speech and language evaluation.  I was able to get that scheduled for the end of September and plan to speak with the school speech therapist as well.  I am hopeful once we receive her formal report we will have additional guidance that may help us determine how to modify the accommodations and study habits to help make this year a good one.  One of the suggestions I am researching is an executive functioning coach that will help develop organizational thinking, skills and study habits to accommodate for the learning differences.  I have an interview with a potential company next week.  One of the other areas of focus is on self advocacy.  Essentially, helping give Reagan a feeling of competency where she may be lacking due to the help she has needed for physical tasks and teaching her to advocate for help with cognitive tasks as she has been for physical ones since birth.  It's interesting because the neuro psych said she believes some of the decreased testing results were due to Reagan having to focus on stabilizing paper with her left hand when writing.  Essentially a loss of attention on the task given the need to attend to the stabilization.  I definitely think she gets more tired when walking than her peers because she has to focus on moving her left side and lifting her left leg higher to prevent the toe from dropping and causing her to trip.  Definitely something we are going to try to keep an eye on and find accommodations when possible (like getting spiral notebooks instead of composition books where she has to hold it open).  More doctors, more ideas, less agreement, but putting it all together slowly...one piece at a time.

IEP Finalization
As you probably remember from my last update, we started the child study process in March.  Today, we had a meeting to finalize the IEP.  Yup, 6 MONTHS.  Luckily much of that was summer so I don't consider it "lost time."  However, I'm optimistically hopeful that we have some very well developed goals and accommodations that will help make this an amazing year.  Can't wait to see!

New Orthosis
And last but certainly not least, today we picked up Reagan's new night brace.  I am always amazed watching the kids perspective and approach change as they mature.  Reagan's first question as we walked out was whether she could wear it to school just once so her friends could see it.  When she was younger there were so many tears about wearing her brace.

When the orthotist marked the setting for the tightness of the strap we discussed how and why this brace is going to help Reagan stop tripping.  Then he marked the goal - how far he wants it tightened in two weeks.  Again, I marveled at Reagan's perspective.  After he took it off to measure her range of motion as a baseline, she wanted to practice putting it on by herself.  It's very hard for her to open the foot area with two hands but I'm sure she will find a way (or I will help her).  But once on, she pulled it to the goal line and said, "this is where we start."  She's a tough kid and I admire her persistence.  Obviously we had to explain why stretching takes time.

And with that summer, is behind us and we're starting school tomorrow!  Looking forward to this year!