And in the blink of an eye, 2015 is a year of the past!

Wow, I can't believe I'm writing the last post for 2015!  It has been a fun filled year with a lot of adventures.  Our hope for 2015 was simple - less doctors appointments and no hospitalizations.  Unfortunately that wish didn't come true, but overall we are very blessed to all end the year healthy and happy!  And that alone is a true blessing.  This year we had 32 doctors appointments and 101 therapy appointments not including the 3 visits with vendors to look at assistive vision technology.  How do I know this?  Because if it weren't for the Notes App on my phone I would surely miss an appointment or forget to schedule one!  This year was a little heavier with appointments due to the addition of four new doctors to Team Bischoff: 1) Cole's Low Vision Specialists, 2) Cole's GI 3) Reagan's dermatologist and 4) Reagan's endocrinologist.  We are hopeful that things will settle down in 2016 since we don't expect to follow up with the last two and hope to have less GI appointments in the coming year.

We had fun celebrating Christmas with family.  We spent the usual Christmas morning with the Schweisthal family for quiche and fruit soup and spent the afternoon with the Bischoff's enjoying a turkey dinner.  Both kids fully understood Christmas this year which made it so much fun.  They truly understood getting AND giving and had fun thinking about gifts for other people.  And most of all, they loved playing with their cousins!  When I put Cole to bed Christmas night he said, "hey mom, do you think someone bought presents for Kendall in Heaven?" My sweet, sweet boy to think about his sister....she is never far from our hearts.

We also had a fun New Years Eve celebrating with the Golino's.  Usually we play the countdown from the previous year a few hours early and put the kids to bed.  This year Netflix had pre-recorded countdowns in different themes.  So we watched King Julien's New Year's Even Countdown at about 9pm.  Midnight is still WAY too early for a 5 and 6 year old.  They had fun with their noise makers and hats. I'm sure one day they will figure out our trick, but until then it's nice not having SUPER exhausted and cranky children on New Year's Day.

I feel like we blinked and 2015 is in the rear view mirror.  Johnny had a busy year at NCMEC.  He also started working every other weekend as a Battalion Chief for New Kent County Fire and Rescue Department (near Richmond) and took the Emergency Medical Technician (EMT) course.  He had a very intense Fall between both jobs, this class and ER rotations to fulfill his certification.  He passed the course final, State practical exam and the National registry written exam so he is excited to have EMT as part of his credentials.  In addition, he decided to apply to George Washington University's Engineering Management Doctoral program and was accepted!  What he didn't know is that all applicants would be required to take a Fall Calculus pre-requisite course which was every Saturday from October through December.  He passed with flying colors and will start the program in January.  Luckily he had vacation time between Christmas and New Years and we've had a nice relaxing week to just be together as a family.

I also had a busy year with work focusing my consulting business primarily on Boeing, Defense Information Systems Agency (DISA) and INHOPE.  I look forward to continuing several projects going into 2016 and love having the flexibility of working as a consultant so I can book appointments as needed.  Work took me to Lisbon, Portugal last month and I will be going to Amsterdam in January.  Although juggling the kids schedules while traveling is challenging, we have an amazing nanny, Megan, who watches the kids and I trust her implicitly.  That helps SO much!

As I send my 2015 family photo album to print and reflect on all we've done this year, I'm feeling very nostalgic.  We are so blessed to be able to give the kids what they need. And although it is often exhausting and stressful wondering if we are making the right decisions and advocating enough, it feels good to see how well they are doing.  This was a big year for both kids and we saw significant progress from both of them. We are hopeful to make 2016 a year without hospitalizations and a year more focused on fun and learning than on doctors and appointments.  We wish you and your family a happy and healthy 2016 and thank you for your continued support and prayers!

And with that, I leave you with the following quote that truly speaks to me: "You are braver than you believe, stronger than you seem, smarter than you think, and loved more than you know."

Humanware Prodigy Connect 12 and the Loupe "aka Mrs. Fuzzy Hands"

Well we had a fun week with the kids having their holiday parties, school PJ/movie party and delivering all the gifts to their teachers, therapists, bus drivers and other people who support them.  We also had an appointment at ITG to have a demonstration of the Humanware Prodigy Connect 12 magnifier that was recommended by the Department of the Blind and Vision Impaired (DBVI).  ITG is a distributor who would also be responsible for repairing equipment if there are issues.  So this relationship is an important one.  It was a good appointment and there were many details to consider.  However, it looks as though we may have narrowed down our choice and will be moving forward with requesting this unit from the Assistive Technologies Department in Loudoun County.  We are hoping they recognize the importance of the multiple capabilities this unit provides.  And although the $3900 price tag makes it a big decision, the comparable options are not less expensive for what they provide.  This device is a mounted Samsung tablet with customized software.  First, it allows Cole to place a worksheet under the camera and magnify it so he can see well enough to complete the worksheet.

Second, it does OCR, or Optical Character Recognition.  So you can place a book under the camera and it will digitize the information and read it out loud.  Cole was very quick to learn how to "pinch" to make the image larger/smaller and quickly learned the settings to change from Heather to Ryan.  When the person from ITG asked which voice he liked to listen to better he said, "I like girls silly."  It was very funny.  Third, in addition to helping Cole complete worksheets and read content, he will also be able to see manipulatives more easily.  Hands-on work is a big part of kindergarten where they look at coins, as an example, and learn how to tell the difference between them.  He has a hard time seeing the difference between a quarter and a nickel.  So this will enable him to put them under the camera and view them larger to see the detail.  Fourth, there are no more "chalk boards" in Loudoun County since every classroom has a promethium board.  All content that the class views on the board will be able to be viewed from his Prodigy Connect.  The fifth benefit is that it has a long distance camera that he can clip onto his desk and the image immediately shows on the screen.  So if he needs to look at something on the wall of the classroom (Reagan had wall words) he can use the distance camera.  And sixth, this is a Samsung tablet which runs on an Android platform.  Historically, assistive technology for vision has required software installation.  If you want the updated features, you would have to send the equipment back to the distributor for the new software to be loaded (therefore your learning tool is unavailable).  Additionally, you have to pay for these upgrades and some hardware may not support the new software.  With this device, the software updates are done over the air as they are done with a new phone software. This is a huge benefit and cost/time saver.

We have had two appointments with low vision specialists, one phone conference, and three appointments with technology experts.  This has been a long process and a difficult one since there are so many factors that require consideration.  The school has to decide what he needs now.  The advocate in me knows it'll be harder to justify a change later if what he has is "functional" so I'm also thinking ahead.  Then there's mom in me who is deathly afraid of how he will feel being different.  Whether his desk will have to be isolated to fit this huge device.  My friends tell me he won't notice.  The questions we've gotten about Reagan's brace tell me otherwise.  Kids are not mean, just inquisitive.  Kids at 5 feel different if someone doesn't like their sandwich. It's a "normal" to feel different and I know kids need to deal with that....just doesn't mean I have to like it.  I'm hoping he will be the cool kid who gets to have a "laptop" at his desk.  I've already decided we need to start thinking about a name for it.  More to come on that...

The hard part is not the logistics and implementation of the technology, but the reality that his vision really is this bad.  At his class party he needed to write his name on the present he made for me.  I knew they purchased the magnifier for him but hadn't seen him using it since the low vision appointment.  The teacher clipped the Loupe magnifier on his glasses to help him see to write.  The good news is that he smiles and it helps him.  But if it weren't for the parents watching him and asking me what it was I probably would have broken down into tears.  We are so blessed he has sight.  We are so blessed he is smart enough to want to write.  We are so blessed that he is not having to fight for life right now.  But that doesn't ease the pain in knowing that the days ahead will be hard.  He will be teased.  And so help me God if I hear one child make fun of my little miracle...let me rephrase...God give me strength to raise my child to know that he is a walking testament of your Glory...

And as we take this in stride, I'm already working on a design to customize the sticker on the Loupe.  Last thing I want is my son having a phone number written on his face.  Apparently he calls it "Mrs. Fuzzy Hands" so we are trying to come up with something creative.  If anyone has ideas please send them my way!  And just like that, school is done for the year, work is wrapping up and we're looking forward to some much needed down time over the holidays to spend as a family.  God is good...

A visit to Christmas Town !

We had the blessing of going to Williamsburg's Ford's Colony this weekend with Johnny's family.

We had a great weekend spending time with his brother Pat and sister Vicki's families and his parents.  There were sixteen of us and we all stayed on the same floor in beautiful condos.  The kids loved spending time with their cousins and being able to run between rooms.  And they were very excited that their elf Freddie and his new wife found us all the way in Williamsburg!  And yes, apparently he got married over the summer to Rose.  They are hoping the elves make it home tomorrow and don't have to stay with the next family who borrows the condo.

The weekend kicked off with movie night on Friday and they loved playing together before the weekend activities.  After breakfast on Saturday we started our day visiting Santa and Mrs. Claus at the club house.  They had funny hats for the kids to borrow and gave them candy canes.  Reagan was very excited to learn there are candy canes that aren't mint - she does not like mint and they had fruit flavored candy canes.  They were a big hit!

After visiting Santa we went to Colonial Williamsburg to walk through town and look at the shops.

The kids met Rosco the rooster and a mauper (a begger).  They got very good at watching out for horse droppings and watching for uneven roads.  Although we went to Williamsburg a year ago, Reagan definitely seemed to be more interested in learning about the people and the way they lived this time.  She learned about the pilgrims in school last month and I think that gave her more foundation to understand what she was seeing.  The people working there were very open to talking to the kids and were good at offering information and not just waiting for questions (the kids weren't really sure what to ask).  They also met a violinist who took a lot of time to show them her violin and explain the differences between the bow from that era and more modern bows.  Although they got tired walking, they had a lot of fun and hopefully learned something to take back to share at school tomorrow.

After a few hours in Colonial Williamsburg we headed back to the condo for lunch.  After a little down time we then headed out to Christmas Town at Busch Gardens.  Although we've been to Hershey during the Christmas season, this was our first trip to Christmas Town and it was very impressive!  The weather was almost 70 degrees so there were a lot of people enjoying the festivities.

As always, every part of the trip is fun.  Cole especially loved riding the tram to the park and had a 100 questions about how a tram is different from a train and why it's not called a bus.  I do my best to answer all his questions, but he definitely stumps me sometimes!  Reagan has been studying maps at school this week so she was very excited to get the map as we walked into the park.  She talked about Never Eat Soggy Waffles (NSEW) but she quickly realized that she needed a little more practice than just knowing which direction a compass leads you.

The kids rode a small horse carousel as we walked into the park and Reagan braved the twisting spider like ride with her cousin Alyssa.  Although all the rides weren't running, we enjoyed the shopping and the lights.  We were also able to see Santa working in his workshop in the North Pole and they had some pretend snow falling!  Apparently they have over 8,000 lights !  Wow, it was amazing.

We decided to go to Das Festhuas for dinner, which is a German dinner house with shows that play every hour.  We got there just in time to have dinner and watch a show and were lucky enough to catch a table right in the front!  After dinner we found our way back to the train station and rode the train back to the front of the park.  It was the ONLY thing Cole wanted to do from the moment we got to the park. He was very excited that we made time for it especially since it sounded just like a real steam engine.

The kids were wiped out by the end of the night and slept REALLY well.  We slept in Sunday, packed up in the morning and headed home to get ready for the week.  We had such a great time and loved creating some new memories.  Everyone is excited about one more week before a two week school break!  I'm looking forward to having my dining room table back from all the teacher, bus driver, and therapist gifts!!


Memorable Quotes:
I was tucking Cole in bed on Friday night and he said, "Hey mom, Kendall came with us right? Because she goes with us everywhere in our hearts right?"  I said, "yes honey, she's always with us."  He said, "Well if she is always with us and we carry her in our hearts shouldn't we just call our hearts  bags?"  I'm always amazed at the things he comes up with...I told him that was a good idea and that I hoped he had sweet dreams.

Physiatry negotiations and a little fun!

We've had a busy two weeks with a few updates.  Our latest appointment was with the physiatrist, Dr. Morozova to discuss the new brace for Reagan. She was happy with how she's doing but definitely concerned about the increase in falls.  We talked about Reagan having challenges wearing the brace and she decided perhaps we were moving to quickly.  Taking a step back was a little disappointing to me because adding more time later will definitely be a fight.  Reagan was given the option of not wearing it on weekends or not wearing it every other night.  She chose every other night - smart girl!  The doctor wants us having her put it on until she falls asleep and then taking it off at 10 or 11pm before we go to bed.  Unfortunately I think setting this type of lenience is going to make increasing time later much more difficult.  She said for Reagan to see increased muscle range she will need to wear it at least six hours every day.  So we will take baby steps and see how it goes.  She is wearing it every other night and will take it off in the middle of the night if her foot falls asleep (this is not uncommon for her).  I just hope we start to see a decrease in falls.

And with that, we've had the last doctor appointment for the year!  We do have another appointment to review vision equipment next week, but not more doctors.  We are excited to have all our appointments done until the second week of January and have already started enjoying the holiday. The fun started the day after Thanksgiving with a trip to Snickers Gap Tree Farm in Berryville to get our Christmas tree.  It has become a fun tradition and the kids love picking one, dragging it to the wagon and putting it up on our car.  Although last year I felt horrible I didn't pack gloves because it was FREEZING and this year the kids were in short sleeves because it was almost 70 degrees!  It definitely doesn't feel like December!

We also followed tradition by going to Photos with Santa at the fire station.  The kids always love seeing Santa there and we love not having to stand in line.  This year I was volunteering at the even so Megan got them dressed and brought them.  Luckily there were no concerns about Santa being "real" and he told Reagan she was on the AWESOME list - who knew that existed?!  Reagan has been very worried she wasn't on the "nice" list since she sometimes has trouble being nice to her brother.  I wish kids were as worried about getting into Heaven as they are being on the "nice" list!  But this is a good opportunity to talk about how important this is ALL year!

We also surprised the kids with Hershey Bears Hockey tickets.  We chose last weekend because it's the annual Bear Toss.  Several AHL teams have one day each season where everyone brings stuffed animals to toss onto the ice after the first goal.  All the animals are donated to a local Children's Hospital.  The kids were super excited about being able to throw the stuffed animals and see over 18,100 bears being tossed!  Cole was pretty excited about being able to see Cocoa again too...specifically he said, "I can't wait to tell him I'm five now!"  As you may remember Cole met him at a game last year when Cocoa gave him a puck.

Unfortunately Cole continues to suffer from pretty severe headaches.  Luckily we are catching the signs early and he is getting better about recognizing them and tell us.  We also give him medicine as soon as they onset to try to prevent the vomiting.  We are still discouraged that we haven't figured out what is causing them, but we are continuing to focus on more sleep and better hydration.

I have mentioned before that I love some of the things the kids say...so here are a few funny ones...

Reagan was crying about her brace one night and said she didn't want to wear it. He looked at her and said "It is what it is Reagan and you just gotta do what you gotta do."  He said it very lovingly, but I can't say it helped.  It does explain his personality.  Just like last week when our elf Fred returned from the North Pole.  Reagan left for school and he looked up at me and said, "Mom, he's not real."  I reinforced that he is real, can't you see him?  He said, "he doesn't move and doesn't talk and definitely doesn't look real." Reagan on the other hand decided we needed to buy him a coat because it would be cold flying all the way from the North Pole!

Here's another funny Cole story.  We were at dinner and our waitress told us her birthday is in December.  He looked at her very excited and said, "Cool, that's our when our leader's birthday is too!"  I said, "honey, what leader are you talking about?"  He said, "Well Jesus of course."  Too funny...

I wish you all the best life can offer as you enter into the holidays.  Family. Togetherness. Love, Hope and Joy.  And let us all remember the reason for the season!