The Bischoff's graduate from ECSE and Cole's Nystagmus surgery date

It's crazy to think the Bischoff's have had a child in the Early Childhood Special Education program for five years - since Fall 2011!  We've come a long way since that first day I dropped Reagan off at Potowmack Elementary School when she was a few months over 2 years old.  You have no idea how hard it is to send your 2 year old to a BIG elementary school with all those BIG kids!  You'd think after sending Reagan that sending Cole would have been easy ...it was not. Watching that bus drive away and hoping he would get there safely, not get lost, and get returned in the same condition as he was sent can make a mother crazy!

One of the big factors that helps me is knowing the teachers there truly have the best interest of the kids in mind.  Reagan had Mrs. Kee this year, who was her first teacher (long term sub) on her first day at Potowmack Elementary School in September 2011.  Both children have had Ms. Carolann and Ms. China and Ms. Torry and Ms. Chris for all these years.  So many memories after all these years!

Each year the kids are given an award at the end of year party.  This year Cole was given "Lady's Man" which is very fitting.  I think he can walk up to any stranger and strike up a conversation, although he usually prefers the ladies.

Reagan was also given an award on the last day.  She received an award for being a Math Master!  That is one area where she really excels so it was fun for her to get that award.

Another peace of mind comes from knowing the bus drivers. Mr. Bob and Ms. Miko have been driving the kids for several years.  For many years we have had different drivers in the morning and the afternoon.  This year we also have Mr. Rick and Mr. Dick who come in the morning.  Truly wonderful people who offer to transport the most fragile of Loudoun's children.  Many days they have a pretty tough job. Not only did they get Cole a Christmas present, they also got him this adorable end of year present!  It's a McDonald's gift card and a Finding Dory book with ocean scenes and fish characters so you can make your own skits in the ocean.

Although it has been nice knowing our bus drivers, I do have 5 this year to get gifts for so it will be nice next year when the kids will ride the same bus to and from school.  Cole is very excited about riding with his big sister...although I'm already preparing for Reagan to want to sit with her friends and how I'm going to explain that to Cole.  Luckily he has a friend from class this year who lives in our neighborhood so hopefully they can sit together.  Not sure I'm ready for him to ride with the big kids!!

It has been a long 5 years of learning to be flexible, understanding IEP's and learning the system.  But it is nice knowing the kids are able to be mainstreamed and in their least restrictive environment.  Five years ago we did not know if this would even be possible. And just like that, in the blink of an eye, Cole will be starting to full day kindergarten and Reagan will be starting second grade!

We are excited about summer although when I asked Reagan she said, "I'm excited about not having to wake up early, but I'm going to miss Mrs. Kee."  I would say that's a huge tribute to her teacher!  It's wonderful to hear.  I look forward to posting many pictures this summer that are NON medically related.  Praying we have a smoother summer than last year (Cole was admitted) and so far we are off to a good start!  We only have one doctor's appointment in July so I call that a huge success!  We also found out we were able to secure a 4pm therapy slot for Fall (in an earlier post I mentioned his OT left so we were back on the waiting list for an afternoon slot).  This is great news since Reagan is still on a waiting list for that slot since last June.

Unfortunately we did find out we are not able to get onto the surgery schedule at Akron Children's for Cole's Nystagmus surgery (this is a video link that explains the surgery) in August since the surgeon only has one day of surgeries scheduled and there isn't room for Cole.  That means his evaluation will be September 7th with surgery on the 8th and discharge on the 9th.  This brings great anxiety for me since it means he will miss the second week of school.  I recognize it's "just kindergarten" but I also think this is when kids start learning routine and expectations.  Unfortunately we don't have another choice.  The next big question will be whether we take Reagan.  Although I may be able find someone to watch her and get her to/from school, I am worried she will want to be there with Cole.  She always gets very concerned when he is sick so it will be a hard decision. It was really hard last summer when he was admitted into the hospital and she had to go to therapy. It's very cute watching her take care of him and help him. We plan to get through the summer and make that decision once we were closer to the date.  Until then, summer here we come!

Reagan Rose Turns Seven!

Wow, where has the time gone?!  Reagan turned 7 on May 27th, 2016.  She has been very excited for months to celebrate.  She chose a princess party this year at Sweet and Sassy Salon.  She invited just a few friends from school and a few from outside school to join her for SpaTacular party.  The girls arrived at the Sweet and Sassy in Leesburg and were able to pick any gown from the party closet.  After getting dressed they moved into the salon area to have their hair braided, make-up done (this was a first for Reagan!), glitter applied and nails painted.

After all the girls had their princess treatments they moved into the fashion walkway so each could be officially coronated as a princess.  They were explained the coronation process and exactly what a princess would need to do, including the wave, the curtsy, the crown/wand and receiving their official certificate.  After the coronation ceremony Reagan was able to pick her three favorite songs and all the girls danced at their coronation ball.  The staff there was SO much fun - young and excited to dance and sing with the girls.  After the ball they moved into their party room where they decorated flip flops and had cupcakes.

After the party was done they went outside to take a pink limousine ride back to Reagan's house for a sleep over.  The girls had fun painting each others toes, dipping fruit in the chocolate fountain, and playing in the basement on the monkey bars, drum stage, see-saw and swing.  Once they settled down into sleeping bags they watched an American Girl movie on Netflix and had popcorn.

The fun continued in the morning with mom delivering Dunkin Donuts and more time for the girls to run around and play in the basement.  I think it's safe to say they all went home tired!

I marvel at the statement I made before kids, "I will never get sucked into hosting crazy birthday parties."  I stand corrected.  I often wonder if their near death experiences shaped how I view birthday parties.  I will never know because I can't "undo" that...but I do know that seeing the smile on my daughter's face is absolutely priceless to me.  There are so many times I have had to convince her that therapy is good for her even though it hurts. That wearing a cast is good for her even though it is hot and uncomfortable.  That there are worse things in life than wearing a leg brace to bed.  Life is short and I love the feeling that there is something out there we can look forward to.  There is something in life worth getting excited about.  And that even for just one day, Reagan can feel like a princess.  Everyone always says, "don't blink or your children will be all grown up."  I recognize that one day my children will no longer get excited about birthday parties, they won't believe in fairies and will choose time with friends over being with their mom and dad.  But I HAVE NOW...I may not have later.  So I relish in making the NOW everything that makes us sit back and feel we have experienced life.

Whimsical photos by Tara Lesher Photography

We recently won a photo session with Tara Lesher Photography after she read about the journey our children have traveled.  It was so generous of her to donate her time and talent for these photos.  It was such a fun session and she is amazingly talented. I wanted to share her photos here - they are so amazingly magical. The last one of Kendall and Cole is especially moving - the longer I look at it the more I see...

Forever in our hearts...

Cole's neurology follow up, IEP meetings for both and Cole's first music recital

All has been calm...almost to the point of feeling uncomfortably normal.  It's just about now that Johnny and I usually look at each other and wonder when the shoe is going to drop.  We've tried hard not to have that perspective, but it is sadly predictbile.  With that said, it's nice to feel normal and I do have a few updates.  

Cole was back to see Dr. Lavenstein in May and that went very well.  He was impressed that Cole knows his planets although Cole was frustrated with himself that he forgot one the first time he recited them (and truthfully he was able to do this a year ago).  Boring appointments are good ones.  Dr. Lavenstein did reach out to a colleague in OH to see if he knew the nystagmus surgeon we are on a wait list to see and he actually takes his child to him.  So it was nice to get another confirmation that this surgeon, Dr. Mertle, is reputable.

In addition to neurology, we had Cole's annual IEP meeting at the school.  Unfortunately we lost his Teacher of the Visually Impaired (TVI) last month because she is moving so we are breaking in a new one.  So far Valerie seems very good.  She met with one of the kindergarten teachers and got some worksheets in preparation for next year.  She has been working with Cole to complete them 1) with his CCTV 2) at 120% magnification on paper and 3) at 150% magnification on paper.  He is doing pretty well completing the worksheets but so far we are not certain if the CCTV helps.  It will definitely take practice to learn to look at the screen while writing below the screen so it's possible over time we will see improved precision.  I have confirmation that I can bring it home for the summer so the good news is that his TVI is pulling together worksheets for us to use over the summer.  We also have confirmation that he will have full day kindergarten since he will qualify as special needs.  We look forward to seeing how next year goes!  We know he's ready!

As many of you may remember, this is the big year of Reagan's eligibility determination. She completed the testing and I sat through an eligibility meeting where everyone involved in the testing presented their results. I have been worried about this meeting for over a year because there was a risk that the team would determine she doesn't need the IEP and that a 504 could suffice.  The difference is that a 504 provides necessary modifications (such as adaptations in PE) but does not include goals.  As with so many experiences, my feelings were torn when I was told that the team felt she should continue with the IEP and she was found eligible for services.  Unfortunately she fell below average in several areas which they felt could be assisted with setting goals.  She will keep her eligibility status now for 3 more years.  After the eligibility meeting we then had an IEP meeting to determine her goals and services. It was determined by the team that she will drop back from PT services to PT consult only.  She was also reduced to 20 minutes of weekly OT and maintained her 30 min of resource support in the classroom.  Although I am pleased that she will receive the support she needs, it's still discouraging that she needs support at all.  But that's how the cookie crumbles and we're glad she will be tracked closely.

In addition to these educational goals, Cole also performed in his first music recital.  He has been taking music therapy classes with Tracey at A Place To Be and they hosted a performance at their school in Middleburg.  The range of students at the school is from very young (3 years old) to elderly students.  The premise behind the school is that every person should have A Place To Be.  Some patients are overcoming depression, have suffered a stroke, have Downs Syndrome or have Autism.  It was very inspiring to see how hard some of the students worked to perform.  Some were just simply trying to form words, some just trying to depress the keys on the piano.  One boy that Cole sees every week at his lesson was very nervous and wouldn't come into the room.  When Cole saw this he went over and held his hand and said, "come on friend, it's ok, let's go together." It was so sweet! Cole was nervous too but told his cousin beforehand that it was ok because Kendall was there to help him.  Oh be still my heart...  He sang a song that he helped write called Spring Time to the tune of Sugar.  We couldn't have been more proud of him for standing in front of over 40 people and singing loudly!

In addition to his recital, Cole also tested for his TKD yellow belt this month and passed!  He has been taking TKD as a "cub" since November 2014 and started the older kid classes January of 2016.  He is very excited about getting his first big trophy and his "big" yellow belt!  Reagan also tested this month and is now a Super Brown Belt (then comes red, bo-black then black). We are so proud of her continued dedication! I also tested this month and I'm now a purple belt!  Reagan challenged me to sparring tonight in her bedroom before bed and was surprised I could keep up with her! They both continue to take swim classes and Reagan will wrap up lacrosse this weekend.  With only 10 days left of school they are very excited for summer!