1st Day of School, New Piano, Retainer is IN and Akron Children's Here We Come!

First Day of School

Wow, it's already back to school time!  We had a great summer, but I think all of us were ready of the structure of the school year to return.  Reagan was very excited to start 2nd grade at Potowmack Elementary School in Mrs. Arthur's class.  Cole was excited to start Kindergarten in Mrs. Bretcko's class.  This will be Cole's 4th year at Potowmack so it's old hat for him, but he was excited to have three kids from preschool in his class.  Both have completed their first two weeks and are adjusting very well.  Cole is in full day kindergarten so his day is a little longer than last year.  He comes home a little tired by Friday afternoon, but is doing much better than I expected!  He has a calendar of homework and we are working at keeping up with it.  This is new for him and will take a little adjustment especially since some tasks like writing are very hard for him.

I'm not sure who stole our oldest child, but the little girl in her place is very excited about reading, doing science experiments and finishing her homework as soon as she gets home.  It is such a shift from last year and a pleasant surprise.  I am soaking in the excitement and encouraging it the best I can.  It's definitely hard to juggle them both doing homework at the same time, helping both and stopping Cole from chiming in on Reagan's homework (which he loves and does easily).  She is learning ordinal numbers and he keeps up easily.  I can already tell it is going to be a fun year!

Old Piano, New Purpose

Some of you may have heard we recently adopted a piano.  After going with me to Cole's music lessons Reagan decided she wanted to try taking piano lessons.  She is having a lot of fun and it has been a very positive experience.  Using her left hand is very hard, but she does her best and we are seeing improvement!  Her teacher, Jessica, is amazing and has just the perfect balance of being supportive and encouraging.  I'm so proud of Reagan.  Upon mentioning the lessons to a friend, she asked if we would be interested in inheriting her piano.  We were thrilled!  The piano is a 1954 Wurlitzer spinet and looks wonderful in our formal living room.  I've known my friend, Stephanie Bridgewater, since KINDERGARTEN!  The piano was one she learned to play on, as well as her father.  It was purchased by her grandmother who started playing after an accident playing on a hitching post (for horses).  The game involved standing on the rope (between the posts) and the kids would pull them tight and the person on the rope would go flying - she went flying and broken her arm so severely she needed surgery and it left a very prominent scar.  The doctors suggested she play piano to help strengthen her hand, and that is how she started generations of piano players!  When Stephanie shared her story it just felt like this was the perfect piano for Reagan.  I love the history and pray Reagan continues to see progress and loves to play.

Orthodontia Journey Begins

A year ago the dentist suggested we visit an orthodontist.  I called and they recommended we wait until after she was seven.  We started with a new dentist (after 40 years!), Dr. Kim and he also encouraged us to see an orthodontist.  We visited Wiger Orthodontics and the doctor said a palate expander would really help resolve her cross bite.  Unfortunately they said if we wait that her jaw bone could develop longer on one side.  Reagan was OVER THE MOON excited about this.  We had to wait one week to have the mold made and then two weeks for the retainer to be made. She asked almost daily when she was going to pick it up.  I was convinced that upon pickup she would change her tune.  Nope.  She picked glow-in-the-dark hot pink and as you can see in the picture she is still excited!  She picked it up September 7th, 2016 and has worn it consistently since we got it.  We have a key and "turn" it once or twice weekly.  She has already asked me to turn it.  Hmm...over achiever?  Perhaps :-)  Given we have a $1500 lifetime coverage on orthodontia work we opted to pay out of pocket at the low-low price of $1300 (instead of the $4300 that they would have billed insurance)!  Yikes, just the beginning of a very long journey.  We had a very serious conversation with Reagan about where to put the retainer and where NOT to put it...like on a lunch tray at school.  Reagan is very responsible, though, and I know she will take good care of it.  Apparently dogs love retainers.  We are hopeful the rule, "if it comes out, it goes in (the case)" will prevent it become victim to Shelby's toothy mouth (the dog's).


Baseball !
We went to a NY Yankees game at Camden Yards last weekend and I sighed as I thought about how normal life feels right now....in a good way.  I stress about the things other families stress about like retainers, the dog getting dirty and homework getting done.  Although Cole still has the occasional headaches and threw up the other night (all over the bed, pajamas, wall, and carpet), we explain them away and try to go back to living.  There are always stressors "behind the scenes" like ensuring his teacher knows how to set the accessibility settings during computer lab or even knows they exist.  I still stress about Reagan having a seizure - crazy we haven't raised her meds since KINDERGARTEN.  The neurologist seems to think her level is high enough but she has had a LOT of weight gain in two years.  Anyway, life is settling down and we are enjoying the feeling of not having so many doctor's appointments.


With that said, we are now gearing up for Cole's second eye surgery.  The surgery will be done at Akron Children's Hospital by a world renowned opthalmologist who specializes in nystagmus surgery.  For more information on the surgery feel free to watch a short video, although it is not for the faint of heart.  We will drive up Tuesday, September 20th and will return home the 23rd.  Day 1 is testing and surgical prep, Day 2 is surgery, and Day 3 is a final check up and discharge.

We are very thankful that Johnny's parents have offered to keep Reagan so she doesn't miss school.  We've been on a wait list for this surgery for almost a year and unfortunately were not able to get an appointment over the summer (that was our hope).  Reagan is SO excited about her sleep over and asks every day when she can start packing.  Cole on the other hand is starting to get nervous and ask a lot of questions. "Mom, will they take my eyeballs out of my head? Will my eyes get bigger?  Will they look different or be a different color? Who is doing it? Why do I have to have surgery? Do they use a drill in my head? How do they get into my eye?"  We are very upfront with him but it's hard for him to understand.  The vision he has is "normal" for him so when I asked if he has trouble seeing things he says no.  I've been in touch with several people on a Facebook group for Nystagmus and most don't know that their eyes shake or wiggle.  Anyway, we are gearing up mentally and praying that the doctor believes the surgery will help.  Only time will tell!  I will update once we get settled in at the Ronald McDonald House !

Memories are strong even 7 years later...

Seven years ago today we spent 9 grueling hours in the surgical waiting room at Children's Hospital. All we knew was that part of Reagan's brain did not develop correctly and needed to be removed to stop the seizures.  

What I always find interesting is how vivid the memories continue to feel even after all these years. I remember kissing her good-bye and not knowing if I would see her alive again. I remember walking into the room and thinking at 2 mos old she looked so small in that huge bed. I remember her body looking so lifeless and being angry she needed so many IVs that they even had one inside her diaper. I remember thinking that seemed so wrong. I remember my heart aching to pick her up and tell her it was going to be ok but being told I couldn't. I remember having to wait to pick her up for what felt like forever. And I remember when I could finally hold her not wanting to let her go...sitting up all night in a chair holding her and just weeping about the unknowns of the future. 

Each year the pain lessens as we see the amazing progress she is making but there is always a stark reminder of our past and the road ahead. Today I'm more hopeful than last year and I pray next year will feel the same. What I do know is that we are blessed to have two amazing children who never give up, who live life enjoying the moment, and who are happy and smiling. And truthfully, happiness is what we all want for our children and what we are all trying to achieve. And although this ride we call life goes up and down, I'm learning that the true meaning is to enjoy every day we have together and make the most of it.

Visit to the Physiatrist, Making Music and a Busy Tooth Fairy!

Visit to the Physiatrist
I am happy to say it has been a very slow year for doctor's appointments.  I'm intentionally cutting back the number of appointments and just choosing to space them out more.  So far this hasn't gotten us into trouble and it really feels good.  Cole is still doing weekly occupational therapy and weekly music therapy, but just cutting back the doctor's appointments has been helpful in feeling more normal.

We had a good visit with Dr. Morozova although Reagan was hopeful the doctor would say that since she hasn't been falling she no longer needed to wear the leg brace.  Unfortunately that was not the case and she feels strongly that Reagan needs to continue to wear it to prevent her leg getting tighter.  She was very happy to hear how well she was doing in all her activities and agreed that for now she is ok without occupational therapy since she has so many extracurricular activities.  We've talked about having Reagan participate in the bi-manual therapy camp at Columbia University in NYC next summer but she said she's not convinced it will be worth the time and money (it's extremely expensive) over and above the activities we have her doing now.  We decided to discuss in more detail at our next appointment in six months.

Piano Trial was a Hit!
In addition to Music Therapy through A Child's Place, Cole has been taking music lessons from a school music teacher in Leesburg.  He has really enjoyed the sessions and is making great progress in understanding music concepts and rhythm.  Reagan has been going with me to these sessions and started asking when she would be able to take lessons so I spoke with Jessica and we set up a trial lesson after Cole's last week.  I was worried about her getting discouraged with her left hand but she did GREAT!  Jessica thinks she is ready to try it and she is willing to teach right hand only if necessary but will plan to encourage the left hand to at least start to try to play the keys.  We are super excited that she's interested in this since it is the last of the three things the neurosurgeon suggested we try with her when she was diagnosed with left sided hemiplegia and Cerebral Palsy after her surgery.  We plan to start lessons and I can't wait to give updates!  Next up...getting a piano!


Hershey Park
Between the beach and camp this week we had a week off to decompress and have a schedule-less week.  The kids decided it would be fun to go to Hershey Park and we did!  We went with my friend Lisa and her kids and they had a blast.  Reagan was finally a Hershey bar and was so excited to be able to ride the big roller coasters!  And Cole was absolutely satisfied to stick with the Reese's rides.  The park was so empty we were able to ride the swings (while waiting for Reagan to go on the Comet) four times in a row without getting off!  My favorite part of the day was when we decided to go on the log ride and it was the first time Cole had gone on any type of roller coaster where it goes up and up and up.  As we were going up he looked over and said, "Hey mom, if we have to go up this much does that mean we have to go down next?"  SO cute.  Yup!  He loved it and said it was his favorite part of the day "landing in the water city down below."

The Tooth Fairy has been Busy!

In addition to all this fun, Cole also lost his first tooth on July 23rd, 2016!  He was so super excited - the first thing he said was, "it's like having a tunnel in my mouth."  Although he was very confused about the chain of events.  He went to bed and kept saying, "she hasn't come yet".  Then he wanted to know how long she was going to stay.  And although Reagan was set to have her tooth pulled right after his, she was too nervous after seeing the blood in Cole's mouth.  Needless to say, it was the first thing she asked her daddy to do the next morning and just like that, she lost tooth #5 on July 24th, 2016.

And as if I needed MORE on my plate, I had a weak moment that has cost me dearly.  We were purchasing mulch one day a few months back and Reagan asked if she could buy some fairy dust they were selling at the nursery.  At the time I thought, ok, no big deal.  We'll sprinkle it on the rose bush her grandmother gave her last year and it will make the Garden Fairy take extra special care of it.  BUT...in true Danielle style I suggested we get a fairy house.  What Was I THINKING?  So it has taken months (mostly due to procrastination) but we finally put together the house, yard, mailbox, flagpole and bench.  She wrote a note to the tooth fairy and let her know that she can move in there when she comes to pick up her tooth.  Unfortunately, she now expects this fairy dust to actually make a garden grow around the house.  When we got back from running an errand today she said, "Oh no, our dust didn't work!"  When I asked why she reminded me that flowers should be growing.  As if our Christmas elf isn't enough, we now have a fairy moving in.  But I know Reagan will be excited to find flowers and a note from her fairy when she gets up in the morning.  The things we do for kids!!

Bischoff Vacation to OBX !

Wow - what a fun week at the beach!  We were so blessed to be invited to the beach with Johnny's family...all 21 of us!  We had a stunning home right on the beach in Duck, NC in a neighborhood called Four Seasons.  It was a week filled with no schedules, nothing we had to do, and lot of time with family.  It's so fun watching the cousins playing together - there are 5 in the middle/high school/college age and then another 6 in the seven and younger age range.

The first morning we decided to show the kids how a sunrise a the beach looks.  As we walked into their room to wake them at 5:45am they were already awake and peeking out the window.  It was a beautiful sunrise and they thought it was really neat how one minute there was no sun and the next it had appeared.  Because Cole is so interested in planets we've been trying to explain the Earth's rotation, but it's a hard concept to grasp.  I think this helped slightly as he could see it coming around the edge of the Earth.

It was a rather hot week with several days in the high 90's but we had a pool at the house so we were able to spend a little time at the ocean and cool off in the pool.  We also went into town a few times for the obligatory shopping excursions for t-shirts and a visit to Nags Head Hammocks.  Unfortunately after a full day in the pool and at the beach Cole also had a migraine Monday night and was vomiting over night.  Although he seemed better Tuesday morning he started sliding down hill and was out for most of the afternoon.  We woke him for dinner and sent him back to bed and he was luckily feeling better Wednesday.  We decided to keep him on the pain meds to keep the headache away.



The episode was a bitter reminder of the issues from last summer and the stark reminder that we really don't know why he gets these head aches.  However, with each episode we gather more information and hope to start drawing some similarities that help us learn how to prevent them.  I'm still of the opinion that he gets them when he has been overstimulated and possibly in addition to being over heated.  Luckily we had all the time in the world to cuddle him back to health and had no where to go. And overall, it was so wonderful for the kids to have so much quality time with their dad.  And that is priceless!


In addition to relaxing by the pool and beach we also surprised the kids and took them on a Cessna tour of the Outer Banks.  Although not excited right away (Reagan's exact comment was, "That's it?  Our surprise is riding on a plane?") they were over the moon once we got up in the air.  It was a really fun experience for all of us.  It was especially cute hearing Cole talking on the headset.  You could tell he liked hearing his voice.

We were also able to surprise Johnny's mother on her 70th birthday while we were there.  The adults took her to dinner while Pop and the grandkids decorated the house.  They had balloons, decorations, and cake and we sang her happy birthday.  I think they really liked surprising her! Overall we had a fun trip and enjoyed spending time with family.  So many fun memories that I know my children will cherish for years to come.