Neurosurgery and Neurology Updates

Well we're closing out the year with our usual neurosurgery and neurology visits.  We met with the neurosurgeon for both kids two weeks ago.  It's always good to see Dr. Myseros and get his perspective on the latest in the world of scans and shunts.

He said Reagan looks good and although he wants to continue to see her periodically, there is nothing overly concerning.  He did say that he's surprised we haven't considered tapering her off her epilepsy medication naturally by weight to see what happens.  I'm sure that will come up again when we meet with the neurologist, but as I've shared, her scans still show significant epileptic activity so it wasn't advised.

Dr. Myseros said Cole looks good and we talked about when he should have his next scan.  He'd like to have him scanned again before our next visit in the Spring.  Although we've been on this journey for over 8 years, I am always learning new things about my kids' diagnoses.  He shared a story about a patient who hasn't seen him in 8 years and although had no symptoms he decided to have her get a CT to check the shunt function.  The scan showed the tubing was broken despite not having any symptoms.  It gave me hope to hear that she may have become shunt independent.  Although he said he would never remove of the valve in the brain (unless it's malfunctioning), he will be conducting surgery to remove the tubing in her stomach and leave her "open" for a few minutes to see if anything is draining into the peritoneal cavity.  He said it is sometimes possible for the tubing to build up a "barrier wall" that allows the fluid to drain through tissue build up so that it looks like you are shunt independent but actually there is still drainage.  Anyway, the point is that he said there are significant long term complications from all that tubing in the body and it should be removed if it's not needed.  And BAM...there's the kick to the gut needed to shift you from hope back to reality.  But we live a life knowing his rate of shunt failure is 99% in the first 10 years so this isn't a surprise.  We are very blessed that Cole hasn't had any issues and pray that continues.

On to neurology...as you may remember, Cole graduated from his neurology appointments in the Spring but Reagan continues due to the epilepsy medication.  It was a good appointment and nothing new to share.  He said she looks good and is still within the therapeutic level for her medication so we decided not to increase it.  I did mention Dr. Myseros's question and he said that he believes in being more aggressive.  If she's ready to come off the medication he prefers to wean down over a 6 week period rather than coming down naturally based on weight.  He said he would like to have another EEG in the Spring before the next appointment and consider taking her off next summer.  I am definitely not going to get my hopes up, but it gives us something to look forward to.  Unfortunately, even if she appears to be seizure free they can always resurface like they did last time. It may be weeks, months or it could be years.  Being seizure free for 5 years definitely increases the chances of being able to consider coming off the medication except that the statistics are very different for cases with structural causes for the epilepsy.

Just as Cole could have a shunt malfunction any day and end up in brain surgery again, we've come to accept that Reagan will always face epileptic recurrence.  And while we so desperately want her to be independent of the medicine, I sometimes wonder if it's better to know she's medicated and safe.  The thought of letting her go swimming or climbing on a jungle gym not knowing if that will be the moment she has another seizure will bring with it another set of concerns.  And yet I worry about her being able to drive or bear children.  And although this is a long way off, and new medical developments may occur, it's hard to think about her being told she can't have her own children.   And so we continue with this thing called life and take every moment to enjoy what we have today not knowing what tomorrow will bring.

We were lucky to have a beautiful day to cut down our Christmas tree.  It's a family tradition for us to go the day after Thanksgiving.  Despite fighting over who got to pull it to the bottom of the hill, we had a great time and had a fun afternoon decorating it.  I'm very lucky Reagan loves putting on the ornaments as much as I do!  We also got their school pictures - they look so grown up!

Ophthalmology, Pediatrician, NuEyes, Read-a-Thon and Annual IEP

As we move into the Fall we have several doctor appointments that started with the Ophthalmologist, Dr. Jeffries.  We had a very good visit and I marvel at how much easier the appointments have gotten now that the kids are mature enough to follow directions and sit quietly so I can talk to the doctors.  Cole had his eyes dilated and his prescription was updated.  I am excited to share that his vision has improved slightly! Not by a lot, and we don't expect that to necessarily continue, but it was a nice surprise.  Unfortunately he is still considered legally blind, but any improvement is always welcomed. As he is able to better understand the tests we hope we will get a better idea for what he really can see.  The doctor believes the improvement was a result of the surgery that allowed better alignment, reduced shaking and from his increased ability to accommodate by adjusting his null point to see (off centering his head to get the clearest image).  One big difference with this appointment was that the doctor recommended Cole get bifocals.  What I didn't realize is that the prescription he needs causes images to get smaller.  So by adding the bifocal for reading, we can slightly increase the size of what he reads to help him see it better.

After the appointment we drove to the optometrist's office (located with the low vision specialist) to order his new glasses.  I've been wanting to get glasses without a strap for a while now, but he still tends to throw them at me when he gets mad so the durable rubber has been a very good option.  He has been wearing the Miraflex since he got his first pair at 11 months old.  Unfortunately I didn't realize how good we had it!  Finding a pair of glasses that work for Cole was VERY hard. First, he has a thick prescription which rules out any wire frames.  Then, the bifocals rule out any rectangular frames because the real estate is too small for the bifocal.  And given his prescription we can't do progressives because again, he would lose too much real estate on the lens. One thing I didn't realize was that his temples are actually pretty wide, possibly from the plagiocephaly he suffered from his extended stay in the NICU.  So many of the glasses were too tight on the temple and would push the glasses down on the nose.  After an exhaustive search and lots of attempts, we got to pick from two pair.  But we both really like them and they are working out well.  I did take him back once already to have the arms adjusted so they would stop falling on his nose.  He is adjusting well to the bifocal and seems to be happy with them.

While visiting the optometrist I spoke with the low vision specialist about our upcoming appointment with the rep from NuEyes, the visual prosthetic magnifier.  He further explained that the reason these glasses will help Cole is because we can adjust the refraction with glasses, but the tissue center of his eyes is permanently damaged.  He said that pretty much everything Cole sees is fuzzy, but when something is small, just losing a few "pixels" of an image makes it difficult to discern.  When you enlarge an image, losing a small pixel has much less of an impact because the percentage of the image that you lose is much smaller.  So the more we can magnify images for Cole, the better he will be able to see them.  We discussed the many questions I had for the rep and was glad we were able to touch base.

The following day I met with the rep from NuEyes, Kristi, and she setup a full demonstration of the glasses with Cole's TVI at the school.  We discussed models, durability, usability, and future upgrades.  Then we brought Cole into the library to try them.  He immediately went to the fish tank in the library to look at the fish.  The TVI said he had tried to look at them the previous day but of course you can't get close to a fish.  In the picture shown he went from only being able to read the first two numbers (he read the 6 as an 8 likely because it was fuzzy) to being able to read all three rows of numbers with the glasses.

Although the glasses are VERY cool (much like virtual reality) they will take some getting used to.  They are voice activated for zoom (up to 12 times) and will allow him to see more of what's going on in the classroom and have them read to him if his eyes start to fatigue.  One example is using them for group reading in the classroom.  Long term he would also be able to do internet searches.  Outside of the eduction setting, he may also be able to go games or shows and see what's going on.  Unfortunately it will be another technology to integrate into the curriculum and determine what and how it should be used.  Not to mention they are $5,995 and you probably remember he broke his cane in half the first week he had it.  The rep said The Lion's Club focuses on grants for visual disabilities so we are investigating what opportunities may be available through them.


We also kicked off our school fundraiser that day so I was able to go into the kids' classrooms and have them read to me.  I was so impressed with how much progress Cole has made this year using his CCTV.  Although it's still hard to position physical books and worksheets, he has mastered online reading on the device and that is a great option for him.

Cole also had his 7 year check up and flu shot.  Although he resisted the flu shot and had to be held down, the appointment went well and the doctor is pleased with his growth pattern.  He struggled for so long to even be ON the chart that it's nice to see an even, upward movement for height and weight and go into an appointment with no real concerns to address.

It's also IEP time for Cole which mean his school goals need to be reviewed and updated.  We had his meeting today and I have mixed feelings about the changes.  Most of his services will remain stable into the new year with the exception that his occupational therapy has been reduced to consult only (no service time).  I am slightly concerned about whether his hand writing will decline given they have worked on this a lot, but just as with private OT, his therapist feels he has made amazing progress and is no longer delayed compared to his normally developing peers.  But I know this is something we can and will work on at home to improve the clarity.  Also, the team talked about the option of the NuEyes and we decided to reinvestigate at the end of the school year.  The team is worried about integrating another technology when he's just getting proficient on the ones he has now.  Also, he struggled slightly to figure out how to use the glasses and we think a little more maturity will greatly help his ability to use them to their potential.

A lot of updates, but all good.  Next up is neurology and neurosurgery in November!

Cole's Monster Mash - Cole Turns 7!

And just like that, 7 years have come and gone.  Cole chose a Monster Mash birthday this year and invited his 1st grade class and friends to the house for a costume party.  It was a little chaotic given I was gone all week on a business trip and got home Friday night.  On top of that Johnny was deployed to Puerto Rico helping with the disaster relief of Hurricane Maria.  But I was able to pull it together!

Within two hours of getting home from St. Louis I had most of the decorations up and the table and tableware set and ready for the next day.  I still needed to get the mums purchased and planted so the house was presentable - all my flowers died since I forgot to leave a note to water them while I was gone.  I needed to grocery shop, pick up the cake, make the balloon spider for the ceiling, make the skeleton lanterns and of course get the dry ice for the magic potion!  After getting all I could done, Reagan and I took Cole to Cheesecake Factory for his birthday dinner with my friends Vicky and Justin. It's his absolute favorite so of course we had cake and sang Happy Birthday.

The next morning we had a lot to get ready but it went smoothly.  Mums were purchased and planted.  We were visited by a beautiful memory of Kendall when a butterfly landed on one of the mums.  When we got home one of Johnny's co-workers stopped by the house to drop off a present for Cole with a balloon.  He and his wife then offer to get the dry ice for the potion - huge help!!  After they left Cole looked at me kinda sad and said, "mom, it's not fair this whole day is about me and nothing is about Kendall.  Can I send this balloon to her in Heaven?"  My sweet, sweet boy...so we wrote her a note,  he let it go and we watched as it disappeared into the beautiful blue sky.  It was a bitter sweet day holding the party on the anniversary of her loss, but I love that he was thinking about her and wanted to give her something for her birthday.  Not a day goes by that we don't think about her and wish she were here.

Overall the party was a success, but I had a lot of rowdy 7 year olds!  The kids had fun playing on the moon bounce, painting pumpkins, beating up the eyeball piñata and running crazy in the basement.  One thing I love about our house is that we have a basement made for play.  Between the rock wall, monkey bars, air hockey, roller coaster, balance beam, see-saw and drum set with microphone for singing, there is something for everyone. For those who didn't come in costume I had lots of options for masks the kids could wear and then take home.  And of course they were able to take home the pumpkins they painted.  Cole's costume this year is the Scream character with a two layer plastic mask that releases blood when you squeeze the "heart" bulb in the costume.  I never would have imaged that two other boys from his class had the exact same costume! They thought that was pretty funny...but I doubt any of them have actually seen the movie or they wouldn't be laughing!  The kids had eye ball cake pops, chocolate covered finger pretzels, mummy hot dogs and a magic fogging punch (with dry ice).

Needless to say we were all exhausted by the end of the day and slept well!  We also celebrated Cole's birthday Sunday with my parents and sister and then again on Monday with Johnny's parents.  So it was a four day celebration!  It was hard not having Daddy there, but we are so proud of the work he is doing to help the people in Puerto Rico and hope he will be home soon!

Cole Graduates from OT! The struggle to feel normal...

Another HUGE milestone for the Bischoff Family was reached today! Cole has graduated from occupational therapy at INOVA Loudoun Hospital!

Cole started weekly therapy in the NICU at Fairfax Hospital.  It was mostly stretching and positioning, but it was therapy.

After discharge he started Early Intervention at home with Heather and then physical therapy with Jill (Reagan's therapist)  and has been in therapy ever since.  That's 7 years of weekly therapy and for a while he was doing both physical and occupational therapy so he went twice weekly.  He didn't walk until he was almost 2 years old.  His journey has been very long and he has worked very hard. Anyone who has gone to physical or occupational therapy know that everything they ask you to do is hard...or it wouldn't be a goal.  He's had many therapists over the years and unfortunately we had to move from Children's Therapy Center to INOVA Loudoun Hospital when our insurance changed.  We definitely miss our therapists.  They truly have made such a big difference in both our children's lives and we owe them a debt of gratitude.

Although we are now free from private therapy, both kids are still receiving occupational therapy services through the school.  Their goals in school are very different because they must focus only on skills that impact their education.  For example, being able to open glue containers or effectively use scissors, or write legibly within the lines.  In private therapy we are able to work on those skills in addition to goals related to skills like dressing (e.g., buttons are hard for both kids) or other life skills.

You would think I should be ecstatic we have one less appointment and that Cole's therapist, Christine, thinks he is ready to take some time off. But it comes with mixed emotions.  Although I'm happy he has achieved his goals, there are still areas in which he needs extra work.  I am happy that she thinks he can achieve gains through his other activities, but it also increases the pressure of making sure we work on those things at home or through activities.  We have cut back on a lot of activities for a few months to try to settle down our hectic schedule and see if that helps the signs of sensory processing challenges.  Christine is going to build a home program for us to follow and we will focus on those to help him continue to see gains.  When you see how tiny he was when he started, and how happy he is today, I couldn't ask for more.  He couldn't even sit up on his first visit!

I've struggled for the last few weeks as life has started to feel "normal" again.  The doctor appointments continue to become fewer and further between.  Now with therapy being discontinued, it's closer to normal than we've felt in over 8 years.  But each time I've allowed myself to feel "normal" we've been kicked in the gut...either more seizures, or a concern about a shunt failure or finding out Cole needs to learn braille.  So my nature is to have my guard up.  But normal feels really good.  I still worry about what kind of job Reagan will have that doesn't require typing.  I worry when Cole grows up where he will live so he can catch a bus to get to work.  And as he is doing more reading now in first grade I am realizing that he will definitely need an alternative solution for learning - either braille or text to speech translation.  But we will carry on and find our way one day at a time.

So when I say "normal" I guess I mean nothing is emergent anymore...it has become a lifestyle and is therefor normalizing.  We have a child with partial paralysis of the left side.  We have a son who is legally blind.  We have a daughter in Heaven, and yet I find myself feeling guilty that they are doing so well.  I lost my 7 year old God son one month ago to an unexpected aneurism.  It has been devastating to lose him and heartbreaking to see how much pain it has caused his family and friends and how much our lives will forever be changed.  My father always says that God creates your spirit but a husband and wife create the body.  God does not create pain and doesn't cause or choose medical issues.

We had an interesting discussion this week about God's will.  When we face tragedy we pray and ask God for help. I remember praying, "God, please let Reagan live through brain surgery."  "God, please keep Kendall and Cole safe in my belly so they are healthy when they are born."  When our prayers are answered people always say, "Praise the Lord" as if he chose to cure the cancer or prevent death.  We search for answers for why God allows good people to feel such pain and face tragedy.  But truthfully we need to pray NOT for the outcome, but for the understanding.  So maybe instead of praying for good health, we should pray for the strength to face the illness if we get sick.

We pray and ask God not to take our child and then ask God why he let our child die.  We get confused and angry when our prayers aren't answered.  We get angry because we don't understand why He would allow this to happen to good people.  But maybe He is not in control of all the things we ask him to help us with in our prays...and therefore we are praying for the wrong thing.  God doesn't DO these things to us like give us a tumor, just like he doesn't create the hurricane that kills people and levels a town.  These things that happen are biological or nature at work.  We must pray not for an OUTCOME but rather for the ABILITY to handle the outcome.  It's interesting because if we accept this to be true, then the anger and frustration that something so horrible could have happened is not blamed on God, but rather He becomes a savior to help us move past the pain by
asking Him for strength.

As I continue to pray for strength and understanding, I want to share a photo I found this week.  It truly speaks to me.  I have often considered ending my blog now that life is no longer emergent, but I still want to believe that my journey as a purpose...and I don't know who I can help by sharing that journey. This photo is part of a project to help others understand the feeling of losing a child.  It is such a truly empty feeling.  A feeling I had almost 7 years ago and one that I feel again with the loss of my God son.  But today I have a new understanding.  I don't ask God why.  I ask God to give me the strength to move forward, feel happiness again, and support my friend and her family as they learn to live with a silence in their home that is truly life altering.  If you believe, please lift them in prayer as their journey to healing will be a long one. (You can click on the photo to view it larger.)

Empty Photo Project by Susana Butterworth

Camping amongst 3,400 ghosts!

After a very busy summer of work for both Johnny and I we were able to squeeze in a quick trip away with the kids.  We decided to try the Chesapeake Bay area since the weather was supposed to be amazing for mid-September.  We camped at a place called Point Lookout State Park in Maryland.  It is the point at which the Chesapeake Bay meets the Potomac River.  It was fun telling the kids this is the same water that passes by our house at Algonkian Park.  You could tell they were trying to figure that out.  We were so close to the peninsula that you could see the bay on one side and the river on the other.  It was nice to be able to see both as we explained the difference between the types of bodies of water.  They really liked that they didn't have to worry about the waves they are used to at the beach.

The peninsula was the location where over 52,000 confederate solders were imprisoned between 1863 and 1865 in the largest war camp in the Civil War.  Many of whom trekked there from Gettysburg!  There were between 3400 and 8000 soldiers who died right where our camp area was located.  It was amazing to think of how small the area was and how tight it must have felt with 52,000 soldiers.  This was very close to Dr. Mudd's house, which is where John Wilkes Booth fled after shooting President Lincoln.  So much history!  I can't say the kids completely appreciate the history yet, but they had fun regardless.

We climbed to the top of the Point Lookout Lighthouse which was standing when the prison camp was there.  The area at the top was SUPER small, hot and we found out later that was where the lighthouse keeper was found dead!  Eek!  Luckily she died of natural causes after taking over the responsibilities of the previous light keeper, her husband, after his death.  We were happy to be able to tour the lighthouse since it will be closed for the next year for renovations.

We also found time to ride bikes along the trails on the park, go swimming in the bay, go fishing and of course camp.  Unfortunately they didn't catch any fish, but they promise to try it again.The kids had a great time and we definitely look forward to going back when we have more time.  There were several other historic areas we wanted to be able to tour but didn't have time.

The only disadvantage of the trip was the crazy bugs!  Somewhat hard to tell in the pic of the kids, but they got eaten ALL over...including their faces!  Reagan is KNOWN to get eaten, so we keep spray in the camper and get it out as soon as we setup camp.  She was COVERED with spray everywhere except her face.  Watching her try to scratch her right arm is truly heartbreaking (lefty isn't strong enough to scratch).  Although I do have to give her credit - she gets very creative and rubs on the side of walls and tables.  We've also learned a lesson...it needs to get on the face or at a minimum in her hair.  We are also research alternative options for bug management :)  Like an industrial bug zapper!  The good news is that mom has gotten really creative with Calamine treatments.   I can apply many different designs including hearts, stars, polka dots and even Mickey Mouse ears.  It's all about making it fun right?!  And that we did just that...had a fun weekend just being with family. Feeling blessed...

Here's to another school year!

I can't believe the summer is behind us and another school year has already started.  It was a fun summer but flew by with work being so busy this year.  We were so lucky to have my niece Allison staying with us to watch the kids.  They had SO much fun this summer going to the pool, swim team, playground and riding bikes.  We definitely wouldn't have had such a smooth summer without her!!  And I know the kids wouldn't have had so much fun!

The kids also wrapped up summer with a week of Grammy Camp!  I had to go to Seattle for work, my niece already left for college and Johnny had to go to Dallas to speak at a conference.  The kids hadn't stayed with my parents before but were very excited.  They literally talked about it daily for two weeks before they went.  The kids had a great time!  My parents bought them both little ceramic banks - a fire truck and a bunny.  Each day they got paid $.50 to do chores and clean up after themselves.  They were so excited to tell me all about their adventures.  They had a fun time reading every day, riding the tractor and golf cart, using their new bow and arrows, washing the car, weeding and working around the farm.  They thought it was so fun that they got paid every day!

After Grammy Camp we had Open House at school followed by Back to School Night and the first day of school.  Both kids have a new team of teachers this year.  Cole is going into first grade and has Mrs. Galvan.  We've heard really good things about her and Cole has come home every day very happy and sharing lots of stories.  After such a challenging end of the year last year this is such a huge relief.  His teacher had a lot of really good questions about Cole when we met at the Open House and I was glad she is so on top of his IEP and understanding the challenges ahead.  She sends regular email updates and is always at the school by 5:30am so her door is always open.  Hoping for a good year!  Cole also has a new TVI and a new occupational therapist.  His special education teacher is new, but Reagan had her last year and we are very thankful for that!  I think this will be a really big year in understanding what we are facing with his braille education and how much that will play into his curriculum.

Reagan is going into third grade and has Mrs. Sherry.  We've also heard amazing things about her and Reagan is already coming home with a big smile and very positive stories about school.  She was VERY nervous the night before school started and was worried about being ready for third grade.  One day in the class and all those worries are gone.  She's especially excited about the pom-pom jar. Once it has 50 pom-poms they get to plan a party!  I love created behavior plans !  Reagan also has a new occupational therapist but she has the same special education teacher from last year and the same one Cole has.  Reagan continues to express concerns about getting pulled out of class for reading.  We decided to work a little harder at home on reading and see if that helps.  We're hopeful that this year she will have a lot of her skills "click".

We recently got them both flash cards and they are helping each other practice.  Reagan quizzes the addition and subtraction for Cole and Cole shows the multiplication and division cards for Reagan.  We're trying to make it fun and luckily we found super big print cards so they are easy for Cole to see.  We also purchased a new series of books for Reagan called Critter Club.  We're hoping if we keep trying different books it will help peak her interest.

So we're off to another year of school and I'm off on another trip to Seattle.  One more after this and I'm done traveling for the year.  We're looking forward to a few camping trips this Fall in addition to several doctor appointments so updates will surely be coming!

Summer full of braille - ESY and NFB BELL Camp

Well the summer flew by with a lot of West Coast business trips for mom which meant NO time to keep up with my blog.  So I'm playing a little catchup now...but better late than never is my motto.

Cole was able to qualify this year for the ESY program through Loudoun County.  This is an Extended School Year program for children who will see set backs if they are not able to continue their eduction over the summer.  This is different than "summer school" which is provided for children who are falling behind in school and need a full school day.  His ESY was for vision support only.  He qualified for 2 hours per week for four weeks.  He went to Horizon Elementary School for those weeks and saw the TVI (Teacher of the Visually Impaired) who had seen him toward the end of the school year, Jessica.  ESY and summer school rotate each year with where it is hosted and this year it was at Horizon for the Cascades area students.

We also decided to have Cole participate in a two week braille camp that was offered through the National Federation for the Blind.  It was hosted at St. George's Episcopal church in Arlington who was gracious enough to provide the activity room and kitchen.  This year there were four students in the camp, two twelve year old girls, Cole and a three year old boy (almost four).  Camp was from 9am to 3pm every day for two weeks starting July 31st.

The focus for camp included practicing O&M (Orientation and Mobility), braille lessons, and self advocacy and self care.  A huge focus of the program is to prepare children to become independent.

The kids had several outings and activities that helped them with these skills.  One of the first things they did was decorate new canes.  Cole of course chose batman tape to decorate his.  Unfortunately it didn't even last a week !  If you're wondering, no, they don't work like light sabers.  The first week they went to a playground not far from the church and learned to navigate crossing busy roads, curbs, grates and uneven terrain.

They also took a field trip to the White House Museum in Washington DC.  I was able to go on the field trip and it was very educational!  We had an appointment with a curator who was able to provide several tactile displays for the kids to learn about what it's like to live in the White House and the surrounding monuments.

There was a miniature white house they could touch in addition to local monuments and plastic food that were favorites in the White House.  It was a very challenging experience for another mom and I to escort a group of blind children and teachers through the busy streets of DC.  I had never before realized how many flower planters, lamp posts and broken bricks that were in the middle of our walking path. As an example, although Cole does have sight, he has no ability to see the cross walk signals across the street.  During our walk through DC they talked a lot about what you could hear to help you determine where it was safe to go, when it was safe to cross and how to help make those decisions.

I asked about the audible crossing signals and if they felt those should be Federally mandated.  Interestingly enough, the one teacher felt these actually give a false sense of security.  If you don't get used to listening for cars, you may not catch a taxi taking a right on red or a bus running a red light.  Hearing these dangers is critical for survival.  I truly can't image closing my eyes and trying to cross a street in DC.  It's actually quite frightening and dangerous with sight.

They had a lot of fun themes throughout the two weeks including a Dr. Seuss themed cooking day when they worked in the church kitchen to make green eggs and ham.  They were taught to navigate the kitchen safely and to use knives to cut their food and prepare food without getting burned.  You will notice that children with some sight were given "sleep shades" to take away any ability to use sight.  They firmly believe this helps increase the ability for the other senses to kick in and help them navigate their world.

Rock climbing was the field trip the second week and they all had a lot of fun!  Again, the experience is everything from getting there, doing the activity and getting home.  They taught them to use touch to help navigate the wall.  A very important skill for people without sight!  They also went to a local deli and needed to order for themselves and carry their food/tray to the table.

Another fun activity was a visit from the local fire department.  I shared that our company does education events to help children get more comfortable with the equipment firefighters wear and to hear what the SCBA (self-contained breathing apparatus) sounds like when a firefighter is breathing through it.  It really does sound like Darth Vader! They were able to coordinate a visit from the local Arlington station and the kids all really enjoyed touching the equipment and talking about fire safety.  I love that Cole was sitting right up front!!

The firefighters came on Super Hero day when the kids decorated special capes - because each is truly a super hero!  They also made special super hero masks.

They also made fun snacks.  One day was a movie day and they brought blankets and wore pajamas.  They also made "braille mix" which was a lot like trail mix but the M&M's represented braille dots, the pretzel sticks represented their canes, and the Cheezits represented a "full cell" which is the full combination of Braille dots.  So very clever and these little touches really made camp fun for the kids.  They also had a camping day where they made s'mores!

They also had a final graduation ceremony where the each child presented information on a different person and participated in a play.  One presented on Louis Braille, another on Helen Keller and another on Dr. Seuss.  I had no idea Dr. Seuss was not a doctor and that he hated kids!  They shared the story about his friend challenging him to write a book with exactly 40 words...and that's Green Eggs and Ham!  Cole played the part of Louis Braille in the camp play and did a great job!

Overall Cole learned a lot and we are very thankful for the amazing staff who supported the camp. They were so patient with all the kids, very kind and very creative in thinking about themes and activities to keep the kids engaged and have fun.

He will continue his braille education this year in school with another new TVI.  We are not sure when he will start using braille for instruction versus learning it.  I expect some of that depends how quickly he picks it up and how much of his school work begins to be a challenge due to small print.  He has a very demanding schedule this year and I'm worried about eye fatigue and headaches.  His day in first grade starts with 30 minutes of independent reading followed by 15 minutes of reading out loud, followed by one hour of guided reading, followed by 45 minutes of word study/writers workshop.  I pray he is able to handle the intensity of that schedule and plan to maintain close communication with his teacher, TVI and special education teacher to monitor how it's going.  I try to just keep reminding myself - One. Day. At. A. Time.

Beach bums at Duck, NC

Another fun week at the Outer Banks is in the books!  It's always hard ending vacation with the stark reality of having to come home to errands, house projects and a business trip.  But as I always say, "don't be sad because it's over, be happy because it happened!"

We went with Johnny's family so we had 21 in the house - 10 adults, 5 teenagers and 6 kids under 9.  We had a great week with no agenda and a lot of bumming around and doing nothing.  We also had a few adventures that the kids will hopefully remember!

The first few days were filled with the pool and beach.  It was pretty hot this week with temps over 95 every day and lots of sun.  It was the first year, though, that we got both Cole and Reagan in the water riding waves.  They had a lot of fun and started to figure out how important it is to stay on the far side of the breakers.  It is also a lot easier to trek down to the beach as the kids get older - they don't really play with beach toys and there's no need for diapers and wipes so it's just towels and chairs.  We were also spoiled with a house across from the beach which also helps.  It's easy to walk back for the bathroom, food or just to get out of the sun for a little bit.

Tuesday I was also able to visit with a dear friend Kelly who I've known since 1st grade!  She lives in Kill Devil Hills so it was great having her visit so we could catch up.  She has a son Cole's age so
they played in the pool which gave us a nice chance to talk.  Strong friendships truly do last a life time - I feel very lucky to have her in my life!  No matter how long it has been, it always feels like yesterday.

Wednesday was a packed day!  It started with a 5:30 am wake up to walk to the beach and watch the sunrise.  Although it seems crazy, the kids really loved it last year and it sparked a lot of engaging discussions about why the sun isn't dripping when it comes out of the water :)  And why you can't watch the sunset on the beach in NC...which led to Never Eat Soggy Waffles (N-E-S-W).  After sunset we took the golf cart up to Duck Donuts and brought them back for everyone which was super fun.  It actually drove pretty fast on the road! I always marvel at the little things that the kids remember and what is fun for them.

We then decided to take a trip from Duck to Kill Devil Hills to visit the Wright Memorial.  It was the first time we'd been there so we were a little surprised to find out it was all outside.  They are in the process of building a new museum and definitely look forward to going back when it's done.  The kids were able to run the distance of the first, second, third and fourth flights back in 1903.  We learned a lot about why Wilbur and Orville's breakthrough was so critical - flight control not necessarily lift! We are both history buffs so we had a great time despite it being so super hot - we were dripping with sweat even at 10am.  The kids were able to climb on a replica bi-plane but could not be convinced to walk up the dunes to the monument at the top.  It will have to wait until next time.

The park service also had kites that you could borrow and fly and the kids had an absolute blast doing that.  And of course kite flying is fun when there is great wind!  We decided to stop by the Kitty Hawk kite store and let Reagan pick one (Cole picked a car instead).  Of course she wanted to fly it as soon as we got home.  It was Nana's birthday so we had dinner reservations with the adults.  It was nice to go out for a nice dinner and the amazing older cousins watched the younger ones.  My kids just adore their cousins.  After cake and birthday celebrations I took Reagan out to the beach so she could fly her new kite.  She did really well!

Thursday we decided to go with the younger cousins and Pop to the NC Aquarium while the older kids went jet skiing.  Unfortunately my work call that I thought would be short ended up taking longer than the group was at the aquarium so I missed it...but heard lots of fun stories about the jelly fish and sharks.  After the aquarium we headed to lunch and then back to the pool to cool off.  That night we decided to go out to the Life Saving Service Restaurant #5.  It was a really neat restaurant that was one of 7 life saving stations on the NC border.  The US LSS was founded to help victims of shipwrecks and later merged with the Cutter Reserve to form the US Coast Guard.

Friday we decided to head to Corolla to visit the Currituck Island Lighthouse.  We weren't sure what to expect and how the kids would handle the walk, but they had a good time.  Reagan did not, however like being so high up and was ready to descend as soon as we got to the top.  It was crazy hot and of course we walked the steps with no AC, but they had fans on the landings so it wasn't too bad.  The lighthouse was originally built in 1875 and had 220 steps - one way!  It was neat for the kids to learn that before electricity the light was powered by lard and then oil.  At first they thought it would be fun to be a light keeper until they realized they had to carry that lard up the stairs every day and had to go back up in the morning to turn off the flame.  And the light keeper had to get up every two hours to rewind the weights that created the "blinking" effect of the light.

Although we packed bathing suits with a plan to drive on the rural part of the beach at Corolla, it was pretty hot so we had a quick bite to eat and headed back to the house to play in the pool.  Also, we planned to head out about 5pm to drive back to NOVA and needed to pack.

If you remember from our vacation last year at OBX, Cole came down with a horrible headache that took him down for almost 2 days.  We were watching his water intake carefully this week and luckily had no problems!  It was nice having a week with no medical issues!  We feel very blessed to have had a great week together!

NOTE: For privacy reasons I do not post pictures of all the cousins.

All it took was a camper and Reagan is on two wheels!

About a month ago we decided to get back into the camping world.  We listed the ATVs and they sold quickly.  Johnny has owned two pop-up campers before kids and we really enjoyed traveling and getting closer to nature.  It wasn't until recently that we thought the kids would be ready, and of course now that we have a camper with a bathroom that makes things MUCH easier.  We've been looking at travel trailers for a little over a year now trying to decide whether we wanted another pop-up or a hard side camper. Once we decided hard side, we then needed to decide size, weight and the type of fabrication.  And of course amenities.  The outside cookstove/fridge and outside shower were a big plus for Johnny.  Unlike cars where there is a finite number of manufacturers, campers are branded differently and sold at different locations.  So trying to compare and contrast styles and options is challenging.

The camper is a Keystone Passport Ultralite and is considered a 28' travel trailer. It has one queen bed, two double bunk beds (or a little smaller) and a kitchen table that breaks down into a bedding area that could sleep one or two kids.  It has a full shower, toilet, sink and a full kitchen with a stove, oven, microwave, refrigerator, freezer and sink.  It also has a flat screen TV, DVD  and a radio system with both indoor and outdoor speakers.  It is definitely more like "glamping" than "camping" but it makes it fun for the kids and a little easier for us since we can leave everything in the camper.  Other than food and clothes there isn't much to pack when it's go-time.


We picked up the camper last month and decided to take it out the day we picked it up since I am traveling a lot this summer for work.  We bought it at Reines RV in Manassas so we decided to make the short trek to Bull Run for the night.  We had a relaxing time breaking it in and figuring out all the buttons and gadgets.  We also had a few friends join us which the kids were very excited about !  They spent a lot of time playing at the playground, making s'mores and playing Bocce ball. They also got to pick up and learn about different animal bones that were in the camping store.

Since our first stay was so short, we decided to take the camper out again this weekend for the long holiday weekend.  Who knew camping sites book up so quickly?!  It was tough to find a space and most places had a three night minimum so we decided to go back to Bull Run for a little longer stay this time.

The kids had a great time at the playground again on our second trip.  We also decided to take the kids' bikes this trip.  Reagan asked to take off her training wheels a few months ago but our house sits on a hill and learning to ride has been very challenging.  Who knew that an hour of practicing at the camp site and she would master the two wheeled bike?!  Seeing the look on her face when she realized she was doing it was priceless.  I have no idea how many steps I got in, but wow, the kids biked forever...then more the next morning...and that night...and the next day.  She has gotten a lot more balanced and even getting back home she has been practicing and having a lot of fun riding.  As I was coming out of the camper Monday morning I caught Cole helping Reagan buckle her helmet.  She isn't able to do this with one hand and I thought it was so sweet that Cole was trying to help her despite having a really hard time seeing the buckle.  They fight a lot, but can be so very sweet with each other.  I love that I was able to capture this moment.  It really melted my heart to know that he was there when she needed help...even though it was really hard for him.

In addition to the bike riding, we spent the day Sunday at the Atlantis waterpark at the campground.  It was only $16 for a family of four and a lot of fun! It's pretty rare for mom and dad to go to the pool together and get in the water so the kids had a lot of fun swimming and going down the slides.

We also got introduced to something new on this trip.  It's a group called RV'ing Rocks.  I had no idea they exist, but it has over 3,600 members on their Facebook page.  People all over the country paint or decorate rocks and hide them at camp sites.  Then if you find it you can either keep it or hide it for someone else to find.  You're also supposed to take a picture and post it on the site for others to see.  Reagan was absolutely enamored by the rock.  Between the butterfly and the bling there was no way she was going to leave it there by the tree.  So needless to say we kept it and she is now very excited about painting rocks for others to find.  And the fun part is that I did post a picture on the site and the woman who hid the rock saw it and commented!  I told her why the butterfly means so much to us and she said this is the only rock she has made this way with paper.  She said she always paints them but this was a one-of-a-kind.  She was so touched when I told her Reagan was sleeping with the rock and wouldn't put it down after she found it.  We are excited about going camping again so we can hide rocks for others to find!

In addition to all the other activities, the kids had fun drawing and coloring inside and Reagan was a big helper with washing dishes and helping keep the camper clean and organized.  And notice how well she's holding that bowl with her left hand!!  It's super tough to squeeze soap on the scrub brush, but I helped her and she washed all the dishes and dried them by herself!

We are definitely "that" family who works a lot and is very "connected" with technology.  Although the devices did come with us and the kids did watch a movie Sunday night on the TV in the camper, we had a great time just being together as a family and having fun.  We are already learning some lessons about camping best practices and site selection to make sure our utilities can reach where they need to be.  We are also getting stocked up on the things that matter in the camper...like bug spray and calamine!  And my husband spoiled me with two strings of little lantern lights that we strung along the awning this trip.  It's amazing how much some campers go all out!  Some have full flag poles, flower pots and decorations all over their camp sites.  We are definitely more simplistic, but there are little things that make a big difference...like having a large area rug so the kids can come out without shoes and don't track the dirt and leaves inside the camper.  We added a toaster this trip since eggs and bagels on the fire just didn't taste the same with the smoked taste.  And next trip I think I'll be adding a coffee maker.  Although I liked the morning walk to the camp store for coffee, it would be nice to be able to have it more easily accessible.  I'm hope to share more camping adventures this Fall and some of the RVing Rocks designs that we create!