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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

July Updates - Orthotist, IEP, Orthodontist, Botox, Neuro Psychologist

Another busy month!  And although I hoped for a very lazy August to wrap up summer, we now have seven more appointments I'm trying to get on the calendar...

Orthotist
We met with the orthotist to have the cast made to mold the orthotic brace.  Reagan hasn't had a brace in over two years and although I'm not looking forward to the nightly fight, I am hopeful it could reduce the tripping.  Luckily she is really good about sitting still and doesn't get scared getting it cut off anymore.  Her favorite part is picking out the straps and plastics.  Although pink was her go-to when she was younger, this time around she picked turquoise with horses.  We need to wait about a month for the brace to come in and then we will go pick it up.

IEP Meeting
We met with the school team to write the goals and discuss services for Reagan for the next year.  I was nervous going into the meeting, but felt confident knowing I have an advocate who understands Dyslexia and the accommodations that may be needed.  We had a pre-meeting to review the document and consolidate our feedback.  Overall the meeting went very well.  We were happy with the recommended services, but wanted to refine the language on the goals and add a few accommodations.  Given the volume of changes and research needed to determine appropriate encoding and decoding metrics from FastBridge (information not accessible in the meeting), the school will be making updates and distributing another draft for us to approve.  I am very thankful for the ideas the advocate brought to this meeting and I am very hopeful this sets us in the right direction for 5th grade!

Orthodontist
Although I've had a lot of updates about Reagan lately, Cole also had a follow up appointment with the orthodontist. Thus far the ortho has only recommended the extraction of four teeth back in February and luckily that is behind us.  And I'm definitely not in a hurry to have another regular appointment on our books.  His appointment went well and he asked us to come back in 6 months.  They did say that we may need to remove permanent teeth down the road in order to make room because an expander will not make enough room for the amount of space needed for the teeth that still need to come in.  Luckily no decisions need to be made at this point so we will revisit in this in January.

Neuro Psychologist
I've been waiting for this meeting with Dr. VanVeelan at Domion Center for Behavior Health Services since I started searching for a neuropsychologist back in February.  I was very nervous I was putting too much hope in this appointment, but I left completely overwhelmed with the volume of information and data that supports the concerns we've had for the last year.  There is a lot to share, so I've broken it out into the main areas of concern.

Attention versus Inattentiveness
The first category of concern is Reagan's tendency to often "check out" or stare off into space.  Overall the psychologist feels we still haven't uncovered a reason for this.  She doesn't feel it is manifesting as traditional ADD symptoms and believes some of the other testing she is recommending may help identify the cause.  We will need to follow up with the neurologist on this.  We did rule out absence seizures with the EEG so we're hoping some of this additional testing could identify a reason.

Cognitive Efficiency - Corpus Callosum
One possible cause for the inattentiveness could be a disconnect in the left and ride sides of her brain.  The psychologist has recommended a repeat MRI to determine if it is functioning properly.  The corpus callosum is the nerve tract beneath the cerebral cortex that connects the left and right hemispheres enabling communication between them.  I spoke with Dr. Lavenstein's nurse and have requested an order for the MRI.  They need to process it through their Finance department for authorization and will call next week to get it scheduled.  She hasn't had one since her seizures started again in 2012 so a lot has likely changed.

Visual Processing Disorder
One of the larger concerns the neuropsychologist has is a deficiency in visual processing.  The theory is that the eyes receive the message, but the brain is not effectively processing the image. An example of this is shown below in the Rey Visual Design Learning Test, the image on left is presented and Reagan was asked to draw it while looking at the image.  The concerns with her drawing was the first, she started with the smallest diamond not the largest component of the image.  Second, she started from the right and worked left. After viewing the image for 306 seconds, it was then taken away and she was asked to draw it from memory.  The third image represents her memory of the drawing.  Not only did she again focus on that small diamond, it's not even in the correct orientation.  This indicates that she cannot effectively process the images she is seeing (which impacts EVERYTHING she sees whether it is word in reading, math or drawings).

The recommendation is to have an evaluation for a visual processing disorder and determine if there are occulamotor issues.  I made the first available appointment with Dr. Smithson at Northern Va Doctors of Optometry for the end of August.  Prior to that evaluation, she also has to have a traditional eye exam which I was able to schedule for mid August.  He will conduct visual and perceptual testing to help us further understand the root of these issues.  I'm guessing this will be much like the visual testing Cole had done in Ohio three years ago.

Auditory Processing Disorder
Another significant area of concern is auditory processing as it relates to speech and language.  Reagan struggles significantly with recall despite no issues with intelligence or memory.  Similar to the visual processing, the question is whether her ears are effectively communicating with her brain.  For example, when given an image of a canoe and asked what it was she said boat.  When shown an escalator she called it stairs.  But if given several images and asked to point the escalator she could correctly identify the image (which means she knows the word).  So her brain KNOWS the information, but she is unable to RECALL the information.  Closely connected to hearing is the speech and language component.  So in addition to the auditory evaluation, she is recommending a speech and language evaluation.  The area of the brain that coordinates all this activity is the left side.  So that could be impacted by the seizure medication, by language issues, or by issues with the corpus callosum.  These evaluations would help us identify which is causing them and therefore drive the correct solution.  In addition to private evaluation, I will be requesting a speech and language evaluation from the school.  Prior to either the auditory processing disorder evaluation or speech and language evaluation she needs to have a standard hearing test.  That has been scheduled for next week.

Anxiety Disorder
Last but certainly not least, she also mentioned the anxiety related to testing and "separation".  We both believe this will lessen as she is given the appropriate "tools" to learn, but it comes from feelings of not being able to do things independently.  Much of this likely started with her left sided weakness - she worked very hard to learn to tie shoes and she can, but she is unable to pull them tight enough to stay tied all day.  In second grade, it wouldn't bother a child to ask her teacher for help with a task like this.  But entering 5th grade, some of these task that normally developing children can do independently are still challenging. Combine those feelings with similar feelings for the cognitive tasks, and it has compounded the issue.  The suggestion is to have her meet regularly with a psychologist to work through those feelings and see that she is very independent.  We will do some research to find a good fit since she didn't have a person in her office that would be a good fit at this time.

Botox
Reagan has a form of cerebral palsy that causes spasticity, or muscle tightness that can interfere with motor activities.  Botox is an injection that works by blocking the chemical signal between the nerves and muscles that make the muscle contract or tighten.  It causes relief from the spasticity within 2-3 days, but unfortunately only lasts about 3 months. We have been cautious in using it because we have to put Reagan under anesthesia to locate the exact injection site.  The physiatrist uses a large needle to get into the deep tissue area that is impacted.   Last time we treated her wrist and ankle, but this time we treated her wrist and shoulder.  It will be important to ramp up the amount of time we spend on left hand rotation activities in the coming weeks to try to strengthen those muscles and try to increase how much mobility she retains as the Botox wears off.  We plan to do a lot of lacrosse and use the NeoFect games she uses for occupational therapy.

Braille Camp
I believe I mentioned earlier that we were going to have Cole go to Braille camp because he was not found eligible for Extended School Year through Loudoun County.  This decision was made because there is "no evidence that he will regress".  We planned to place Cole in a one week sleep away braille camp in Harrisonburg this summer to help build independence but it was cancelled due to low registration. Apparently nation-wide braille enrollment has dropped with the increase in technologies available for the visually impaired.  As a backup we enrolled him in a program in Tacoma, MD.  Unfortunately, after much debate, we chose to pull him.  It was 9-3pm and about 1.5 hour drive without traffic EACH WAY.  Complicating our schedule is the neuro psych eval and Botox appointment for Reagan, neither of which we felt we could reschedule.  We plan to request a Braille evaluation immediately upon returning to school to determine if he had any regression in the hope that we'll have data to support summer services through Loudoun County next year.

As we wrap up July, I reflect on the hope I had to get lots of answers, with the realization we enter August with more questions.  And although I'm thankful for more insight, I'm slightly overwhelmed by having 7 more appointments.  That includes intake paperwork for each, adjusting schedules and taking time out from work.

As with everything, we take Dori's advice from Finding Nemo and we "just keep swimming...just keep swimming" and I try to remind myself to enjoy the little things like time with the kids.  After Reagan's Botox appointment we decided to stop by the new dinosaur exhibit at the Natural History Museum in DC.  This exhibit was closed for 5 years so we were excited to check out the new displays.

Cole was able to find his favorite dino, the Ankylosaurus and feed him with a new interactive exhibit.  Although he was very disappointed the dino gift shop didn't have any REAL fossils.  We also got to see our favorite statue of the Dum Dum who wanted Gum Gum (Night at the Museum movie reference).  And of course, we visited the Butterfly conservatory which always tugs at my heart....

June Updates - Eligibility, Brain Injury Services, Pediatrician, EEG, Physiatrist, Dental Surgeon

Wow, it has been a busy few weeks.  Just a few updates about everything going on.

Eligibility Meeting

We had a meeting at the school June 18th to discuss the testing done to help identify why Reagan is struggling at school.  Honestly it was very hard to see four years of testing and the results of the psychological and education testing that was done over the last two months.  Although we knew she was having to retake a lot of tests and reading below level, but it was very powerful to see all the data in combination.  She took a very large battery of tests which confirmed that she doesn't have an issue with IQ or memory, but she has been identified as having Dyslexia.  Although glad to have some answers, it comes with mixed emotions because it doesn't explain why she struggles to memorize new content.  We are hopeful the neuro psych eval sheds more light on that aspect.  She was also identified as having significant attention issues, but was not identified as having ADD.  Again, we're hoping to get more information from the neuro psych about what could cause these lapses in attention and "staring spells" if it's not ADD.  The other issue that was uncovered was anxiety.  Our hope is that by getting her help in learning, that perhaps this concern will resolve itself.  But it is something that we will be monitoring and I will be curious if it shows in the neuro psych results as well.

I did hire an advocate to attend the meeting with us who is very knowledgeable about Dyslexia.  The good news is that Reagan was found eligible for services and we will meet July 16th to draft her Individual Education Plan (IEP), set goals and determine the support and accommodations she will need moving forward.  I look forward to having the advocate's support in understanding what accommodations and services could help her progress more smoothly through 5th grade.

Orton Gillingham Tutor
One suggestion to help her immediately is to provide specialized tutoring called Orton Gillingham. The approach is "a direct, explicit, multi sensory, structured, sequential, diagnostic, and prescriptive way to teach literacy when reading, writing, and spelling."  We've schedule a Special Education teacher from the school to help Reagan twice a week starting next week.  Although I'm sure it will come with some resistance, we chose not to send her to summer school so she can focus on this more customized approach.

Brain Injury Services
Along the journey in finding a neuro psychologist, we also made a connection with an organization called Brain Injury Services.  They are a non profit who supports people who have experienced a traumatic brain injury.  We met with them a few times and provided the intake paperwork and were finally accepted on their caseload! I met with the intake coordinator last week and we built a Care Plan to identify areas where they may be able to help us. More to come on this as we learn more about what they do.

Pediatrician
In addition to the other appointments, Reagan had her regular annual appointment with the pediatrician.  Luckily this was somewhat anticlimactic.  However, we did discuss ADD medications and whether those would be difficult to administer in combination with the epilepsy medication.  We also discussed the possibility of needing to switch her epilepsy medication if ADD is ruled out and the meds are causing the "staring spells".  Although this is a decision that would be made by the neurologist, I like having this conversation with the pediatrician as well to get multiple perspectives.  Luckily we are not seeing significant increases in the symptoms of precocious puberty so we think she is following the normally developing timeframe for girls her age.

EEG

We were able to have the EEG and as usual, Reagan was a rockstar patient.  She was "the easiest all week" according to the tech!  Although we don't meet with the neurologist until the end of July, I did call to get results.  Unfortunately our neurologist is out of town, but I got a call back from the nurse.  The preliminary results do not show any changes from last year.  So while that's somewhat good news, I was still holding out hope that maybe they were better.  The fact that they aren't worse, however, is not a missed blessing.  One concern I've had after speaking with the testers and her teacher at the Eligibility Meeting is that the "staring spells" could be something called absence seizures.  It's essentially where the seizures is very short and you often don't even notice it.  Although this is not ruled out, the nurse said it is not likely she's having absence seizures since those are usually generalized (come from all over the brain) and Reagan's seizures are focal (originating from scar tissue in the area of the brain that was removed).  So not bad news, but not really good news either.

Physiatrist - Botox and leg brace

When we started talking about doing electrical stimulation, our neurologist asked us to start seeing a physiatrist.  This specialist is a physical medicine and rehabilitation physician who treats medical conditions affecting the brain, nerves, joints, ligaments, muscles and tendons.  We met with Dr. Morozova Tuesday for the first time in 3 years.  Reagan has complained a lot lately about tripping due to her toe drop so we wanted to discuss using a night leg brace again.  Also, we haven't done Botox since 2013 and Reagan has shown an interest in trying it again.  I'm hopeful if she sees that she CAN rotate her hand over that perhaps it will encourage her to continue to use the NeoFect application to work on hand control.  The appointment went well and we left with a script to meet with the orthotist to have a brace made and an appointment for a Botox treatment.  As you can see in this photo, Dr. Morozova asked Reagan to turn over both palms.  She was happy to see that Reagan does have the range of motion in both her wrist and ankle, but agreed that she isn't able to use it and that Botox could help.  Some children are so tight that you cannot physically rotate their hand over.

Dentist - Dental Surgeon

Reagan's orthodontist recommended she have three teeth extracted to make room in her mouth for the teeth that need to come in still.  She was very nervous despite the encouragement from her younger brother about it not hurting at all (he had four extracted in February).  But overall she did really well.  She picked strawberry for her scented "calm me down" gas and as always, Slush came along to share in the fun.  She wasn't quite as chatty as Cole was under gas, but she kept poking her lip and nose and laughing hysterically saying she couldn't feel her face.  And of course she was very excited to see if the tooth fairy would recognize the extra effort put forth with the extraction.  She didn't disappoint!

Swim Team
We are on year three with the Cascades Rapids and the kids are having a lot more fun this year.  They both have friends they are swimming with and it really helps !  There are about 250 kids on our neighborhood team so it is very competitive.  Many of the swimmers are on year round teams.  Reagan's neurosurgeon told us early on that swimming is an excellent sport to help increase her range of motion.  And we know that swimming is a good choice for Cole since eye/hand coordination is not as critical.  They've had a lot of fun with their friends and I'm hoping to convince them to do it again next year.  They both struggle but our goal at practice is to have fun and their goal at every meet is not to come in last.  This week Reagan even shaved 3 seconds off her free style time!  I am very lucky to have my niece, Allison, staying with us again this summer to watch the kids which makes getting them to and from swim team much easier.  Reagan swims from 8-9am and Cole swims 8:45-9:45am.  Definitely tough if you work full time in an office and rely on camps.  We're glad we can make the schedule work.

Summer Box Lacrosse
In addition to swim team, Reagan started playing on a summer box lacrosse league last week.  It will only run for 6 weeks but it keeps the stick in her hand and keeps her practicing.  We all love how fast the game is when there aren't any out of bounds!  Lots more play time for sure and it's much more laid back so the kids have fun.  It has been super hot the last few weeks so they get tired out pretty quickly, but she's having fun playing.

Up next in July...meeting with the neuro psychologist, casting appointment with the orthotist, follow up with the neurologist, the Botox appointment and Braille camp!

The Raw Truth

I haven't blogged since last year and we're already half way through 2019 (that last post I found in drafts and just hit Publish). And although some of that is because life has been very "normal", it is also because what I need to blog about is too raw.  I have searched for the right way to share updates, but it has just been too hard.  So I apologize this post may be long, but I feel like it needs explanation...

For years, I've found blogging as an outlet to work through what we're facing, sharing our story with others to help them not feel alone in their journey, and documenting the journey for Reagan and Cole so they can one day go back and see how hard they've worked to get where they are.  But I find it interesting that sharing has become so difficult for me.  I've been blogging since Reagan's brain surgery and have been very open and honest about everything.  The good, the bad, and the ugly.  The celebrations and the tears.  For some reason, I'm finding it much harder to share the behavioral and cognitive struggles than it has been the physical ones.  But as I struggle through this, I feel drawn to write.  Drawn to share.  Drawn to help others better understand the raw and ugly side of learning disabilities.  So much of social media today is sharing the happy times.  And they should be! Parents should be proud of the awards their children are getting, amazing grades, championship trophies for sports or performances.  But this time of year especially, I am drawn inward to wallow in the struggles of my children with other special needs parents. Feeling sadness for how our children sit in these ceremonies not feeling adequate to reach for any of the awards being given.  Forced to question self worth and value amongst the overachievement that is so common in Loudoun County with many valedictorians having over a 4.7 GPA.  And while I tend to get caught in the rat race, I remind myself that truly what is important in life is being HAPPY.  Because what is all that success worth, if you aren't happy?  But even happiness is about perspective...

I remember as a child having a friend Amanda whose brother had seizures.  Until I experienced a seizure with Reagan, my perspective was, "no big deal, just make sure they don't hurt themselves while having one."  I never stepped inside the shoes of that boy or that mother.  What if Reagan is at the top of the playground equipment?  What if she's driving? What if she's in middle school and wets her pants?  How do I help her understand and prepare for that?  Or do I not tell her and wait until it happens so she doesn't build anxiety for something we don't know when or if it will happen?  Many times in the last ten years I have faced other people's issues very differently than before Reagan started having seizures because I quickly realized you really don't understand until you've faced something yourself or have been close to someone who has.  Which makes me hesitate to share stories and struggles because I fear they will not be understood by all.  And judgements are often quick to come...I know, I was there too before my eyes became wide open.  But as I'm drawn to share, it requires me to share the raw side and therefore the gates are opened...

We just finished one of the hardest school years yet.  We made the decision last summer to start Cole on medication to help regulate his behavior, stay on task, and most importantly, stop being bullied.  He is so often misunderstood.  In the quiet of our home, I get the sweetest kisses.  He snuggles and reminds me how special I am to him.  Yet he is pushed off his seat on the bus.  Told he is annoying.  Told to shut up.  Regulating the medication has been so challenging.  We started out slow, ramped up, and it still didn't work well. Then we moved to a long acting medication so he could make it home and get his homework done before it wears off.  Then he became hyper focused on something unrelated to instruction and missed the lecture.  So we switched again.  All I have to say is that this juggle ain't no joke.  Again, I always just thought, "so you have ADHD and move around a lot...big deal."  Wow, I had no idea how it would affect every facet of our lives.  His relationship with his friends, teachers, and even his own sister.

On top of these struggles is the big decision of how Cole should access his curriculum.  Braille is coming very slowly.  He's trying hard and doing well, but he doesn't see the value in this language yet.  Statistically, the National Federation of the Blind states that  63% of adults with vision disabilities are unemployed.  That's huge!
 
We requested another technology assessment and it was determined that the CCTV no longer works well for him and that he should have an iPad to access the curriculum.  Although hesitant about how this will be integrated, I have to trust that we will figure it out.  Unfortunately the rest of the children at our school are given Google Chromebooks but the applications he needs are not compatible on that device so he will need to learn to use both.  I pray daily that we are making the right choices.  That we are leading him down the right path.  That one day he is accepted by others who understand Cole for the amazing, sweet child that he is.  He has so much potential, it's just finding a way to help him while maintaining his self-esteem.

That brings us to Reagan.  I've known the 4th grade curriculum would get harder, but I had no idea how intense it would be.  Reagan worked SO hard this year and we are SO proud of her.  Just as she has faced her physical challenges, she has really tried to keep up cognitively.  She studied a LOT more than most kids in her class.  What has saved her this year is that her classwork and participation are solid.  But for any given test we studied every night for a least a week.  Unfortunately she struggled to grasp the concepts and dropped further behind throughout the year both in public school and in church school.  I had her retake tests when she got a 1 or 2 (on a 4 point scale).  And in my defense, she always brought her score up from failing to passing.  On most weeks she had a spelling test on Friday plus unit quizzes, a test (either math, science or history) and a re-test.  Unfortunately, the rigorous studying caused her to get very frustrated and feeling depleted.  She started asking why she should bother studying when she's just going to fail.  If you remember correctly, she lost her IEP last April because she no longer needed physical support (OT/PT) to access her education and had an Orthopedic Impairment diagnosis.  To keep her cognitive goals she would have to go through re-eligibility to find her eligible under a different diagnosis such as Other Health Impairment.  At the time, I was told she "wasn't failing enough" to be found eligible.  So she has spent the last year "failing enough" which justified my request February 7th for a Child Study Meeting to determine whether assessments should be done to find the cause for these learning issues.  In our meeting March 25th everyone on the team agreed testing should be done.  I am still waiting for the final results from the school's testing which is due 48 hours before her eligibility meeting June 18th.  In addition to the public school testing, we decided to have her independently tested by a neuropsychologist due to her complicated medical history.  After spending several weeks trying to find a neuropsychologist, she had her evaluation June 3rd.  Most places I called either had over a year wait for an appointment or charged over $3500 out of pocket.  Even the place we chose wasn't willing to commit to how much we would pay after insurance because the number of tests they run is dependent on how she tested and how much more time would need to be spent writing the report.  Unfortunately they now need 4-6 weeks to write the report findings and then we will schedule a call to review them...so it won't be completed before the June Eligibility meeting.  I plan to request at the meeting that we postpone it a month and hopefully have the results for a late July meeting.  If not, there are no eligibility meetings in August so it would have to wait until September.  That would mean the IEP would not be in place until November...which is halfway through 5th grade...and the process started February 7th.

As if that isn't enough, we're noticing an increase in the tone of her muscles on the left side.  She was in tears over Spring Break because she keeps tripping from her toe drop and she gets scabs on her toes when she wears flip flops.  So I've made an appointment with the physiatrist to talk about trying Botox again and possibly getting a night brace.  We also saw the neurologist and talked about the challenges at school and he has requested an EEG to rule out subclinical seizures that could be causing the attention issues and increased tone.  On top of the EEG this week, she also has her annual appointment with the pediatrician and will be having three teeth extracted.

It's hard to explain the feeling of lack of control when it comes to the behavioral and cognitive issues.  I feel like the physical issues have clear solutions.  Regular therapy. Constraint therapy. Cranial helmet. Leg brace. Eye surgery. Medicine. But when it comes to cognitive and behavioral, the answers are so much more fuzzy.  They are more based on perspective and the direction is not clean cut.  And yet the need to solve them seems so much more intense.  Perhaps that's because the kids are getting older and can verbalize how it makes them feel.  Or because you notice their perception of self in a different way.  Having a background in psychology I've studied how you are affected by the world around you and I know all too well how that shapes who you become.  Does it encourage you to be understanding or cynical? Does it help you be more accepting or bitter? Do you blame others?Does it turn into self loathing?  We all know these people.  We can all become these people. But how we feel about ourselves is the core element of being happy....which truly, if all things are equal, happiness should be our focus.  And yet I find myself pulled into the abyss of tutors, advocates and new theories and programs to solve each of these learning disabilities.  Everyone you talk to has a different answer for how to solve it.  If only it was as easy as just being happy....

Maybe, just maybe, happiness is in the every day when you stop thinking and you just enjoy life.  Happiness is in the smile, the laugh, and the memories that you build every day.  Yes, I will hang my hat on that!  Happiness is my feet in the sand, a sun kissed cheek and a head full of sand !

Neurosurgeon Visit and Indoor Skiing

Just found this post in "draft" that I apparently forgot to post.  Hate to miss it so here it is...

Well I truly haven't had much to post this year (2018), but I will add an update from our appointment with Dr. Myseros in November.  Both kids had a visit with the neurosurgeon.  Cole's appointment was of most concern given we were getting feedback on the FAST MRI that was done a few months ago.  The good news is that the results look stable from the last scan five years ago so everything is working well.  The other amazing news is that he doesn't want to see us back for TWO YEARS!  Wow, what AM I going to do with all this newly found time?!  He also said he would like to wait for any additional brain imaging for five years unless he is symptomatic.  Also great news!

Reagan also sees Dr. Myseros and also had a great check-up.  No symptoms, but still good to keep that relationship in case she starts to show any additional signs of seizures.  As she moves into puberty we expect to have some challenges with medication levels due to varying hormones.  But she will also wait to go back for two years.

So now on to the fun updates.  In anticipation of ski season, we decided to sign the kids up for lessons at the new Indoor Ski Training Center in Leesburg.  We have already requested lessons with the Wintergreen Adaptive Ski School and are waiting to hear back.  We bought the kids their first skis last year and unfortunately Reagan already grew out of hers.  However, Alpine Ski shop has a GREAT buy-back program so we traded in her old ones and got some that fit her a little better.  We were hoping to give them to Cole, but he isn't quite ready for hers.  Looking forward to some snow this year so we can get them out more!

Until then, we will enjoy the holiday season and dwell on all our blessings.  There was a day that I had trouble finding time to post updates between appointments....now I find I don't really have anything of value to post as updates.  And although we still have many challenges that we face with both children, I am eternally grateful to focus a lot less on doctors appointments and more time on fun....and I pray that continues!