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....