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!