Wednesday, May 29, 2013

a new normal

With Ben's first seizure we were introduced to a new world.  We learned new things about seizure types, treatment options, medications, risks, side effects, diet therapy, and hospital stays.

But there is more to Doose Syndrome than just seizures. 

We've noticed some delays - some struggles that haven't gone away on their own.  Back in February, we visited a neuropsychologist for an evaluation.  We have submitted those results to our school, completed a few more evaluations, and we just had Ben's ARD last week.  I am so privileged to know this group of educators on a personal as well as professional level, so the meeting went very well. 

It seems like we have been introduced to another new world.  This time we are learning new things about learning disabilities, occupational therapy, and behavior management. 

Leeon and I have been to many ARD meetings as teachers, but it is different to sit on the parent side of the table.  It can be very intimidating and difficult to hear results and prognoses.  It was hard to hear that therapy may not "cure" a particular issue but rather "compensation skills" were the desired outcome. 

But what I know is that my son is more than a number. 
He can do hard things.
He can overcome obstacles.

And he will.

Thankfully, we are getting intervention early, everyday he is making gains, and the delays are in a few specific areas.  He will receive support services next year in all academic areas as well as speech and occupational therapies.  With this added support, I know he will continue to grow and develop.  I also know that we aren't finished weaning meds yet.  We may see another time of HUGE gain when we get another medicine out of his system. 

This post is mostly for the other Doose moms...I know when we first were diagnosed, I was desperate to find any information that I could.  I wanted to see down the road a few years as I wondered what this diagnosis really meant for Ben.  I hesitate to share a lot of details here in cyber-space.  After all, this is HIS story.  {It's interesting how accommodating we tend to be towards health issues, but there is still so much stigma attached to learning disabilities, physical handicaps, and emotional and relational issues - but that's another post altogether.}  I want people to see him for who he is, not for his limitations.  That being said, if you'd like to know more about the special ed process, the testing we've had done, and specific results, please email me so that we can have a private conversation. 

We ask for your continued prayer support.  Please pray that we will have the wisdom to understand the balance of pushing him to reach new limits and yet communicating to him that his best is enough.  We need understanding as we adjust our expectations.  This is not the road we envisioned for him.

We are so thankful that...
God has a plan.
A beautiful future is in store for Ben.
Although this is new territory for us, none of it has surprised his Creator.
God has promised to give us the grace needed to get through this challenge, just as He has seen us through the physical aspects of Doose.


Monday, May 6, 2013

16 reasons to be thankful....

Since today marks 16 months without a seizure, here are 16 things we are thankful for!

  1. No seizures for 16 months - that's 486 days!
  2. He's been off the diet for over a month.
  3. I haven't carried diastat in my purse for a long time now. 
  4. We don't have to plan our entire day around Ben's food anymore.  We can be spontaneous again!
  5. I don't spend hours using the ketocalculator to figure out meals.
  6. Ben has had a cough for the past few days and we were able to give him cough medicine!
  7. Everyday, he seems to be gaining new grounds.  He has initiated and maintained interest in puzzles and board games for the first time in a long time.
  8. He passed his speech therapist in the hallway during school, recognized her and called her by name on his own.
  9. He is asking a lot of questions - he is curious.
  10. He asked me what brownies were when I was baking some for school and he loved getting to be the taste tester.  :)
  11. His blood work all returned normal.  They checked things like potassium, liver enzymes, and cholesterol.  One cholesterol related number went from 186 to 39 in 2 months time.  This was while on the diet and off the diet.  I can't remember if it was his bad cholesterol number or the triglyceride number, but it is definitely looking better now!
  12. Family dinners are so much fun - we ate corn on the cob for the first time since 2011!
  13. His energy level is high! {someone remind me at the end of the day that I'm thankful for this}  :)
  14. He wants to "read" by himself in bed at night for a few minutes.
  15. He can't remember a lot of food he used to have to eat on the diet...he could only name "nuts and cream".  This whole ordeal may only be a memory for me and Leeon.  That would be a blessing.
  16. We are getting our boy back!  Everyday is a better day in some way.  Sometimes its something so small you could almost miss it, but oh, we are thrilled!