Friday, April 12, 2013

5 years

In 2008, Dominic turned 3.  We then all got a horrible flu virus.  He picked it up from the Montessori preschool where we'd been so excited to get him enrolled right after his birthday.   He ran a fever for over a week.  And after the fog of the fever, within a week, his ability to string words together was gone.  It was like he was in a complete fog, no more eye contact, no more interaction.  I remember a friend of ours had been over right before we got sick for something and she ran out to her car.  He looked at me and said "Where Marci Go?".  That's the last sentence he said before he didn't anymore, and the last question he asked for years. 

I started this blog in April of 2008 because we were buried in documenting and trying to figure out what was going on and I needed a place to write it all down.  So many things have happened in those years and if you'd told me 6 years ago that this is where we'd be when he was in the second grade, i would've laughed at you -  special ed, over $100K out of pocket in therapy, the short bus, enemas, shots, enough pills and powders every day to choke a horse, keeping a poop spreadsheet (taking pictures of poop), a sleep spreadsheet, a verbal graph and a behaviors graph....

I cannot believe its been 5 years.  

5 years post regression
4 years, 3 months post diagnosis
4 years, 2 months, 3 weeks of him eating gluten, dairy, and soy free
3 1/2 years with a DAN doctor, 1 year on my own now
4 1/2 years of him taking supplements with every meal. I'm so glad he swallows pills now. 
3 1/2 years of ABA therapy - until we ran out of money
5 years of spending every lunch break I have at work scouring the internet for studies, answers, poop, stories, support...
5 different elementary schools before we landed in this one for kindegarten- we're in its jurisdiction, we're staying.
7 different IEP meetings
4 MD's, 2 nutritionists, 1 Chiropractor, and dozens of assorted therapists

5 years of fighting to get him back.

And in so many ways we've only just begun.

1 comment:

Susan Allen said...

Yes I'm crying. We are making progress at least! I'm thankful for that. You have done amazing research for your son and should be very proud of your strength to keep going. I'm proud of you that's for sure. You are an excellent example of a mom's love. Rodney too.