So it's been a very very long time I don't update news on Devin here, mostly because of time and because honestly he's doing fantastic! (though if we're friends on FB you can see my updates on his page).
* Devin continues to have ABA therapy which has been wonderful - he now takes us by the hand to the bathroom and has connected that he can use the bathroom and hopefully one day soon be off the pull-up diapers.
* His forever school SFACS is on track to open the permanent campus next year so we're looking forward to that - the future is so bright with this school and us being a part of it. The amazing work and advanced way of thinking for our ASD kids is beyond anything we could have imagined for him.
* Unfortunately Devin had a breakthrough seizure in 2016 which extended our seizure protocol (medication) an additional 2 years - we are scheduled to do a new MRI and EEG this year to check if we can wean him off the meds (or lower the dosage); though at this time I'm in no hurry to get him off the meds since he's controlled and God willing will continue to.
* In July 2017 We took Devin on his very first flight! and to California (5 hr flight)!!! I was a little scared of his reaction but he did incredible well. He behaved, slept and overall had a great flight. We enjoyed being in California for the DUP15q Alliance conference and just being tourists hitting all the Cali places to see (Malibu, Hollywood, The Boardwalk, Beverly Hills, LA and even visited Disneyland!!!). We just had a wonderful trip and Devin enjoyed and behaved beyond our dreams. I have to remember to change my expectations of him since he always seems to blow us away - I think his goal in life is to surprise us all LOL.
Thank you for keeping up with us, until the next time! ~ Mom :)
December 30, 2014
Hi Friends and family! As we come to the close of 2014, I look back and realize what a hectic, exciting, full of changes year this has been! We had some little setbacks and yucky stuff thru this year but all the bad stuff was overshadowed by some wonderful events:
First the setback!
And now happy news!!!!
“… Mr. Devin Feterman… this letter is to congratulate you on being offered enrollment in the Agency for Persons with Disabilities Medicaid Waiver program…”
I had to read this a couple of times to grasp it’s meaning… then I had to run and contact the agency as I had a very small window to in fact confirm we still needed the services (pffft as IF!). After almost 6 years on the Medicaid Waiver Wait-List, Devin was finally approved for services due to his disability (and nothing to do with our income). Thank you God, we can finally get the services that Devin NEEDS rather than just what we can afford to get by on. In August Devin’s services began to trickle in and by January (when he’s completely off my insurance) we’ll get the bulk of his needed therapies and services… it’s almost overwhelming to think about how much he’s needed and for so long and didn’t really have until now.
- Eating on his own (partially – still getting help, but he’s understanding what he has to do and is receptive to it)
- Taking us to the bathroom (he’s realizing when he needs to go and we are in turn using less diapers… this is one of our “light-at-the-end-of-the-tunnel”!)
- More socializing (with his little cousin, with us, looking at us in the eyes with intent at communication and understanding this)
- Patience (Devin is now sitting on his own, unaided, in a chair, to play with his computer. He sits longer while interacting with a toy and that is huge)
We look forward to 2015 and what changes, surprises, and daily advances it will bring us. May you all have a wonderfully BLESSED New Year and may God Bless each and every one of you and your home. We love you all! ~xoxo
Devin is enjoying his Ipad to the max! He already knows what programs he wants and swipes to get to them! He's becoming very adept at using his index (pointer finger). yay!
~ Thanks, Dad
Our dearest cousin Belkis has chosen a career to help little ones... She is currently studying Occupational Therapy at FIU.
Recently we were blessed with Belkis' time - She took a break from her intensive studies and internship and is applying her learning with our precious Devin... Belkis is also showing devin how to use an iPad and he's become quite adept and "finding the boy" and other educational games.
We are very grateful for the additional OT therapy - Practice away! Devin can use all the therapy he can get.