Monday, April 18, 2011

Hope Haven Truly Gives Hope!

wyatt and i just returned from our second visit to hope haven's Down syndrome clinic in jacksonville, florida.   i love to go there! we get so much great information and new ideas;  i wish that everyone had the opportunity to go there.  they are so encouraging and affirming!   

it's a long day, basically 4 therapies in a row, back to back!  today wyatt started with ms. debbie, who is an occupational therapist.  she gave us lots of terrific idea to work on at home!   my main concern in ot wyatt's (lack of) pincer grip.  wyatt has the fattest short little fingers that you have ever seen!  it's really no wonder he has a hard time with that pincer grip!    she really encouraged me to work on strengthening his grip, strengthening those hands, gettting him to use them LOTS!!!!    and so we will.....

and then we moved on to see ms. laura, who does the educational evaluation.  she was so happy with the progess that she saw in wyatt since we were there in october of last year!   it's always fun to hear what others see in our kids, isn't it?  sometimes we miss the progress that they are making!   we talked about some concerns that i have for wyatt, including his sensitivity to sounds.  wyatt often gets upset when there are loud sounds around him.  she offered some ideas for desensitization in that area, ideas for making haircuts more manageable, etc.  she is an awesome resource, and it's great to be able to call or email her with questions and concerns that i might have.

our next session was physical therapy where we got to work with an intern, kristina, as well as ms. kris!  they were very happy with wyatt's strength!   they believe, however, that the only thing holding wyatt back from walking is a vestibular issue.  he has the strength, the range of motion, but is still not walking.  they explained that sometimes the fluid in the ear canals (i think) need to be manipulated, swished around a bit.  so they introduced us to Astronaut Training: A Sound Activated Vestibular-Visual Protocol for Moving, a therapy that involves holding wyatt and twirling around and around in various position to swish that fluid around.   there's more to it than that, but that's the "gist" of it!  after they did it one time, they saw a difference in his stability!   so tim will be working on that with wyatt....because i CAN'T twirl round and round like that! 

 we ended our long day of therapies with ms. melanie, the speech therapist.   she did lots of playing with him, getting him to make sounds, signs, etc.  but he was tired and hungry!  so we moved on to some oral motor exercises!  she used lots of different "tools;" jigglers, z-vibes, nuks, etc., to "wake up" his mouth before we had his yogurt!   it was funny to see him eat his yogurt after that, you could tell that his mouth did feel different!   and we worked on drinking from a cup with a straw.  wyatt is STILL nursing at 21 months, and really could care less about drinking anything else!   so she gave me some ideas to work on that as well!
we ended the day with a quick trip back to ms. laura's office for a "wrap up," which is a nice way to end the day at hope haven!   you hear so much good stuff through the day, sometimes you forget to ask questions, and sometimes you just need clarification on something!   
hope haven is a wonderful place, a tremendous resource for our Down syndrome community!  they see over 1400 children and teens who have Down syndrome every year!   they provide their services at a greatly reduced rate, as well, which is wonderful!  many local organizations offset the cost, or pay for it in its entirety, for the evaluation, which they recommend twice a year.    today i encountered a family from washington state who were in florida and were able to have their daughter to be evaluated; people come from all over for their services!   so if you're anywhere near jacksonville, i highly recommend a visit...but plan ahead; there's a 6-12 month wait...... 


  1. Wow!!! Sounds like a wonderful experience. I bet Wyatt slept well after all of that!

  2. Penny, that is awesome!! I am in Washington State and there is nothing like that here. I was hoping that Seattle Children's Hospital had something similar, but sadly, they do not. I'm so glad you and Wyatt are able to go to Hope Haven! I love reading your updates. Give him hugs and kisses for us!
    Darci & Melody

  3. I just read your post at Patti's and I wasn't half way through it and I was crying like a fool! just beautiful! And all so true! We didn't have a clue about Ds before Emmie was born either, and never had contact with anyone who did.
    she has worked miracles in our lives. definitely has changed us all for the better!