Tuesday, June 8, 2010

1/2 way



Wednesday is our 1/2 way point for the feeding program!

I can't believe four weeks have gone by already, it seems like we just started!

Vinny has surpassed all of the goals that were set for him!

 
Amazed, speechless, scared, incredible, strength, persistence, repetition, direction, hope, are just a few of the words that describe how I have felt over the past month...

 
Vincent started this program being 100% tube feed...



Today I am absolutely speechless!



I can not believe how fast he has progressed...



I have only DREAMED of a day like today!



Guess what Vinny did?



He went an entire yes I mean ENTIRE day...



WITHOUT one single tube feed!



It was so weird putting him to bed without going through the routine of making his tube feeding....



Getting out the cooler and ice blocks...



Hooking him up!

I feel so incredible!



I can't wait to get up in the morning and go into his room knowing that I will not find...


puke or that I "feed" the bed!


Vinny, Jim and I have worked so hard to get to this point!

We will continue to work hard to maintain Vin's success...



I have a feeling that many hours will go into feeding and drinking...

The Monroe Meyer's Feeding Clinic is wonderful! The staff is amazing and so helpful!



They are guiding us and giving us so much hope!



Vincent's long term goal is to be eating age appropriate food.

We were told this could take up to two years...



Following this intense daily treatment program, we will go to once a week outpatient treatments.






I so wish I would have been more confident with this program and pushed harder to get in faster...

To actually think my Vin would be drinking out of a cup and actually swallowing is incredible!



I have learned so much about myself and Vincent these past weeks.



I have found that I am really "guilty" of treating Vinny like a "special needs" kid all the time!



I need to put expectations on him like I would all of my other kids.



Vinny used to have his pacifier 99% of the day, now he can go without it and uses it mostly in the car seat and when going to bed.



I have learned that Vinny can learn---faster than I ever thought!


To any of my CdLS friends or anyone else that has a child with a feeding issue, I highly and strongly recommend a program like this!


If you have an opportunity to particpate in one DO IT!


I am scared to think of where we would be without having participated!


I was so skeptical and thought that we (I) could handle Vinny's feeding issues/behaviors especially since I am an ocucpational therapist and have gone through some training (back in the day) with feeding problems!


Our early intervention therapists have been great with helping us with Vinny's feeding stuff, however, we would not be where we are now without this intense feeding program!


Enjoy this little video I put together...


wanted to give you a glimpse of how we do things now...


It is all about repetition...


after all drinks/bites, we give Vin 30 seconds to swallow...


we ask him to "say ahhh"...


He has really gotten the hang of things...


Check out his flapping arms (he used to push our hands away...now he just flaps)



8 comments:

  1. tears. that's SO great, Staci! i'm so proud of you and your little rock star!!!!!

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  2. so precious! I'm so proud of him and y'all for all your hard work! Congrats! he is working his way to real food...how amazing!
    Rhozine :)

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  3. Staci....this is so amazing!!!! I can not even imagine how hard it is for Vin and for you guys. Vin is so lucky to have such a loving family that will take the time to work on these things instead of thinking that is how it HAS to be! Thank you for sharring your story!
    Em

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  4. Thanks for sharing your story. What a victory! And a life-transforming change for Vinny and the rest of the family. Intensive programs are a lot of work, but the benefits are worth the investment.

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  5. Yay Vinny!! I can't believe how fast he is moving along!!! What an amazing little guy!!!!! So proud of him!!

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  6. WOO HOOOOOO!!!!!!! I love it!!!!! What a cute video, and what amazing parents! Thanks for sharing Staci (: xoxoxo

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  7. So glad to hear about Vinny's amazing progress! Hooray for no tube feeds! He has inspired us - we just took Ben yesterday to our local feeding clinic, and we have started the process of getting insurance approval for their intensive feeding program. If all goes well, we plan to start in September or October. I hope he does even half as well as Vinny is doing!

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  8. That is really great! I am so happy for him and you! I have decided that outpatient visits are likely never going to be enough for us. However, we just can't do the time commitment of the intensive program for over a year until the CLB is in full day school. We will see how it goes. But I am so glad to have seen such a positive outcome for you!

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