Excited and Scared all at the same time... — The Bump
Special Needs

Excited and Scared all at the same time...

So the next four weeks are gonna be big (I hope).

Nate is doing a 4 week intensive PT/OT program at Kennedy-Krieger. It is 2 hours per day and, unfortunately, we will have to miss three weeks of school for the deaf. We are really hoping he can get over his hurdle to walking and work on some spoon and crayon skills. I am tired of dragging around the walker and hope we can figure out what is holding him back from taking off walking unassisted.

I have not told our Feldenkrais PT about it. I think her head would explode. Zip it!

So I feel excited to "move forward" but a bit scared for the change as well as the disappointment if it doesn't work.

 

WAY 2 Cool 4 School


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Re: Excited and Scared all at the same time...

  • Good luck! I'm excited for Nate and I hope he does really well with the program!
  • Good luck! I hope he's able to gain some really great skills during his 4 weeks.
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  • I hope that Nate has a great experience!
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  • So excited for you guys! We've been looking into intensive programs for DD and most of the ones we're interested in have a very long waitlist... and of course, not covered by insurance and super expensive. What is the set up/wait list like at KK?

    I hope it goes really well for you guys so you can at least get to bottom of things! 

    P.S. Don't bother yourself with worrying about what she'll think. You're a great Mom who's clearly on top of looking out for your son. If you get there and see its not a good fit, you'll stop. But I imagine it'll be a great experience. Can't wait to hear more. :) 

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    "In a wild sea of eyes I'd see one pair that I recognize and know that I am the luckiest"- Ben Folds
  • image MummyGruetzie:

    So excited for you guys! We've been looking into intensive programs for DD and most of the ones we're interested in have a very long waitlist... and of course, not covered by insurance and super expensive. What is the set up/wait list like at KK?

    The program is called STP Specialized Transition Program our Dev pedi called it the Boost Program. I think it is used a lot by children recovering from surgeries. I will be able to tell you more once we get going, but our insurance is pretty good and we believe we will not have to pay any out of pocket for the therapies. It will eat up a lot of our therapy coverage though. DH's insurance allows 60 therapy sessions a year and if we do the combined PT/OT everyday for 4 weeks that leaves us with only around 18 sessions left (we've used a few already this year).

    That is also something that scares me. If Nate starts having seizures and has a developmental setback we will be SOL for coverage. I also really want to get him some extra speech and/or hippotherapy....But we could always do that next year.

    We saw the dev pedi February 22nd so I guess there was not much of a wait list. They did say that they like to do all the little ones during the school year. They have a lot of older children that use the service during the summer and some children go back year after year for a boost.

    WAY 2 Cool 4 School


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  • Good luck!  I bet you are going to receive some great ideas, feedback and support from the program.  It can't hurt, right?

    We may be waking our way up to KKI soon.  (Well we will atleast for an appointment).  We were told they have an inpatient cath program, but i've received conflicting information saying they admit basically under behavioral to desensitize to the caths, etc.  

    Hopefully we will find out more info at the appointment in May.  

     

    DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

    DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


  • GL to Nate and you! I hope the intensive program helps get some great progress!
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    DD1, 1/5/2008 ~~~ DD2, 3/17/2010
  • Good luck!  I hope it is a positive experience for y'all!

  • Good luck to Nate!  I'll be crossing my fingers for you guys. 
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  • Good luck with everything! Fingers crossed for Nate and progress.
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  • Thanks ladies! I will report later this week on what I think of the program
    WAY 2 Cool 4 School


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