[tri-med] Re: Caroline's PT update

Hi Irene

You always have the option of asking your EI coordinator for a change in PT.  
It could be that particular PT.  I have found a huge difference from one to 
another within early intervention - and it seems like another hour of PT for 
Caroline ( with someone else ) would be beneficial.  My daughter Esprit has a 
scoliosis also, is getting a kiphosis ( the slumping ) like you talk about due 
to low tone and also scoots forward in her seat.  Our early intervention PT ( 
our third ) does the stretching and gives many ideas to us like the Shriners' 
PT did for you.  I found this PT by chance when the other one went on maternity 
leave, but I have changed OTs in the past because I did not feel Esprit was 
benefiting - and although it feels hard to do - you don't want to hurt anyone's 
feelings.... you are your child's advocate and in the end everyone understands.

Good luck!
Trisha Willingham
Mom to Esprit - Full T18 - and almost 3!  And Sarah - 11 months.

-----Original Message-----
>From: Irene Smith <67.irene@xxxxxxxxx>
>Sent: Mar 29, 2006 9:35 AM
>To: Tri-Med <tri-med@xxxxxxxxxxxxx>
>Subject: [tri-med] Caroline's PT update
>
>I have been complaining for a while about Caroline's PT.  She is SO
>incredibly nice, but I just didn't think she was doing a great job.  We had
>been also taking Caroline to Shriners for AFOs, wheelchair, stander, and for
>her scoliosis.  We talked to the doctor there and they recommended a PT
>evaluation with their therapists.  We finally, after 4 rescheduled appts,
>were able to do that yesterday.  HOLY COW is all I can say.
>I am actually almost sick at how much better their PTs are compared to her
>early intervention PT.  They spent a while just looking at how she is
>positioned in her wheelchair (her EI PT has never even heard of the Kid Kart
>and never looked at how she sits in it).  They worked on stretching for a
>while, recording exactly what her % of range of motion is in every aspect
>(her EI PT has NEVER done any stretching whatsoever!).  They talked to me
>about how exactly your spine strength develops and gave me NUMEROUS ideas on
>ways to increase her strength.  Caroline sits propped on her hands fairly
>well, but she is very hunched over.  She also scootches her butt out when
>sitting in her wheelchair.  They advised me that she needs to increase her
>lower back strength and were so creative in finding ways to do that.  They
>gave me at least 10 new ideas on ways to work with her JUST in regards to
>strengthening her back.  I learned more during this hour than I have during
>the last 2 1/2 years with her EI therapists.  Sad.
>
>I am going to be taking her to Shriners every other week from now on.
>Unfortunately, they are about an hour away from us, so it is not convenient,
>but I HAVE to do this for Caroline.  I am just sick I didn't start this long
>ago.
>
>So, my question is whether I should also keep the EI PT or just discontinue
>services.  She has been basically doing the same exact things with Caroline
>for 2 1/2 years.  On one hand, I feel like I could just tell and show her
>what Shriners is doing, on the other hand, that should be HER job!  I
>shouldn't be instructing her on how to work with Caroline.  She doesn't seem
>to be offering me anything, other than the fact that she does make sure
>Caroline gets a hour devoted to some type of PT each week.  I just feel like
>I don't need her in my house a hr a week and I am really getting annoyed at
>how little she has done.
>
>Another thing that really irks me is how many parents who just accept EI
>therapists not realizing how much they are missing out on!  It is really
>scary!  I wish there was a way I could get the word out, but not sure how
>you would do this.
>
>Any suggestions on how to handle this situation?
>
>Thanks!
>--
>Irene
>Christina (4), Caroline (2 with partial trisomy 17p) and Kallie (born
>6/23/05)
>Caroline's site:  http://www.caringbridge.org/visit/carolinesmith
>
>                  Building ___ooOOoo__ Rainbows
>                       www.trisomyonline.org
>                  Families Helping Families On-line
>

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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