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Reply To: | St. John's University Cerebral Palsy List |
Date: | Sat, 2 Aug 2003 18:33:23 -0400 |
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Hi Betty- welcome. My daughter is now 15 with CP & Turners syndrome,
bilateral cataracts, & some degree of MR. She sees Dr Nuzzo, and has
since she was 4 when he did her hips. We see Paul Jordon out on Long
Island who is a podiatrist, & Mike Smith who with him & is an
orthotist. They work well with Dr. Nuzzo. I hope Heather can get some
help from Dr. Nuzzo-We are in CT , but love him & think he is well worth
the trip. Joy
>
>
>>Hi,
>>I joined the list on the advice of Pam...and here I am introducing myself on
>>the advice of Kat! It first I thought I was on the wrong list!..Its great you
>>find other things to converse about besides CP.
>>
>>I am the mother of a grown child/adult with CP. I am on the CPP list and am
>>finding that the older my daughter gets the less helpful the list is. I do
>>remain on the list and respond where there is something encouraging I can say
>>to a parent with a child similar to my own.
>>
>>I always tell parents...no one knows your child like you do!...I raised her
>>on that prospective.
>>
>>Heather is almost 27 now and was diagnosed with CP at age 2. She had her
>>first surgery at age 3 and 8 or so more since. A few were due to problems
>>other
>>than her CP...but still related to her CP. Shes the type of person when the
>>Dr says...1 percent will have this problem...Shes that 1 percent always.
>>
>>Heather did well in school. Was an Honors student in HS and went on to study
>>Journalism in Boston. She spent the summer between HS and College traveling
>>in France with an exchange student who spent time with us. While in college
>>she also went off to Europe for a year where she lived in a castle in Holland
>>and traveled much of Europe. So she has been more than successful. Shes
>>now a
>>sportswriter here in NJ. She enjoys her job but its time for her to move on
>>to other horizons...meaning maybe a bigger paper or PR.
>>
>>The older Heather gets the harder it is to find Drs who are familiar with CP
>>in Adults. When we do find one we tend to hold on to that DR. Shes has her
>>Dr horror stories as well. At the moment she is having pain in her
>>legs. From
>>her toes to her hips. Not knowing who to see we started out at her
>>podiatrist who did her last Legthenings. Trust me..25 years ago I wouldnt
>>have let a
>>podiatrist touch her. This guy is great. We spent an hour with him going
>>over
>>her probelms. He sent her to see a Rheumatologist. Shes had lots of test
>>done and we are awaiting the results. Shes also had problems with
>>Uveitis...which could mean an immune problem. So far shes still in pain
>>and the
>>Anti-inflammatory isnt helping her at all. She wakes a few times a
>>night. I made her
>>an appt to see I think his name is Dr Nuzzeo in North Jersey. I emailed him
>>and he said he would see her. She doesnt go until Sept 3. She cried what
>>am I
>>supposed to do until then. I have no idea what to tell her. Shes been
>>exercising to see if that improves it. So far it hasnt.
>>
>>Last night she won an audition for a sports announcer at a contest in
>>Philadlephia. She will do a radio show and sports on the local comcast
>>station. We
>>are more than excited for her. She also won a trip and $500 to spend on
>>Jewelry! She went against 4 men and the lady won!
>>
>>Hopefully we will find the reason for her pain in the meantime. Shes one who
>>can stand pain and lives with it well. It doesnt usually keep her from her
>>daily routines.
>>
>>Thank you for listening...as my kids say...Mom get to the point! I guess you
>>can see why I have a daughter who writes!..
>>
>>I would appreciate any thoughts anyone could give me on the problems shes
>>having. Maybe someone has been this route. It cant help to ask!
>>
>>Enjoy your weekend,
>>
>>Betty Green
>>Wenonah, NJ
>>
>>
>
>Asdis night owl mom of the purring cats, Agatha Mist queen of our apartment
>and Odinn Thistill my little baby!!!
>implanted with CI NC24 18 Juni 2003.
>[log in to unmask]
>[log in to unmask] msn messenger
>asdisj_astradsdottir yahoo id.
>Iceland.
>:
>Faith, Hope and Love.
>
>
>
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