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OI CHILD

Sebastian's Rodding Experience

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OI Children are like snowflakes-----no two are just alike.

Sebastian is 21 months and is a type III/IV but presents more like an
IV. He has been on PAM since he was 6 weeks old following the
Montreal Protocol. We had a port put in when he was 10 months old
that works FABULOUS! Which was great because our very next treatment
was at home. I just adore Sebastian's nurse Sue, she comes once a
month to flush the port and every 8 weeks for treatments. Sebastian
likes her too.
We shopped around for rods and I never felt completely happy with the
Docs or Orthos until I met Dr McCarthy form Philadelphia Shriners. He
personally returned my call the same day. He gave us an appointment,
I `d say within the month of my first call. We did not have to wait
really long on first visit, he sent us for an x-ray and agreed to do
his femur. I said what are the chances of doing all 4 (Femurs and
Tibs), he smiled a friendly smile and said, "I've never done
all 4 but let me think about it." He called within the week and said
he would try as long as there was no complications.  I knew it may sound cruel but I thought it would be better to deal with the spica the pain meds and the rehab JUST one time.
Day of surgery came and every thing went really really well. Dr
McCarthy started around 9:00 and was completely done ALL FOUR by 1:00.
Shriners is one of the cleanest hospitals I have ever seen. The staff
is so wonderful. Everyone treats you like your part of the family.
After the Surgery Sebastian had his own private Nurse round the clock
for 2 and days. We moved into a regular room for one day and we
were able to go home. So we had all 4 leg bones rodded in 4 hours and
stayed in the hospital 4 days.
About a week later I thought I felt a bump on his Bum, I Did Feel A
bump I Swear. Called Dr McCarthy's Nuse coordinated Debbie
Armstrong (Who is a lovely person) and she had us come in the same day. Because I was an add on we did have to wait a little while but the waiting
room has TV's, books and Snack machines. We went in Doc exam room
turned him on his tummy and there was no bump (which I was sure was a
rod about to bust through ... nothing natta. We turned him to his
side and did feel a little something which was supposed to be there.
A little knowledge is a dangerous thing or in my case an over active
imaganation. The staff was quite impressed with my spica because it did not smell. I know Jeannie is the Queen of the spicas but I'm a good learner
(Thanks to everyone)I am wearing the crown for a few more days!
I post some pictures to show my secret pee pee weapon only works for
boys … I think any way. Have a Blessed Day And believe in miracle we live with one everyday!
Chery
Mom to Sebastian age 21 months OI type III/IV
Also Mom to Jonathan 20, Alex 15 and Gabriel 13 no OI

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