so happy I'm crying

[Guest guest]

I should have found a support group MONTHS ago! Thank you so very

much for responding and affirming us. was a very

unexpected and welcome retirement project-born just before my 49th

birthday! Our first grandchild is due in 3 weeks! and while we are

completely thrilled to be experiencing all the joys of baby

FIRSTHAND, all over again, I find that I am a little defensive of my

mothering and almost feel like I have to justify my " right " to fuss

as we have had some cavalier attitudes and negative response. As if

maternal age has anything to do with coping with orthopedic

deformity!!! I am a retired nurse but no experience with clubfoot.

was born in a 22 bed hospital up north, transferred at day

2 to a regional centre for casting ( " non-surgical " ) He went

alternate weeks for manipulation and cast changes. He squirmed out

of at least 4 casts and then would be 1 week or more until next

app't as they wouldn't see him in the meantime. At 4 months he was

referred to nearest children's hospital (3 1/2 hours away) for

splints and possible tenotomy. We waited, out of casts for 5 weeks

with no response from Children's hospital. (I phoned twice a week

to check on app't) Fortunately, a vacationing orthopedic surgeon

from near Toronto met us up north and wanted that baby back in casts

pronto, so arranged for us to see him the next week at his clinic.

Baby had a casting with him - first time the foot was externally

rotated and he did look strange! then this surgeon got us into

Childrens Hospital closer to home within 2 weeks. They saw

and decided he was ready for tenotomy even though the Ponseti

surgeon thought he needed 2 or 3 more castings to recover the

correction, and did him the next day! (general anesthesia) Baby

was to have that cast off 2 weeks later and go into splints.

However the surgeon here said he'd only wear splint at night since

he was " so big " . When I protested that I had been instructed

STRICTLY by Ponseti doctor that compliance was essential, 23

hours/day for first 3 months, they chuckled and seemed to think I

was making a big deal out of nothing. During our 3 hour wait for

our 9:30 app't there was a family with a 3 year old who needs repeat

surgery and she was bitter about the casual attitude here at

children's hosp. So we went back to Toronto doctor to have cast off

at 3 weeks and he ordered splint. (I am sure he told me it would be

1 inch wider than hips.) Anyhow, we decided to get orthotics

locally (mistake)and phoned the hospital here to know where to go.

It was 2 weeks before we could be seen and then 2 weeks before they

could get the shoes/splint. I can't understand this since if we had

gone ahead and done this in Toronto it would have all been done the

very next day! I really appreciate the encouragement that it is

important for me as 's mom to push for correct treatment.

The Doctor wrote a prescription for the shoes/bar so you would think

they could do it correctly? $180.00 later, I am very unhappy that I

accepted the shoes as I knew when I saw them that it wasn't as the

Dr described.

The baby and I have moved back down here (London) with his older

siblings as there are some in the University here and his daddy

commutes 4 hours each way every w/e. We thought we should be where

he could get consistant care, and I wanted to be closer to my other

kids. I can see that we will still be on the road as the only

doctor we have confidence in is 2 1/2 hours away in Toronto!

Thank you so much for responding (and reading this loooong response)

Margaret