Isaac update...appt today 4/27

[Guest guest]

As I have just about every visit with every dr this past yr, I am

leaving frustrated.Not with his foot. It still looks awesome. He is

pulling up, and walking holding fingertips. He is 9.5 mnths.

Here is a list of my vents and possible problems. What are your

opinions?

Problem 1:

First the nurse asks how things were going with the shoes/brace?

I say really good, but he is starting to outgrow his shoes and needs a

longer brace soon. She gives me that condescending, I know so much

more than u look, and holds the shoes up to his shoulders. (I have

had it set on the 10 holes for almost 2 mnths- gold bar.)

She then says, " oh, no, that is way too far. he needs on the 8s or

maybe even an 8 and 6. "

I tell her that on the 8s he wouldn't sleep, and he drew his knees

together, plus would kick kick, and cry. And that we have had it on

the 10s for 8 wks. She gets upset that we moved it out, and says that

we have to talk to the dr bc putting it that far out could cause hip

damage.

I say, I measure from shoulder to shoulder, how do u typically measure.

She says the same, and holds it up. She angles her fingers in and

says see. I totally disagree with how she measures it, and there was

no way that I was going to put him back down to the 8s.

The dr agreed with me, and he stays at the 10s but they wouldn't order

me another bar bc they said that one will be fine for a long time.

Problem 2: They won't split Markell sizes. They also will not order

half sizes, so he has a pair of size twos that he probably won't fit

correctly in for a long time. He is now fitting great in a 0 and a 1.

Problem 3: 6 months until next checkup

Problem 4:

6 wks post tenotomy 18-20 dr orders (we did 21-22hr)

next 6 weeks 18-20 hr dr advised (we just completed doing 18-19 hr)

next 6 months naps and nightime no hours discussed dr advised

Problem 5:

they wanted to move the clubfoot angle to 45 degree to match the

regular foot to make it " easier " on me to get it on him, and for him

to comply with wearing it?!?!

and if we see any regression, to move it back to 70 degree.

Why mess with it if it is not bothering him now, and chance losing

flexibility only to hurt him to stretch it back out later or have to

recast??

Dr. said I could leave it if I wanted to, if Isaac was fine with it,

and I had no problems with it

His foot looks great but I don't want to chance regression, plus I am

so tired of always fighting the nurses who think they know

everything. that is the part that sucks the most. ok, vent over.

please advise.