update about 20-month-old daughter

[Guest guest]

Hello! I'm not new to the group, but it's been quite a while since I

last posted . . .

I am " returning, " having ignored advice that some of you offered -

and which I now deeply regret not having followed, hoping to get some

more advice and encouragement. Please bear with the long post.

My daugther Zia (20 months today) had/has what I believe would be

described as relatively mild plagio and mild-moderate brachy. I don't

know her " numbers " currently, though if I am remembering correctly

from our last STARband scan (11/2009), she had 1-3mm assymetry and

the other number was an 89. I am guessing just from my eyeball sense

that the numbers are still about the same, with perhaps some slight

improvement.

Her borderline case has made the whole experience (for me) very

difficult. NO ONE ELSE - husband, grandmothers, friends, peds and

staff, STARband orthotist at CIRS in Oakland, even my therapist -

seems to see what I see. I felt making the decision last December to

proceed with getting a band was going against too much opposition.

And I had reservations/hopes myself, since there had been noticeable

improvement without a band. And we live about 3 hours away from the

closest place to get a helmet (we're in Chico and would travel to

CIRS in Oakland). And I recall from this listserv reading about other

parents who shared about how they saw continued improvement after

graduating from the band - which I thought might apply to us, even

though we never did a band. And my daughter has some sensory issues,

so I wasn't sure that she would tolerate a helmet as well as others.

Fast forward to the present: I don't ever look at my daughter's head

without assessing its shape. And most of the time, I look and am

pleased/satisfied. However, when she is sweaty and has bad bed head

or when her head is totally wet (pool and bath), I always get a

sinking feeling in my stomach because it looks to my eye like her

head is a bit " smushed " and is " just not all there. "

About two weeks ago, I had a dreadful thought that is finally getting

me back in action: I imagined that on her wedding day (whenever that

may be ;-)), I would be looking at her head shape and feeling regret,

rather than experiencing all the other emotions that one should feel

in that situation. And it made me ill. So I finally communicated with

my husband that I wanted to move forward with a helmet if at all

possible. He still doesn't support the decision, but he is willing to

go along with it for the sake of my anguish and our marriage.

The complications: Since she is over 18 months, I need a doctor's

note indicating the necessity. Since my ped believes that the issue

is " resolved, " I see this as a potential road block, which I have not

yet attempted to address. I have a plan, though, and am hopeful that

I will have some resolution by early next week. Additionally, I still

have reservations about her tolerating a helmet - and presumably now

more than it would have been had we done this earlier.

So . . . any experience with banding older babies, sensory issues,

dealing with regret, dealing with everyone else who thinks that what

you are doing isn't necessary, etc. would all be greatly appreciated.

One last thing: In addition to the plagio issues, my daughter also

has some developmental delays. They appear mild (i.e. even those

people who know her well are surprised when I tell them), but there

is sufficient concern, confirmed by assessments, such that we are

working with an " intervention specialist " 4 days a week for 1-2 hours

each day (through a State- and Federally-funded program). No one I've

spoken to seems to believe that there is a connection between plagio

and developmental delays; however, I am finding that surprising. In

our case, where torticollis wasn't present, I believe that her not

turning her head while sleeping and her unwillingness to do " tummy

time, " may have been early indicators of her developmental delays. I

certainly don't expect there to be a correlation for all cases, but

perhaps some of you have some similar experiences or hunches.

My daughter doesn't have a diagnosis yet (and the assessment isn't

generally done until at least 2 years), but the intervention she is

receiving is the same as she would be receiving if she were diagnosed

with ASD (autism spectrum disorder). She may never get that

diagnosis, in part because of the early interventions that we are

providing, but I thought it was worth mentioning so you will have a

sense of the types of developmental delays that I am referring to.

Thank you in advance to any of you who are able to respond!

Amy

daughter Zia, 20 months

Chico, CA

p.s. I'm in the process of uploading a bunch of pictures of my

daughter taken over the last couple of months. I believe they will

end up in the V-Z folder, though am not certain I am doing this right.