Re: Our visit with Dr. Bauer

[Guest guest]

dear angela,

congratulations on your good news! we go to the neuro on thursday this

week,the 25th?, and was wondering if you could post your list of questions

for me.just a rough idea.i feel like i know so much from everyone on this

list but when i get in there i feel like dumbo mother(or in this

case,auntie).i know in my head what i want to say and even once wrote the

questions down.but if you knew what my house is like on any given day,you'd

know i'd never be able to get my hands on that list now.p.s. the mom is

supposed to come with me to this next appointment,that ought ot be real

ineresting.not a clue does this girl have in her head what's wrong with her

baby.yesterday at a bday party said " oh,you pu THAT thing on her head

today " hello...she wears it everyday,all day long,all night long.tells you of

the mentality i have to deal with.

lynne

[Guest guest]

In a message dated 5/21/00 6:04:23 PM Pacific Daylight Time,

angelakaye@... writes:

<< Well, this is kind of funny. I posted that note back in ummmmm, let's

see, January! I was soo happy the ball was rolling it was almost ridiculous.

>>

Okay, I am not crazy, & I am not having flashbacks! Kimry

[Guest guest]

That is great news! I am VERY good at worrying, as well! Best of

luck to you!

> Hi everybody! I thought I'd tell you how our visit with Dr. Bauer

in Chicago went yesterday. To sum it up, it went Very Well!

>

> Dr. Bauer presented himself as a very calm and thorough man. I had

a printed list of questions to ask. He answered every one of them.

He didn't talk " down " to me or make me feel like a hysterical mother.

He said Grace is moderately affected and the DOC band should bring

her face and ears back into alignment. He also said it may not fully

correct the occipital flattening. At least now I feel like we're

moving forward and getting something done. Grace also has benign

macrocrania. Which basically means she has a big head She may

always have a slightly larger than normal head circumference, but it

shouldn't be something people will stare at. Her soft spot swelling

up is also part of the macrocrania and it's nothing to worry about.

>

> Hooray Hooray! I'm on cloud 9! I didn't realize how entrenched in

worry I had become until we got the good news and the worry was

lifted.

>

> Be glad you aren't around me today, because I cannot SHUT UP!

>

> C.

> /subscribe/Plagiocephaly

[Guest guest]

Well, this is kind of funny. I posted that note back in ummmmm, let's see, January! I was soo happy the ball was rolling it was almost ridiculous.

But, thanks for the good wishes! I'll take them even if they are a little delayed :)

And about the list of questions; I don't know if all of them will pertain to Livie, but I'll print them here. (Can you believe I still have them? I have a huge file with all of Grace's drs and tests and charts and films and just plain STUFF!)

I am the pack-rat to end all pack-rats

Questions for Dr. Bauer questions for Dr. Bauer (his answers are in parenthesis)

1. Would her misshapen head cause her fontanel to bulge? (Not usually, in the case of positional plagiocephaly)

2. Are her sutures all right? (yes)

3. Will her ears align themselves when her head is reshaped (at this visit he said yes, at a follow up visit he said maybe not all the way)

4. Is this causing pressure on her brain? -meaning the plagiocephaly (No, not in Grace's case)

5. Is her head too big? On the growth chart, her head is getting further and further over the 95th percentile while her length is staying within the same range. (Yes, her head is large. She has benign macrocrania and will probably always have a larger head than normal. It shouldn't be obvious to other people, though. Etc. Etc.)

6. In the CT scans, is that extra space between the skull and her brain normal? If it's not, will she be more prone to damage from normal roughhousing/playing airplane, etc. due to her brain being free to "slosh around?" (What looks like "extra space" is actually an artifact. The brain fills the cranial cavity fine. She can be played with like any normal baby of her age.)

7. Is it ok to be doing PT/stretching excersizes for the torticollis? (Yes)

8. Is there any relationship between her head and neck and her not rolling over hardly at all? (More than likely, yes. The weight of her head and the movement restrictions of her neck will slow her down.)

9. Am I being a hysteric? (Big smile and an emphatic NO!)

Of course he went into further detail, but I was just jotting down the basic of his answers. Some of the questions were because of some other problems she was having that weren't exactly related to the plagio. At least, I wanted to make sure they weren't connected.

Kaye/subscribe/Plagiocephaly

----- Original Message -----

From: DOLY1023@...

Plagiocephalyegroups

Sent: Sunday, May 21, 2000 7:08 PM

Subject: Re: Re: Our visit with Dr. Bauer

dear angela,congratulations on your good news! we go to the neuro on thursday this week,the 25th?, and was wondering if you could post your list of questions for me.just a rough idea.i feel like i know so much from everyone on this list but when i get in there i feel like dumbo mother(or in this case,auntie).i know in my head what i want to say and even once wrote the questions down.but if you knew what my house is like on any given day,you'd know i'd never be able to get my hands on that list now.p.s. the mom is supposed to come with me to this next appointment,that ought ot be real ineresting.not a clue does this girl have in her head what's wrong with her baby.yesterday at a bday party said "oh,you pu THAT thing on her head today"hello...she wears it everyday,all day long,all night long.tells you of the mentality i have to deal with.lynne

[Guest guest]

Nope, but I seem to be in an occasional time-warp again tonight.

Kaye

/subscribe/Plagiocephaly

----- Original Message -----

From: <AAKARA@...>

<Plagiocephalyegroups>

Sent: Sunday, May 21, 2000 8:15 PM

Subject: Re: Re: Our visit with Dr. Bauer

| In a message dated 5/21/00 6:04:23 PM Pacific Daylight Time,

| angelakaye@... writes:

|

| << Well, this is kind of funny. I posted that note back in ummmmm,

let's

| see, January! I was soo happy the ball was rolling it was almost

ridiculous.

|

|

| >>

| Okay, I am not crazy, & I am not having flashbacks! Kimry

|

|

|

[Guest guest]

thanks angela,

i've printed your list out for my appointment on thursday...really

appreciated it.good questions too.

thanks,

lynne