Re: Re: Ranting and Raving!

[Guest guest]

.. You see as an adult I know that he will only be sick about 4 hours, the next day he will be moving around like nothing happened. And the joy on his face with every step that gets him closer to being like most other kids. When he realized he never had to wear the bone conduction aid again he grabbed me and said, "I love you Mommy!" The anesthetic was long forgotten. And the little girl that showed me her new ear. She pulled her hair back to show me an ear that was in no way perfect.

But it was an ear. She was so proud she brought tears to my eyes.

linda this was SOOOO beautiful.

jack

[Guest guest]

,

No need to apologize to anyone. It was just a huge misunderstanding that

was nobody's fault. was angered because a few of you had put a question

to her that was in actuality intended for me. I don't think she even realizes

yet that it was a question for me as Riley's mom.

She felt that everyone was jumping on her because she didn't know that

Riley had GH, When really all you guys were wondering was How I, as Riley's

mom didn't know that she had GH from birth. You guys just accidentally put

her name instead of mine. Easy explanation. Easily resolved.

I was not offended by the question. It was a good question that I did

indeed answer in another post. I would have asked the same question.

So to ease your mind, Nobody is offended by what you asked. I'm sure

that when realizes her teensy weensy mistake she will be slightly

embarrassed for jumping on the three of you. She didn't realize. And she felt

that you all were jumping on her case for not knowing. But I understand her

reason for being angered had the question been actually posed to her instead

of me.

Hope this clears things up,

Take Care,

Lyn

[Guest guest]

,

No need to apologize to anyone. It was just a huge misunderstanding that

was nobody's fault. was angered because a few of you had put a question

to her that was in actuality intended for me. I don't think she even realizes

yet that it was a question for me as Riley's mom.

She felt that everyone was jumping on her because she didn't know that

Riley had GH, When really all you guys were wondering was How I, as Riley's

mom didn't know that she had GH from birth. You guys just accidentally put

her name instead of mine. Easy explanation. Easily resolved.

I was not offended by the question. It was a good question that I did

indeed answer in another post. I would have asked the same question.

So to ease your mind, Nobody is offended by what you asked. I'm sure

that when realizes her teensy weensy mistake she will be slightly

embarrassed for jumping on the three of you. She didn't realize. And she felt

that you all were jumping on her case for not knowing. But I understand her

reason for being angered had the question been actually posed to her instead

of me.

Hope this clears things up,

Take Care,

Lyn

[Guest guest]

<< Anyway, I would reccommend having Brayden be checked if this is an

ongoing problem. Now keep in mind of course that alot of children have

problems with constipation occasionally and his could be just that. >>

I think that may be the case just a normal problem but he may have irritable

(sorry everyone) bowels. He is always having problems one way or the other.

They actually just did a culture that is why when you mentioned this it

caught my attention. I'll wait for the results of the culture and then ask

about this also. He is almost 14 months so we haven't started potty training

yet. He just has problems off and on.

Thanks for the info

[Guest guest]

<< I am sorry if I offended you at all...but I have been accussed of all sorts

of things - and I am not sure why!!! You were lucky that you even know of

GH and HFM when Brayden was born!!! >>

, NO WAY. You did not offend me in anyway at all! I'm right here

learning next to you . I didn't hear about Microtia/Atresia, until we

did research on our own also.

[Guest guest]

..

I was not offended by the question. It was a good question that I did indeed answer in another post. I would have asked the same question.

So to ease your mind, Nobody is offended by what you asked. I'm sure that when realizes her teensy weensy mistake she will be slightly embarrassed for jumping on the three of you. She didn't realize. And she felt that you all were jumping on her case for not knowing. But I understand her reason for being angered had the question been actually posed to her instead of me.

Hope this clears things up,

Take Care,

Lyn

hey are you SURE it was linda who mistakenly jumped on kelly?

i could've sworn it was connie!

lol!

(laughing out loud..!)

let's all lighten up and be friends...

things are tough..the worlds in a mess

nyc, afghanistan, jerusalem...

what we need here is more peace, more love , more understanding,

and a lot more ho ho ho's!

jack

[Guest guest]

When I took Ella to see a Genetitist, he

commented that she has 'tapering fingers'. and would like to see her in six

months time again! Has anyone ever heard of 'tapering fingers'!?!? Is this

a 'sign' of something???

beethoven had 'em. so did mozart. and van cliburn.

( ireally made this up, but hey! could be a sign of musical genius)

jack

[Guest guest]

Hi Autumn...

Thanks for writing back!

I am sorry if I offended you at all...but I have been accussed of all sorts

of things - and I am not sure why!!! You were lucky that you even know of

GH and HFM when Brayden was born!!! I had never even SEEN a child with

" missing ears " before.....and all we were told is that she has deformed

ears!!!!! and then merrily sent on our way home!!!! But I have been hard

at work since.....I felt so much more 'knowledgable' ~ ~ ~ ~ until

yesterday, when I must have said the wrong thing, somewhere!!!!! Anyway, no

use of harping on that!!! When I took Ella to see a Genetitist, he

commented that she has 'tapering fingers'. and would like to see her in six

months time again! Has anyone ever heard of 'tapering fingers'!?!? Is this

a 'sign' of something???

Re: Re: Ranting and Raving!

<< excuse me for being a little naive here......

is it not obvious at the time of birth if a child has HFM and/of GH? >>

I'm a little confused on this also. When Brayden was born and after

I

did some research I asked his ped about both HFM and GH, he told me no

Brayden did not have either, however when we took him to the cranio facial

team at the Children's Hospital they said Yes he does have these?? He

doesn't have any other signs other than the microtia/atresia and the skin

tags. I don't know if the HFM will show up more later?

Autumn

[Guest guest]

THANK YOU LYN!!!!!!

The problem is understood, forgiven, and forgotten!!!!!!!

Regards,

Re: RE: Ranting and Raving!

,

No need to apologize to anyone. It was just a huge misunderstanding

that

was nobody's fault. was angered because a few of you had put a

question

to her that was in actuality intended for me. I don't think she even

realizes

yet that it was a question for me as Riley's mom.

She felt that everyone was jumping on her because she didn't know that

Riley had GH, When really all you guys were wondering was How I, as Riley's

mom didn't know that she had GH from birth. You guys just accidentally put

her name instead of mine. Easy explanation. Easily resolved.

I was not offended by the question. It was a good question that I did

indeed answer in another post. I would have asked the same question.

So to ease your mind, Nobody is offended by what you asked. I'm sure

that when realizes her teensy weensy mistake she will be slightly

embarrassed for jumping on the three of you. She didn't realize. And she

felt

that you all were jumping on her case for not knowing. But I understand her

reason for being angered had the question been actually posed to her instead

of me.

Hope this clears things up,

Take Care,

Lyn

[Guest guest]

Wow, Lyn, you and your family have really gone through a lot! While it is

unfortunate that your daughter's pediatrician wasn't aware of the

possibility of a syndrome and that some of your concerns were brushed off,

don't blame yourself! You had no way of knowing, you were trusting of your

child's pediatrician.... and certainly it is important to trust one's

doctor. When the doctor is unaware of the situation, that makes it really

difficult for parents to seek the appropriate treatment when they don't

realize that this is what they need to be doing!

It's good that you are now aware and taking appropriate action for your

daughter's health and medical needs...

--Connie