Re: Re: Starting to make pre laug. sounds

[Guest guest]

I'm sorry that I haven't kept up with your daughters

" journey " ... Dr. G has her on anti fungals, and after

being on them for 2 months has began to say some

words?

My son has been on anti-viral for about 3 weeks and

has said " tickle " " yes " " cookie " - not on a consistent

basis yet, but this is a start!! Anyone else have

anything to share about what their child did when they

began speaking? Just curious by it all!!

Thanks-

--- Sheri <eszbi5@...> wrote:

> I am so thrilled to report that my daughter is

> babbling on a constant bases. Her sounds are

> sounding more and more normal. Well I can honestly

> say that the little bugger said Dada yesterday and

> knew exactly what she wanted. Her dad was mowing

> the yard and she was at the sliding door screaming

> Da Da and when he didn't respond she screamed Ba Ba

> and in Chinese that is Da Da. She then said I want

> in Chinese. I am wondering how much Chinese she

> remembers because her tones are much like a person

> who would have spoke Chinese. I am glad that I

> learned a few things so that I recognize these words

> and I am thrilled that she is beginning to speak.

> She has been on anti fungal for about 2 months.

> Sheri

>

>

> ---------------------------------

> Do you ?

> Get on board. You're invited to try the new

> Mail Beta.

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

My daughter is being treated by Dr. Russel in NY he also has an office in Texas.

We have been out of town for more than a week for the NOAH conference and are

now at my brothers in Ohio and I have to say that this trip has been amazing.

had so much social interaction with others who have albinism (she also

has a brother who has albinism) and she reacted so positively. She had many

first this week. She waved with her hand in a upright position to another child

who said, " Hi . " without being prompted. Normally when waves her

hand is down and backward. Another person said, " Hi . " and

actually said " Hi! " She was swimming like a fool in the hotel pool and everyone

was yelling Get Carol and yelled Get Call. Another time I ask her if she

wanted to go swimming and she excitedly said yep. She danced for an hour while

others took her picture. She turned when people called her name and she

splashed people in the pool when I told her to

splash and one of the things that I find most interesting is that she was able

to pump herself on the swing set today and she followed my sister who

is 4 around while played. This is the closest that she has come to

playing with others to date with the exception of jumping on the trampoline with

my son. I can see such improvements with and I pray that they will

continue. Sheri

Curtis and Hackler <thehacks@...> wrote: I'm sorry that I

haven't kept up with your daughters

" journey " ... Dr. G has her on anti fungals, and after

being on them for 2 months has began to say some

words?

My son has been on anti-viral for about 3 weeks and

has said " tickle " " yes " " cookie " - not on a consistent

basis yet, but this is a start!! Anyone else have

anything to share about what their child did when they

began speaking? Just curious by it all!!

Thanks-

--- Sheri <eszbi5@...> wrote:

> I am so thrilled to report that my daughter is

> babbling on a constant bases. Her sounds are

> sounding more and more normal. Well I can honestly

> say that the little bugger said Dada yesterday and

> knew exactly what she wanted. Her dad was mowing

> the yard and she was at the sliding door screaming

> Da Da and when he didn't respond she screamed Ba Ba

> and in Chinese that is Da Da. She then said I want

> in Chinese. I am wondering how much Chinese she

> remembers because her tones are much like a person

> who would have spoke Chinese. I am glad that I

> learned a few things so that I recognize these words

> and I am thrilled that she is beginning to speak.

> She has been on anti fungal for about 2 months.

> Sheri

>

>

> ---------------------------------

> Do you ?

> Get on board. You're invited to try the new

> Mail Beta.

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

Sheri,

Wow!! What testing and treatments has Dr. Russel done with your daughter,

and after what thing(s) did you notice the most improvements?

Thanks,

Kristy

Re: Re: Starting to make pre laug. sounds

My daughter is being treated by Dr. Russel in NY he also has an office in

Texas. We have been out of town for more than a week for the NOAH conference

and are now at my brothers in Ohio and I have to say that this trip has been

amazing. had so much social interaction with others who have albinism

(she also has a brother who has albinism) and she reacted so positively. She

had many first this week. She waved with her hand in a upright position to

another child who said, " Hi . " without being prompted. Normally when

waves her hand is down and backward. Another person said, " Hi

. " and actually said " Hi! " She was swimming like a fool in the

hotel pool and everyone was yelling Get Carol and yelled Get Call.

Another time I ask her if she wanted to go swimming and she excitedly said

yep. She danced for an hour while others took her picture. She turned when

people called her name and she splashed people in the pool when I told her

to

splash and one of the things that I find most interesting is that she was

able to pump herself on the swing set today and she followed my sister

who is 4 around while played. This is the closest that

she has come to playing with others to date with the exception of jumping on

the trampoline with my son. I can see such improvements with and I

pray that they will continue. Sheri

Curtis and Hackler <thehacks@...> wrote: I'm sorry that I

haven't kept up with your daughters

" journey " ... Dr. G has her on anti fungals, and after

being on them for 2 months has began to say some

words?

My son has been on anti-viral for about 3 weeks and

has said " tickle " " yes " " cookie " - not on a consistent

basis yet, but this is a start!! Anyone else have

anything to share about what their child did when they

began speaking? Just curious by it all!!

Thanks-

--- Sheri <eszbi5@...> wrote:

> I am so thrilled to report that my daughter is

> babbling on a constant bases. Her sounds are

> sounding more and more normal. Well I can honestly

> say that the little bugger said Dada yesterday and

> knew exactly what she wanted. Her dad was mowing

> the yard and she was at the sliding door screaming

> Da Da and when he didn't respond she screamed Ba Ba

> and in Chinese that is Da Da. She then said I want

> in Chinese. I am wondering how much Chinese she

> remembers because her tones are much like a person

> who would have spoke Chinese. I am glad that I

> learned a few things so that I recognize these words

> and I am thrilled that she is beginning to speak.

> She has been on anti fungal for about 2 months.

> Sheri

>

>

> ---------------------------------

> Do you ?

> Get on board. You're invited to try the new

> Mail Beta.

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

I can't even begin to tell you all the blood tests that have been done but my

daughter is on Dyflucan and taking Natures Way Primadophilus for kids. We

moderate her dose by the color of her stools. In my daughters case if her stool

is light her behavior is terrible and if her stool is dark she does really well.

I have given her up to 3 of the Primadophilus a day one with each main meal. It

is my hope that we are going to begin treatment for viral stuff in August and if

Dr. Russel thinks that she is ready. I believe that she will have some huge

difference after that.

I should add that 's yeast was so significant that we could smell on her

skin. It took me a long time to figure out that was what it was because we

thought that she had the smell of the orphanage but that was not the case. Her

" die off " lasted nearly 3 weeks and honestly I think that there is still some

yeast but not nearly to the extent as before. She will continue on Dyflucan for

a while yet from my understanding.

I was thrilled that so many others saw the significant changes in from

April until now. Some of my friends from the albinism community watched her in

awe and others openly cried at her progress. has had so many things

against her and it is wonderful to see that some things are finally going in her

favor. Sheri

Kristy Nardini <krnardini@...> wrote:

Sheri,

Wow!! What testing and treatments has Dr. Russel done with your daughter,

and after what thing(s) did you notice the most improvements?

Thanks,

Kristy

Re: Re: Starting to make pre laug. sounds

My daughter is being treated by Dr. Russel in NY he also has an office in

Texas. We have been out of town for more than a week for the NOAH conference

and are now at my brothers in Ohio and I have to say that this trip has been

amazing. had so much social interaction with others who have albinism

(she also has a brother who has albinism) and she reacted so positively. She

had many first this week. She waved with her hand in a upright position to

another child who said, " Hi . " without being prompted. Normally when

waves her hand is down and backward. Another person said, " Hi

. " and actually said " Hi! " She was swimming like a fool in the

hotel pool and everyone was yelling Get Carol and yelled Get Call.

Another time I ask her if she wanted to go swimming and she excitedly said

yep. She danced for an hour while others took her picture. She turned when

people called her name and she splashed people in the pool when I told her

to

splash and one of the things that I find most interesting is that she was

able to pump herself on the swing set today and she followed my sister

who is 4 around while played. This is the closest that

she has come to playing with others to date with the exception of jumping on

the trampoline with my son. I can see such improvements with and I

pray that they will continue. Sheri

Curtis and Hackler <thehacks@...> wrote: I'm sorry that I

haven't kept up with your daughters

" journey " ... Dr. G has her on anti fungals, and after

being on them for 2 months has began to say some

words?

My son has been on anti-viral for about 3 weeks and

has said " tickle " " yes " " cookie " - not on a consistent

basis yet, but this is a start!! Anyone else have

anything to share about what their child did when they

began speaking? Just curious by it all!!

Thanks-

--- Sheri <eszbi5@...> wrote:

> I am so thrilled to report that my daughter is

> babbling on a constant bases. Her sounds are

> sounding more and more normal. Well I can honestly

> say that the little bugger said Dada yesterday and

> knew exactly what she wanted. Her dad was mowing

> the yard and she was at the sliding door screaming

> Da Da and when he didn't respond she screamed Ba Ba

> and in Chinese that is Da Da. She then said I want

> in Chinese. I am wondering how much Chinese she

> remembers because her tones are much like a person

> who would have spoke Chinese. I am glad that I

> learned a few things so that I recognize these words

> and I am thrilled that she is beginning to speak.

> She has been on anti fungal for about 2 months.

> Sheri

>

>

> ---------------------------------

> Do you ?

> Get on board. You're invited to try the new

> Mail Beta.

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________