Re: Sierra update and prayer requests

[Guest guest]

Natasha,

I'm so happy she is finally willing to wear it. is the same way if we try

to put headphones on him he freaks but he will spontaneously just grab them and

put them on, unfortunately they aren't turned on and as soon as I intervine and

try to turn it on out come the ear phones. So we resorted to a soundfield

system. Anyway I hear it is not uncommon for them to hate the whole thing in

the beginning but after a while they really end up liking it. Just wait until

she starts understanding more of what she is hearing, then she will probably not

want to be without it. I am thinking probably she doesn't like it in the car

because cars are rather noisy and so it's probably just really loud to her.

I'm sorry she is having so many problems with her trach, and I will keep you

guys in my prayers. I know she has had so many problems with previous surgeries

and all the complications and infections and I will be praying that this goes

smoothly with only good results. Keep us updated when you can.

[Guest guest]

Natasha,

I'm so happy she is finally willing to wear it. is the same way if we try

to put headphones on him he freaks but he will spontaneously just grab them and

put them on, unfortunately they aren't turned on and as soon as I intervine and

try to turn it on out come the ear phones. So we resorted to a soundfield

system. Anyway I hear it is not uncommon for them to hate the whole thing in

the beginning but after a while they really end up liking it. Just wait until

she starts understanding more of what she is hearing, then she will probably not

want to be without it. I am thinking probably she doesn't like it in the car

because cars are rather noisy and so it's probably just really loud to her.

I'm sorry she is having so many problems with her trach, and I will keep you

guys in my prayers. I know she has had so many problems with previous surgeries

and all the complications and infections and I will be praying that this goes

smoothly with only good results. Keep us updated when you can.

[Guest guest]

I will be sure to keep Sierra in my prayers. God Bless you all.

Deborah

Natasha and Rick wrote:

Hi everyone,

I just wanted to update everyone on how well Sierra is doing. It has been 10

days since she was activated. It is amazing to watch her now. She looks up

when she hears noises (unless she is too involved in playing with a toy).

Sierra has already gone through the three settings on her speech processor. We

go back next week for another mapping. We were having trouble with Sierra

leaving it on in the car, but she has been doing well with it since Sunday. It

seems the only time it is off is when she is lying down (if comes off when she

turns her head against the carpet) or bedtime. She has to be the one to put in

on in the morning but she does now (she likes to be in control). She has no

problem if it accidentally gets knocked off and we replace it. I am so thankful

(praise God) that she has done so well and it didn't turn into a power struggle.

Our prayer request is that Sierra has to have surgery again, Oct 4th to remove a

fibroma (granular tissue that skin has grown over) at her trach stoma. Dr.

Cotton will be doing a tract revision, we won't know how much has grown inside

her trachea until he is in surgery. She is expected to stay 2-3 day if it looks

good. If there is more down inside she might have to stay 5-7 days. Right now

it is getting difficult getting her trach in during trach changes. Please pray

that her surgery will go well and only require a short stay. One more prayer

request. The doctors have finally decided that Sierra's nissan fundoplication

has failed. She is vomiting on a daily basis again and it looks like she will

need another fundo to fix this. We are not sure if they will be able to do it

laprascopically or if they will have to do it open. I will update more on this

when we find out when and how they will do it. Thanks for all your prayers and

support. Take care and God Bless.

Natasha~Mommy to~

(8/25/97) & *Sierra (11/28/00)

*Multiple Craniosynostosis, Crouzon's Syndrome,

Asthma, Trach, Tracheamalacia, Bronchomalacia,

Subglottic Stenosis, Chonal Stenosis, FTT,GERD,

G-tube & Nissan, Profound hearing loss, CI implanted 8/19/04. Activated 9/7/04

Sierra's story: www.cappskids.org/CAPPSCranioKidSierra.htm

www.tracheostomy.com/trachkids18.htm

Activation day

Hi everyone,

Today was Sierra's activation day. It has been almost three weeks since her

cochlear implant surgery. Rick took the morning off so he could be there when

Sierra was activated. At first Sierra didn't want anything to do with the

magnet (that connects the internal and external parts together) on her head. We

finally found a toy that she like and we were able to get her first mapping

done. They tried to do NRI testing today, but she didn't care for the noise it

made, so we will try that another day. It was evident right away that Sierra

could hear, something that we have been praying for months about. I thought

that she might cry when it was first turned on (that is what she did when she

first got her hearing aids), but she was just quiet and looking around. At this

point she can hear sounds but she doesn't know what she is hearing. Her mapping

setting are also set low so she can slow get used to hearing without being

overwhelmed all at once. We will go back in another week

or so for another mapping to adjust her settings. The problem we have now is

that she doesn't want to wear the magnet, she doesn't mind wearing the speech

processor. We spent the afternoon trying to get her to wear it. I would put it

on then she would take it off, we did this a couple hundred tries before we

decided to take a break. It took Sierra a month to get used to wearing her

hearing aids, I just hope it won't take that long with her cochlear implant.

Well that is all for now, I will update later on. Take care and God Bless.

Natasha~Mommy to~

(8/25/97) & *Sierra (11/28/00)

*Multiple Craniosynostosis, Crouzon's Syndrome,

Asthma, Trach, Tracheamalacia, Bronchomalacia,

Subglottic Stenosis, Chonal Stenosis, FTT,GERD,

G-tube & Nissan, Profound hearing loss, CI implanted 8/19/04. Activated

9/7/04

Sierra's story: www.cappskids.org/CAPPSCranioKidSierra.htm

www.tracheostomy.com/trachkids18.htm

[Guest guest]

I will be sure to keep Sierra in my prayers. God Bless you all.

Deborah

Natasha and Rick wrote:

Hi everyone,

I just wanted to update everyone on how well Sierra is doing. It has been 10

days since she was activated. It is amazing to watch her now. She looks up

when she hears noises (unless she is too involved in playing with a toy).

Sierra has already gone through the three settings on her speech processor. We

go back next week for another mapping. We were having trouble with Sierra

leaving it on in the car, but she has been doing well with it since Sunday. It

seems the only time it is off is when she is lying down (if comes off when she

turns her head against the carpet) or bedtime. She has to be the one to put in

on in the morning but she does now (she likes to be in control). She has no

problem if it accidentally gets knocked off and we replace it. I am so thankful

(praise God) that she has done so well and it didn't turn into a power struggle.

Our prayer request is that Sierra has to have surgery again, Oct 4th to remove a

fibroma (granular tissue that skin has grown over) at her trach stoma. Dr.

Cotton will be doing a tract revision, we won't know how much has grown inside

her trachea until he is in surgery. She is expected to stay 2-3 day if it looks

good. If there is more down inside she might have to stay 5-7 days. Right now

it is getting difficult getting her trach in during trach changes. Please pray

that her surgery will go well and only require a short stay. One more prayer

request. The doctors have finally decided that Sierra's nissan fundoplication

has failed. She is vomiting on a daily basis again and it looks like she will

need another fundo to fix this. We are not sure if they will be able to do it

laprascopically or if they will have to do it open. I will update more on this

when we find out when and how they will do it. Thanks for all your prayers and

support. Take care and God Bless.

Natasha~Mommy to~

(8/25/97) & *Sierra (11/28/00)

*Multiple Craniosynostosis, Crouzon's Syndrome,

Asthma, Trach, Tracheamalacia, Bronchomalacia,

Subglottic Stenosis, Chonal Stenosis, FTT,GERD,

G-tube & Nissan, Profound hearing loss, CI implanted 8/19/04. Activated 9/7/04

Sierra's story: www.cappskids.org/CAPPSCranioKidSierra.htm

www.tracheostomy.com/trachkids18.htm

Activation day

Hi everyone,

Today was Sierra's activation day. It has been almost three weeks since her

cochlear implant surgery. Rick took the morning off so he could be there when

Sierra was activated. At first Sierra didn't want anything to do with the

magnet (that connects the internal and external parts together) on her head. We

finally found a toy that she like and we were able to get her first mapping

done. They tried to do NRI testing today, but she didn't care for the noise it

made, so we will try that another day. It was evident right away that Sierra

could hear, something that we have been praying for months about. I thought

that she might cry when it was first turned on (that is what she did when she

first got her hearing aids), but she was just quiet and looking around. At this

point she can hear sounds but she doesn't know what she is hearing. Her mapping

setting are also set low so she can slow get used to hearing without being

overwhelmed all at once. We will go back in another week

or so for another mapping to adjust her settings. The problem we have now is

that she doesn't want to wear the magnet, she doesn't mind wearing the speech

processor. We spent the afternoon trying to get her to wear it. I would put it

on then she would take it off, we did this a couple hundred tries before we

decided to take a break. It took Sierra a month to get used to wearing her

hearing aids, I just hope it won't take that long with her cochlear implant.

Well that is all for now, I will update later on. Take care and God Bless.

Natasha~Mommy to~

(8/25/97) & *Sierra (11/28/00)

*Multiple Craniosynostosis, Crouzon's Syndrome,

Asthma, Trach, Tracheamalacia, Bronchomalacia,

Subglottic Stenosis, Chonal Stenosis, FTT,GERD,

G-tube & Nissan, Profound hearing loss, CI implanted 8/19/04. Activated

9/7/04

Sierra's story: www.cappskids.org/CAPPSCranioKidSierra.htm

www.tracheostomy.com/trachkids18.htm