Fw: Cyber Journal 10-3-00

October 6, 2000

Dear Family & Friends,

If this is your first time to receive this cyber journal, it is because I

have either just received an e-mail from you and now have your e-mail

address or I have just found the address you gave me sometime over the

last 2 years and have finally added you to my Cyber Journal database. In

any case, I welcome you to look over my shoulder as I write about the

circumstances of my life and that of my family, my thoughts and feelings,

and give updates and prayer requests. This journal is something I do for

me as one way of coping with overwhelming circumstances and keeping

myself connected with those I love and who love me. It would be so easy

to allow myself to become isolated and alone as I struggle with my

daughter's medical problems, minister to hurting people, learn how to

stay in love and raise children of character while living what has become

my life~one of great sorrow and great blessings.

~~~~~~~~~~~~~~~

Can you believe that you are hearing from me so soon to give report on

's surgery? The miracles never cease!!! It's hard to explain what

really goes on when your child has surgery. We usually just give the

facts and details but those are really the most trivial part of the

entire procedure for a parent. What really matters is that we must

release our child into the care of others, wait for the doctor to give us

the results, and be allowed to see our child once again.

was taken into the OR at about 11am~you know, it doesn't get any

easier to hand your child over to someone and trust them with her life.

I have developed a certain perspective on this over the last five years

of surgeries. As she falls asleep after being given the " goofy juice "

medication, I cuddle her up so she is comfortable and secure and remind

her of everything that is going to happen to her in the next hour~ " the

nurse will take you into that room and she will take good care of you and

then, you will see Dr. Billings and when you wake up they will call Mama

and I will come and hold you. " After a prayer, I always carry her to the

doors of the OR and, as we walk, I whisper in her ear the 23rd Psalm and

then the names of all the people who love her. As I hand her to the

nurse and watch her go through the doors and around the corner into the

Operating Room I say goodbye to her and give her to God one more time

knowing that if she doesn't return to me it will be God who will be there

to hold her when she wakes up.

The procedure yesterday was uneventful and showed her trachea to be

completely healed with no additional swelling or scar tissue. Her nasal

passages were still open and looks to need no further dilation. It is

still uncertain whether the epiglottis area and/or her secretions will

pose a problem for her as she learns to breathe on her own.

Her trach tube was downsized in order to provide more resistance and to

encourage her to breathe around the trach through her nose or mouth. We

will eventually begin working with the one-way breathing valve a few

minutes a day and soon with a speech pathologist in the doctor's office.

We will put the valve on before she wakes up in the morning so she will

not notice the change right away and she can begin to develop the muscles

in her airway above the trach that will help her to breathe, cough and

eventually (we hope) speak through her mouth. We will not even attempt

to remove the trach until next summer when the winter and 'sick' season

is over. But it would be so wonderful to hear her voice before then. As

it is, we have no follow-up appointments and no surgeries scheduled for

the remainder of the year and into the spring!! This is truly good news!

I said goodbye to the nurses that have been so wonderful to us in pre-op

and the recovery room over the 5 surgeries we have had this summer and we

were all so glad that we may not see each other again.

spiked a fever of 101 and was coughing up some major gross

secretions after the surgery yesterday. She even grossed out her Aunt

Dawn (who, by the way, was so wonderful to stay with me the entire time)

even though as Dawn says, " you're even grossing me out and I have

dissected Madagascar Cockroaches in Biology lab!! " She had a very

difficult recovery for the rest of the day but I'm happy to report that

today her lungs are clear, she is not coughing, she is in very good

spirits and ready to play!!

Thanks for your thoughts and prayers for us! Your intercession is a

great source of strength and power in our lives.

Love and blessings,

________________________________________________________________

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Juno now offers FREE Internet Access!

Try it today - there's no risk! For your FREE software, visit:

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October 6, 2000

,

Your thoughts and feelings are beautiful. It brought back memories from Kim and I a few years back. I would hold, cuddle, and talk to her until it was time to go and letting her know I would be there when she got back. We just returned this morning from a sleep study. Now that she is almost 15 and as big as me I can't hold her in my lap any more so I just crawled up in the bed with her. I can still hold her in my arms and it felt so good knowing I can still comfort her. Your journal page really touched me. Thank you. Lydia

mom to chrgr Kim, Alia, , and

M wrote:

Dear Family & Friends,If this is your first time to receive this cyber journal, it is because Ihave either just received an e-mail from you and now have your e-mailaddress or I have just found the address you gave me sometime over thelast 2 years and have finally added you to my Cyber Journal database. Inany case, I welcome you to look over my shoulder as I write about thecircumstances of my life and that of my family, my thoughts and feelings,and give updates and prayer requests. This journal is something I do forme as one way of coping with overwhelming circumstances and keepingmyself connected with those I love and who love me. It would be so easyto allow myself to become isolated and alone as I struggle with mydaughter's medical problems, minister to hurting people, learn how tostay in love and raise children of character while living what has becomemy life~one of great sorrow and great blessings. ~~~~~~~~~~~~~~~Can you believe that you are hearing from me so soon to give report on's surgery? The miracles never cease!!! It's hard to explain whatreally goes on when your child has surgery. We usually just give thefacts and details but those are really the most trivial part of theentire procedure for a parent. What really matters is that we mustrelease our child into the care of others, wait for the doctor to give usthe results, and be allowed to see our child once again. was taken into the OR at about 11am~you know, it doesn't get anyeasier to hand your child over to someone and trust them with her life. I have developed a certain perspective on this over the last five yearsof surgeries. As she falls asleep after being given the "goofy juice"medication, I cuddle her up so she is comfortable and secure and remindher of everything that is going to happen to her in the next hour~"thenurse will take you into that room and she will take good care of you andthen, you will see Dr. Billings and when you wake up they will call Mamaand I will come and hold you." After a prayer, I always carry her to thedoors of the OR and, as we walk, I whisper in her ear the 23rd Psalm andthen the names of all the people who love her. As I hand her to thenurse and watch her go through the doors and around the corner into theOperating Room I say goodbye to her and give her to God one more timeknowing that if she doesn't return to me it will be God who will be thereto hold her when she wakes up.The procedure yesterday was uneventful and showed her trachea to becompletely healed with no additional swelling or scar tissue. Her nasalpassages were still open and looks to need no further dilation. It isstill uncertain whether the epiglottis area and/or her secretions willpose a problem for her as she learns to breathe on her own.Her trach tube was downsized in order to provide more resistance and toencourage her to breathe around the trach through her nose or mouth. Wewill eventually begin working with the one-way breathing valve a fewminutes a day and soon with a speech pathologist in the doctor's office. We will put the valve on before she wakes up in the morning so she willnot notice the change right away and she can begin to develop the musclesin her airway above the trach that will help her to breathe, cough andeventually (we hope) speak through her mouth. We will not even attemptto remove the trach until next summer when the winter and 'sick' seasonis over. But it would be so wonderful to hear her voice before then. Asit is, we have no follow-up appointments and no surgeries scheduled forthe remainder of the year and into the spring!! This is truly good news!I said goodbye to the nurses that have been so wonderful to us in pre-opand the recovery room over the 5 surgeries we have had this summer and wewere all so glad that we may not see each other again. spiked a fever of 101 and was coughing up some major grosssecretions after the surgery yesterday. She even grossed out her AuntDawn (who, by the way, was so wonderful to stay with me the entire time)even though as Dawn says, " you're even grossing me out and I havedissected Madagascar Cockroaches in Biology lab!!" She had a verydifficult recovery for the rest of the day but I'm happy to report thattoday her lungs are clear, she is not coughing, she is in very goodspirits and ready to play!!Thanks for your thoughts and prayers for us! Your intercession is agreat source of strength and power in our lives.Love and blessings,________________________________________________________________YOU'RE PAYING TOO MUCH FOR THE INTERNET!Juno now offers FREE Internet Access!Try it today - there's no risk! For your FREE software, visit:http://dl.www.juno.com/get/tagj."5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July20-22, 2001. Information will be available first in CHARGE Accounts, theCHARGE Syndrome Foundation's newsletter."For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter)please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org

October 7, 2000

,

I am so happy to see is doing fine. You brought tears to my eyes

reading your journal notes and your attitude about it all. is lucky

that her mother realizes that she is in fact in God's hands and that if

something happened(which we are so happy it didn't) she would wake up in

God's arms and not mommy's. That is what gives me peace with and now

Jillian. At 's funeral I had a song " Jesus' Rocking Chair " sung....and

I know that's where is. But Jillian is here with me and I am so

grateful to God for giving me her.

God Bless you and and her recovery.

Foley

Mom to 5, (CHARGEr in heaven) and Jillian 2 1/2 cHaRGE

Fw: Cyber Journal 10-3-00

> Dear Family & Friends,

>

> If this is your first time to receive this cyber journal, it is because I

> have either just received an e-mail from you and now have your e-mail

> address or I have just found the address you gave me sometime over the

> last 2 years and have finally added you to my Cyber Journal database. In

> any case, I welcome you to look over my shoulder as I write about the

> circumstances of my life and that of my family, my thoughts and feelings,

> and give updates and prayer requests. This journal is something I do for

> me as one way of coping with overwhelming circumstances and keeping

> myself connected with those I love and who love me. It would be so easy

> to allow myself to become isolated and alone as I struggle with my

> daughter's medical problems, minister to hurting people, learn how to

> stay in love and raise children of character while living what has become

> my life~one of great sorrow and great blessings.

> ~~~~~~~~~~~~~~~

>

> Can you believe that you are hearing from me so soon to give report on

> 's surgery? The miracles never cease!!! It's hard to explain what

> really goes on when your child has surgery. We usually just give the

> facts and details but those are really the most trivial part of the

> entire procedure for a parent. What really matters is that we must

> release our child into the care of others, wait for the doctor to give us

> the results, and be allowed to see our child once again.

>

> was taken into the OR at about 11am~you know, it doesn't get any

> easier to hand your child over to someone and trust them with her life.

> I have developed a certain perspective on this over the last five years

> of surgeries. As she falls asleep after being given the " goofy juice "

> medication, I cuddle her up so she is comfortable and secure and remind

> her of everything that is going to happen to her in the next hour~ " the

> nurse will take you into that room and she will take good care of you and

> then, you will see Dr. Billings and when you wake up they will call Mama

> and I will come and hold you. " After a prayer, I always carry her to the

> doors of the OR and, as we walk, I whisper in her ear the 23rd Psalm and

> then the names of all the people who love her. As I hand her to the

> nurse and watch her go through the doors and around the corner into the

> Operating Room I say goodbye to her and give her to God one more time

> knowing that if she doesn't return to me it will be God who will be there

> to hold her when she wakes up.

>

> The procedure yesterday was uneventful and showed her trachea to be

> completely healed with no additional swelling or scar tissue. Her nasal

> passages were still open and looks to need no further dilation. It is

> still uncertain whether the epiglottis area and/or her secretions will

> pose a problem for her as she learns to breathe on her own.

> Her trach tube was downsized in order to provide more resistance and to

> encourage her to breathe around the trach through her nose or mouth. We

> will eventually begin working with the one-way breathing valve a few

> minutes a day and soon with a speech pathologist in the doctor's office.

> We will put the valve on before she wakes up in the morning so she will

> not notice the change right away and she can begin to develop the muscles

> in her airway above the trach that will help her to breathe, cough and

> eventually (we hope) speak through her mouth. We will not even attempt

> to remove the trach until next summer when the winter and 'sick' season

> is over. But it would be so wonderful to hear her voice before then. As

> it is, we have no follow-up appointments and no surgeries scheduled for

> the remainder of the year and into the spring!! This is truly good news!

> I said goodbye to the nurses that have been so wonderful to us in pre-op

> and the recovery room over the 5 surgeries we have had this summer and we

> were all so glad that we may not see each other again.

>

> spiked a fever of 101 and was coughing up some major gross

> secretions after the surgery yesterday. She even grossed out her Aunt

> Dawn (who, by the way, was so wonderful to stay with me the entire time)

> even though as Dawn says, " you're even grossing me out and I have

> dissected Madagascar Cockroaches in Biology lab!! " She had a very

> difficult recovery for the rest of the day but I'm happy to report that

> today her lungs are clear, she is not coughing, she is in very good

> spirits and ready to play!!

>

> Thanks for your thoughts and prayers for us! Your intercession is a

> great source of strength and power in our lives.

>

> Love and blessings,

>

> ________________________________________________________________

> YOU'RE PAYING TOO MUCH FOR THE INTERNET!

> Juno now offers FREE Internet Access!

> Try it today - there's no risk! For your FREE software, visit:

> http://dl.www.juno.com/get/tagj.

>

> " 5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July

> 20-22, 2001. Information will be available first in CHARGE Accounts, the

> CHARGE Syndrome Foundation's newsletter. "

>

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

>

October 9, 2000

,

Thanks for sharing your experience of the surgery. I'm really glad it went so

well, but I too know the fear of what could happen when you hand your child

over, and the tension during the wait which can get unbearable at times.

Great that you felt so much support from the nurses and Dawn.

Tim Hartshorne, father of (11)