Good morning all. I wanted to let you know Austin's surgery is set for
December 2nd. He will have his left side done this time. The right
side was done in April. Please remember him in your thoughts and
prayers.

Danette

Danette,

We will be keeping Austin in our prayers!  And the rest of your
family as well.  God Bless.

Heather

Danette and family

Hope everything gos well, my thoughts and prayers will be with you

Lots of love from Jane, Chloe and Thomas xxxxxxx



dmvcpa_drogers <dsrogers93@...> wrote:
Good morning all. I wanted to let you know Austin's surgery is set for
December 2nd. He will have his left side done this time. The right
side was done in April. Please remember him in your thoughts and
prayers.

Danette





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[Non-text portions of this message have been removed]

Danette, I'm so glad you have a date set for surgery.Please know our prayers
are with your family.Keep us updated please...
Mary Grace


[Non-text portions of this message have been removed]

Will be praying for Austin and your family - for guidance for his
Dr's, healing and peace.  May God be with you..
sue


--- In
parentingchildrenwithmoyamoya@yahoogroups.com, "dmvcpa_drogers"
<dsrogers93@b...> wrote:
>
> Good morning all. I wanted to let you know Austin's surgery is set
for
> December 2nd. He will have his left side done this time. The right
> side was done in April. Please remember him in your thoughts and
> prayers.
>
> Danette

--- dmvcpa_drogers <dsrogers93@...> wrote:
Danette, December 2nd is my husband's birthday, so I'm
sure it will be a good day for surgery.  We'll keep
Austin -- and you -- in our prayers.

Denyse
>
> Good morning all. I wanted to let you know Austin's
> surgery is set for
> December 2nd. He will have his left side done this
> time. The right
> side was done in April. Please remember him in your
> thoughts and
> prayers.
>
> Danette
>
>
>
>
>




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Thank you all for all the kind thoughts. I am glad I am apart of this
great family, and I know people everywhere will be praying for my
little guy.
He is getting really nervous. This will be surgery number 13 for him,
so he knows what is coming. {BTW, I am NOT superstitious:0)} I bought
him some "Going to the Hospital" books from Amazon. They are helping
alot. He actually took one to school today with him to share with his
class. If you are interested, I can share the titles with the list.

Thanks again for the support.
Danette & family

Austin’s surgery time is 1:50pm Thursday. We have to be at the surgery
center at 12noon. Please keep Austin in your prayers.

Danette


[Non-text portions of this message have been removed]

Danette,
      Thank you for keeping us informed.  We will definitely be praying for you
all, especially Austin.  He is such a brave little man.  Would you tell him that
the has friends in Montana that will be thinking about him tomorrow and in the
days to come.  We will be anxiously waiting the good news!
Take care of you and yours,
Sincerely,
The Phillips family - Jay, Rebecca, Koe  4 years old (surgery 8/20/04), Kayo 2
years old (surgery 7/19/2004)

Danette Rogers <dsrogers93@...> wrote:
Austin’s surgery time is 1:50pm Thursday. We have to be at the surgery
center at 12noon. Please keep Austin in your prayers.

Danette


[Non-text portions of this message have been removed]


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[Non-text portions of this message have been removed]

We will be thinking of Austin and all your family today,

All our love Jane and Family xxxxxxx



Danette Rogers <dsrogers93@...> wrote: Austin’s surgery time is 1:50pm
Thursday. We have to be at the surgery
center at 12noon. Please keep Austin in your prayers.

Danette


[Non-text portions of this message have been removed]


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[Non-text portions of this message have been removed]

Danette,

Please tell Austin that we are praying for him in Michigan as well.
Wish we could do more, but we know that prayer are the greatest gift
we can offer to you all now.


Sincerely,
Clark, Heather, Ellie, Erik 9 yrs old (surgery 5/2000 and 10/2000)
and Katie 7 yrs old (surgery 12/1999)

Well, his surgery was scheduled for 1:50. Doug & I walked him down at 4:50,
and surgery started at 6:21. The procedure was finished at 8:00, and then
they had to close him up. It was 9:00pm before he got to the PICU, then
about 9:20 when we got to go see him. He was groggy, but he knew we were in
there. He rested really well last night, and did well.

I am now at the R McD house, and going to get “freshened up”. Doug and my
parents are with him now. We will stay in the PICU until tomorrow, and then
go down to the floor. Thank you all for all your thoughts and prayers. Dr.
Troup said he did GREAT. Troup said Austin is just a pro now…and such a
champ.

Austin is in PICU room #10. We are not able to have our cell phones on in
there. The number to the PICU is (478) 633-1560. You can ask to be
transferred to room #10, or ask for Austin’s room.

Thank you all, again.

Danette



[Non-text portions of this message have been removed]

HI

Im really glad all went well, it must be a big releif for you that the surgery
is over, It is an awful time I remember well, My thoughts have been with you all
week, I wish Austin a speedy recovery and I hope you all have a lovely
Christmas, All my love Jane and familyxxxxxxx



Danette Rogers <dsrogers93@...> wrote: Well, his surgery was scheduled
for 1:50. Doug & I walked him down at 4:50,
and surgery started at 6:21. The procedure was finished at 8:00, and then
they had to close him up. It was 9:00pm before he got to the PICU, then
about 9:20 when we got to go see him. He was groggy, but he knew we were in
there. He rested really well last night, and did well.

I am now at the R McD house, and going to get “freshened up”. Doug and my
parents are with him now. We will stay in the PICU until tomorrow, and then
go down to the floor. Thank you all for all your thoughts and prayers. Dr.
Troup said he did GREAT. Troup said Austin is just a pro now…and such a
champ.

Austin is in PICU room #10. We are not able to have our cell phones on in
there. The number to the PICU is (478) 633-1560. You can ask to be
transferred to room #10, or ask for Austin’s room.

Thank you all, again.

Danette



[Non-text portions of this message have been removed]


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[Non-text portions of this message have been removed]

Danette,
      Such great news!  I thought about you all day yesterday.  I wasnt sure of
the time change, but I knew that yesterday was very trying for all of you. 
Thank God the surgery is over and now the recovery process starts.
      My daughter was scheduled for surgery at 9am and we got right in, in fact
it was about 9:30 and they had started, but with Koes we were scheduled for 1pm
and didnt get in until 4pm.  That is such a long wait especially when they
havent eaten.  These little ones of ours  have endured a lot, it is amazing to
me how well they deal with all that is going on.
      From the time you wrote that Austins surgery was scheduled for yesterday I
kept finding myself thinking of you and how I felt when the days were getting
closer to the kid's surgeries.  My prayer is that through all of this you all
will find joy and peace.  I know that prayer is the only thing that keeps me
going at times.

We will continue to pray for you all.

Your friends in Montana,
Jay, Rebecca, Koe and Kayo

Danette Rogers <dsrogers93@...> wrote:
Well, his surgery was scheduled for 1:50. Doug & I walked him down at 4:50,
and surgery started at 6:21. The procedure was finished at 8:00, and then
they had to close him up. It was 9:00pm before he got to the PICU, then
about 9:20 when we got to go see him. He was groggy, but he knew we were in
there. He rested really well last night, and did well.

I am now at the R McD house, and going to get “freshened up”. Doug and my
parents are with him now. We will stay in the PICU until tomorrow, and then
go down to the floor. Thank you all for all your thoughts and prayers. Dr.
Troup said he did GREAT. Troup said Austin is just a pro now…and such a
champ.

Austin is in PICU room #10. We are not able to have our cell phones on in
there. The number to the PICU is (478) 633-1560. You can ask to be
transferred to room #10, or ask for Austin’s room.

Thank you all, again.

Danette



[Non-text portions of this message have been removed]


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[Non-text portions of this message have been removed]

Austin has made it to the floor. We were moved last night, to room #302. The
phone number is (478) 633-8302. This is the direct line to our room.

Austin is doing great. His swelling is almost gone, and he is not in any
pain. Not any he admits to anyway. :-)

Ok, Dr. Troup just came by, and we are going home in the morning. :-) :-)

Thank you all for your thoughts and prayers.

Doug, Danette Britleigh & Austin




[Non-text portions of this message have been removed]

Wonderful news, isn't it wonderful how children heal so well.

Danette Rogers <dsrogers93@...> wrote:Austin has made it to the floor.
We were moved last night, to room #302. The
phone number is (478) 633-8302. This is the direct line to our room.

Austin is doing great. His swelling is almost gone, and he is not in any
pain. Not any he admits to anyway. :-)

Ok, Dr. Troup just came by, and we are going home in the morning. :-) :-)

Thank you all for your thoughts and prayers.

Doug, Danette Britleigh & Austin




[Non-text portions of this message have been removed]


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Danette,
      Amazing!  We are so happy for Austin.  No pain, that is truely a blessing. 
I bet it will be nice for all of you to get home.  I know that after both of my
childrens surgeries all I wanted to do was take them home.  God has answered our
prayers!
Our thoughts are with you,
The Phillips Family,
Jay, Rebecca, Koe and Kayo



Danette Rogers <dsrogers93@...> wrote:
Austin has made it to the floor. We were moved last night, to room #302. The
phone number is (478) 633-8302. This is the direct line to our room.

Austin is doing great. His swelling is almost gone, and he is not in any
pain. Not any he admits to anyway. :-)

Ok, Dr. Troup just came by, and we are going home in the morning. :-) :-)

Thank you all for your thoughts and prayers.

Doug, Danette Britleigh & Austin




[Non-text portions of this message have been removed]


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[Non-text portions of this message have been removed]

WOW, That is awesome news!!!! I'm so glad all went well. Keep us posted.
Mary Grace


[Non-text portions of this message have been removed]

Austin is at home…YEAH! We got home yesterday around 4:00pm. It is so nice
to be home.

Austin continues to do well; we tend to forget he needs to take it easy. He
seems to be his old self.

Thank you all for all your thoughts and prayers. Please continue to remember
him in your prayers. We know the reason he is doing so well is because of
all the prayers going up on his behalf.

Doug, Danette, Britleigh & Austin


[Non-text portions of this message have been removed]

Yeah Austin!
      Your home!  We are so happy for you.  We'll keep you in our prayers.
The Phillips Family,
Jay, Rebecca, Koe and Kayo

Danette Rogers <dsrogers93@...> wrote:
Austin is at home…YEAH! We got home yesterday around 4:00pm. It is so nice
to be home.

Austin continues to do well; we tend to forget he needs to take it easy. He
seems to be his old self.

Thank you all for all your thoughts and prayers. Please continue to remember
him in your prayers. We know the reason he is doing so well is because of
all the prayers going up on his behalf.

Doug, Danette, Britleigh & Austin


[Non-text portions of this message have been removed]


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[Non-text portions of this message have been removed]

Hello Dannette

I am so pleased you are home, I hope you and your family have a wonderful
Christmas and a Happy New year.   Please keep us updated when you have chance.

Chloe my daughter 6 is well at the moment and looking forward to Christmas, her
last angiogram showed areas were the blood flow is better but also areas which
have worsened, so I am now waiting for the Drs who are having a meeting and
looking at her x rays to let me know what they plan to do, I will let you know
as I hear.

Once again send Austin our love and Hugs, from Jane, Chloe and Thomas xxxxxxx



Danette Rogers <dsrogers93@...> wrote: Austin is at home…YEAH! We got
home yesterday around 4:00pm. It is so nice
to be home.

Austin continues to do well; we tend to forget he needs to take it easy. He
seems to be his old self.

Thank you all for all your thoughts and prayers. Please continue to remember
him in your prayers. We know the reason he is doing so well is because of
all the prayers going up on his behalf.

Doug, Danette, Britleigh & Austin


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My daughter is 16 years old.  She had surgery for moya moya on Jan.
5th.  She was fine up to 3 days after surgery but then had an
infarct in the left parietal lobe.  Now she has guestmanns syndrome
and has difficulty distinguishing from right and left, writing,
doing simple math.
She is a straight A student.  The doctor says she will have 80 to
100% recovery.  but I am still worried.
Has anyone else been in this situation?

I'm afraid I haven't heard of this but will pray for a full recovery for
you.
Nancy Mc

>From: "hmkim2000" <hmkim2000@...>
>Reply-To: parentingchildrenwithmoyamoya@yahoogroups.com
>To: parentingchildrenwithmoyamoya@yahoogroups.com
>Subject: [Parenting Children with Moyamoya] 16 year old
>Date: Thu, 20 Jan 2005 11:02:57 -0000
>
>
>My daughter is 16 years old.  She had surgery for moya moya on Jan.
>5th.  She was fine up to 3 days after surgery but then had an
>infarct in the left parietal lobe.  Now she has guestmanns syndrome
>and has difficulty distinguishing from right and left, writing,
>doing simple math.
>She is a straight A student.  The doctor says she will have 80 to
>100% recovery.  but I am still worried.
>Has anyone else been in this situation?
>
>
>
>

Sorry, I have not heard anything about this.  We will keep you all in our
prayers!
Rebecca Phillips and Family

hmkim2000 <hmkim2000@...> wrote:

My daughter is 16 years old.  She had surgery for moya moya on Jan.
5th.  She was fine up to 3 days after surgery but then had an
infarct in the left parietal lobe.  Now she has guestmanns syndrome
and has difficulty distinguishing from right and left, writing,
doing simple math.
She is a straight A student.  The doctor says she will have 80 to
100% recovery.  but I am still worried.
Has anyone else been in this situation?






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[Non-text portions of this message have been removed]

my daughter had some of these same issues- however it was never called
guestmanns



>From: rebecca phillips <raphillips00@...>
>Reply-To: parentingchildrenwithmoyamoya@yahoogroups.com
>To: parentingchildrenwithmoyamoya@yahoogroups.com
>Subject: Re: [Parenting Children with Moyamoya] 16 year old
>Date: Thu, 20 Jan 2005 11:48:11 -0800 (PST)
>
>Sorry, I have not heard anything about this.  We will keep you all in our
>prayers!
>Rebecca Phillips and Family
>
>hmkim2000 <hmkim2000@...> wrote:
>
>My daughter is 16 years old.  She had surgery for moya moya on Jan.
>5th.  She was fine up to 3 days after surgery but then had an
>infarct in the left parietal lobe.  Now she has guestmanns syndrome
>and has difficulty distinguishing from right and left, writing,
>doing simple math.
>She is a straight A student.  The doctor says she will have 80 to
>100% recovery.  but I am still worried.
>Has anyone else been in this situation?
>
>
>
>
>
>
>---------------------------------
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>
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>
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>
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>
>
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>
>[Non-text portions of this message have been removed]
>

We are considering a Moyamoya baby. I know not all cases are the same,
we have 2 other SN kids and I know each child and their disease is
different. But what should/could I expect, look for, treatment needed
etc. I am gathering facts!! I find the medical website over my head and
glad I found you!!

Thanks so much!

Ann Grabeman

Ann,
Check out www.moyamoya.com it has a lot of info and a lot of people with
experience with MM. Surgery is the only thing I know of to help with MM. Also it
depends if the patient has had a stroke or not just what other treatment is
needed. My son had a stroke 2 years ago and is still in therapy.
Rena

Ann <mome2abc@...> wrote:
We are considering a Moyamoya baby. I know not all cases are the same,
we have 2 other SN kids and I know each child and their disease is
different. But what should/could I expect, look for, treatment needed
etc. I am gathering facts!! I find the medical website over my head and
glad I found you!!

Thanks so much!

Ann Grabeman




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[Non-text portions of this message have been removed]

This is my first post.  Our daughter Juliana has been monitored for
Neurofibromatosis since she was 8 weeks old.  Last year she was
officially diagnosed with the condition, as part of her observation
she needs to get MRI's of the brain.  Last year it was noticed that
her left side internal carotid was missing.  This year we were told
that she has Moyamoya syndrome and is at risk of having a stroke at
anytime.  We currently are taking her to Children's Hospital of
Philadelphia.  We think that he Neurologist is wonderful (DR. Rebecca
Icord), the Neurosurgeon there wants to operate on her but we are
apprehensive since we are unsure of his knowledge of Moyamoya.  We
have been in contact with Dr. Scott in Boston and he has called us on
several occasions we think he is a wonderful human being.  He is going
out of town next week but after that he wants to do surgery on our
daughter.  I am not really sure if I am asking a question here but
maybe just looking for a little reassurance.

Kevin M. Cave

Hi Kevin -  My son is a patient of Dr. Scott's.  He has moya moya and was
operated on by Dr. Scott the first time just about 2 years ago.  I can't say
enough good things about him.  He is kind, caring -- and experienced.  I think
your daughter would be in wonderful, safe and knowledgeable  hands.

If I can answer any questions, please don't hesitate.

Best of luck,

Ginny

[Non-text portions of this message have been removed]

Kevin,
It sounds like you are on the right track. You might also want to check out
www.moyamoya.com it is a great support system and a great source of information.
I will keep you family in my prayers.

kevin_c86 <kevin_c86@...> wrote:
This is my first post.  Our daughter Juliana has been monitored for
Neurofibromatosis since she was 8 weeks old.  Last year she was
officially diagnosed with the condition, as part of her observation
she needs to get MRI's of the brain.  Last year it was noticed that
her left side internal carotid was missing.  This year we were told
that she has Moyamoya syndrome and is at risk of having a stroke at
anytime.  We currently are taking her to Children's Hospital of
Philadelphia.  We think that he Neurologist is wonderful (DR. Rebecca
Icord), the Neurosurgeon there wants to operate on her but we are
apprehensive since we are unsure of his knowledge of Moyamoya.  We
have been in contact with Dr. Scott in Boston and he has called us on
several occasions we think he is a wonderful human being.  He is going
out of town next week but after that he wants to do surgery on our
daughter.  I am not really sure if I am asking a question here but
maybe just looking for a little reassurance.

Kevin M. Cave




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