Re: Kennedy & MacKenzie - the latest pics...

[Guest guest]

-

What great pictures! Thanks for sharing. The girls look like they had a great

time keeping you busy.

Michele

Kennedy & MacKenzie - the latest pics...

<< File: ATT00039.txt; charset = Windows-1252 >> << File: ATT00040.html;

charset = Windows-1252 >> << File: Graeme & Weir.vcf >>

[Guest guest]

Those pictures are fantastic, thank you for sharing them. It's great to see

how they change and grow. Looks like they had so much fun together. I can't

wait until Zak gets strong enough to start playing with all my other kids.

He is doing better about playing alone, but is still hesitant about

interaction and especially about being held for long.

The girls are so adorable, it was great seeing them.

Debra

[Guest guest]

Michele,

They certainly did. The two of them in the tub was just a nightmare, but they had a ball, laughing their heads off while soaking my bathroom completely. They each taught each other some new splashing tricks!

Mom to Kennedy 2yr old CHARGEr, 10, 9, and wife to GraemeNew Brunswick, CanadaVisit the "Weir homepage" at: http://www.geocities.com/SunsetStrip/Palms/5716ICQ #1426476

Kennedy & MacKenzie - the latest pics...<< File: ATT00039.txt; charset = Windows-1252 >> << File: ATT00040.html; charset = Windows-1252 >> << File: Graeme & Weir.vcf >> For information about the CHARGE Syndrome Foundation or to become a member please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org

[Guest guest]

Debra,

They did have a lot of fun. I hope Zaky gets strong enough to play with everyone really soon. It was a long haul for Kennedy to let us hold her after that long in the hospital, but she got over it eventually. It seemed almost mean to pick her up, she just wanted to be in her bed, but we knew we had to get her over that. I'm sure you guys will do great with Zak.

How is Mr. Tryny doing by the way? Haven't heard any Tryny stories in a while!

Mom to Kennedy 2yr old CHARGEr, 10, 9, and wife to GraemeNew Brunswick, CanadaVisit the "Weir homepage" at: http://www.geocities.com/SunsetStrip/Palms/5716ICQ #1426476

Re: Kennedy & MacKenzie - the latest pics...

Those pictures are fantastic, thank you for sharing them. It's great to see how they change and grow. Looks like they had so much fun together. I can't wait until Zak gets strong enough to start playing with all my other kids. He is doing better about playing alone, but is still hesitant about interaction and especially about being held for long.The girls are so adorable, it was great seeing them.DebraFor information about the CHARGE Syndrome Foundation or to become a member please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org

[Guest guest]

In a message dated 6/28/00 1:21:39 AM US Eastern Standard Time,

gweir@... writes:

<< How is Mr. Tryny doing by the way? Haven't heard any Tryny stories in a

while! >>

,

Well, let's just say that Mr. Tryny is a " ball of fire " . We are weaning him

off his Depakene slowly (as they added topamax) and he has drastic mood

changes. He can be my sweet Tryny and then wham !!!!!!!!!!!! He's the

meanest thing you'd ever want to see, throwing fits, hitting, scratching and

then wham !!!!!!!!!!!!! It stops just as fast as it started. He has usually

4 to 6 a day. The neurologist says that we'll continue until we get him

totally weaned off (until September 17). Oh Boy !!!

Other than that, pretty healthy so far.

Zak is having surgery in August to remove some of his " spit glands " . We are

hoping that will decrease some of his saliva (he has soooooooo much). And I

have been weaning him off the oxygen slowly and have him down to only 1 liter

now. And 3 or 4 times a day we take him completely off and he can last up to

45 minutes just on room air before he destats his 02 levels. I talked to the

pulmonologist last week and we are going to try to remove the trach in the

spring (after the RSV season). So we are really looking forward to that.

All in all, this has been a pretty quiet month for both boys, only doc visits

at the hospital, no inpatient stays.

Debra

[Guest guest]

In a message dated 6/28/00 4:39:29 PM US Eastern Standard Time,

artthrob@... writes:

<< How about you mommy? How have you been doing? >>

Vicki,

I'm " hanging in there " ! Some days are better than others but my daughters

help me out immensely. Niki (my 20 year old) lives at home to help me with

Zak and takes pretty much primary care of him at night. BJ (my 13 year old)

is really getting into helping with him as well and doing a very good job (I

was surprised that changing his trach doesn't bother her). And I have a new

grandbaby (that makes 3 in all now) and all of them are usually over here on

a daily basis (so this is one " busy " house). That makes my children and

grandchildren totaling 10 now (so I guess you can see why there are long

periods of time in between my letters to the list).

But I love it, I wouldn't change a thing in my life. I always wanted a bunch

of kids (and boy do I have them huh?)

Debra

[Guest guest]

Robin:

www.geocities.com/kawfolks/kkmac4.html

Those are the latest, there are lots of other pics of them on there, too...

There is a listing of Kennedy's pics (including all the Kennedy & MacKenzie ones) at:

www.geocities.com/kawfolks/myphotoalbum.html

Mom to Kennedy 2yr old CHARGEr, 10, 9, and wife to GraemeNew Brunswick, CanadaVisit the "Weir homepage" at: http://www.geocities.com/SunsetStrip/Palms/5716ICQ #1426476

Re: Kennedy & MacKenzie - the latest pics...

Where are the pics of Kennedy & MacKenzie? I would love to see them.Robin mom to Ally 22 mthsFor information about the CHARGE Syndrome Foundation or to become a member please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org

[Guest guest]

Debbie,

You are such

an upbeat person! We should have many more people like you.

) Vicki mom to

DW33333333@... wrote:

In a message dated 6/28/00 4:39:29 PM US Eastern

Standard Time,

artthrob@... writes:

<< How about you mommy? How have you been doing? >>

Vicki,

I'm "hanging in there" ! Some days are better than others but

my daughters

help me out immensely. Niki (my 20 year old) lives at home to

help me with

Zak and takes pretty much primary care of him at night. BJ (my

13 year old)

is really getting into helping with him as well and doing a very good

job (I

was surprised that changing his trach doesn't bother her). And

I have a new

grandbaby (that makes 3 in all now) and all of them are usually over

here on

a daily basis (so this is one "busy" house). That makes my children

and

grandchildren totaling 10 now (so I guess you can see why there are

long

periods of time in between my letters to the list).

But I love it, I wouldn't change a thing in my life. I always

wanted a bunch

of kids (and boy do I have them huh?)

Debra

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For information about the CHARGE Syndrome

Foundation or to become a member please

contact marion@... or visit

the CHARGE Syndrome Foundation web page

at http://www.chargesyndrome.org