Update

June 28, 2002

Wow! I would say eventful! I am so glad you are doing okay now!

And the babies size! They sound like they are doing great, despite

their mommy's discomfort! Hang in there, keep doing what ever

you're doing and get some rest....I have a feeling that you are

going to have two very active little bundles of joy soon!

I'm keeping you and your little family in my thoughts!

Say thank you to your parents for keeping us updated, we have been

worried about you!

UD

>

June 28, 2002

Wow! I would say eventful! I am so glad you are doing okay now!

And the babies size! They sound like they are doing great, despite

their mommy's discomfort! Hang in there, keep doing what ever

you're doing and get some rest....I have a feeling that you are

going to have two very active little bundles of joy soon!

I'm keeping you and your little family in my thoughts!

Say thank you to your parents for keeping us updated, we have been

worried about you!

UD

>

June 29, 2002

, I'm so glad for the positive news! it sounds like the babies are

certainly thriving!!! Hang in there and keep us posted...

24 wks,2 days

twins

June 29, 2002

, I'm so glad for the positive news! it sounds like the babies are

certainly thriving!!! Hang in there and keep us posted...

24 wks,2 days

twins

June 29, 2002

, I'm so glad for the positive news! it sounds like the babies are

certainly thriving!!! Hang in there and keep us posted...

24 wks,2 days

twins

June 29, 2002

I am so excited for you. Just think today you are STUCK on bedrest

possibly next week you'll be begging for 1 hour of bedrest. 32 weeks

is an amazing accomplishment. Hang in there!

You are in my thoughts and prayers

31/UU/ttc3/IVF#1 transfer this past Monday

> Hi everyone

> I just wanted to check in with everyone. My Dad brought me a

> laptop to the hospital so that I can check my email. I am still in

> the hospital and will be here until the babies are born. Things

are

> going ok so I am able to stay at the hospital closer to my home.

The

> protein in my urine had gone up to 2800 (5000 is when I would need

to

> go to Rochester and the babies would probably be delivered). I had

a

> 24 hour test yesterday and my protein went down to 2300. This is a

> good thing because my doctor was thinking that it had gone up.

> The first few days I was in here were quite eventful. I came

in

> for the preeclampsia on Wednesday, on Thursday my doctor told me I

> had gestational diabetes and mild preeclampsia and on Friday I

> started preterm labor. They stopped the labor with medication

which

> I am now off. If I went into labor now she would let me go. I am

> now 32 weeks 1 day. We had an ultrasound today and the babies are

> doing great. The boy is up to 4#7oz and the girl is 4#2oz. I am

> very excited about their size and both are practicing breathing.

> Well things have been uneventful since the first week and now it is

> just waiting. The less eventful the better it is.

> Well I hope that everyone is doing well and I will try to catch

> up on how things are going for everyone.

>

> BU 32w 1d b/g twins

June 29, 2002

I am so excited for you. Just think today you are STUCK on bedrest

possibly next week you'll be begging for 1 hour of bedrest. 32 weeks

is an amazing accomplishment. Hang in there!

You are in my thoughts and prayers

31/UU/ttc3/IVF#1 transfer this past Monday

> Hi everyone

> I just wanted to check in with everyone. My Dad brought me a

> laptop to the hospital so that I can check my email. I am still in

> the hospital and will be here until the babies are born. Things

are

> going ok so I am able to stay at the hospital closer to my home.

The

> protein in my urine had gone up to 2800 (5000 is when I would need

to

> go to Rochester and the babies would probably be delivered). I had

a

> 24 hour test yesterday and my protein went down to 2300. This is a

> good thing because my doctor was thinking that it had gone up.

> The first few days I was in here were quite eventful. I came

in

> for the preeclampsia on Wednesday, on Thursday my doctor told me I

> had gestational diabetes and mild preeclampsia and on Friday I

> started preterm labor. They stopped the labor with medication

which

> I am now off. If I went into labor now she would let me go. I am

> now 32 weeks 1 day. We had an ultrasound today and the babies are

> doing great. The boy is up to 4#7oz and the girl is 4#2oz. I am

> very excited about their size and both are practicing breathing.

> Well things have been uneventful since the first week and now it is

> just waiting. The less eventful the better it is.

> Well I hope that everyone is doing well and I will try to catch

> up on how things are going for everyone.

>

> BU 32w 1d b/g twins

June 29, 2002

Hi ! I'm so glad to hear from you - and that both you and the

babies are doing well!!!!! Sounds like you had quite a scare. I saw

my baby practicing breathing last Monday - it's a beautiful sight

isn't it?

I hope things continue to be uneventful and the babies wait a bit

longer to make their appearance. Feel good and know that you have

lots of people thinking of you.

((((((((HUGS)))))))

Tara

BU

33w1d

June 29, 2002

Hi ! I'm so glad to hear from you - and that both you and the

babies are doing well!!!!! Sounds like you had quite a scare. I saw

my baby practicing breathing last Monday - it's a beautiful sight

isn't it?

I hope things continue to be uneventful and the babies wait a bit

longer to make their appearance. Feel good and know that you have

lots of people thinking of you.

((((((((HUGS)))))))

Tara

BU

33w1d

June 29, 2002

,

Good to hear that all is ok with u and twins. Hang in there and the twins will

be in your arms very soon!

Rita

Resected SU, 15w1d

June 29, 2002

,

Good to hear that all is ok with u and twins. Hang in there and the twins will

be in your arms very soon!

Rita

Resected SU, 15w1d

June 29, 2002

,

Good to hear that all is ok with u and twins. Hang in there and the twins will

be in your arms very soon!

Rita

Resected SU, 15w1d

June 29, 2002

Oops, I mean 16w1d, not 15w1d! Now I'm over 4 months. :-)

Rita

June 29, 2002

Oops, I mean 16w1d, not 15w1d! Now I'm over 4 months. :-)

Rita

June 29, 2002

Oops, I mean 16w1d, not 15w1d! Now I'm over 4 months. :-)

Rita

July 7, 2002

Thanks for the update! I still have quite a ways to go and am inspired by

your progress.Just hang in there a little longer!!

b/g twins

25 wks, 3 days

July 7, 2002

> I hope that everyone is doing well. Best wishes to all.

>

> BU-b/g twins 33w2d

,

You are such a strong woman and you have such strong babies. I bet

they will be a handful for you:-) Thank you for your kind words.

I'll find out 7/26 if I'm having twins. Your story has helped so

much.

Hang in there

from Iowa

31 UU-4w3d

July 7, 2002

> I hope that everyone is doing well. Best wishes to all.

>

> BU-b/g twins 33w2d

,

You are such a strong woman and you have such strong babies. I bet

they will be a handful for you:-) Thank you for your kind words.

I'll find out 7/26 if I'm having twins. Your story has helped so

much.

Hang in there

from Iowa

31 UU-4w3d

July 7, 2002

> I hope that everyone is doing well. Best wishes to all.

>

> BU-b/g twins 33w2d

,

You are such a strong woman and you have such strong babies. I bet

they will be a handful for you:-) Thank you for your kind words.

I'll find out 7/26 if I'm having twins. Your story has helped so

much.

Hang in there

from Iowa

31 UU-4w3d

July 7, 2002

Best wishes for a speedy 5 days and as much comfort as you can find.

Keep us posted

Hollie K

July 7, 2002

Best wishes for a speedy 5 days and as much comfort as you can find.

Keep us posted

Hollie K

July 7, 2002

Best wishes for a speedy 5 days and as much comfort as you can find.

Keep us posted

Hollie K

July 8, 2002

> Hi to everyone

> Just wanted to drop a note and update everyone. I am now

> 33weeks 2days. If I can hold out for 5 more days I can deliver at

> the hospital that I am at and not have to go to Rochester in MN.

,

I'm glad that you are hanging in there. You are in my thoughts and I

keep hoping every day that you will make it a little longer so you

can deliver safely close to home.

I'm glad that you are able to get into email and update us. It must

be very difficult each day getting tested, being in the hospital away

from DH and your kitties. I'm sorry that you have been

uncomfortable. Hopefully time passes quickly for you and you are

holding your sweet twins in your arms soon.

Take Care,

Sara

34, SU

July 26, 2002

Hi Tim,

You have been very active with your work with CHARGE. I know I have printed

off many of your emails and articles to file and use at our school as issues

come up. I remember the one you wrote in the Charge newsletter about

behaviour and finding the reasons for it, why it is occurring. My daughter

has pretty much always been a fairly calm child (with some usual

CHARGE tendencies-mild OCD-start/finish things, particular toys, etc.) but

has always made friends from preschool up. She never really paid much

attention to how other children looked at her-she was just one of the gang.

Now that she is getting older she notices every now and then but she still

has a pretty high self-esteem and she's just a regular kid at her school.

She has a good group of friends and the whole school knows her and she's

been accepted well - most children love to say " Hi " to her in the halls.

Most of her teachers have been very supportive and encouraging as well

(except where we had to change teachers in grade 1) and once with a teacher

in grade 2 when was showing some " aggressive " behaviors (starting to

stick up for herself really). The grade 2 teacher had been difficult from

the beginning, not totally comfortable with in her class (as

is fully integrated) and never really made herself " available " to ,

trying to leave most of the work to the assistant (WE HAVE A GREAT

ASSISTANT!). Anyways, she started reporting that she felt was being

" aggressive " with her peers (which has NEVER happened before). She

reported that was " shoving " in line and " pushing " children away and

reacting angrily. She didn't bother to find out WHY, she just felt

needed some " anger management " classes. We tried for awhile to find out

" WHY " this was happening. began communicating with us that

particular children were " staring " at her, calling her names at lunch and

running away from her. They tried to get other children to not stand by her

in line in class and instead they would stand by her and stare, making

faces, etc. just " pushed " them away. I copied your articles and

other CHARGE articles about behaviour, vision, sight, (multi-sensory

impairments) appearance, etc. and we met with the teacher. Sometimes they

think that they can say to us whatever they like and expect that we should

just accept it! The teacher was quite impressed that we had brought in

these articles by a professional psychologist, who also happens to have

experience with a child with CHARGE. We explained that always seemed

comfortable with the way she looks, she didn't really notice any differences

(the facial palsy, repaired cleft and nose, wears dark glasses and hat in

school re light sensitivity, wears hearing aids, short stature, etc.) but as

she is getting older, her knowledge has increased, her visual awareness of

her surroundings and details are much better and her ability to hear with

her aids has increased -and I think she's also becoming more aware of

" stares " , etc., from new children at the school or others who don't know

her. We reported what had discussed with us and that she didn't

understand why these children were behaving this way. It was a very touchy

situation for awhile (some teachers can be very territorial!) but the

teacher finally came around and realized many of the issues that affect

's behaviour and how to deal with them. They actually set up a

program in the school for many of the children who have various challenges

and integrated a component about " self-esteem " (not " anger-management " ) and

how to handle peer related situations.

The teachers in grade 3 and 4 were absolutely EXCELLENT and has

never had any other incidents like this. Her IEP now states as a goal, to

help deal with the various issues related to CHARGE, whether, social,

emotional, multi-sensory, etc. From our experience though, I think the

teacher really sets the scene and mood for the class!

To make this long story short - I want to thank you for all your articles

and the information that you post!

Pat

Pat, , (14), (11-CHARGE)

Rittgasser

Keswick, Ontario

Canada

update

Hi everyone,

I've not been too active on the list recently, but have tried to at

least look at the subjects being addressed. You may know that and

are in Cleveland getting the electrical stimulation to the throat

to see if we can teach to swallow. So far it is going well.

I had a wonderful trip to New Zealand and Australia. I stayed with

Bruce and Robyn in Christchurch. Jaecob's progress over the

two years since I last saw him was amazing. The CHARGE conference in

Melbourne was terrific. I presented my research on behavior (for the

first time anywhere) which was very well received. I also presented on

positive behavioral supports. and I did a workshop for

parents of children 12 and older on behavior while Brown and

Muir (she is a psychologist from Sydney) did one for parents

of the younger children. Then it was on to Sydney. I presented some of

my research and management of behavior issues to staff (mostly

geneticists and pediatricians) at Sydney Children's Hospital. Then went

to the National Deafblind Conference where I presented on the function

of challenging behaviors. Brown did a fantastic overview of

CHARGE at the same conference. I came home on a real high. On the 5th

of August I am off to Munich for an international conference on Adlerian

Psychology where I am talking about grief, and then on the 11th I am

meeting with some of the German families of children with CHARGE. I am

very excited about that.

I am starting to become interested in what is called behavioral

phenotyping. This is the investigation into what behaviors might be

linked to particular genetic disorders. Graham is working on this

by comparing the behavior of kids with CHARGE to those with other

genetic disorders. The tricky thing is to sort out the various sources

of the behavior, as I tried to suggest in my last email. For example,

how much is due to the experience of pain and illness over time, how

much is due to the communication difficulties some of you have been

discussing recently, how much is due to stress and anxiety, how much to

multisensory impairment, and then how much to brain dysfunction some of

which may be genetic. It is very confusing, but if those of us who are

researching the behavior keep it up, and those researching the gene at

Baylor keep it up, at some point, we may be able to get close to

understanding this very confusing set of behaviors.

Tim Hartshorne

Father of (and Josh, , Seth, , , )

July 26, 2002