Re: another catch up with Tyler

[Guest guest]

We are home.....Yeaaaaaa...

This was a tough stay...He was on morphine most of the time and then on oral meds which he is still on...for pain....he was hoping to get back to school but not really sure when that is going to happen....so he will be on home bound...at least for some of his classes...His Chemistry class he needs to be there and luckily it is the first class and I am hoping they will let him go in for just the first class and then come home and get the rest later in the day with a tutor..Moving around and sitting upright is still too painful at this point....hopefully this will get better....

I have not had the time to read all the e-mail wishes from all of you....BUT I do thank all your thoughts and prayers....I hope I will be able to at least get in touch with you all and read the new mail as it comes in....and in some way be able to catch up....If that is even possible...

Just looking at all the emails I can see that there a lot of NEW members...Welcome to all of you and I hope we get to meet and chat in the future....

Tyler is my son who is 18 and we(really just me) have been on this list for 2 years....Ty has AIH and PSC...also Chrohns which was diagnosed at 9 yrs and Rhuematoid Arthritis and Vaculitis....He is a Senior in HS and is looking forward to College....This has been a tough 2001....He has been in the hosp...4 times since the beginning of the year and over 40 days all together...So school is a catch up game at this point...Hopefully this will all work out...We want him to be able to graduate with his class....

Well again thanks for all your well wishes and I hope to be able to be more a part of the group instead of just reporting on updates....I do miss being in contact will all of you...I feel rather alone...as we all know most people who ask how things are going just want to hear OK and then go on to other things....Plus there understanding is minimal...So watch out....I may just start venting...not that I am mad at his doctors or anything like that....I am just getting to my wits end with all Ty is having to go thru...Plus for those of you who remember about my mom....Had heart attack last June...then triple bypass...then in rehab....then bypass on leg...2 weeks later another on same leg...then a month later an amputation of the leg....she is still in rehab center...very nice place Thank God...and close ...she used to live with us....The day before we came home from the hosp she fell....She is ok ...and my husband didn't tell me until we were home....so then I could go and see for myself that she was ok...I stay with Ty when he is in the hosp...which is in Philadelphia..we live in New Jersey about 2 hours away...She is ok but upset that I even knew that she fell...I think everyone is waiting for me to crack.....Well they are going to have to just wait...I have too much to do...Luckily spring is coming and I love to garden and being in the dirt is my therapy....Just can't wait...

Well I certainly have gone on enough....

Hope to hear from you all and will be able to keep in touch...

Luanne Ty's mom

[Guest guest]

Hello Luanne,

Just wanted to let you know that I find you a wonderful person!

Keep up the strenght and my best wishes to you and Tyler!

Greetings Loes, aih, the Netherlands

Re: [ ] another catch up with Tyler

We are home.....Yeaaaaaa... This was a tough stay...He was on morphine most of the time and then on oral meds which he is still on...for pain....he was hoping to get back to school but not really sure when that is going to happen....so he will be on home bound...at least for some of his classes...His Chemistry class he needs to be there and luckily it is the first class and I am hoping they will let him go in for just the first class and then come home and get the rest later in the day with a tutor..Moving around and sitting upright is still too painful at this point....hopefully this will get better.... I have not had the time to read all the e-mail wishes from all of you....BUT I do thank all your thoughts and prayers....I hope I will be able to at least get in touch with you all and read the new mail as it comes in....and in some way be able to catch up....If that is even possible... Just looking at all the emails I can see that there a lot of NEW members...Welcome to all of you and I hope we get to meet and chat in the future.... Tyler is my son who is 18 and we(really just me) have been on this list for 2 years....Ty has AIH and PSC...also Chrohns which was diagnosed at 9 yrs and Rhuematoid Arthritis and Vaculitis....He is a Senior in HS and is looking forward to College....This has been a tough 2001....He has been in the hosp...4 times since the beginning of the year and over 40 days all together...So school is a catch up game at this point...Hopefully this will all work out...We want him to be able to graduate with his class.... Well again thanks for all your well wishes and I hope to be able to be more a part of the group instead of just reporting on updates....I do miss being in contact will all of you...I feel rather alone...as we all know most people who ask how things are going just want to hear OK and then go on to other things....Plus there understanding is minimal...So watch out....I may just start venting...not that I am mad at his doctors or anything like that....I am just getting to my wits end with all Ty is having to go thru...Plus for those of you who remember about my mom....Had heart attack last June...then triple bypass...then in rehab....then bypass on leg...2 weeks later another on same leg...then a month later an amputation of the leg....she is still in rehab center...very nice place Thank God...and close ...she used to live with us....The day before we came home from the hosp she fell....She is ok ...and my husband didn't tell me until we were home....so then I could go and see for myself that she was ok...I stay with Ty when he is in the hosp...which is in Philadelphia..we live in New Jersey about 2 hours away...She is ok but upset that I even knew that she fell...I think everyone is waiting for me to crack.....Well they are going to have to just wait...I have too much to do...Luckily spring is coming and I love to garden and being in the dirt is my therapy....Just can't wait... Well I certainly have gone on enough.... Hope to hear from you all and will be able to keep in touch... Luanne Ty's mom

[Guest guest]

Hi Luanne:

Have not responded to your e-mails in a while but, off and on, I have been aware with Tyler's situation. Tyler has too many complications and needs all the support in the world. It takes a person like you, Luanne, to keep going and keep doing what makes sense under trying circumstances. I think you are a great person and I can partly imagine your pain and suffering as a father of a 17 year old with AIH. Whereas I have only thing to worry about, Raj's AIH, you have too many things to be worried. And if venting to us helps you in any way, please feel free to do so. Remember, we are all part of the extended family called the "support group". I am sure people would not mind. I certainly won't. It is amazing really how you can find time to respond to most of us. I, for example, find hard to even read the mails, responding to many is even harder There is only so much time in a day and most of us have too much on our plate. I hope things improve for Tyler and he is able to graduate from the HS along with his classmates.

aumesh

------------

At 09:38 AM 03/14/2001 EST, you wrote:

>>>>

> We are home.....Yeaaaaaa...

> This was a tough stay...He was on morphine most of the time and then on oral

> meds which he is still on...for pain....he was hoping to get back to school

> but not really sure when that is going to happen....so he will be on home

> bound...at least for some of his classes...His Chemistry class he needs to be

> there and luckily it is the first class and I am hoping they will let him go

> in for just the first class and then come home and get the rest later in the

> day with a tutor..Moving around and sitting upright is still too painful at

>

this point....hopefully this will get better....

[Guest guest]

I'm so happy Tyler is home Luanne!!!!!!!!!! It must be a big relief for

you. Did they ever say what is exactly wrong with him this time or just bad

side effects from the RA and AIH? I hope your mother is feeling better as

well. You are such a strong woman!!! I thought about you and Ty often.

Here's hoping he can get back to school and have a happier rest of 2001.

Debbie (Tommy's Mom)

--- Have a fun day!

--- debbiehenry@...

---

[Guest guest]

Luanne,

I'm sorry that you and Ty (and your mother) are having such a rough

time. Seems like more than one young person and his mother should

have to deal with. Hopefully you will be able to dig in the dirt

soon. Getting really dirty can be very therapeutic!

I noticed that you mentioned Ty had Vasculitis. I was curious what

the symptoms of that are as it had been mentioned to me as a

possibility that I have never pursued. Is anyone familiar with this?

[Guest guest]

Dittos, Luanne,

Please respond whether the DRs found something new with the feet pain Ty had

or just the same old same old.

I am jealous you can think of spring, still have 2ft of snow in Minneapolis.

Heading to FL in 2 1/2 weeks. Can wait to see/feel WARM SUN.

As always, you are all in our prays-- April

Re: [ ] another catch up with Tyler

> I'm so happy Tyler is home Luanne!!!!!!!!!! It must be a big relief for

> you. Did they ever say what is exactly wrong with him this time or just

bad

> side effects from the RA and AIH? I hope your mother is feeling better as

> well. You are such a strong woman!!! I thought about you and Ty often.

> Here's hoping he can get back to school and have a happier rest of 2001.

>

> Debbie (Tommy's Mom)

>

>

>

> --- Have a fun day!

> --- debbiehenry@...

> ---

>

>

>

>

>

[Guest guest]

Loes

Thanks for thinking of us...Its a nice feeling knowing that people...make that FRIENDS all around the world are pulling for us....

We have a very small family...My husbands brother lives in Florida and really doesn't really keep in touch....and I have a brother..and his wife...unfortunately we are not all that close....used to be but his wife is not fond of kids and mine were young when they got married and that was the end of that.....

there are no cousins....and just my mom....so for alot of family support there is not much to call on and there are just the select few in friends who want to really understand and be a part of your life when you are under stress.....That is probably why this support group works soooo well.....everyone here understands and wants to listen....really listen....

Thank you again....

Luanne Ty's mom

[Guest guest]

Aumesh

It was nice to hear from you....I have not been very active on here at all...just seems I am getting on to report the new crisis of the moment....

I do try to read the posts...but lately that has even been hard...

How is your son Raj doing...is he also a senior in HS?

Ty has not been back to school yet and I am hoping that his tutors will be getting in touch with us soon so he can get started again from home....His pain is still to much to be in school....Because of the size and the infarctions of the spleen he finds it very painful to be sitting up right...he is either in bed or on the couch ....He had bought himself a new computer over the summer and he doesn't even go on it...

He goes back to see his docs on Tues...and have more labs done...liver functions are pretty good but other things are not....It just seems his immune system is on a rampage....They did up alot of his meds....he takes 11 different ones...The cyclosporine he takes 5 in the am and 5 in the pm....hopefully he will get some sort of break soon.....This is not the way a teen should be spending his time....

Again thanks for getting intouch with us....hope to talk to again soon....

Luanne Ty's mom