Re: My Grandson

[Guest guest]

You will find there are ways to help your grandson stay healthy and

happy. The number of type one kids living past one is growing. I of

course would love to hear updates and feel free to check out

www.smasupport.com <http://www.smasupport.com/> there is a lot of info

there plus there are a couple of chat lists you could join.

Hugs

Kenya

My Grandson

We were told last week that my grandson who is 6 months old has been

diagnosed with SMA Type 1.As you can appreciate the family is devasted

and hoping against that he is among the small minority that makes it

past their first birthday.

If nobody minds I will post updates on his condition and upload some

photos.

[Guest guest]

Please know there is hope! I have a child who was diagnosed with type 1

SMA over three years ago - she is healthy and happy and amazing.

There are a few doctors across the country who have taken a different

approach to the care of these children with very good results. My

daughters name is Taleah. She does not have a tracheostomy and is not on a

ventilator 24 hours a day. She does use a cough machine to help simulate

an effective cough and she does use a machine at night to help her take

deep breaths. But both of these things are noninvasive just requiring a

mask to deliver the breath support she needs.

During the day she is a happy 3 1/2 year old child. She loves to color,

play beauty parlor, play with tea sets, help with dinner, and has quite an

attitude at times - she's 3 after all!

Yes, her life is different than we expected it to be, yes sometimes we have

to be creative to help her do the things she wants to do, but her life is

full and good and she'll be the first to tell you how happy she is.

Please feel free to contact me by e-mail or phone: mhe@... or

801-812-2229

At 08:59 PM 12/15/2003 +0000, you wrote:

>We were told last week that my grandson who is 6 months old has been

>diagnosed with SMA Type 1.As you can appreciate the family is devasted

>and hoping against hope that he is among the small minority that makes

>it past their first birthday.

>If nobody minds I will post updates on his condition and upload some

>photos.

>

>

>

>

[Guest guest]

And please don't forget that sometimes people are diagnosed with Type I

and are rediagnosed later in life as having a less severe type. At my

birth, my parents were told I was Type I. Twenty-five years later, when

I had a two year old daughter of my own, a specialist rediagnosed me as

Type II. I am now 33, happily married for 12+ years, have two daughters

I carried to term, do not use a vent, a trach, or bi-pap, and am in

relatively good health. Everyone is different and there seems to be -

at least in this group and from other people I know - a wide range of

health levels and abilities within each " type " .

> At 08:59 PM 12/15/2003 +0000, you wrote:

> >We were told last week that my grandson who is 6 months old has been

> >diagnosed with SMA Type 1.As you can appreciate the family is devasted

> >and hoping against hope that he is among the small minority that makes

> >it past their first birthday.

> >If nobody minds I will post updates on his condition and upload some

> >photos.

--

Jenn Malatesta

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

My web page: http://www.isoc.net/brokeninside/nekrosys/

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

Philo of andria:

" Be kind, for everyone you meet is fighting a great battle. "

[Guest guest]

Ann,

Hey Good to hear from you.... I always love hearing

from Grandparents. My mother has been gone for earth

since I was 20 (31 now) and I miss the fact that she

never got to see my 3 boys. She had wanted boys but

only had 1. Anyway, I was curious if your grandson

still had his tonsils and adnoids. I know this does

not work with everyone and I am sure they looked at it

but as soon as my son got his removed. My life has

been much better. We now have him on time release

meletonin because he does not get much REM sleep:)

Anyway good to hear from you. What part of the

country are you in

B

--- mary ann kamp <ekamp@...> wrote:

> Hi

> I just wanted to email some who have the same

> situations that we have here with my

> grandson. He is 9 yrs old and has down sydrome. He

> was my first grandchild and only boy. I love his

> dearly. He is my buddy!!! He has just found out

> that he has sleep apnea and he is wearing his night

> mask for cpak pretty good. At least for 3-4 hours

> now. I will also be going to get tested so I tell

> him grandma will be wearing one too. I just want to

> keep in touch with other people and any information

> of any kind i would appreciate hearing about it.

> thanks

> Ann

>

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[Guest guest]

This is very sweet. My daughters grandmother, my mom died last year and she was so darling with our daughter. She was always bragging to anyone who would listen to how her granddaughter could read and was SO smart. I think it is great that you are involved in his life. He is blessed to have you and you are blessed to have him.

Joan

My Grandson

Hi

I just wanted to email some who have the same situations that we have here with my grandson. He is 9 yrs old and has down sydrome. He was my first grandchild and only boy. I love his dearly. He is my buddy!!! He has just found out that he has sleep apnea and he is wearing his night mask for cpak pretty good. At least for 3-4 hours now. I will also be going to get tested so I tell him grandma will be wearing one too. I just want to keep in touch with other people and any information of any kind i would appreciate hearing about it.

thanks

Ann

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[Guest guest]

It was sure glad hearing from you! My grandson has had his tonsils & adnoids out for about 4 years now. My daughter about 6 mons ago noticed his breathing when sleeping did not sound right. Holding his breath and then making a big gasp. They took him to allergist who referred him to Akron Childrens Hospital ( We live in Canton OH) in Akron Ohio and they said his throat is small so their doesn't seem to be too much they can do but put him on the machine and he is about 50 lbs overweight which he and we are trying to take off. His parents are divorced and they shared parenting so mom trys hard to give him good things to eat and dad spoils him on junk food etc. It also seems we cannot get it in dad's head that he needs to wear his mask every night! The doctor has written him a note stating it can be life threatening. 's mom is very upset and so am I. We talk to dad and he tells us he

is wearing it but we read a meter on machine that tells us how many hours been worn and it is always on the same number as when he left moms for the week. Does your son have down syndrome? I know I am very fortunate to be around for them to have grandma--I am 56 years old and my mother died when she was 60. I have 5 grandchildren whom I adore. Matt is my special one though and always will be close to me and in my heart in a very special way. please keep in touch---I just keep rambling. Tell me more about yourself and family also God Bless Ann and Behnke <behnkesw@...> wrote: Ann,Hey Good to hear from you.... I always love hearingfrom Grandparents. My mother has been gone for earthsince I was 20 (31 now) and I miss the fact that shenever got to see my 3 boys. She had wanted boys butonly had 1. Anyway, I was curious if your grandsonstill had his tonsils and adnoids. I know this doesnot work with everyone and I am sure they looked at itbut as soon as my son got his removed. My life hasbeen much better. We now have him on time releasemeletonin because he does not get much REM sleep:)Anyway good to hear from you. What part of thecountry are you in B--- mary ann kamp <ekampsbcglobal (DOT) net> wrote:> Hi> I just wanted to email some who have

the same> situations that we have here with my> grandson. He is 9 yrs old and has down sydrome. He> was my first grandchild and only boy. I love his> dearly. He is my buddy!!! He has just found out> that he has sleep apnea and he is wearing his night> mask for cpak pretty good. At least for 3-4 hours> now. I will also be going to get tested so I tell> him grandma will be wearing one too. I just want to> keep in touch with other people and any information> of any kind i would appreciate hearing about it.> thanks> Ann> __________________________________________________________Be a PS3 game guru.Get your game face on with the latest PS3 news and previews at Games.http://videogames./platform?platform=120121

[Guest guest]

Joan, Thanks so much for your reply. Grandmothers sure adore their grandchildren but when they are so special as we have then we really adore them. You are right they are such a blessing to have. is just my pride and joy as I am sure your mom felt the same way. My mother also died at age 63 and I am 56 so I do count my blessings for God letting me still be here for and to continue for a long time just to watch out and take care of him. Let's keep in touch and let me know how your daughter is doing. How old is she and is she in school? is in 4th grade in special education class and doing well. He even rides the school bus. God Bless AnnJoanElder@... wrote: This is very sweet. My daughters grandmother, my mom died last year and she was so darling with our daughter. She was always bragging to anyone who would listen to how her granddaughter could read and was SO smart. I think it is great that you are involved in his life. He is blessed to have you and you are blessed to have him.Joan My Grandson Hi I just wanted to email some who have the same situations that we have here with my grandson. He is 9 yrs old and has down sydrome. He was my first grandchild and only boy. I love his dearly. He is my buddy!!! He has just found out that he has sleep apnea and he is wearing his night mask for cpak pretty good. At least for 3-4 hours now. I will also be going to get tested so I tell him grandma will be wearing one too. I just want to keep in touch with other people and any information of any kind i would appreciate hearing about it. thanks Ann Check out

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[Guest guest]

Ann,

Thank you for writing back. That is a real shame and

I wonder if it can be considered abuse? Have her

watch his t & A cause they can grow back... I feel

for your daughter. My mom passed away when I was 20

(31 now) so its warms my heart to hear from Grandma's.

I am married and have 3 boys 9, 3, 15 months. My 3

year old has DS. We live in Texas. For the most part

life is good. I wish my husband would help out more

but after 12 years of being together, I guess that is

not going to change My oldest is very protective

of his brother because it was his first brother. My

brother and my husband are the only boys on either

side and they wanted so badly to have another brother

but 3 sisters for my brother and 2 for my husband. So

he takes having a brother seriously! My boys go to

the same Elementary school and since they ride

different buses, he will wait for his brother to get

off and watch him go to class. (3 year old)

has sensory issues, still on soft solids, has a small

VSD in his heart but no need for surgery. He has had

his eyes straightened and is getting Prism glasses and

working with a developmental eye doc to get his eyes

working together. Oh he is also nonverbal but we are

working on that.

THanks for responding and I look for to hearing from

you in the future Grandma's RULE!

B

--- mary ann kamp <ekamp@...> wrote:

>

> It was sure glad hearing from you! My grandson

> has had his tonsils & adnoids out for about 4 years

> now. My daughter about 6 mons ago noticed his

> breathing when sleeping did not sound right.

> Holding his breath and then making a big gasp. They

> took him to allergist who referred him to Akron

> Childrens Hospital ( We live in Canton OH) in Akron

> Ohio and they said his throat is small so their

> doesn't seem to be too much they can do but put him

> on the machine and he is about 50 lbs overweight

> which he and we are trying to take off. His parents

> are divorced and they shared parenting so mom trys

> hard to give him good things to eat and dad spoils

> him on junk food etc. It also seems we cannot get

> it in dad's head that he needs to wear his mask

> every night! The doctor has written him a note

> stating it can be life threatening. 's mom

> is very upset and so am I. We talk to dad and he

> tells us he is wearing it but we read a meter on

> machine that tells us how many hours

> been worn and it is always on the same number as

> when he left moms for the week.

> Does your son have down syndrome? I know I am

> very fortunate to be around for them to have

> grandma--I am 56 years old and my mother died when

> she was 60. I have 5 grandchildren whom I adore.

> Matt is my special one though and always will be

> close to me and in my heart in a very special way.

> please keep in touch---I just keep rambling. Tell

> me more about yourself and family also

> God Bless

> Ann

>

> and Behnke <behnkesw@...> wrote:

> Ann,

>

> Hey Good to hear from you.... I always love hearing

> from Grandparents. My mother has been gone for earth

> since I was 20 (31 now) and I miss the fact that she

> never got to see my 3 boys. She had wanted boys but

> only had 1. Anyway, I was curious if your grandson

> still had his tonsils and adnoids. I know this does

> not work with everyone and I am sure they looked at

> it

> but as soon as my son got his removed. My life has

> been much better. We now have him on time release

> meletonin because he does not get much REM sleep:)

>

> Anyway good to hear from you. What part of the

> country are you in

>

> B

> --- mary ann kamp <ekamp@...> wrote:

>

> > Hi

> > I just wanted to email some who have the same

> > situations that we have here with my

> > grandson. He is 9 yrs old and has down sydrome. He

> > was my first grandchild and only boy. I love his

> > dearly. He is my buddy!!! He has just found out

> > that he has sleep apnea and he is wearing his

> night

> > mask for cpak pretty good. At least for 3-4 hours

> > now. I will also be going to get tested so I tell

> > him grandma will be wearing one too. I just want

> to

> > keep in touch with other people and any

> information

> > of any kind i would appreciate hearing about it.

> > thanks

> > Ann

> >

>

>

__________________________________________________________

> Be a PS3 game guru.

> Get your game face on with the latest PS3 news and

> previews at Games.

> http://videogames./platform?platform=120121

>

>

>

>

________________________________________________________________________________\

____

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[Guest guest]

hi, mary ann, glad he is your buddy, sounds like he has a loving family. my son was diagonsised sleep apnea, and he is four years old. We just found out that he has a large tonsil, and it needs to be removed. surgery scheduled next month. So, it does not hurt to check your buddy to see if there is any obstruct thing in a way for sleeping. i m pretty sure you already check on that... im new to it, tho... okay welcome to our group. i hope you find some supports from here. i really love this group myselfl, smile. kkmary ann kamp <ekamp@...> wrote: Hi I just wanted to email some who have the same situations that we have here with my grandson. He is 9 yrs old and has down sydrome. He was my first grandchild and only boy. I love his dearly. He is my buddy!!! He has just found out that he has sleep apnea and he is wearing his night mask for cpak pretty good. At least for 3-4 hours now. I will also be going to get tested so I tell him grandma will be wearing one too. I just want to keep in touch with other people and any information of any kind i would appreciate hearing about it. thanks Ann

[Guest guest]

Hi Ann, weight is an issue also for sleep apena.... My father lost sixty pounds, and then he did not need the machine for apena anymore. I strongly suggest that you bring an issue to the friend court and see if the court would do anything for your buddy. It is a serious matter, like the doctor said it is life threatening. You know how men are like that, they think they can get by..., oh boy. So, i am pretty sure that buddy's father would pay attention more after attending friend court...would it be possible it be working out for you all? kkmary ann kamp <ekamp@...> wrote: It was sure glad hearing from you! My grandson has had his tonsils & adnoids out for about 4 years now. My daughter about 6 mons ago noticed his breathing when sleeping did not sound right. Holding his breath and then making a big gasp. They took him to allergist who referred him to Akron Childrens Hospital ( We live in Canton OH) in Akron Ohio and they said his throat is small so their doesn't seem to be too much they can do but put him on the machine and he is about 50 lbs overweight which he and we are trying to take off. His parents are divorced and they shared parenting so mom trys hard to give him good things to eat and dad spoils him on junk food etc. It also seems we cannot get it in dad's head that he needs to

wear his mask every night! The doctor has written him a note stating it can be life threatening. 's mom is very upset and so am I. We talk to dad and he tells us he is wearing it but we read a meter on machine that tells us how many hours been worn and it is always on the same number as when he left moms for the week. Does your son have down syndrome? I know I am very fortunate to be around for them to have grandma--I am 56 years old and my mother died when she was 60. I have 5 grandchildren whom I adore. Matt is my special one though and always will be close to me and in my heart in a very special way. please keep in touch---I just keep rambling. Tell me more about yourself and family also God Bless Ann and Behnke <behnkesw > wrote: Ann,Hey Good to hear from you.... I always love hearingfrom Grandparents. My mother has been gone for earthsince I was 20 (31 now) and I miss the fact that shenever got to see my 3 boys. She had wanted boys butonly had 1. Anyway, I was curious if your grandsonstill had his tonsils and adnoids. I know this doesnot work with everyone and I am sure they looked at itbut as soon as my son got his removed. My life hasbeen much better. We now have him on time releasemeletonin because he does not get much REM sleep:)Anyway good to hear from you. What part of thecountry are you in B--- mary ann kamp <ekampsbcglobal (DOT) net> wrote:> Hi> I just wanted to email some who have the same> situations that we have here with my> grandson. He is 9 yrs old and has down sydrome.

He> was my first grandchild and only boy. I love his> dearly. He is my buddy!!! He has just found out> that he has sleep apnea and he is wearing his night> mask for cpak pretty good. At least for 3-4 hours> now. I will also be going to get tested so I tell> him grandma will be wearing one too. I just want to> keep in touch with other people and any information> of any kind i would appreciate hearing about it.> thanks> Ann> __________________________________________________________Be a PS3 game guru.Get your game face on with the latest PS3 news and previews at Games.http://videogames./platform?platform=120121

[Guest guest]

Welcome to the group Ann :-)

My daughter is 6 and I am very close in age to you and am also a grandma. I have three grandson's, identical twin boys ( 3) and a single boy(1).

is scheduled to have a sleep study next weekend, so I too am interested in the answer you get as I think we will be needing to be asking the same.

As for his dad not complying- I would think that the courts could force him to for his son's health. Doesn't sound as though he understands the importance of it.

Carol in IL Mom to seven including , 6 with TOF, AVcanal, GERD, LS, Asthma, subglottal stenosis, and DS.My problem is not how I look. It's how you see me.

Join our Down Syndrome information group -

Down Syndrome Treatment/

Listen to oldest dd's music http://www.myspace.com/vennamusic

My Grandson

Hi

I just wanted to email some who have the same situations that we have here with my grandson. He is 9 yrs old and has down sydrome. He was my first grandchild and only boy. I love his dearly. He is my buddy!!! He has just found out that he has sleep apnea and he is wearing his night mask for cpak pretty good. At least for 3-4 hours now. I will also be going to get tested so I tell him grandma will be wearing one too. I just want to keep in touch with other people and any information of any kind i would appreciate hearing about it.

thanks

Ann

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