Re: My daughter's diet

August 27, 2006

Teri,

I'm another mom of an angel, my first child, would have turned 10 this coming September 25. He died when he was 2.5 days old and doctors still aren't sure why but thought it might have been an inborn error of metabolism. I don't have any help for your feeding issues, just wanted you to know others know your grief and that you are in my prayers.

My daughter's diet

Thanks to everyone for the welcome and all the suggestions. I'm glad to have somewhere to turn with her after struggling for so long. I've felt alone and isolated for a while with her.

's diet consists of shoestring french fries (HAS to be shoestring), peeled apples, ritz crackers, cheese nip crackers, pretzels, Reese PB cups, fruity pebbles cereal, cheese puff popcorn or reg popcorn, sometimes she will take other dry cereal such as cap n crunch or frosted mini wheats. And I recently got her to eat Trix yogurt (but only that brand). I can get her to eat ice cream in a cone but she won't eat the cone; just licks the ice cream out (only chocolate or vanilla though).

She will drink choc milk only and I do mix in either pediasure or boost but in a small amount because if I put too much in she notices the different taste and will refuse to drink it.

My youngest daughter was given a box of resource fruit beverage drinks that are loaded with vitamins and minerals after her hospital stay in May/June. They were in the house and when passed away I tried them with and she LOVED them. I got a prescription from the doc to get them, but our insurance won't cover them. And they are expensive ($46 for 24) and you have to mail order them. I've appealed this with the insurance company and 's ped has called them several times so I don't know if we'll ever get them covered.

She has been in feeding therapy since she was 1 1/2 and I have followed all the suggestions of the therapists. I was told to not put any pressure on her at mealtimes, make it relaxed, don't force her to eat anything, always offer her 1 or 2 items she will eat along with the items she won't. And basically we've gotten nowhere. My big concern is her diet consists of mostly junk and the therapists have all said this is fine. This is how we get her to transition over to other foods. We take what she will eat and slowly add new foods. The therapists also give her this same food and change one thing such as the shape of the pretzel or something like that. So now I have to get blood work drawn every 3 months because what is showing up is concerning. I do remember 1 thing that showed up was that her pre-albumin (sp?) was like 13 and they said it should be 20. I forget what else showed up but I know it has them concerned.

She has recently been referred to the Cleveland Clinic Feeding disorder program. There's a waiting list so we don't go in untill the end of Oct. for our evaluation. But I wonder if that will help at all.

If I give her a plate of food that has nothing on it she likes she will look at it and run screaming from the room yelling NO I don't like it. UGH so very frustrating. I just don't know what to do. It's like a very big brick wall.

Thanks again for the help. I really do appreciate it.

TERIMommy to 5, 10 HH, le, 8 HH, Brittany, 5 HH; , 4 HH, Autistic, feeding disorder; , forever 18 months, 13 days HLHS (Modified Norwood with Sano shunt; coarctation; Glenn & tricuspid valve repair, g-tube; became an Angel 6-22-06--I love you baby girl--Always & Forever))carepage name: Girlhttp://www.carepages.com/Login?seed=844556http://www.babiesonline.com/babies/p/peanutbutter5/

August 27, 2006

I don't have any suggestions on the eating thing. My 17 yos

eat just about everything CARBS. I would try the gfcf diet

but they would never do that. I just wanted to say I am SO

very sorry for your losing your angel . She was a doll

I hope the Cleveland Clinic can help you with .

Best of luck to you and feel free to vent or ask questions

anytime. Toni

> Thanks to everyone for the welcome and all the

> suggestions. I'm glad to have somewhere to turn with her

> after struggling for so long. I've felt alone and

> isolated for a while with her.

>

> 's diet consists of shoestring french fries (HAS to

> be shoestring), peeled apples, ritz crackers, cheese nip

> crackers, pretzels, Reese PB cups, fruity pebbles cereal,

> cheese puff popcorn or reg popcorn, sometimes she will

> take other dry cereal such as cap n crunch or frosted mini

> wheats. And I recently got her to eat Trix yogurt (but

> only that brand). I can get her to eat ice cream in a

> cone but she won't eat the cone; just licks the ice cream

> out (only chocolate or vanilla though). She will drink

> choc milk only and I do mix in either pediasure or boost

> but in a small amount because if I put too much in she

> notices the different taste and will refuse to drink it.

> My youngest daughter was given a box of resource fruit

> beverage drinks that are loaded with vitamins and minerals

> after her hospital stay in May/June. They were in the

> house and when passed away I tried them with

> and she LOVED them. I got a prescription from the

> doc to get them, but our insurance won't cover them. And

> they are expensive ($46 for 24) and you have to mail order

> them. I've appealed this with the insurance company and

> 's ped has called them several times so I don't

> know if we'll ever get them covered. She has been in

> feeding therapy since she was 1 1/2 and I have followed

> all the suggestions of the therapists. I was told to not

> put any pressure on her at mealtimes, make it relaxed,

> don't force her to eat anything, always offer her 1 or 2

> items she will eat along with the items she won't. And

> basically we've gotten nowhere. My big concern is her

> diet consists of mostly junk and the therapists have all

> said this is fine. This is how we get her to transition

> over to other foods. We take what she will eat and slowly

> add new foods. The therapists also give her this same

> food and change one thing such as the shape of the pretzel

> or something like that. So now I have to get blood work

> drawn every 3 months because what is showing up is

> concerning. I do remember 1 thing that showed up was that

> her pre-albumin (sp?) was like 13 and they said it should

> be 20. I forget what else showed up but I know it has

> them concerned. She has recently been referred to the

> Cleveland Clinic Feeding disorder program. There's a

> waiting list so we don't go in untill the end of Oct. for

> our evaluation. But I wonder if that will help at all. If

> I give her a plate of food that has nothing on it she

> likes she will look at it and run screaming from the room

> yelling NO I don't like it. UGH so very frustrating. I

> just don't know what to do. It's like a very big brick

> wall. Thanks again for the help. I really do appreciate

> it. TERI

> Mommy to 5

> , 10 HH, le, 8 HH, Brittany, 5 HH; , 4

> HH, Autistic, feeding disorder; , forever 18 months,

> 13 days HLHS (Modified Norwood with Sano shunt;

> coarctation; Glenn & tricuspid valve repair, g-tube;

> became an Angel 6-22-06--I love you baby girl--Always &

> Forever)) carepage name: Girl

> http://www.carepages.com/Login?seed=844556

> http://www.babiesonline.com/babies/p/peanutbutter5/

>

> [Attachment: 113648.png]

> [Attachment: ASHLEY 13 MONTHS 2-5-06 e-mail.jpg]

I, not events, have the power to make me happy or unhappy

today. I can CHOOSE which it shall be. Groucho Marx

_________________________________________

Check your Email accounts at MyEmail.com

Login from home, work, school. Anywhere!

August 29, 2006

:

Thanks for the words of support. I'm so sorry about your little boy. It must make it harder since there was really no answers as to what happened. I'm so sorry for that. I will keep you in my prayers and thoughts. I've been told the pain is always there, just changes.

Take care

TERIMommy to 5, 10 HH, le, 8 HH, Brittany, 5 HH; , 4 HH, Autistic, feeding disorder; , forever 18 months, 13 days HLHS (Modified Norwood with Sano shunt; coarctation; Glenn & tricuspid valve repair, g-tube; became an Angel 6-22-06--I love you baby girl--Always & Forever))carepage name: Girlhttp://www.carepages.com/Login?seed=844556http://www.babiesonline.com/babies/p/peanutbutter5/http://knightfamily-adventures.blogspot.com/'>http://www.carepages.com/Login?seed=844556http://www.babiesonline.com/babies/p/peanutbutter5/http://knightfamily-adventures.blogspot.com/

My daughter's diet

Thanks to everyone for the welcome and all the suggestions. I'm glad to have somewhere to turn with her after struggling for so long. I've felt alone and isolated for a while with her.

's diet consists of shoestring french fries (HAS to be shoestring), peeled apples, ritz crackers, cheese nip crackers, pretzels, Reese PB cups, fruity pebbles cereal, cheese puff popcorn or reg popcorn, sometimes she will take other dry cereal such as cap n crunch or frosted mini wheats. And I recently got her to eat Trix yogurt (but only that brand). I can get her to eat ice cream in a cone but she won't eat the cone; just licks the ice cream out (only chocolate or vanilla though).

She will drink choc milk only and I do mix in either pediasure or boost but in a small amount because if I put too much in she notices the different taste and will refuse to drink it.

My youngest daughter was given a box of resource fruit beverage drinks that are loaded with vitamins and minerals after her hospital stay in May/June. They were in the house and when passed away I tried them with and she LOVED them. I got a prescription from the doc to get them, but our insurance won't cover them. And they are expensive ($46 for 24) and you have to mail order them. I've appealed this with the insurance company and 's ped has called them several times so I don't know if we'll ever get them covered.

She has been in feeding therapy since she was 1 1/2 and I have followed all the suggestions of the therapists. I was told to not put any pressure on her at mealtimes, make it relaxed, don't force her to eat anything, always offer her 1 or 2 items she will eat along with the items she won't. And basically we've gotten nowhere. My big concern is her diet consists of mostly junk and the therapists have all said this is fine. This is how we get her to transition over to other foods. We take what she will eat and slowly add new foods. The therapists also give her this same food and change one thing such as the shape of the pretzel or something like that. So now I have to get blood work drawn every 3 months because what is showing up is concerning. I do remember 1 thing that showed up was that her pre-albumin (sp?) was like 13 and they said it should be 20. I forget what else showed up but I know it has them concerned.

She has recently been referred to the Cleveland Clinic Feeding disorder program. There's a waiting list so we don't go in untill the end of Oct. for our evaluation. But I wonder if that will help at all.

If I give her a plate of food that has nothing on it she likes she will look at it and run screaming from the room yelling NO I don't like it. UGH so very frustrating. I just don't know what to do. It's like a very big brick wall.

Thanks again for the help. I really do appreciate it.

TERIMommy to 5, 10 HH, le, 8 HH, Brittany, 5 HH; , 4 HH, Autistic, feeding disorder; , forever 18 months, 13 days HLHS (Modified Norwood with Sano shunt; coarctation; Glenn & tricuspid valve repair, g-tube; became an Angel 6-22-06--I love you baby girl--Always & Forever))carepage name: Girlhttp://www.carepages.com/Login?seed=844556http://www.babiesonline.com/babies/p/peanutbutter5/

August 29, 2006

:

Thanks for the words of support. I'm so sorry about your little boy. It must make it harder since there was really no answers as to what happened. I'm so sorry for that. I will keep you in my prayers and thoughts. I've been told the pain is always there, just changes.

Take care

TERIMommy to 5, 10 HH, le, 8 HH, Brittany, 5 HH; , 4 HH, Autistic, feeding disorder; , forever 18 months, 13 days HLHS (Modified Norwood with Sano shunt; coarctation; Glenn & tricuspid valve repair, g-tube; became an Angel 6-22-06--I love you baby girl--Always & Forever))carepage name: Girlhttp://www.carepages.com/Login?seed=844556http://www.babiesonline.com/babies/p/peanutbutter5/http://knightfamily-adventures.blogspot.com/'>http://www.carepages.com/Login?seed=844556http://www.babiesonline.com/babies/p/peanutbutter5/http://knightfamily-adventures.blogspot.com/

My daughter's diet

Thanks to everyone for the welcome and all the suggestions. I'm glad to have somewhere to turn with her after struggling for so long. I've felt alone and isolated for a while with her.

's diet consists of shoestring french fries (HAS to be shoestring), peeled apples, ritz crackers, cheese nip crackers, pretzels, Reese PB cups, fruity pebbles cereal, cheese puff popcorn or reg popcorn, sometimes she will take other dry cereal such as cap n crunch or frosted mini wheats. And I recently got her to eat Trix yogurt (but only that brand). I can get her to eat ice cream in a cone but she won't eat the cone; just licks the ice cream out (only chocolate or vanilla though).

She will drink choc milk only and I do mix in either pediasure or boost but in a small amount because if I put too much in she notices the different taste and will refuse to drink it.

My youngest daughter was given a box of resource fruit beverage drinks that are loaded with vitamins and minerals after her hospital stay in May/June. They were in the house and when passed away I tried them with and she LOVED them. I got a prescription from the doc to get them, but our insurance won't cover them. And they are expensive ($46 for 24) and you have to mail order them. I've appealed this with the insurance company and 's ped has called them several times so I don't know if we'll ever get them covered.

She has been in feeding therapy since she was 1 1/2 and I have followed all the suggestions of the therapists. I was told to not put any pressure on her at mealtimes, make it relaxed, don't force her to eat anything, always offer her 1 or 2 items she will eat along with the items she won't. And basically we've gotten nowhere. My big concern is her diet consists of mostly junk and the therapists have all said this is fine. This is how we get her to transition over to other foods. We take what she will eat and slowly add new foods. The therapists also give her this same food and change one thing such as the shape of the pretzel or something like that. So now I have to get blood work drawn every 3 months because what is showing up is concerning. I do remember 1 thing that showed up was that her pre-albumin (sp?) was like 13 and they said it should be 20. I forget what else showed up but I know it has them concerned.

She has recently been referred to the Cleveland Clinic Feeding disorder program. There's a waiting list so we don't go in untill the end of Oct. for our evaluation. But I wonder if that will help at all.

If I give her a plate of food that has nothing on it she likes she will look at it and run screaming from the room yelling NO I don't like it. UGH so very frustrating. I just don't know what to do. It's like a very big brick wall.

Thanks again for the help. I really do appreciate it.

TERIMommy to 5, 10 HH, le, 8 HH, Brittany, 5 HH; , 4 HH, Autistic, feeding disorder; , forever 18 months, 13 days HLHS (Modified Norwood with Sano shunt; coarctation; Glenn & tricuspid valve repair, g-tube; became an Angel 6-22-06--I love you baby girl--Always & Forever))carepage name: Girlhttp://www.carepages.com/Login?seed=844556http://www.babiesonline.com/babies/p/peanutbutter5/

August 29, 2006

Toni:

Thanks. I miss my baby girl every minute of every day. I appreciate the words of support.

I've been putting off taking to the Clinic, because honestly, I'm afraid to walk back into any hospital with any of my kids after everything my little one went through, but I know eventually I have to seek help somewhere.

TERIMommy to 5, 10 HH, le, 8 HH, Brittany, 5 HH; , 4 HH, Autistic, feeding disorder; , forever 18 months, 13 days HLHS (Modified Norwood with Sano shunt; coarctation; Glenn & tricuspid valve repair, g-tube; became an Angel 6-22-06--I love you baby girl--Always & Forever))carepage name: Girlhttp://www.carepages.com/Login?seed=844556http://www.babiesonline.com/babies/p/peanutbutter5/http://knightfamily-adventures.blogspot.com/

Re: My daughter's diet

I don't have any suggestions on the eating thing. My 17 yoseat just about everything CARBS. I would try the gfcf dietbut they would never do that. I just wanted to say I am SOvery sorry for your losing your angel . She was a dollI hope the Cleveland Clinic can help you with .Best of luck to you and feel free to vent or ask questionsanytime. Toni> Thanks to everyone for the welcome and all the> suggestions. I'm glad to have somewhere to turn with her> after struggling for so long. I've felt alone and> isolated for a while with her.> > 's diet consists of shoestring french fries (HAS to> be shoestring), peeled apples, ritz crackers, cheese nip> crackers, pretzels, Reese PB cups, fruity pebbles cereal,> cheese puff popcorn or reg popcorn, sometimes she will> take other dry cereal such as cap n crunch or frosted mini> wheats. And I recently got her to eat Trix yogurt (but> only that brand). I can get her to eat ice cream in a> cone but she won't eat the cone; just licks the ice cream> out (only chocolate or vanilla though). She will drink> choc milk only and I do mix in either pediasure or boost> but in a small amount because if I put too much in she> notices the different taste and will refuse to drink it.> My youngest daughter was given a box of resource fruit> beverage drinks that are loaded with vitamins and minerals> after her hospital stay in May/June. They were in the> house and when passed away I tried them with> and she LOVED them. I got a prescription from the> doc to get them, but our insurance won't cover them. And> they are expensive ($46 for 24) and you have to mail order> them. I've appealed this with the insurance company and> 's ped has called them several times so I don't> know if we'll ever get them covered. She has been in> feeding therapy since she was 1 1/2 and I have followed> all the suggestions of the therapists. I was told to not> put any pressure on her at mealtimes, make it relaxed,> don't force her to eat anything, always offer her 1 or 2> items she will eat along with the items she won't. And> basically we've gotten nowhere. My big concern is her> diet consists of mostly junk and the therapists have all> said this is fine. This is how we get her to transition> over to other foods. We take what she will eat and slowly> add new foods. The therapists also give her this same> food and change one thing such as the shape of the pretzel> or something like that. So now I have to get blood work> drawn every 3 months because what is showing up is> concerning. I do remember 1 thing that showed up was that> her pre-albumin (sp?) was like 13 and they said it should> be 20. I forget what else showed up but I know it has> them concerned. She has recently been referred to the> Cleveland Clinic Feeding disorder program. There's a> waiting list so we don't go in untill the end of Oct. for> our evaluation. But I wonder if that will help at all. If> I give her a plate of food that has nothing on it she> likes she will look at it and run screaming from the room> yelling NO I don't like it. UGH so very frustrating. I> just don't know what to do. It's like a very big brick> wall. Thanks again for the help. I really do appreciate> it. TERI> Mommy to 5> , 10 HH, le, 8 HH, Brittany, 5 HH; , 4> HH, Autistic, feeding disorder; , forever 18 months,> 13 days HLHS (Modified Norwood with Sano shunt;> coarctation; Glenn & tricuspid valve repair, g-tube;> became an Angel 6-22-06--I love you baby girl--Always & > Forever)) carepage name: Girl> http://www.carepages.com/Login?seed=844556> http://www.babiesonline.com/babies/p/peanutbutter5/> > > > [Attachment: 113648.png]> [Attachment: ASHLEY 13 MONTHS 2-5-06 e-mail.jpg]I, not events, have the power to make me happy or unhappytoday. I can CHOOSE which it shall be. Groucho Marx_________________________________________Check your Email accounts at MyEmail.comLogin from home, work, school. Anywhere!

August 29, 2006

Toni:

Thanks. I miss my baby girl every minute of every day. I appreciate the words of support.

I've been putting off taking to the Clinic, because honestly, I'm afraid to walk back into any hospital with any of my kids after everything my little one went through, but I know eventually I have to seek help somewhere.

TERIMommy to 5, 10 HH, le, 8 HH, Brittany, 5 HH; , 4 HH, Autistic, feeding disorder; , forever 18 months, 13 days HLHS (Modified Norwood with Sano shunt; coarctation; Glenn & tricuspid valve repair, g-tube; became an Angel 6-22-06--I love you baby girl--Always & Forever))carepage name: Girlhttp://www.carepages.com/Login?seed=844556http://www.babiesonline.com/babies/p/peanutbutter5/http://knightfamily-adventures.blogspot.com/

Re: My daughter's diet

I don't have any suggestions on the eating thing. My 17 yoseat just about everything CARBS. I would try the gfcf dietbut they would never do that. I just wanted to say I am SOvery sorry for your losing your angel . She was a dollI hope the Cleveland Clinic can help you with .Best of luck to you and feel free to vent or ask questionsanytime. Toni> Thanks to everyone for the welcome and all the> suggestions. I'm glad to have somewhere to turn with her> after struggling for so long. I've felt alone and> isolated for a while with her.> > 's diet consists of shoestring french fries (HAS to> be shoestring), peeled apples, ritz crackers, cheese nip> crackers, pretzels, Reese PB cups, fruity pebbles cereal,> cheese puff popcorn or reg popcorn, sometimes she will> take other dry cereal such as cap n crunch or frosted mini> wheats. And I recently got her to eat Trix yogurt (but> only that brand). I can get her to eat ice cream in a> cone but she won't eat the cone; just licks the ice cream> out (only chocolate or vanilla though). She will drink> choc milk only and I do mix in either pediasure or boost> but in a small amount because if I put too much in she> notices the different taste and will refuse to drink it.> My youngest daughter was given a box of resource fruit> beverage drinks that are loaded with vitamins and minerals> after her hospital stay in May/June. They were in the> house and when passed away I tried them with> and she LOVED them. I got a prescription from the> doc to get them, but our insurance won't cover them. And> they are expensive ($46 for 24) and you have to mail order> them. I've appealed this with the insurance company and> 's ped has called them several times so I don't> know if we'll ever get them covered. She has been in> feeding therapy since she was 1 1/2 and I have followed> all the suggestions of the therapists. I was told to not> put any pressure on her at mealtimes, make it relaxed,> don't force her to eat anything, always offer her 1 or 2> items she will eat along with the items she won't. And> basically we've gotten nowhere. My big concern is her> diet consists of mostly junk and the therapists have all> said this is fine. This is how we get her to transition> over to other foods. We take what she will eat and slowly> add new foods. The therapists also give her this same> food and change one thing such as the shape of the pretzel> or something like that. So now I have to get blood work> drawn every 3 months because what is showing up is> concerning. I do remember 1 thing that showed up was that> her pre-albumin (sp?) was like 13 and they said it should> be 20. I forget what else showed up but I know it has> them concerned. She has recently been referred to the> Cleveland Clinic Feeding disorder program. There's a> waiting list so we don't go in untill the end of Oct. for> our evaluation. But I wonder if that will help at all. If> I give her a plate of food that has nothing on it she> likes she will look at it and run screaming from the room> yelling NO I don't like it. UGH so very frustrating. I> just don't know what to do. It's like a very big brick> wall. Thanks again for the help. I really do appreciate> it. TERI> Mommy to 5> , 10 HH, le, 8 HH, Brittany, 5 HH; , 4> HH, Autistic, feeding disorder; , forever 18 months,> 13 days HLHS (Modified Norwood with Sano shunt;> coarctation; Glenn & tricuspid valve repair, g-tube;> became an Angel 6-22-06--I love you baby girl--Always & > Forever)) carepage name: Girl> http://www.carepages.com/Login?seed=844556> http://www.babiesonline.com/babies/p/peanutbutter5/> > > > [Attachment: 113648.png]> [Attachment: ASHLEY 13 MONTHS 2-5-06 e-mail.jpg]I, not events, have the power to make me happy or unhappytoday. I can CHOOSE which it shall be. Groucho Marx_________________________________________Check your Email accounts at MyEmail.comLogin from home, work, school. Anywhere!

August 30, 2006

After the talk of losing a child, I wanted to share with you a link from Dear Abby yesterday. It is www.nowilaymedowntosleep.org and it is something that I think is so needed for parents who's angels are taken from them too soon. It is a very moving site and what a blessing to know this is available, if god forbid, any of us are ever in this situation.

Big Gentle Hugs

September 1, 2006

I read an article about this a few years ago. I think this is without a doubt one of the most beautiful, real things that I have ever seen. Many people do not realize the need for closure, to be able to pick something up substantial that shows that a child did live, that she/he was here, that we loved him/her. Amazing. Bickford <Bickfordla@...> wrote: After the talk of losing a child, I

wanted to share with you a link from Dear Abby yesterday. It is www.nowilaymedowntosleep.org and it is something that I think is so needed for parents who's angels are taken from them too soon. It is a very moving site and what a blessing to know this is available, if god forbid, any of us are ever in this situation. Big Gentle Hugs If there are no dogs in Heaven, then when I die I want to go where they wentWill There is no psychiatrist in the world like a puppy licking your face.Ben A dog is the only thing on earth that loves you more than he loveshimself.Josh Billings

Get your own web address for just $1.99/1st yr. We'll help. Small Business.

September 3, 2006

Thank you for the prayers Teri. The 25th of this month he would have turned 10. He went to be with God on the 28th of September in 1996. It was very hard not knowing at first, especially since that led to my DH and I blaming ourselves, others blaming doctors and everyone trying to come up with reasons for us (the docs know it wasn't SIDS and they know we didn't do anything, they think it was an inborn error). It was especially hard when I got pregnant with my 2nd child (my sensory kid who might also be Asperger's) because the doctors did not have any way of predicting if the same thing would happen to him. That's the only time I really needed to know what happened to . I still didn't get any answers but , my 2nd, is fine overall and we were also able to have a 3rd healthy child (who is mostly NT but has some mild sensory issues). So, for the most part, I've simply learned to live with the lack of answers. Answers won't bring him back, won't change the pain or the past and don't feel like they'd have any real impact on the future now either. The pain does stay with you but it becomes much less overwhelming and eventually you have days where you don't think about your child constantly. After that, you realize you've gone almost an entire day without thinking about him or her and then sometimes you even ask yourself, did I think about my angel yesterday, I don't remember sometimes but I'm pretty sure I have at least fleeting thoughts every day. Sometimes, the pain pops up out of nowhere too, just when you think you're really even emotionally most of the time and fully engaged in life again and wham, a baby cries, a commercial touches you, whatever and your heart is burning and the tears are coming again. That never ends, at least it hasn't in 10 years with me and a friend, who at the time I lost was counting 21 years since she'd held her baby, said it still happened every once in a great while for her too. It isn't bad though, sometimes it actually feels good to cry again because it is a more impactful connection with your child then the easier thoughts that come and go without an emotional response (that really does happen, you'll eventually be able to think about , always aware of how much you love and miss her but without fearing breaking down at that moment). So yes, the pain is always there, but becomes more manageable and even seems to fade for stretches of time (it is scary at first when that happens because you wonder if you loved your child enough, you should be sad all the time but it is healing and good and not something to feel guilty about).

My daughter's diet

Thanks to everyone for the welcome and all the suggestions. I'm glad to have somewhere to turn with her after struggling for so long. I've felt alone and isolated for a while with her.

's diet consists of shoestring french fries (HAS to be shoestring), peeled apples, ritz crackers, cheese nip crackers, pretzels, Reese PB cups, fruity pebbles cereal, cheese puff popcorn or reg popcorn, sometimes she will take other dry cereal such as cap n crunch or frosted mini wheats. And I recently got her to eat Trix yogurt (but only that brand). I can get her to eat ice cream in a cone but she won't eat the cone; just licks the ice cream out (only chocolate or vanilla though).

She will drink choc milk only and I do mix in either pediasure or boost but in a small amount because if I put too much in she notices the different taste and will refuse to drink it.

My youngest daughter was given a box of resource fruit beverage drinks that are loaded with vitamins and minerals after her hospital stay in May/June. They were in the house and when passed away I tried them with and she LOVED them. I got a prescription from the doc to get them, but our insurance won't cover them. And they are expensive ($46 for 24) and you have to mail order them. I've appealed this with the insurance company and 's ped has called them several times so I don't know if we'll ever get them covered.

She has been in feeding therapy since she was 1 1/2 and I have followed all the suggestions of the therapists. I was told to not put any pressure on her at mealtimes, make it relaxed, don't force her to eat anything, always offer her 1 or 2 items she will eat along with the items she won't. And basically we've gotten nowhere. My big concern is her diet consists of mostly junk and the therapists have all said this is fine. This is how we get her to transition over to other foods. We take what she will eat and slowly add new foods. The therapists also give her this same food and change one thing such as the shape of the pretzel or something like that. So now I have to get blood work drawn every 3 months because what is showing up is concerning. I do remember 1 thing that showed up was that her pre-albumin (sp?) was like 13 and they said it should be 20. I forget what else showed up but I know it has them concerned.

She has recently been referred to the Cleveland Clinic Feeding disorder program. There's a waiting list so we don't go in untill the end of Oct. for our evaluation. But I wonder if that will help at all.

If I give her a plate of food that has nothing on it she likes she will look at it and run screaming from the room yelling NO I don't like it. UGH so very frustrating. I just don't know what to do. It's like a very big brick wall.

Thanks again for the help. I really do appreciate it.

TERIMommy to 5, 10 HH, le, 8 HH, Brittany, 5 HH; , 4 HH, Autistic, feeding disorder; , forever 18 months, 13 days HLHS (Modified Norwood with Sano shunt; coarctation; Glenn & tricuspid valve repair, g-tube; became an Angel 6-22-06--I love you baby girl--Always & Forever))carepage name: Girlhttp://www.carepages.com/Login?seed=844556http://www.babiesonline.com/babies/p/peanutbutter5/

September 3, 2006

Hi my name is my son Deven is diagnosed with autism at two and we have

some struggles with the school system and various things he is pretty high

fuctioning and no real behavior issues. This is my first message to the group

and replied to this one because my second child Nikolas died on october 31st

2004 and was born sept 9th 2004 which is also my birthday and nobody ever really

new why. He was seven weeks old and no reason was determined. It has been very

hard and that first few months following I basically had a nervous breakdown. I

completely know what you mean because I will catch myself and say did I think

about him today and sometimes feel guilty as if I am neglecting him because I

don't obsess over him anymore and I love him so much I feel guilty when people

say how many kids do you have and I say two instead of three (I have a seven

month old beautiful baby girl) but if I say three and they say how old I have to

bring up his death and I don't want to go into it. I have so many mixed emotions

and not sure if it will ever get better. I am really emotional tonite I guess

because it is almost our birthday and today my best friends three year old

cousin died in a car wreck. I am just so thankful for my kids and I also have

another on the way. Bless both of you who have been through losing a child also.

Will this ever start to get better???

Sent from my BlackBerry® wireless handheld

Re: My daughter's diet

Thank you for the prayers Teri. The 25th of this month he would have turned 10.

He went to be with God on the 28th of September in 1996. It was very hard not

knowing at first, especially since that led to my DH and I blaming ourselves,

others blaming doctors and everyone trying to come up with reasons for us (the

docs know it wasn't SIDS and they know we didn't do anything, they think it was

an inborn error). It was especially hard when I got pregnant with my 2nd child

(my sensory kid who might also be Asperger's) because the doctors did not have

any way of predicting if the same thing would happen to him. That's the only

time I really needed to know what happened to . I still didn't get any

answers but , my 2nd, is fine overall and we were also able to have a 3rd

healthy child (who is mostly NT but has some mild sensory issues). So, for the

most part, I've simply learned to live with the lack of answers. Answers won't

bring him back, won't change the pain or the past and don't feel like they'd

have any real impact on the future now either. The pain does stay with you but

it becomes much less overwhelming and eventually you have days where you don't

think about your child constantly. After that, you realize you've gone almost an

entire day without thinking about him or her and then sometimes you even ask

yourself, did I think about my angel yesterday, I don't remember sometimes but

I'm pretty sure I have at least fleeting thoughts every day. Sometimes, the pain

pops up out of nowhere too, just when you think you're really even emotionally

most of the time and fully engaged in life again and wham, a baby cries, a

commercial touches you, whatever and your heart is burning and the tears are

coming again. That never ends, at least it hasn't in 10 years with me and a

friend, who at the time I lost was counting 21 years since she'd held her

baby, said it still happened every once in a great while for her too. It isn't

bad though, sometimes it actually feels good to cry again because it

is a more impactful connection with your child then the easier thoughts that

come and go without an emotional response (that really does happen, you'll

eventually be able to think about , always aware of how much you love and

miss her but without fearing breaking down at that moment). So yes, the pain is

always there, but becomes more manageable and even seems to fade for stretches

of time (it is scary at first when that happens because you wonder if you loved

your child enough, you should be sad all the time but it is healing and good and

not something to feel guilty about).

My daughter's diet

Thanks to everyone for the welcome and all the suggestions. I'm glad to have

somewhere to turn with her after struggling for so long. I've felt alone and

isolated for a while with her.

's diet consists of shoestring french fries (HAS to be shoestring),

peeled apples, ritz crackers, cheese nip crackers, pretzels, Reese PB cups,

fruity pebbles cereal, cheese puff popcorn or reg popcorn, sometimes she will

take other dry cereal such as cap n crunch or frosted mini wheats. And I

recently got her to eat Trix yogurt (but only that brand). I can get her to eat

ice cream in a cone but she won't eat the cone; just licks the ice cream out

(only chocolate or vanilla though).

She will drink choc milk only and I do mix in either pediasure or boost but in a

small amount because if I put too much in she notices the different taste and

will refuse to drink it.

My youngest daughter was given a box of resource fruit beverage drinks that are

loaded with vitamins and minerals after her hospital stay in May/June. They

were in the house and when passed away I tried them with and she

LOVED them. I got a prescription from the doc to get them, but our insurance

won't cover them. And they are expensive ($46 for 24) and you have to mail

order them. I've appealed this with the insurance company and 's ped has

called them several times so I don't know if we'll ever get them covered.

She has been in feeding therapy since she was 1 1/2 and I have followed all the

suggestions of the therapists. I was told to not put any pressure on her at

mealtimes, make it relaxed, don't force her to eat anything, always offer her 1

or 2 items she will eat along with the items she won't. And basically we've

gotten nowhere. My big concern is her diet consists of mostly junk and the

therapists have all said this is fine. This is how we get her to transition

over to other foods. We take what she will eat and slowly add new foods. The

therapists also give her this same food and change one thing such as the shape

of the pretzel or something like that. So now I have to get blood work drawn

every 3 months because what is showing up is concerning. I do remember 1 thing

that showed up was that her pre-albumin (sp?) was like 13 and they said it

should be 20. I forget what else showed up but I know it has them concerned.

She has recently been referred to the Cleveland Clinic Feeding disorder

program. There's a waiting list so we don't go in untill the end of Oct. for

our evaluation. But I wonder if that will help at all.

If I give her a plate of food that has nothing on it she likes she will look at

it and run screaming from the room yelling NO I don't like it. UGH so very

frustrating. I just don't know what to do. It's like a very big brick wall.

Thanks again for the help. I really do appreciate it.

TERI

Mommy to 5

, 10 HH, le, 8 HH, Brittany, 5 HH; , 4 HH, Autistic, feeding

disorder; , forever 18 months, 13 days HLHS (Modified Norwood with Sano

shunt; coarctation; Glenn & tricuspid valve repair, g-tube; became an Angel

6-22-06--I love you baby girl--Always & Forever))

carepage name: Girl

http://www.carepage: <http://www.carepages.com/Login?seed=844556>

s.com/Login?seed=844556

http://www.babieson: <http://www.babiesonline.com/babies/p/peanutbutter5/>

line.com/babies/p/peanutbutter5/

<http://www.snugglepie.com/>

September 4, 2006

BIG HUGS to you. Those little moments of emotion, you just have to remember

your angel is giving you a hug.

My daughter's diet

>

> Thanks to everyone for the welcome and all the suggestions. I'm glad to

> have somewhere to turn with her after struggling for so long. I've felt

> alone and isolated for a while with her.

>

> 's diet consists of shoestring french fries (HAS to be shoestring),

> peeled apples, ritz crackers, cheese nip crackers, pretzels, Reese PB

> cups, fruity pebbles cereal, cheese puff popcorn or reg popcorn, sometimes

> she will take other dry cereal such as cap n crunch or frosted mini

> wheats. And I recently got her to eat Trix yogurt (but only that brand). I

> can get her to eat ice cream in a cone but she won't eat the cone; just

> licks the ice cream out (only chocolate or vanilla though).

> She will drink choc milk only and I do mix in either pediasure or boost

> but in a small amount because if I put too much in she notices the

> different taste and will refuse to drink it.

> My youngest daughter was given a box of resource fruit beverage drinks

> that are loaded with vitamins and minerals after her hospital stay in

> May/June. They were in the house and when passed away I tried them

> with and she LOVED them. I got a prescription from the doc to get

> them, but our insurance won't cover them. And they are expensive ($46 for

> 24) and you have to mail order them. I've appealed this with the insurance

> company and 's ped has called them several times so I don't know if

> we'll ever get them covered.

> She has been in feeding therapy since she was 1 1/2 and I have followed

> all the suggestions of the therapists. I was told to not put any pressure

> on her at mealtimes, make it relaxed, don't force her to eat anything,

> always offer her 1 or 2 items she will eat along with the items she won't.

> And basically we've gotten nowhere. My big concern is her diet consists of

> mostly junk and the therapists have all said this is fine. This is how we

> get her to transition over to other foods. We take what she will eat and

> slowly add new foods. The therapists also give her this same food and

> change one thing such as the shape of the pretzel or something like that.

> So now I have to get blood work drawn every 3 months because what is

> showing up is concerning. I do remember 1 thing that showed up was that

> her pre-albumin (sp?) was like 13 and they said it should be 20. I forget

> what else showed up but I know it has them concerned.

> She has recently been referred to the Cleveland Clinic Feeding disorder

> program. There's a waiting list so we don't go in untill the end of Oct.

> for our evaluation. But I wonder if that will help at all.

> If I give her a plate of food that has nothing on it she likes she will

> look at it and run screaming from the room yelling NO I don't like it. UGH

> so very frustrating. I just don't know what to do. It's like a very big

> brick wall.

> Thanks again for the help. I really do appreciate it.

> TERI

> Mommy to 5

> , 10 HH, le, 8 HH, Brittany, 5 HH; , 4 HH, Autistic,

> feeding disorder; , forever 18 months, 13 days HLHS (Modified

> Norwood with Sano shunt; coarctation; Glenn & tricuspid valve repair,

> g-tube; became an Angel 6-22-06--I love you baby girl--Always & Forever))

> carepage name: Girl

> http://www.carepage: <http://www.carepages.com/Login?seed=844556>

> s.com/Login?seed=844556

> http://www.babieson: <http://www.babiesonline.com/babies/p/peanutbutter5/>

> line.com/babies/p/peanutbutter5/

> <http://www.snugglepie.com/>

>

September 4, 2006

Hi ,

Some words from nearly 10 years of living without ... First, the guilt

about not being sure if you thought about Nikolas is completely normal...

but don't beat yourself up... Deven and your baby girl need you healthy and

ready to attend to their needs... the guilt hurts everyone and doesn't make

you feel better or love Nikolas any more than you already do. Having 2

living kids, especially one with autism and another on the way makes you a

very busy, much in demand mom... you're not hurting Nikolas by not obsessing

about him but are in fact honoring his memory by putting your energy into a

healthier, more necessary activity... creating meaningful memories with your

living children by being fully involved in them and fully present with them.

About the " how many children do you have? " question. Oh how I dreaded that

for so many years. I still do sometimes. I used to always say 3 (I have two

living kids) but then had to explain and that was almost as uncomfortable as

saying 2 and then feeling guilty for not including . Nowadays, I

usually say 2 unless I'm in a situation where I plan to/want to or

inevitably will have to be close with a person. When/if it seems like a good

time, I might later tell them about . I don't usually feel guilty about

it anymore. My heart knows how much I love him still and that not including

him doesn't hurt him but does save me some often very uncomfortable

conversations. You have to do what works for you though and not worry too

much about other people's reactions. Just be ready for the reactions though

if you say 3. Will this ever start to get better? Yes... 2 years is still

not long and the grief is still fresh in a lot of ways. Your birthdays

coming up, your friend's 3 year old cousin dying today (I am so sorry about

that too) have all brought the grief very close to the surface again. It may

happen again in October, around the anniversary of his death. It will,

eventually, get better though. I can't tell you when, I can only tell you

that it will. Time takes us further away from the immediate experience of

our lost angels which is very hard but it also does bring in large measure

healing and peace. You're not there right now though and that is okay...

especially now with all the pain over the 3 year old's death and helping

your best friend deal with it and of course, your birthdays. My prayers are

with you, and I'm sure many others are too... now go hug Devin and your

little girl and find something meaningful and enjoyable to do with them...

it will be hard but it will also probably help... and if you just can't,

then give yourself the room to simply grieve for a while... God bless you...