InfantReflux.Org Forums: gonna be gone, probably

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knb18
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Joined: 20 October 2005
Location: United States
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Posts: 1952

Posted: 06 June 2006 at 6:49am

I hope the meal support training works and that things turn around for her and your whole family soon.

Karen, Mom to Marisa (8-11-05), off Pepcid and on organic whole milk!

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s&h's mum
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Joined: 30 October 2005
Location: Canada
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Posts: 5797

Posted: 06 June 2006 at 8:06am

Christine,

I'm so sorry. I hope and pray that the meal support training works for her.

LORI, mom to:

Sarah-09/03-My sweet princess.

Hailey-05/05- My funny little girl. 4 years old, but still my baby.
Past feeding aversion. Now typical eater, off prevacid for 1.5 years!

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Anne
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Joined: 16 February 2005
Location: United States
Online Status: Offline
Posts: 1079

Posted: 09 June 2006 at 7:28pm

Christine,

I have a friend who was the director of a residential program in southern California focusing on eating disorders (until having a baby)-- she's worked in this field for many years. I ran your situation by her and she suggested I email you the link to the facility where she worked. I know it's a long way from you, but they have just opened a facility in Menlo Park, CA, which is in northern CA, as well. They are hoping to open one in Seattle, but not sure when this would be. She said they are recognized as one of the best residential programs focusing on eating disorders in the country.

She said she would be happy to talk to you on the phone and answer any questions you might have-- general questions or questions about the facility. Email me at my personal email and I will send her home phone number: annec oy ner@ yahoo. com (without spaces). She is very nice, and if anything could be a resource for your questions. She's in her early 40s and devoted much of her career to working with youth with eating disorders, and she helped to build the program at the following site:

http://www.centerfordiscovery.com/

I don't know how you feel about these kinds of options, but just thought I would offer her as a resource for you since this is all new for you and your family. I continue to keep you in my thoughts and hope things are improving.

ps. Sorry for not sending this directly to your email, I have misplaced your address!

Anne-37 Ryan-40
Lucas 9/18/04
Hiatal hernia, mult protein intol
Zegerid, probiotics
Bfed 2 yrs still no dairy/gluten/oats
Norah- 9/12/08 zeg., b-fed 2 yrs,
no dairy/nuts/corn/soy
Night waking

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AR'smom
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Fan

Joined: 19 February 2005
Location: United States
Online Status: Offline
Posts: 416

Posted: 21 June 2006 at 12:21am

Christine,

I am really at a lose of sorts. Just know you are all in our prayers and thoughts often. I am glad to see that alot of seniors do check in. And your information is important, I think new and old alike need to bring all the prespectives and I have (thankfully) never seen you hold back for a question or concern.

It seems as our kids get older and we get a wee bit wiser it is easy to get caught up and visit less but I know I still need everyone and wish I had more time to fulfill my curiosity on how everyone is doing.

Please keep in touch and I hope your family will over come this in Gods grace and Love.

Take care,

Susan

Susan & Don
No. California
Kaitlyn 09-18-02 (15 mg prevacid)
Andrew 07-29-04 GERD (silent refluxer), 15mg/30mg prevacid solutabs. Goats milk

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Lauren
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Joined: 15 September 2004
Location: United States
Online Status: Offline
Posts: 409

Posted: 21 June 2006 at 8:48pm

((((HUGS)))) Christine...

I am praying the feeding tube was not necessary & that Tianna is doing better. Praying for your other daughter. Praying for ALL of you that you continue to have the strength, courage, & wisdom to get through this. I know it is a long road ahead, my thoughts will be with you throughout. Please, again know I've always got an open ear for ya.

Take care. (((HUGS))) & prayers....

Lauren
Madi (6!)
Emma (5/12/04) Fundo & Gtube 7/05, asthma, heart/kidney defects, static encephalopathy, seizures, SPD, speech apraxia, devel. delay
Neocate/Elecare, Trileptal, Prevacid, Periactin

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kevieb
Senior Member

Joined: 02 December 2003
Location: United States
Online Status: Offline
Posts: 3539

Posted: 21 June 2006 at 11:35pm

well-----we are headed back to seattle on friday. tianna did not get a feeding tube, but we have learned that, even with their close supervision, she has managed to find a way to purge 2-3 times a day for the last 2 weeks. her O2 levels are high, and her orthostatic blood pressure measurements are off. they also told me yesterday that she may not be ready to return home with us. she is only at 74% of her ideal body weight---they want her at 80-85%. they say she is doing better, that it is a good sign that she told them about the purging. i am afraid to bring her home.

we don't even know yet where we will be staying. the ronald mcdonald house has been running full---they will call me tomorrow and let me know if there is a room. my dad will be picking us up from the airport, but he lives 1 1/2 hours from seattle, so staying with him is not an option.

tianna seems to be angry when i talk to her---but she doesn't like it when i don't call, either.

i'm worried about finding tianna the help she will need when she comes home. we're a pretty small town and limited in who and what is available. i may end up driving tianna to boise weekly (2 1/2 hrs) to see the ped gi, a counselor, and a dietician.

Edited by kevieb - 21 June 2006 at 11:36pm

christine

leif 83
daisy 85
ian 89
kassandra 91 reflux celiac
tianna 91 reflux celiac
molly 95 celiac
elliot 97
samantha 99
sylvia 10/6/03 fundoplication hiatal hernia repair 7/29/04

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boysmom
Fan
Fan

Joined: 02 August 2005
Location: United States
Online Status: Offline
Posts: 355

Posted: 22 June 2006 at 5:51pm

Oh Christine - I feel for you and your family. Hopefully things will all work out. Hugs to you all. You are in our thoughts and prayers!

Tricia
Nate-4/26/02 no reflux
Zach-5/31/05 silent reflux
Whole Milk/off Prevacid at 1 year

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kevieb
Senior Member

Joined: 02 December 2003
Location: United States
Online Status: Offline
Posts: 3539

Posted: 22 June 2006 at 6:21pm

the ronald mcdonald house called and they have a room for us!! one less thing to worry about!

christine

leif 83
daisy 85
ian 89
kassandra 91 reflux celiac
tianna 91 reflux celiac
molly 95 celiac
elliot 97
samantha 99
sylvia 10/6/03 fundoplication hiatal hernia repair 7/29/04

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s&h's mum
Senior Member

Joined: 30 October 2005
Location: Canada
Online Status: Offline
Posts: 5797

Posted: 22 June 2006 at 9:31pm

Glad to hear that they have room for you Christine. I'm so sorry for all that your family is going through. I hope that Tianna gets over this soon. It sounds heartbreaking to hear what you are dealing with. How is Kassandra coping?

LORI, mom to:

Sarah-09/03-My sweet princess.

Hailey-05/05- My funny little girl. 4 years old, but still my baby.
Past feeding aversion. Now typical eater, off prevacid for 1.5 years!

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kevieb
Senior Member

Joined: 02 December 2003
Location: United States
Online Status: Offline
Posts: 3539

Posted: 22 June 2006 at 9:50pm

kassie is doing well. she and ian just went on a 4 day pioneer trek with a large church group-----they tried to make the whole thing as realistic as possible----so they came home stinking! LOL!!!! i know the girls' church leaders were worried whether or not tianna would be able to walk 10 miles. i'm really glad we discovered her condition before this trek-----i think it could have killed her.

christine

leif 83
daisy 85
ian 89
kassandra 91 reflux celiac
tianna 91 reflux celiac
molly 95 celiac
elliot 97
samantha 99
sylvia 10/6/03 fundoplication hiatal hernia repair 7/29/04

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Keeping In Touch
InfantReflux.Org Forums : Just For Fun : Keeping In Touch

Author	Message
knb18 Junior Member Joined: 20 October 2005 Location: United States Online Status: Offline Posts: 1952	Posted: 06 June 2006 at 6:49am
	I hope the meal support training works and that things turn around for her and your whole family soon.
	Karen, Mom to Marisa (8-11-05), off Pepcid and on organic whole milk!
	IP Logged

s&h's mum Senior Member Joined: 30 October 2005 Location: Canada Online Status: Offline Posts: 5797	Posted: 06 June 2006 at 8:06am
	Christine, I'm so sorry. I hope and pray that the meal support training works for her.
	LORI, mom to: Sarah-09/03-My sweet princess. Hailey-05/05- My funny little girl. 4 years old, but still my baby. Past feeding aversion. Now typical eater, off prevacid for 1.5 years!
	IP Logged

Anne Junior Member Joined: 16 February 2005 Location: United States Online Status: Offline Posts: 1079	Posted: 09 June 2006 at 7:28pm
	Christine, I have a friend who was the director of a residential program in southern California focusing on eating disorders (until having a baby)-- she's worked in this field for many years. I ran your situation by her and she suggested I email you the link to the facility where she worked. I know it's a long way from you, but they have just opened a facility in Menlo Park, CA, which is in northern CA, as well. They are hoping to open one in Seattle, but not sure when this would be. She said they are recognized as one of the best residential programs focusing on eating disorders in the country. She said she would be happy to talk to you on the phone and answer any questions you might have-- general questions or questions about the facility. Email me at my personal email and I will send her home phone number: annec oy ner@ yahoo. com (without spaces). She is very nice, and if anything could be a resource for your questions. She's in her early 40s and devoted much of her career to working with youth with eating disorders, and she helped to build the program at the following site: http://www.centerfordiscovery.com/ I don't know how you feel about these kinds of options, but just thought I would offer her as a resource for you since this is all new for you and your family. I continue to keep you in my thoughts and hope things are improving. ps. Sorry for not sending this directly to your email, I have misplaced your address!
	Anne-37 Ryan-40 Lucas 9/18/04 Hiatal hernia, mult protein intol Zegerid, probiotics Bfed 2 yrs still no dairy/gluten/oats Norah- 9/12/08 zeg., b-fed 2 yrs, no dairy/nuts/corn/soy Night waking
	IP Logged

AR'smom Fan Joined: 19 February 2005 Location: United States Online Status: Offline Posts: 416	Posted: 21 June 2006 at 12:21am
	Christine, I am really at a lose of sorts. Just know you are all in our prayers and thoughts often. I am glad to see that alot of seniors do check in. And your information is important, I think new and old alike need to bring all the prespectives and I have (thankfully) never seen you hold back for a question or concern. It seems as our kids get older and we get a wee bit wiser it is easy to get caught up and visit less but I know I still need everyone and wish I had more time to fulfill my curiosity on how everyone is doing. Please keep in touch and I hope your family will over come this in Gods grace and Love. Take care, Susan
	Susan & Don No. California Kaitlyn 09-18-02 (15 mg prevacid) Andrew 07-29-04 GERD (silent refluxer), 15mg/30mg prevacid solutabs. Goats milk
	IP Logged

Lauren Fan Joined: 15 September 2004 Location: United States Online Status: Offline Posts: 409	Posted: 21 June 2006 at 8:48pm
	((((HUGS)))) Christine... I am praying the feeding tube was not necessary & that Tianna is doing better. Praying for your other daughter. Praying for ALL of you that you continue to have the strength, courage, & wisdom to get through this. I know it is a long road ahead, my thoughts will be with you throughout. Please, again know I've always got an open ear for ya. Take care. (((HUGS))) & prayers....
	Lauren Madi (6!) Emma (5/12/04) Fundo & Gtube 7/05, asthma, heart/kidney defects, static encephalopathy, seizures, SPD, speech apraxia, devel. delay Neocate/Elecare, Trileptal, Prevacid, Periactin
	IP Logged

kevieb Senior Member Joined: 02 December 2003 Location: United States Online Status: Offline Posts: 3539	Posted: 21 June 2006 at 11:35pm
	well-----we are headed back to seattle on friday. tianna did not get a feeding tube, but we have learned that, even with their close supervision, she has managed to find a way to purge 2-3 times a day for the last 2 weeks. her O2 levels are high, and her orthostatic blood pressure measurements are off. they also told me yesterday that she may not be ready to return home with us. she is only at 74% of her ideal body weight---they want her at 80-85%. they say she is doing better, that it is a good sign that she told them about the purging. i am afraid to bring her home. we don't even know yet where we will be staying. the ronald mcdonald house has been running full---they will call me tomorrow and let me know if there is a room. my dad will be picking us up from the airport, but he lives 1 1/2 hours from seattle, so staying with him is not an option. tianna seems to be angry when i talk to her---but she doesn't like it when i don't call, either. i'm worried about finding tianna the help she will need when she comes home. we're a pretty small town and limited in who and what is available. i may end up driving tianna to boise weekly (2 1/2 hrs) to see the ped gi, a counselor, and a dietician. Edited by kevieb - 21 June 2006 at 11:36pm
	christine leif 83 daisy 85 ian 89 kassandra 91 reflux celiac tianna 91 reflux celiac molly 95 celiac elliot 97 samantha 99 sylvia 10/6/03 fundoplication hiatal hernia repair 7/29/04
	IP Logged

boysmom Fan Joined: 02 August 2005 Location: United States Online Status: Offline Posts: 355	Posted: 22 June 2006 at 5:51pm
	Oh Christine - I feel for you and your family. Hopefully things will all work out. Hugs to you all. You are in our thoughts and prayers!
	Tricia Nate-4/26/02 no reflux Zach-5/31/05 silent reflux Whole Milk/off Prevacid at 1 year
	IP Logged

kevieb Senior Member Joined: 02 December 2003 Location: United States Online Status: Offline Posts: 3539	Posted: 22 June 2006 at 6:21pm
	the ronald mcdonald house called and they have a room for us!! one less thing to worry about!
	christine leif 83 daisy 85 ian 89 kassandra 91 reflux celiac tianna 91 reflux celiac molly 95 celiac elliot 97 samantha 99 sylvia 10/6/03 fundoplication hiatal hernia repair 7/29/04
	IP Logged

s&h's mum Senior Member Joined: 30 October 2005 Location: Canada Online Status: Offline Posts: 5797	Posted: 22 June 2006 at 9:31pm
	Glad to hear that they have room for you Christine. I'm so sorry for all that your family is going through. I hope that Tianna gets over this soon. It sounds heartbreaking to hear what you are dealing with. How is Kassandra coping?
	LORI, mom to: Sarah-09/03-My sweet princess. Hailey-05/05- My funny little girl. 4 years old, but still my baby. Past feeding aversion. Now typical eater, off prevacid for 1.5 years!
	IP Logged

kevieb Senior Member Joined: 02 December 2003 Location: United States Online Status: Offline Posts: 3539	Posted: 22 June 2006 at 9:50pm
	kassie is doing well. she and ian just went on a 4 day pioneer trek with a large church group-----they tried to make the whole thing as realistic as possible----so they came home stinking! LOL!!!! i know the girls' church leaders were worried whether or not tianna would be able to walk 10 miles. i'm really glad we discovered her condition before this trek-----i think it could have killed her.
	christine leif 83 daisy 85 ian 89 kassandra 91 reflux celiac tianna 91 reflux celiac molly 95 celiac elliot 97 samantha 99 sylvia 10/6/03 fundoplication hiatal hernia repair 7/29/04
	IP Logged

Topic: gonna be gone, probably
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