Guest guest Posted May 26, 1999 Report Share Posted May 26, 1999 In a message dated 5/26/99 4:25:36 AM Pacific Daylight Time, pmzf@... writes: << Hi. I am taking a break from AJ. She has been running a fever of 105.7. She has a rash all over, diarehha, hasn't eaten and only wants Neocate. The GI wants to hold off giving her anything new until we figure out what is going on. >> I hope she is better soon and you find out what is causing her to be sick. Cathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 1999 Report Share Posted June 10, 1999 Hi Phyllis, Shana told me that AJ wanted to see how Miriam eats. I scanned them and...here's a picture of her feeding herself Vivonex (By NG tube after mom starts it) and one at bedtime. Miriam was so excited to see AJ. Good Wishes, Shana's mom - Diane in Milwaukee At 10:42 AM 5/31/99 -0400, you wrote: >AJ wanted to share her picture with you while she was 'eating'. She would >love to 'meet' other kids and see how they 'eat'. She is having a hard time >with the fact that there are others out there like her since all the people >she knows and see 'eat' the real way. THANKS > >Phyllis--mom to > >AJ (12/22/95) EG, GERD, Asthma, Allergies, Speech delay and hearing loss >Remi (8/3/92) Spina Bifida, LATEX, peanuts, shellfish, nut & avocado >allergies > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 1999 Report Share Posted September 9, 1999 Phyliss: Has you tried to apply for medicaid. We were able to get it for CLayton is NJ. If you want to know about the procedure that we used let me know. We used a split application. Love, Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 1999 Report Share Posted September 9, 1999 Phyliss: Has you tried to apply for medicaid. We were able to get it for CLayton is NJ. If you want to know about the procedure that we used let me know. We used a split application. Love, Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 1999 Report Share Posted September 9, 1999 Phyliss: Has you tried to apply for medicaid. We were able to get it for CLayton is NJ. If you want to know about the procedure that we used let me know. We used a split application. Love, Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 1999 Report Share Posted September 9, 1999 How the heck did you get this? We have been able to get zippo for Kody.. in spite of everything we're all going through and in spite of his condition... NOTHING, no assistance WHATSOEVER with ANYTHING. Steph Re: [eosinophilic gastroenteritis] AJ >From: SDidinsky@... > >Phyliss: > >Has you tried to apply for medicaid. We were able to get it for CLayton is >NJ. If you want to know about the procedure that we used let me know. We >used a split application. > >Love, >Sharon > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 1999 Report Share Posted September 9, 1999 How the heck did you get this? We have been able to get zippo for Kody.. in spite of everything we're all going through and in spite of his condition... NOTHING, no assistance WHATSOEVER with ANYTHING. Steph Re: [eosinophilic gastroenteritis] AJ >From: SDidinsky@... > >Phyliss: > >Has you tried to apply for medicaid. We were able to get it for CLayton is >NJ. If you want to know about the procedure that we used let me know. We >used a split application. > >Love, >Sharon > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 1999 Report Share Posted September 9, 1999 How the heck did you get this? We have been able to get zippo for Kody.. in spite of everything we're all going through and in spite of his condition... NOTHING, no assistance WHATSOEVER with ANYTHING. Steph Re: [eosinophilic gastroenteritis] AJ >From: SDidinsky@... > >Phyliss: > >Has you tried to apply for medicaid. We were able to get it for CLayton is >NJ. If you want to know about the procedure that we used let me know. We >used a split application. > >Love, >Sharon > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 1999 Report Share Posted September 10, 1999 Phyllis, Have you tried the Children's Miracle Network, they have helped BJ several times with over a $1,000 dollars. There is a chapter in every state. Dawn-KS, mommy to Dakota, 7 and aka BJ, 3 (eosinophilic gastroenteritis, Nissen, asthma, reflux), and mommy to Mackenzie Marie (due December 24) [eosinophilic gastroenteritis] AJ > > > Hi Dawn- > > AJ is doing fine stomach wise. She ate a whole banana the other day and got > sick but a few nibbles here and there and she is pretty happy. She just > totes those boxes of Neocate everywhere. My backpack probably weighs more > than the big kids, she says. She is afraid she will drink it all so take > tons extra and there is extra there already. She is in a new class with new > teachers, kids etc....but seems to be adapting. The big one is she is > losing her hearing. She was supposed to get hearing aids today, but they > cost $5100 and we haven't come up with an accecptable payment arrangement. > Good think, she really doesn't know time and know today was the day. We are > looking into all kinds of funding sources. There is a state program. If we > put any money on the aids to get them out of hock, they will consider the > request null and void. If i can come up with $250 then I can come up with > $5100-kind of thinking. I WISH!!!! We are appealing our first denial of > SSI so they can't help. That about sums it up here in New Jersey. > > Did Dakota start 2nd grade? Remi did and there is not enough work yet. I > need to record those words, because i am sure they will come back and haunt > her. > > I hope your NEOCATE came thru. I know what it is like to be waiting for > something to help your child and not be able to follow thru with it. Hope > you are feeling well too. > > Phyllis > > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 1999 Report Share Posted September 10, 1999 BJ qualifies for SSI health wise but no longer income wise so we don't get any money from them every month but we do get continued Medicaid coverage guaranteed despite our income. Dawn-KS, mommy to Dakota, 7 and aka BJ, 3 (eosinophilic gastroenteritis, Nissen, asthma, reflux), and mommy to Mackenzie Marie (due December 24) Re: [eosinophilic gastroenteritis] AJ > > > >From: SDidinsky@... > > > >Phyliss: > > > >Has you tried to apply for medicaid. We were able to get it for CLayton is > >NJ. If you want to know about the procedure that we used let me know. We > >used a split application. > > > >Love, > >Sharon > > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 1999 Report Share Posted September 11, 1999 Have you guys tried the network for special needs kids? They help out with special needs such as glasses, hearing aids, formulas, and so on. Our worker said there are offices in every state. if you have any problems finding one in your area let me know and I will talk to my worker and have her either get the number or help you find " other resourses " . good luck , Tina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 1999 Report Share Posted September 11, 1999 Have you guys tried the network for special needs kids? They help out with special needs such as glasses, hearing aids, formulas, and so on. Our worker said there are offices in every state. if you have any problems finding one in your area let me know and I will talk to my worker and have her either get the number or help you find " other resourses " . good luck , Tina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 1999 Report Share Posted September 11, 1999 Have you guys tried the network for special needs kids? They help out with special needs such as glasses, hearing aids, formulas, and so on. Our worker said there are offices in every state. if you have any problems finding one in your area let me know and I will talk to my worker and have her either get the number or help you find " other resourses " . good luck , Tina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 1999 Report Share Posted December 5, 1999 My exact thoughts..........it's an easy test for C.F. It's called a sweat test. Doesn't hurt. Or they could even do it by blood if it is iffy when the sweat test comes back either or. Re: [eosinophilic gastroenteritis] AJ > From: Dcjatben@... > > In a message dated 12/5/99 4:52:46 PM Pacific Standard Time, > pmzf@... writes: > > << She gets horrible episodes for about 2 hours that end by her throwing up. > All the mucous comes out and she can breathe again. >> > > has she been tested for cystic fibrosis? Could it be eppiglottis? > > Cathy > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 1999 Report Share Posted December 6, 1999 In a message dated 12/5/99 8:47:44 PM Pacific Standard Time, andrea.allred@... writes: << My exact thoughts..........it's an easy test for C.F. It's called a sweat test. Doesn't hurt. Or they could even do it by blood if it is iffy when the sweat test comes back either or. >> had a sweat test at age 5. It came back borderline pos. the repeat one came back neg. My frinds 3 yr. old is so small and thin, that they were unable to get enough sweat to test her. Cathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2000 Report Share Posted March 16, 2000 Hi guys. It has been a few days. AJ is still off food, except jello and water ice/ice pops. It has been 5 days now and she is not asking for food. It amazes me. She is in a lot of pain though-still. Her teacher said today was a bad day. I know it can take a while for your system to clear out. I just hope she holds out and doesn't want to start eating before she feels better, if she feels better. Dawn-I hope you are feeling better. Did you get to go to a movie? -good luck with Spencer. You wouldn't have scheduled this surgery if there wasn't going to be some benefit. Phyllis--mom to AJ (12/22/95) EG, GERD, Asthma, Allergies, speech delay and bilateral sensori neural hearing loss Remi (8/3/92) Spina Bifida, LATEX, avacodo, broccoli, chocolate, eggs, mushrooms, peanuts, shellfish, & tree nut allergies Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2000 Report Share Posted March 16, 2000 Thanks Phyllis for asking, my dh comes home tommorrow after being gone for 2 weeks, I keep telling him I am leaving for 2 weeks and leaving him with the kids, he knows I am kidding but I am going to take myself out to dinner and a movie tomorrow night, all by myself. It is much deserved Dawn [eosinophilic gastroenteritis] AJ > > > Hi guys. It has been a few days. AJ is still off food, except jello and > water ice/ice pops. It has been 5 days now and she is not asking for food. > It amazes me. She is in a lot of pain though-still. Her teacher said today > was a bad day. I know it can take a while for your system to clear out. I > just hope she holds out and doesn't want to start eating before she feels > better, if she feels better. > > Dawn-I hope you are feeling better. Did you get to go to a movie? > > -good luck with Spencer. You wouldn't have scheduled this surgery if > there wasn't going to be some benefit. > > > Phyllis--mom to > > AJ (12/22/95) EG, GERD, Asthma, Allergies, speech delay and bilateral > sensori neural hearing loss > Remi (8/3/92) Spina Bifida, LATEX, avacodo, broccoli, chocolate, eggs, > mushrooms, peanuts, shellfish, & tree nut allergies > > > > ------------------------------------------------------------------------ > GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 2.9% > Intro or 9.9% Fixed APR and no hidden fees. Apply NOW! > http://click.egroups.com/1/936/4/_/474479/_/953243453/ > ------------------------------------------------------------------------ > > > Quote Link to comment Share on other sites More sharing options...
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