Posted By Posting
Oct 19, 2008
baby quinn's mommy
Mom to a 3 year old baby girl with severe reflux: g-tube, nissen fundoplication. dx: RAD, failure to thrive, DGE, epilepsy, sleep apnea, paraesohphogeal hernia, high lactic acid there's more "unknown disease"... Hospitalized 12 times, PT graduate! ST graduate! OT graduate! Current Meds: singulair, zopeonex, pulmicort, reglan, Keppra, Trileptal, vitamin B6, Veramyst. Current weight: 34 lb. Current height: 39". g-tube dependent, oxygen 1-2LpM all day and night PIC: Ms. Quinn
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The Unfortunate Necessity
It was a gloomy day for me. When the realization of what I was hoping to pass us snuck back up and became known of its very essence. The reality of what was almost long gone is now upon us and it can be ignored no longer. I could barely bare to listen to the verbal observations from my family as they commented on her frailty, her weight and her health. I had been contemplating in my mind for a little more than a week the certainty of this unwelcome existence, never to leave our home. and now I know my obligation to my dear daughter. Tonight, as I ponder the near-freedom she had of that darn gastrostomy tube, I will be hooking her up to an all night feeding to try and put on some of the weight she has lost during our trial. I will curse it and I will praise it for enslaving my daughter and saving her life as well for we all know that without it, the possibility of death would be much closer. In another six months, we might try to break her free of the chains of the g-tube, but for now, this is her fate. -Sarah
Oct 19, 2008
jedd'smommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
I am soo sorry Sarah...:-(

I am soo fearful of that as well. But like you too, I am glad that it is there to help in time of need.

It's a bitter-sweet thing. *sigh*

Praying that the next tube free trial will go better. *HUGS*

Oct 19, 2008
maggiemom
Maggie is now 3 years old and reflux free (knock on wood). I still check in some to see how everybody is doing :) Hugs to all!
Hugs! Kisses to Q!
Oct 19, 2008
engin117
My name is being used fraudently to ill represent me. Please be cautious of any information you receive with my name. including engi.nowaira.net, engi@nowaira.net, Engi@nowaira.us, anything from anyone claiming to be Engi Nowaira online. Otherwise, I will be representing myself in person so that everyone will have opportunity to identify me in person.
My previous drivers license was also stolen. The new one has extra security features on it.
Sarah,

U r one strong woman. I am sorry that you must use the g-tube again, but very happy that it is in place in this time of need. Wishing u well and your little Quinn.

Have a good evening.

Oct 20, 2008
emibug
Kathryn, Pager Volunteer and mommy to Emily Mia 02/04/07. 3 years old with GERD. 30mg Prevacid and Pepcid AC. Mylanta needed for flares. Failed prilosec med switch. Tried and failed many med weans but GERD and pain are well controlled. Functional constipation. Reoccurring SBBO. Suspected IBD or autoimmune disease. Resolved issues: MSPI, CSID (acquired), Stage 2 kidney reflux, Chronic diarrhea.
Audrey Meadow 06/20/08. born 34/35 weeks. Still b/f and eats everything! ftt and chronic constipation.
:( sorry for Q and you. Even though we do not get to talk as much as we used to, please always remember you are in my thoughts. Always know though, if you need to call any time *hugs*
Oct 20, 2008
kubicki5
Julie - I have three children. My youngest Katie is my refluxer. My first Ben was very colicy and is ADHD. My middle Jakob is pretty easy going. Katie had it bad as a baby no sleep for two years. She was on Nutramagin, Prevacid and Zantac. Thought we were through it but after age three it came back big time. After her scope she was put on Prevacid 45mg a day and mylanta as needed. Scope was in Sept. Showed damage in stomach and espophogus. It took about 7 months of medication and Reflux diet for her to start feeling better.
I am sorry that the trial did not go well for you. You are so strong for your daughter.

I pray the next trial will go better.

Oct 20, 2008
amber f
Sarah~ Again you have written it so perfect. You are a writer but I'm sorry that the words mean the wean didn't go well. I can't even begin to imagine how you feel. I'm so sorry. Hopefully the next one will go better. (((HUGS)))
Oct 20, 2008
stickybean
I am Jacky, mommy to Joslyn Olivia (April 2008) and Katelyn Isabel (November 2009).
Joslyn was dx'ed with Silent Reflux with breath apnea at 5 days old. VERY SCARY!
Katelyn is a spitter reflux baby. Started at 3 days old as well. (Both were/are breast fed.. symptoms came on when my milk came in).
Joslyn has been reflux free since she was 12 months (suffered poor weight gain for a few months) and Katelyn is now on Zantac... waiting to see if it works.
how horrible. I am sorry you are having to go through this again. Us mommies can be so strong for our lo... but we still are dying on the inside. Much hugs and prayers!
Oct 20, 2008
mom2coy
Coyle Eagan. One Year Old. Doing well on Cow's Milk flavored with juice :) Drinking two bottles of Go&Grow daily. Eating solids better but still have rough days. No More Silent Reflux-that I can hear anyway.. but puking again. Zantac 2ML 2X daily.
:( Sorry to hear the wean did not go well. always thinking of you and quinn. hopefully next time it will go much better. hugs to you both.
Check with your
doctor first!