Posted By Posting
Oct 16, 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
Quinn Qualifies!
For two more years of Inland Regional Services (Early Childhood Intervention) I didn't think it would be possible with all the progress she has been making, but she qualifies mostly due to her medical eligibility. Cerebral Palsy was the qualifying diagnosis even though that diagnosis doesn't seem to fit 100% but hey, I'll take it. I know it's so strange of me to be ecstatic about Quinn's qualification until she is five. It's just another indication of how "involved" she is, but it will help tremendously with the school district. There is supposed to be a coordinator to help me with the district to be sure that ALL of Quinn's needs are met and it will be easier than me having to do this all on my own. So, how is she doing? She is doing marvelous aside from her major temper tantrums. i just don't know what to do with this kid. Hopefully it is just a phase and hopefully the phase goes away soon. She is undermining me completely. Even her physical therapist. UGH!!! I haven't tube fed her in over a month. WOW!!! All of her feeding supplies are building up. She is loosing weight recently too. I don't know if it has something to do with how much energy she is expending with her ENORMOUS fits recently or if it has something to do with me not tube feeding her, or if all those are even linked together. But it's obvious that she is loosing and I think I might have to cut in a few tube feedings to keep her gaining. Geeze, we just want the tube out and I think soon we might be able to. -Sarah
Oct 16, 2008
Brent 2 years old,
Birthweight 12 lbs 3.3 oz!
Very severe GERD,LPR,FTT
Severe esophagitis/scarring
Paraesophageal Hiatal Hernia,
Esophageal Dysmotility,
Food impaction,Aspiration
Eosinophilic Esophagitis,Severe retching
Severe allergic colitis/malabsorption
Susp eosinophilic colitis,chronic diarrhea,
Laryngomalacia,Gas/Bloat Syndrome,
Visceral Hyperalgesia,GI Dysmotility,
Chronic infection(ear/sinus/lung)
Adenoid/tonsillar hypertrophy
Gait abnormality/bowlegs,widened growth plates
Susp Vagus Nerve Damage
Surgeries, Nissen fundo,hernia repair/
reconstruction,esophageal dilation,gtube,
ear tubes,adenoidectomy
Bronchs w/ BAL's,lung biopsy
Upcoming scope/colonoscopy
Manometry testing in Oct.
Meds: Nexium,Zantac,Baclofen, Neurontin,
NPO tubefed continuous elecare 24 hours/day
It is amazing how well she is doing:) You must be thrilled! I am glad she qualifies for 2 more years, thats great!
Oct 16, 2008
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.
OH THAT IS GREAT NEWS... well as great as it can be! That means she iwll be getting more help! Great on her wonderful updates! (minus the temper fits! hehe)
Oct 16, 2008
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.
yay! i was just thinking about you yesterday. In the "diet" section of our supermarket they have this shake, it's kind of like boost and ensure, but it has no sugar in it. it's called Glucerna and it's for diabetics. maybe Q would like it?
Oct 16, 2008
My name is being used fraudently to ill represent me. Please be cautious of any information you receive with my name. including,,, 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.

Thanks for sharing. I always love to hear the success stories. They are as important as sharing our rough spots. I am so happy for you and for Quinn.

Have a great day. I am so happy Quinn Qualified.

Oct 16, 2008
Sharon, Mom to Elyse, 17 mos (15 mos adjusted-preemie). Zantac/Elecare. History of: Respiratory Distress Syndrome with ventilation/CPAP/cannula, tpn, n/g tube, PDA, jaundice, apnea, bradycardia/tachycardia, severe anemia, blood transfusion, reflux, Sandifer's Syndrome, intestinal malrotation, hemangiomas, MSPI, feeding issues. ICU inpatient 53 days! 2 surgeries, 2 UGIs, barium enema, pH probe, endoscopy. Developmentally on target now! PIC: Yobaby Beard
COOL! Good to hear from you!
Oct 17, 2008
Melissa - Mommy to Sebastian, born 9/28/07 @ 7 lbs 7 oz and 20.75 in. At docs at 12 months: 27 pounds and 32 in! Good grief! GERD - currently on Prevacid suspension (liquid equivalent of 45 mg a day). Allergic to dairy, soy, eggs, wheat, all treenuts, peanuts, fish, shellfish, peas, sesame, bananas, barley, coconut, dust, dust mite, dog, cat, latex. Seasonal allergies. Oral Allergy Syndrome (OAS). Neocate only - no solids - until further notice (drinks and loves water, too). Loves his doggie, our rescued Treeing Walker Coonhound, Louise, even though he is allergic to her. Louise will make your doctor a homemade pie if you would like her to. PHOTO: We couldn't do a cake on Sebastian's birthday, but that didn't stop him from tossing around the contents of a big bowl of popcorn! He now tries to eat it when we play with popcorn, so no more of that game.... :(
Yay!!! Good news!!!! (PUt this together with the awesome man, and you are in good shape!!!)
Check with your
doctor first!