Posted By Posting
Sep 08, 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
Trials Keep You Strong
I met with a mother the other day of a 7 month old who was so alive and active and very chunky. She was the cutest little baby ever. It got me thinking about what Quinn was like at that age. When Q was 7 months old, she couldn't do much more than roll over every once in a while. She didn't even lift her head up or clutch her arms and feet around me when I picked her up. She couldn't sit up. She puked all the time and I spent hours on end, literally paving a path in the shape of a circle in her room just to put her to sleep. She couldn't hold her own bottle (although she did every once in a while) And she didn't start blowing raspberries until after she turned 15 months old. As I sat here and held this very lively 7 month old, I realized how very far Quinn has come. This child sat up, crawled, held on to me arm when I held her on my hip. She was talkative, active and playful. She was blowing raspberries, holding her bottle and soaking up the entire world around her. It made me realize how far she has come. No lies, I thought Quinn was going to die before she turned 5. Nobody could figure out what was wrong with her and i was the only one that seemed to fight to figure it out. Today, Quinn is a healthy, happy, strong, talkative, active and playful 33 month old. She is full of life. Her appearance today is encouraging and I pray that she outgrows all that is torturing her little body. This month is a big month for us. She has follow ups with pulmonology, neurology, GI, and our second opinion with ENT. Life is great! -Sarah
Sep 08, 2008
Adriane Reese 05/16/07; seemingly healthy when born; diagnosed with MSPI, severe Reflux, Apnea, Ashtma, Epilepsy, and severe food allergies(rice, corn, milk, soy, eggs, oats, wheat, beef, chicken, squash, pumpkin, avocado, etc.);On apnea monitor, seems to be tolerating RCF w/carbohydrate mixed in; on Zyrtec, Xopenex, Prevacid
Sarah, she looks so good in the pic. I have been wondering about you guys. I hope all the appointments have positive outcomes. -Amanda
Sep 08, 2008
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!
That's right! What doesn't kill us only makes us stronger. Like mil, yesterday she thought she was dying but today she's being silly and doing lots of stuff (according to dh).
Sep 08, 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 I am so glad Quinn is doing so well now! Isn't amazing how one image can bring you back to the past so quickly?
Sep 08, 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.
Sarah, When I first got on the forum, I read lot of your past post. You and Quinn have quite an amazing story. It looks as though you have had a long hard journey and you stuck through it and took care of your little girl. I respect you and all the other moms on the forum so much for everything we have all been through. *********************************************** I am so happy your little girl is happy and healthy. The pic. is wonderful. She does look so virbrant and happy. You have come a long way and seems you are such a strong person. May your journey continue to be blessed. ************************************************* When we are in the current battle of trying to find a diagnosis and get on the way to recovery, sometimes the road seems endless. Thank you for sharing your story. It has brought hope and encouragement and a picture of the end of this journey and the beginning of a whole new world. *************************************************** They still cannot figure out what is wrong with Meggy. To make matters worse when the hospital overdosed her, they conveniently left that out of her record, so it is not even accurate. Makes me wonder what else is missing. I hope Quinn continues to do well. -Engi
Sep 08, 2008
Worry Wart mom to
27 mo. reformed "happy spitter"
34.8lbs , 37in tall(oct)
Diagnosed A/R at 6 wks
Zantac until 1yr then Prevacid
Med free since February 08
peanut & egg allergies...still
Zoo Boo Trick-or-Treating (pic).
I can't see the pic here but I am sure she is cute as ever! You guys have come a long way, congrats. Here's to living to 105 Quinn!
Check with your
doctor first!