Posted By Posting
Dec 05, 2009
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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Quinn Update
Hi everyone.

I just wanted to let you all know how quinn is doing! she is turning four next month! Everything is still the same as we know it, she is still having seizures and is on meds for them, she is still on oxygen as needed. she still has generalized weakness, prominently in her right leg, but very functional. she just runs kinda funny.

we saw the GI doctor yesterday and although it's not what I really wanted, it will have to do for now. She is growing at an appropriate weight and developing at an appropriate level. She eats all meals and snacks very normally. And up until yesterday, she was still receiving two cans of formula through her tube at a continuous nighttime feeding. it's a little aggravating because i really wanted her to be overgrowing, but she isn't. although it's a relief that she isnt' undergrowing with all the calories she consumes, it's a mystery that she needs so much to grow normally. For instance, i myself have trialed her off the tube just for a week here and there. There is an obvious shift in her weight days later and she literally looses pounds aftera week trial off the tube. She also ends up getting sick with diarrhea and fevers and oxygen sat problems. it's evident that the calories are needed for her health and growth. So how do we get her off the tube?

well, this GI doctor has followed Quinn since she was an infant in the NICU. It was funny the first thing he said to us was "Quinn! you must be doing well! i haven't seen you in the hospital in some time!" and it's true. she hasn't needed the aid of the hospital in God knows how long! But he said that since she is going to be turning four years old, he would really like to see the feeding tube come out. I'm SO with him! He did specifically say that he is not in a hurry to take it out since she is in the 50th% for height and weight. She is following her growth curve. So, in other words, the extra calories are needed. So we are to try to get her to take the calories by mouth. I really don't think that's the problem at all. She EATS ALL DAY CONSTANTLY!!! He gave us this new juice to try it's called E028 Splash. It's basically a juicy flavored formula for children with extremely bad GI systems. i tried it. it tastes good, but has that very strong formula aftertaste and smell to it. Quinn doesnt like it. at all. not only will she not drink most of it, but she won't eat if she does drink some of it because it is so filling. the doctor wants me to give it a week and then call if she is drinking the recommended 2 juicy boxes a day. I can tell you right now, it's not going to work. she doesn't liek it at all! she even tells me she doesn't liek it and gets sad if i make her drink it. If it doesn't work out, we are to go back to tube feedings for another six months and then follow up.

this is sad for me :( she is doing so well. And yet again, i refer back to the fact that she is doing so well because she has so much medical intervention. WHAT??!!! WHAT IS IT???!!! ugh! what "normal" child who has no diseases has a freakin feeding tube, oxygen, and thrives on 9 different medications?

Quinn is so happy XD she is in ballet class and has her first recital next week! She is thriving in school and making so many new friends!

love you all! -Sarah

Dec 05, 2009
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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I forgot to add: Quinn is 34.0 pounds (weighed in the afternoon with all clothes on and food in her belly) and her height is 39 inches!!!
Dec 05, 2009
blueleopard
Pictured: G'mom w/3 kids. I'm mom to 1 angel Melissa (dec'd 11/92 - hypoplastic left-heart syn.)
2 healthy daughters (knock wood) Cory (16), Kim (11) & Eric (4) diagnosed with e.e. (scoped 8/08), GERD & severe food/seasonal allergies, asthma. Cried non-stop first 17 mths. of life Found out he is allergic to cow's milk, soy, eggs, and peanuts. Takes Prevacid, Neocate One Plus & Flovent.
Hi. What a cutie! Almost 4, unbelievable isn't it? Eric will be 4 in March. Still no safe foods, EE SUCKS. And, that is an understatement. Anyway, I just wanted to warn you about the Splash. I get my 10 yr. old daughter to drink it here & there, because she is small & could possibly have an eos. disorder too. She will only take it mixed with 50% fruit punch and she STILL hates it. She takes about an hour to drink 1 cup. And then it kills her appetite. I hope you have better luck with Quinn. Sorry you still don't have answers. El
Dec 05, 2009
vigilantmom
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
So glad you updated us. I have been wondering how you guys are going. There is a doc here in Des Moines who specializes in diagnosing children. (He was a pediatric oncolgist in his past life) From what I understand doctors send him all of their records on a patient and he tried to put the puzzle pieces together and figure out what no one else can. I dont think he even sees the person just takes all the medical records and then talks to the docs. I can send you his contact info if you want.
Dec 08, 2009
lorenzomama
Lorenzo b.4/25/07 1 week in NICU w/ aspirate pneumonia from a reflux episode; diagnosed GERD at 9weeks; Used Zantac for 5months. Currently using Chinese Medicine and Craniosacral Therapy. GERD, Obstructive Sleep Apnea, Sensory Processing Disorder. Ask me about breastfeeding a refluxer! Pic: day 5 in the NICU.
((HUGS)) to both of you -- 4 years old! Amazing! You are, as always, one amazing mama, and Quinn is one lucky girl to have you as her advocate and mama. So good to hear the updates -- and I hope to someday check in here and read that you have finally found an answer the mystery, or at least that the tube is gone and she is packing on the pounds...
Dec 09, 2009
mom2halleyann
Donnessa, mom to Halley born 3/10/07
Reflux (mostly) resolved at 14 months
and Addison born 8/17/09. Currently exclusively bf and on 7.5mg Prevacid
So glad to hear from you!! I was just thinking of the two of you the other day. It's hard to believe that she's 4 already. The fact that she's doing so well is a HUGE testament to your efforts as a mommy. Hope you guys have a wonderful holiday!
Check with your
doctor first!