Posted By Posting
Aug 03, 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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Quinn Update
I have absolutely nothing terrible to report!!!!! NOTHING AT ALL!!!!! Quinn got put on her oxygen and she has been a completely normal and healthy toddler. It's quite amazing. Even normal poops. Aside from the day before yesterday, when she had a blow out on my chair. But the reason for that was because my freakin mom, for some reason, thought that since she was doing so well, she could give Quinn a rice crispy treat. She got it from me! I should have made her come over and clean up my chair. This enzyme deficiency is NOT going to go away. It is GENETIC!!!!! Well, hopefully this time, she learned her lesson. The doctor is going to change out her g-tube button tomorrow. I don't think it's necessary at this time to go with the j-tube. She is doing so well right now, I don't want to mess everything up. The bad thing is that while I was surfing with my lil bro last week, I lost my camera. I'm so upset about that. All her weird poop pics were on it, I have some on my computer, but it's still frustrating that I lost my camera. I love that thing! The doctors still want to do surgery on her airway at the end of this month. I'm suppose to start school on the 13thish of this month too. I don't know if I want to put her through a surgery (that may have a horrible recovery) while I am trying to go to school. I'm going to have to take three days off school and that's only if she stays inpatient for one day. Well, Quinn is walking without her leg brace on. There are still days when her right leg completely collapses but it is unknown why she is doing that. Otherwise, her tone and endurance has gotten so much better. I am busy because, finally, I feel like I can go somewhere and not have to worry about diarrhea, behavioral issues and having to deal with a child who will likely get sick from being out in public. Yeah, we have more equipment to lug around, but it's been getting easier and so we have been thoroughly enjoying our summer. I hope all is well. I miss you all. -Sarah
Aug 03, 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 have been wondering how t hings have been going witht eO2 in use...WHOOHOO for good updates.
Aug 03, 2008
michelle&aurora
Aurora born March 17, 2007
3 years, 8 months old
Weighs 25.8 lbs
8 lbs 11 oz at birth.
Recovered Chronic Projectile Vomiter
Prevacid Free since September 08
Egg allergy diagnosed Jan 26/09
Has a Pectus Excavatum
Has an Epipen
Wonderful news!!! I am so happy to read this Sarah! Sorry about the rice krispie square. Grandmas can't help themselves. :)
Aug 03, 2008
molson1525
Mary & Nicholas 7-17-03 (non-refluxer)allergies, asthma on Singulair and Flovent & Aidan 1-28-07(my refluxer)Nissen Fundoplication on June 20, 2008, FTT, MSPI, DGE, ear tubes, allergies and severe GERD now currently taking just Prevacid and drinking Elecare Vanilla 1+.
Glad Quinn is doing good and acting like a normal child. It makes things so much easier doesn't it. I hope you are able to come to a decision about the surgery before school starts. Did you ever get a second opinion on it from San Diego?
Aug 03, 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.
thats amazing that the O2 helped out so much! i know about grandmas my moms is always "maybe he's thristy" i'm like mom my kid pukes more liquid=more puke. .. grandmas just try to be helpful!
Aug 03, 2008
kubicki5
So thrilled for you. You have made such headway. We are always thinking of you.
Aug 03, 2008
mdbarbagallo
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.... :(
That's great news! You should have made your mom clean the chair, though! :) No, seriously, I am glad to hear that therapy is going well and that Quinn is happy and healthy!
Aug 04, 2008
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.
Sarah - Glad to hear all is going well right now. Can I ask you two questions? I may have missed some posts, but how did you get her past the behavioral issues, diarrehea, & your fear of sickness in public places? Is she on a new diet/medicine? Also, I remember your posting that Quinn had a bit of trouble with the anesaisia (my spelling is horrible). I'm really worried about Eric going under in a couple weeks because of his asthma. Do you have any recommendations? I'm finally starting a class, too, in Sept. (human nutrition) - gee, I wonder why!!!! Take Care, Ellen
Aug 04, 2008
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
These are the kinds of updates we like to see!!! You should stop and enjoy the moment and give yourself a big pat on the back.
Aug 04, 2008
kmom
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 hope she doesn't have to have surgery again. So glad to hear that she is doing better. My class starts in 2 weeks! Ellen, I have to take Human nurtition again and I've taken it twice at 2 different universities. They won't take it at the other schools. Annoying!
Check with your
doctor first!