Posted By Posting
Jun 26, 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
Thank you for the prayers....they worked!
I just copied this from my blog. :)

First off, there was NO puking on the bus. YAY!! In fact, she drank her bottle on the way home, and was passed out cold when we arrived. I know it was risky, but she wanted it.

The nurse weighed and measured her. She's still 18lbs 3 oz, so no gain in 16 days, but that's pretty normal. She did grow in height though. 29 inches tall!

The GI explained the endoscopy and these are the most important things he said:

(1) They will be looking for inflammation and taking biopsies to check for such things as allergies, celiacs, etc. He said they don't scope babies too often, but when they are Rory's age and still haven't outgrown reflux, in addition to her poor feeding, this is the best route to rule out additional problems. (2) He will come to talk to us after the procedure and give us any information on what he "sees". The biopsies will take a few weeks to report back on. (3) Any problem he finds will be treatable, and we'll deal with that if anything shows up. (4) If the scope comes back fine, we will leave her on prevacid and follow up with the feeding clinic. He said her feeding problems can be caused by two things....immediate discomfort OR past discomfort from which she has healed but now exhibits behavioural problems because of it. (5) Sometimes the scope is fine when in fact the child is still having pretty bad reflux, so we will probably have to wait for her to outgrow it. (6) He will not prescribe a different medication because he doesn't think it will make any difference. (7) Sometimes there is no answer to why a child with reflux has feeding problems, but it is extremely common. She may have feeding problems up until pre-puberty (around 8 to 10 years!!) He figures she will always be on the small side, but should take off with puberty.

So now we wait until the morning. Please say some prayers that she does well under anesthesia, and comes out without nausea or any other problems. We are so scared to put her through this, but we feel we have to.

We have to be at the hospital at 7:05am, and they will take her in at 8:35am. Will update when we get home.

Jun 26, 2008
lauren'smom
Jennifer - 1st time mom. Lauren (6/1/07) diagnosed 9/07 with GER at 3 1/2 months. Prevacid 7.5 mg in the am. Currently drinking whole milk and eating great!!
No longer aspirating! Yippee!
Picture: Why would Lauren play with the hundreds of dollars worth of toys scattered in my living room?!?! When she could play in a box! Estimated move date: Oct. 3rd!
thanks for such a thorough update! I hope you get some answers tomorrow! I know you don't want anything to be wrong with Rory, but just and understanding of what makes her the way she is. That is so sad that he thinks the feeding problems could carry all the way through pre-puberty! I am glad to hear that your bus ride went smoothly and that you don't have to ride it tomorrow! Good luck! I'll be thinking of you and Rory!
Jun 26, 2008
amber f
Thanks for the update. i have been thinking of you! I hope that everything tommorow goes off with out a hitch. I know you don't want to put her trough it but hopefully you will get some much needed answers. Good luck and update when you can!
Jun 26, 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
Photobucket
I am so glad that they explained it so well for you! Feeding problems until she's 8!!! OMG!!! that's crazy!!! Hopefully she will learn how to eat with therapy. Thanks for updating us! -Sarah
Jun 26, 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
WHOOHOO for puke free bus rides!!!!!

Everything is gonna be fine...HUGS big ones.

And I don't think he issues will go that long, really. Like my clinic told me. NO child who physically CAN eat goes to long and then they do eat. I promise....

You know why can't we all live in the same palce so we can all converge on the hosptial for each other, wouldn't that be GREAT...*sigh*
Jun 26, 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!
Yay for the bus ride! Go Rory!

I will say this....my 8yo CAN eat, but doesn't. She is very small! So even if Rory does have issues that long, she'll probably have company of other small girls. For Morgan to have been such a big baby, she's a tiny girl!

I will be thinking and praying for y'all tomorrow. Hugs!

Jun 26, 2008
daniejo
Mom (Danie) to Adam (9-4-03) & Nate (3-7-07) Nate was diagnosed with silent AR at 2 months old. He was on neocate, prevacid 30mg per day and couldn't start solids till he was almost 8 months old. He started cow's milk at 14 months and is currently off all meds!! So far so good :) PIC: Disney trip 2008. Nate didn't know Piglet was there, he didn't like the characters too much.
I was waiting to hear from you...I am so glad the trip today was puke free!! I am keeping Rory in my prayers as usual. I sooooo pray that you get the answers that you all deserve. Take care...try to get some sleep tonight...thinking of you :)
Jun 26, 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.... :(
Nothing wrong with being on the small side! I am barely 5 foot 3...and to quote Foxy Cleopatra, I am a whollllleee lot of woman!
Jun 26, 2008
sadie
Our 1 year old daughter has silent reflux, hypotonia as well as benign external hydrocephalus. We are currently weaning onto whole milk (we'll see if it works) and she is also on Prevacid 15mg per day.
I'll be thinking of you all tomorrow!
Jun 26, 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.
I'm so glad she made it without any puke!!! Sounds like the doctor is very knowledgeable and very thorough with you. cant wait to hear an update. i'll be thinking of you both.
Jun 26, 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.... :(
Thank you for posting this. My docs left me in the dark as to what to expect tomorrow, so I really appreciate this! I also swear I already typed this response, but it is nowhere to be found! Congrats on the puke-free ride, and best of luck with the tests!! ~M
Jun 27, 2008
kubicki5
Good luck tomorrow. I am excited for you to get answers. Our scope is a couple months away. I do not like TV. But I have found that the only way Katie will eat is if I sit her in front of Dora or Diego. She eats her whole plate. Otherwise she would eat nothing! Doesn't help my prior "non-TV" household with the older kids - but she eats! I think she is so distracted that she forgets that she doesn't want to eat. Plus, I say I will turn it off if she doesn't eat. I know....not the best parenting but she is eating.
Check with your
doctor first!