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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
(Jedd Update) We got Permissions to.....
GO TUBE FREE!!!!!!!

Our appt. went great. Everyone agreed that Jedd has gained MORE than enough weight to stop tube feeds all together. How am I gonna feel?!?!?!?!?! NOT hooking him up at bedtime, I have done that for over 17 months!!!!!! It will certainly feel strange that's for sure...

I am still allowed to give him his meds through the tube, that will be the last thing we do. Thanks heavens, we know what a chicken I am about giving him meds orally......LOL

I have to wake him up at 7 a.m. now and give him 4oz of water. At 7:30 he gets his meds. and I start my normal feeding schedule at 8a.m.

Then I give him 4oz of water right before bedtime around 8:30p.m. Other than that his schedule stays exactly the same.

When they see us next we may take away the CIB from his whole milk and see how he does.

I called my Mom on the way home from the rehabilitation clinic and could barely talk I was crying soo......HAPPY TEARS!!!!!!!!!!!!!!!!

We are still working on textures because of course he does eat anything but stage 2 foods. But they believe that Jedd will be able to complete his tube weaning at hime without ever having to go in paitient.

That's a relief there as well, we have been thinking about fundraisers and such becasue of the cost of doing that, now we don't have to worry about it!!!!!!

So, we still have ALOT of work to do but BOY it seems like the HARD stuff is behind us!!!!!!

GOD IS GOOD ALL THE TIME!!!!!!!!!!!!! AMEN!!!!!

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
that is EXCELLENT news!!! I hope that the tube weaning goes well!!! That is so awesome that you don't have to use the tube at all for tube feeds!!!! WAY WAY AWESOME!!!! -Sarah
Jun 26, 2008
jenrackley
PAGER Volunteer Services Coordinator
Nutritionist
Melina 7/24/02 now reflux free!!
TWINS:
Ella 5/3/05 GERD, asthma, hypotonia, food intolerances, esophagitis, IBS //
Ava 5/3/05 asthma, food allergies
Pic: My girls! They are getting so big!
YAY! I am so excited for you. :)
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.
Wow Jessica, I am so happy for you and Jedd!! Like you said...a lot of work ahead of you but this is a HUGE step in the right direction. About the solids...does he only eat stage 2? How about any finger foods...I can't remember what all he eats for you. I LOVE updates like this...congrats!!!
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
I LOVE "goosebump" posts!!! You totally gave me goosebumps girl. I cannot imagine your struggle, but I can just imagine your feeling of triumph. I know Jedd has a lot of work ahead, but DANG, you must be so proud of him and yourself. Happy tears is right!!! LOL. That certainly is a routine change, but one you will come to love, I'm sure. Wooohooo!!!
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!
Yahoo! I'm sure there will be little bumps along the way, but what great news! I can't imagine how you will feel feeding him and not doing the tube. I bet part of you will be lost, lol. How exciting!
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
daniejo
Jedd only takes stage 2 yep. Any type of lump or texture too think he iwll gag and vomit. He can eat Chester's Popcorn puffs though. Not enough for it to be a meal though.

Theya re saying that one step at a time and he iwll eventually do it. He has to learn how to chew and swallow. Right now his mouth is "lazy" for lack of a better word....LOL Eating purees is jus tlike swallowing liquds it really takes NO skill at all.

One day at a time though. and we have def. worked for this one....
Jun 26, 2008
slimfast13
This is our dd, Alessandra. Dx with GER 10/07. Ran the gamut with meds and now done with them (crossed fingers). Using magnesium, probiotics and prebiotic supplements. With the exception of teething and general sassy attitude, all is well now. They really CAN grow out of it!
YIPPEE!!!!!!! (**I'd do carwheels if I had room and coordination!**)
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!
Great news Jessica!
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.... :(
I cannot tell you how happy I am for you. That is fantastic news!!!! Little Jedd is really growing up. This must be such a huge relief for you. The food/textures will come in time...he has about a 100 years to get the hang of it!
Jun 26, 2008
jmom
Josh 12 yrs colic as a baby
Jenna 6 yrs dream baby
Jessica (6/11/07) Silent reflux dx at 3 weeks
Went off meds successfully at 3 mos
Went back on Prevacid 8 mg TID 1/3/08
Amen!!!! Cristy
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.
That is fabulous! I'm so happy for you all! :)
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.
wow, what amazing news!!! i'm so happy for you and Jedd! thank goodness we all got to hear some wonderful newS!
Jun 26, 2008
refluxmama
Cassandra Lynn 10/23/06. Former 29 Weeker Preemie. Reflux since birth. Prilosec Liquid 2 mls am. and pm. Elecare formula 30 cal per ounce. Severe oral aversion/complete bottle and solids refusal! NG tube fed since birth, G-tube Placement on October 3rd 2007, very DGE and motility issues, FTT, developmentaly delayed,
Hypotonia. Recieves Speech therapy for feeding problems, Physical Therapy for muscle weakness and delayed gross motor also has Developmental teacher and soon will be attending a feeding clinic. She's on a continous 24 hour feeds. Except for when I give her a break :) She's tolerating 40-45 mls an hour with some vomitting, can not tolerate a bolus at all, not even a 2 ounce over 30 min :( one . ~Picture: My baby is a big girl now :(
WOW Jess!! This is awesome news!! Congrats on being tube free, Lord knows I am waiting for that day, but it seems soooo far away for us. Yay for Jedd!!! -Nessa
Jun 26, 2008
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.
Whoooo Hooooo! Yippee for both of you!
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
Vanessa
HUGE HUGS!!!! I pray your day comes quickly and that God will give you the grace we have seen in the time being...HUGS agian.
Check with your
doctor first!