Posted By Posting
Dec 09, 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
Need Cyber Hugs - Rory
I haven't been posting in a while. Now that GERD is not an issue for Rory, I had decided to let the newbies find there way with each other, together, and hopefully develop the bonds that so many of us have developed over the last couple years.

BUT, I always find myself wandering back, looking for the support and advice that my PAGER family has always so faithfully provided me.

I need Cyber Hugs. I know I shouldn't complain, because so many of the little ones and their mamas are suffering through GERD and sleep deprivation and pain, and Rory is happy.......she's just so small. :(

The older she gets, the more comments I get. I get them on the bus EVERY DAY. Yesterday, we sat beside a mom and her 10 month old daughter. She asked how old Rory was and I knew it was coming. Almost 21 months I said, and then the gaping mouth and the "WOW, she's smaller than my 10 month old". It never bothered me before when she had GERD because it gave me some acknowledgement; Acknowledgement I didn't get from her doctors. But now, it makes me sad. I feel like I am failing her. I finally got her eating and off medication, and gaining.....but she is gaining it all in her tummy. Her ribs are prominent. She looks malnourished, even though I know she is not. One of my bff's e-mailed me today to announce her 1 year old weighs 28.5 lbs, my other bff's 9 month old...20lbs....she actually laughed when she came to visit because Rory wears the same size shoes as him :(

21 months old next week, 19lbs 4oz last weigh in, 30 inches tall. She is almost off the chart for height now too :( I regret dismissing her pediatrician now. At least she was being followed. GP says she will see her back at 24 months. Maybe by then she will have caught up. I could blame GERD before, but now I can't. Maybe that is why I feel so concerned now?

I just feel sad and worried....at least before the goal was to get her eating solids and gaining...now that we're there, I'm not seeing the payoff like I anticipated. Does that make sense?

Sorry to unload. My family and friends don't get how worried I am. They think I'm being overly concerned.

Photobucket - Video and Image Hosting

Dec 09, 2008
zack'smom
Zack born 09/28/07 @ 31 weeks. Dx silent reflux @ 6 mo. Now not so silent. Switched to Elecare @ 9 mo. On Prevacid 15mg 1x daily. Looking to stop the puke and gain some lbs.
Puke stopped about 24 months and he's learning to eat...very slowly.
Still on prevacid and periactin.
ohhhh *hugs* I know how frustrating it all is..I'm still dealing with GERD and Z wont eat any solids and I'm so happy you have moved past that! I'm so sorry, however that you have to deal with the comments about weight. It's like some evil competition between moms to see who's kid gains the most weight...which is exatly the opposite of what we do a few years later. I thik you need to take a deep breath...know you are not alone... I get so frustrated that I end up shaking I'm so upset sometimes when Z wont eat...or because he pukes again. I'm so stressed over every calorie that I'm a crappy wife and stressed crappy mother. look at Rory's accomplishments...what an amazing improvement!!! You shouldbe applauded for all that you have done...she's a beautiful girl. Anyway, feel sorry for yourslef...I think we all need to do it now and then...I probably do it more than I should...just know that we are all here for you and know what a great advocate you are for your gorgeous little girl!!
Dec 09, 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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for one thing, i know how you feel having to come bakc here. For Q, GERD is an echo of the past. An echo that whispers what life used to be like for us, the start of it all. But now she is doing ok.

as for her tummy. it's very bloated. it looks uncomfortable. She probably needs another GI series to make sure everything is working as it should .i just wish that there was someone out there who would help you further and take your concerns seriously. Take care. I think of you all the time. -Sarah

Dec 09, 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!
Big cyber hugs from me! I don't know if any words can make you feel better but....when I look at your profile pic and compare it to her new pic, I think her face looks fuller. She does have a little flab in the "booby" area :) And I do see what you mean about her belly. Any way, we're all impatient and worriers as moms. It's our job. Maybe it's just gonna take her a little longer than you'd like for her to "catch up". AND maybe she never will "catch up". Morgan is very tiny for her age. She's 9 and when she's in the bath, I can see her ribs and backbones. She's a stick but she's healthy. She eats less than Mags most of the time but she's healthy and her weight is in proportion to her height.

I know you're mainly looking for some support and you know you'll get it from us!! xoxo

Dec 09, 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!
And those weights from the other babies are over the other extreme! Mags is 2wks away from 2 and is 26lbs. so a 1yr old at 28.5 is pretty big! And have I ever told you that Morgan's bf was born a little over a pound and is now bigger than Morgan? Morgan was 9#6oz!!
Dec 09, 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
((((HUGS)))
I am soo sorry. Peopel jsut don't understand. We used to joke and tell people when we got looks about Jedd's size and we told them "Hey, someone's gotta be on the small end of the %tiles, right" That made them and us laugh and we all felt better.

Do you have a scale at home??? Can you weigh her in the A.M. and then again at night to see if it is gas or food backing up???? She looks really uncomfortable in the picture, poor Rorya nd poor Mommy!!!!

Dec 09, 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
Oh, how has her weight been since starting in Daycare???

((HUGS)) never feel bad about off loading here. It's what we are here for.

Dec 09, 2008
engin117
My name is being used fraudently to ill represent me. Please be cautious of any information you receive with my name. including engi.nowaira.net, engi@nowaira.net, Engi@nowaira.us, 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.
Rory's issues are real as is your fear as a mother. Regardless of GERD, or not, what u r dealing with does affect you and have an impact on your whole family. Give yourself that allowance to know that you are doing everything possible to make sure your child is in good health and that there are real concerns to address.

Has anyone addressed your concerns of her swollen belly, or the fact that she is gaining in her belly verses having the weight evenly distributed? Have her doctors seen the picture below or a similar one?

It might sound funny, but until I got this last video, it felt like Meggy's doctors were seeing a totally different child. I have shared pics and other things previously with them, but every time Meggy went to the doctor, she would sit still, happy, quiet most of the time until the doctor touched her. So, no one could understand why I said my child cried a lot.

My MIL had also said she was shocked at the video. She told me that when I describe it, it is one thing, but when she finally saw for herself just a hint of what Meggy deals with daily, it opened her eyes. I say this to say, "Follow your Mommie instincts" U r a great mommie and always have encouraging things to say.

Has Rory been evaluated by genetics before? What does a basic Metabolic panel say? R u able to get her records and read them for yourself? If so, u may very well be surprised as to what they say if your docs are anything like ours.

Keep your chin up. U r doing a great job with her. No matter what her problems r, even if not the same as our kiddos, they are real and important to address.

Dec 09, 2008
seamus mama
Seamus was diagnosed with Silent Reflux at 3 weeks. Now he is 14 months, on Prilosec and avoiding dairy,soy,egg. Still nursing. A lot !!!
I totally know how you feel. My boy is at the bottom 5th percentile for weight and height and I'm really worried. All the stuff people say can really be annoying!! You have come so far and done such a wonderful job getting her to eat, off meds, etc..Who knows..She may just hit a growth spurt and sprout right up and out! Hugs to you!
Dec 10, 2008
stickybean
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 sorry. Poor weight is a horrible thing to go through. Joslyn is just now pushing 16 lbs and she will be 8 months tomorrow. Your baby girl is beautiful. Just keep doing what you are doing and listen to your mommy brain! Hugs!!!
Dec 10, 2008
mom2adriane&morgan
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
Michelle, I don't have anything to add that the other gals haven't said. I just wanted to give you big Hugs and know that we are all here for you. -Amanda
Dec 10, 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
You ladies don't know how much your cyber hugs mean to me. I was just feeling funky yesterday, with all the recent comments. I do believe I will be looking for a new GP very soon. Someone with fresh eyes, who will send her to a new pediatrician. Thanks, Maggiemom, for saying her face has filled out. We thought it had too, but we see her every day. Jess, she has actually gained almost 2 lbs since starting daycare BUT before she got the hfmd, she was 18lbs 5 oz, so if we go by pre-illness weight, it's only been a lb. I guess I should be more patient, but it just gnaws at me constantly. She has only gained not quite 2 lbs since her 1 year well check, 2 stinking lbs in 9 months?? She won't even triple her birth weight by TWO years. But, I have to stop complaining I suppose and DO something. Yep, a new GP is in order. Thanks again ladies for letting me spew my feelings, lol.
Dec 10, 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.
My brother and his wife went through something similar with their DD. She was tiny, and they never could find any reason why. When you picked her up she felt like a soft, floppy doll, and she didn't hit 30 lbs until she almost 5 years old. ((HUGS)) I know is is so hard to feel worried about your baby and not have any answers as to what's going on, and so no certainty that it will all be okay. Sometimes all you can do is feel what you feel and just know that you are not alone, and there is nothing wrong with what you are feeling....
Dec 11, 2008
b-girl
Mom to Jasmine aka: Jazz 01/24/2007
Dx with silent reflux at 8 months
FPIES, DGE, MSPI. Recently diagnosed with EC (Eosin. colitis and now Primary immune deficiency disease.
Also mom to Nathan. born Jan.20th, 2009, MPI . so far dx with reflux and has an extremely sensitibe GI system. Also dx with primary immune deficiency disease.
Would it make you feel any better if you know that we are in the same boat??? probably not !!! I get those comments ALL the time...people don't know when to shut it!! I'll write you more on FB....BIG HUGS for now!!!
Dec 15, 2008
beth anderson
PAGER Director and original GERD Nerd
Mother of Chris (1988) and Katie (1990)
Author of The Reflux Book
Member of PAGER since 1992
Donor since 1992
Skinny vs scrawny
My daughter was scary skinny as a baby and toddler. We never changed her clothes where anybody would watch because we were a little afraid that somebody who didn't know her medical situation would call social services. She also had the tummy and those skinny arms. The doctors were very concerned that she only weighed 21 lbs at a year and about 26 lbs at 2 years but we knew she would be fine because she had TONS of energy. She was quite skinny up through high school and technically should have been in a car seat her freshman year of high school. She is now excited to have curves in all the right places and she looks great in a bikini. It is hard to find size 1 pants that are long enough for her legs (she's 5'5") but at least we no longer have to take things in and nobody whispers behind her back. Her bones are long but very thin. She wears very small rings and watches tend to fall off. How is Rory's energy?
Check with your
doctor first!