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Sep 07, 2008
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:
Jedd's CB Site
I sent this out to my family on my Myspace account. I don't want to have to copy and past it too ALL my friends there so I thought I'd post it here.

I have been having some issues with some ladies at church. I think they think I am nuts due to all of Jedd's issues. This has actually been going on for some time's sad but true. I realized today that by blogging about all of Jedd's stuff 2 of my myspace friends can view it and are memebers at church.

So I have created a CB site for Jedd. I will be blogging about Jedd on there from now on. You can get e-mail notification when ever I update the site. That way you don't have to view it all the time.

You can also leave messages there. The only way I can "talk" back to you is through Myspace. So it will create a bit more work for me but I think it will be in MY best interest jsut to blog there about Jedd's medical stuff.

Here's the link....

http://www. caringbridge. org/visit/jedd


Sep 07, 2008
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:
Additional info
I ahve been hesitant to have a CB site for Jedd for some time now because I just didn't fell he was "sick enough" to have one. Ya' know, he wasn't critical...LOL Here's the FULL story on my REAL decision to make/creat one for Jedd....I'ts sad...and long

Oh that made it sound like he's sick...just read it..LOL

I use my myspace acoount for all of my blogs about Jedd medical stuff. It's easy, all my family has one and that way we are all on one page with each other. My family views it quite often. Even the ones that live here right near us.

I have a couple of Mother's at church who are my friends and I have a feeling that thye think I am totally *nuts* when it comes to Jedd medical and feeding issues. They don't say it but when I am around those 2 it's like there is a BIG Elephant in the room KWIM???

Some comments were made at church this morning becasue I overhead that he newest addition to one of them is on Zantac. I asked a simple ?? and was cut off short say that reflux is NO big DEAL and he iwll be fine. Thank you very much. He just see his PCP for those issues. I said nothing else to her.

So because of that I feel the need to create a CB site for Jedd even th ough I have been reluctant to in the past because right now I don't feel Jedd medical issues are that drastic as to need one KWIM????

I don't want to de-friend them and cause issues. I'd rather just leave it be and create a CB site. I would only give it to those in the fmaily who want it so that they would not have access to it.

I am just soo over this drame and just want others to understand but I don't think they ever will because frankly, they have/had healthy children. They won't understand until they walk a day in MY shoes. I need to keep reminding myself that.

Like I told DH this A.M. I just need to keep my mouth SHUT and not talk to anyone anymore.

Oh, and to top it off. This is totally off topic. they are now (some of the nursery workers) separating Jedd during snack times. They are taking him to another room while the other children eat...

And every time I pick him up I have to hear all the BAD stuff he did.......for crying out loud he's 22 months old, he's gonna throw stuff across the nursery if you don't keep an eye on him...!!!!

Sorry for the rant.

If you made it this long THANKS!!!!!

Sep 07, 2008
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+.
Jessica-I am sorry you are still having issues with your church. I remember when you first posted about it. It is really sad that you have to feel that way at church. But people are ignorant every where, even at church. I hope the CB page works out for you. I have quite a few friends who have them. Their children all have cancer but I think Jedd would qualify for chronically ill which is what the site was designed for. Don't feel bad for needing to give yourself some space from those other people. You are doing a great job so don't let those childish girls get you down. And if it makes you feel better my child chucked a Thomas train at an old mans head at Mass this morning.
Sep 07, 2008
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 think it is time for you to give me the addresses of these churhc ladies so I cna head out and TP them on moving night next month. I am definitely checking out the CB site! Thanks for starting this! Sending angry faces in the direction of the church ladies....grrrr.....
Sep 07, 2008
Kathryn, Pager Volunteer and mommy to Emily Mia 02/04/07. 3 years old with GERD. 30mg Prevacid and Pepcid AC. Mylanta needed for flares. Failed prilosec med switch. Tried and failed many med weans but GERD and pain are well controlled. Functional constipation. Reoccurring SBBO. Suspected IBD or autoimmune disease. Resolved issues: MSPI, CSID (acquired), Stage 2 kidney reflux, Chronic diarrhea.
Audrey Meadow 06/20/08. born 34/35 weeks. Still b/f and eats everything! ftt and chronic constipation.
are you kidding me!!!! do they not SEE the feeding tube in his belly! I mean for crying out loud they DO NOT just give those to anyone! That just pisses me off beyond belief that CHURCH members could be so juvenile. I'm with melissa give me some numbers and i'll be happy to tell them how "not that bad" reflux is!
Sep 07, 2008
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:
Thanks Mary. No the issue has NOT gone away...I just need to learn to kep my Mouth shut and not worry about t hem...that woudl lessen the problem.

Kat and Melissa, you both are too funny. I KNOW where they live.....!!!!! RMAOROF

I fel really good about this decision though. As an added bonus Jedd will get some privacy to all hsi issues. Since my mysapce account in public. I like to keep it that way so that people can see his picture from here or P2P if they want to see what a NG or a G tube looks like.

Thanks again. Now if their house gets rolled in the next week or so I'll know who to thank....:-)

Sep 07, 2008
Tracey, mom to Katie. Diagnosed with reflux at 3 weeks and put on Zantac. At 8 months old she was removed from Zantac as it was giving her migraines, currently on Prevacid. Switched to Elecare since she is not gaining weight; trialing solids after being off for a month. Geneticist said reason she isn't gaining weight is she is stubborn. Upcoming appts.: Neurologist for developmental delay and EGD scheduled for September. She is one funny baby!
Ugggghhhh........I had one woman tell me to switch to Similac AR since her friends baby did well on it. I said Katie pukes up rice in even small amounts so I can't imagine a whole bottle. She shrugged and said it was worth a try. Fine. Try it on your kid who is gaining weight and not screaming all day. Oh wait. Your kid is five and healthy so I guess you don't know do you??!! Wow, that felt good! Sorry to yell at that lady on your post! LOL! I'll have to go see Jedd pictures! Is he still playing in traffic happily? :)
Sep 08, 2008
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.
Sounds like my former neighbor, who thankfully moved a few weeks ago. She, too, was first and foremost a "woman of God." However, she actually told my hubby that I developed psychological problems after Eric was born. She couldn't understand why I was so stressed - maybe because he looks fine. She told me to read passages in the bible when I told her (about a year ago) that I wasn't sleeping good because I was so worried that something was radically wrong with my son. She gave me a hard time because my mother has been helping me so much since his birth. She actually indicated that I was abusing my mom in some way. She even called the cops on me when I left a message on her home phone telling her to shut her big mouth & stop trashing me! I never had any problems in the past with any one like this. Shouldn't a good Christian offer support in times like this??? It's nuts. Ellen
Sep 08, 2008
Brent 2 years old,
Birthweight 12 lbs 3.3 oz!
Very severe GERD,LPR,FTT
Severe esophagitis/scarring
Paraesophageal Hiatal Hernia,
Esophageal Dysmotility,
Food impaction,Aspiration
Eosinophilic Esophagitis,Severe retching
Severe allergic colitis/malabsorption
Susp eosinophilic colitis,chronic diarrhea,
Laryngomalacia,Gas/Bloat Syndrome,
Visceral Hyperalgesia,GI Dysmotility,
Chronic infection(ear/sinus/lung)
Adenoid/tonsillar hypertrophy
Gait abnormality/bowlegs,widened growth plates
Susp Vagus Nerve Damage
Surgeries, Nissen fundo,hernia repair/
reconstruction,esophageal dilation,gtube,
ear tubes,adenoidectomy
Bronchs w/ BAL's,lung biopsy
Upcoming scope/colonoscopy
Manometry testing in Oct.
Meds: Nexium,Zantac,Baclofen, Neurontin,
NPO tubefed continuous elecare 24 hours/day
Many hugs, Jessica. I havent had any responses like this from church or family,peoplethat know whats really going on but at my moms work, all the ladies seem to have comments that are absolutely absurd. They dont even have a clue as to the degree of health problems he has.No one denies he is sick, but says that he'll grow out of it,doctors are using him as a guinea pig, and they will give the stupidest reasons that this is causing that, blah, blah.. They called the doctors quacks after I had to take Lauren in for the VCUG to check her kidneys for reflux. They said the docors were quacks because kidneys cant reflux.People can just say the dumbest things, and I get sooooo mad!!!
Check with your
doctor first!