Posted By Posting
Oct 31, 2008
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
Halloween Rant
Okay, so our small town does downtown trick-or-treating. Everyone comes out. All the businesses in town and some of the high school organizations line the streets and pass out candy to the kids in costume. For some reason, they scheduled for last night. I was told by a chamber member that it was because the high school had a home game and they would have main street blocked off. That and the police couldn't handle the game security and traffic on top of main street activities. So, we got all dressed up yesterday after school. Adriane cried the whole time. She has had that costume on everyday since we got it because she had to wear it. She was cranky when I picked her up. She would not settle down and she would not stop crying. So every picture of her is of her crying. Yeah! I gave her some motrin, strapped her in the stroller and went on our way. Morgan's trick-or-treat bag broke as we were waiting for the line to start moving so I gave her Adriane's. She can't eat anything anyway. The thing that made me so mad was this. We would walk by and some people, mainly the older people that didn't know us, would insist that she had to have candy. they would put it in the bag that was hanging off the stroller, the big one that we dumped Morgan's other bag into so it didn't get too heavy. Anyway, I actually had two old men jump in front of the stroller and hand her a sucker. OMG! I wanted to kill them but instead just said a polit thank you and we all raced to see who took it away from her faster. Then she cried again! UGGH!!

No one understands and I can't really expect them too. I haven't taken her to church for months, which means a lot of the time Morgan and I aren't there either, because I am so afraid that one of the old ladies will give her a cracker or cookie. Or that one of the other babies might give her something. People just don't understand that. Personally, I know that this sounds crazy or mean but if I'm going to church I am going for me and I don't want to have to spend the time her in classroom babysitting other children and that is exactly what I would be doing. I don't know if that came out right or not. I want to go to get the blessing of the "word". I can't do that if I am in a room full of toddlers and that is what I would have to do to feel safe.

Sorry this is kind of long. I hope everyone has fun tonight. Tomorrow is Nov. 1st and that means our second insurance kicks in and we will get our appointments scheduled at the children's hospital. It also means that I get to go and watch my OSU Cowboys beat Iowa State! GO Pokes!

Oct 31, 2008
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
I'm so sorry it was a rough day yesterday...definitely not the kind of memories you were probably hoping for. Is there anyone that you can trust in the nursery? Someone you can explain her situation to and have them REALLY listen?
Oct 31, 2008
Liz, mom to Donnie 12/2005
Surgery for Pyloric Stenosis at 5 weeks old
GERD since 4 weeks old
Colic until 13 weeks old
Delayed Gastric Emptying
Surgery for Tubes and Adenoidectomy at 14 months old
Anemic since 9 month check
Febrile Seizures
Speech Therapy
MEDS: Zyrtec, Nasonex, Xopenex,
Vitamins with iron, and back on Prevacid as of 12/2008
I know the older people mean well, but sometimes they just don't get it. DH's grandmother (85 years old) raised 7 children includding one set of twins so I do like to take into consideration any "advice" she has, but I also remember Donnie's first Thanksgiving at her house. He was 11 months old and we were feeding him formula and baby food. She came over with a big bowl of chicken gumbo for him to eat. We told her he couldn't have that and she said well at least let him drink the broth off of it. You mean let him drink the grease. She still gives him inappropriate things to eat or play with, but we accept it and then put it away. Okay well sorry to get off on my own little rant, but I know how you feel. Hope y'all have a better day and hope your team wins! -Liz
Oct 31, 2008
ethan's mom
Mom to Ethan, born 4/23/08. Diagnosed with Reflux at about 1 month, started medicating with Zantac, which wasn't helpful for us. At about 2.5 months, we started on Prevacid, twice a day, and that is working much better.
Ethan is breastfed and has a few solids that he is enjoying very much.
I'm sorry that your Halloween experience wasn't more fun. I wish I had a solution about church.

I hope tomorrow goes as well as planned. I guess I hope that your team wins, but we are Jayhawks fans around here, so I'm not really sure how that fits into their plans for total college sports domination! lol (I really don't watch much, but my hubby does)

Oct 31, 2008
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!
I totally understand what you're saying. I've seen older women give kids things they're not supposed to have too many times. If Mags had allergies, I would have to have a long talk with her teachers.

If I were you...I would talk to your preschool director or her teacher and let her know how absolutely imperative it is that she not have certain things. I might even go as far as to put a note on her shirt till everybody gets used to the idea. I know how hard it is to be out of church. I'm one that will back-slide just after missing a few times. I need my sermons and fellowship with other Christians!


Oct 31, 2008
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!
Oh and the sucker thing...that happened to me the other day at the bank. Most of the ladies just put it in the container and don't say anything. This one blurted out "can they have suckers?" And being the mean mom that I am, I said NO! Morgan can't have it infront of Mags and Maggie can't have it in the car. Stupid people!
Oct 31, 2008
Sharon, Mom to Elyse, 17 mos (15 mos adjusted-preemie). Zantac/Elecare. History of: Respiratory Distress Syndrome with ventilation/CPAP/cannula, tpn, n/g tube, PDA, jaundice, apnea, bradycardia/tachycardia, severe anemia, blood transfusion, reflux, Sandifer's Syndrome, intestinal malrotation, hemangiomas, MSPI, feeding issues. ICU inpatient 53 days! 2 surgeries, 2 UGIs, barium enema, pH probe, endoscopy. Developmentally on target now! PIC: Yobaby Beard
Everyone means well, but I really wish people would ask mom first before offering food...and spell the word if necessary so the kid doesn't know! I never give food without asking and i work with kids...solution for church...if you can't trust anyone in the nursery, maybe you could take a babysitter to church with you? And teach the babysitter to keep a haweye on her the whole time? It would give you a break. Or, you could just tell them that you don't want her in the ER so they can't give her ANYthing...that might scare the well-meaning ladies into not giving her something. I let elyse go in the toddler class twice (we don't go to class anymore because it was too long of a structured day for her with the service as well) and I told them she could only have food with my permission....because i saw them giving out whole grapes once. I also belong to MOPS and when I sign her in I write by her name in the special info section that she can only have food okayed by mom (although I know for A, she can't have ANY). if you had a hired babysitter in there then she could make sure the other kids don't give her food either, while the teacher is probably too busy too keep her eye on A the whole time.
Oct 31, 2008
Cooper was born 12/19/07. Birth weight: 7lbs10oz. Weight as of 2/11: 8lbs9oz. 6/23: 14lbs12oz! Struggling again 12mo: 18lbs. Breast Fed exclusively, on strict elimination diet until Dec 08. MSPI as well as other food intolerances Diagnosed w/ GER at 5 days following barium swallow. Choking with apnea spells. Ftt. dx w/ Laryngomalacia following brochoscopy 1/29. Aspiration. apnea monitor until 5mo. pH probe 1/29 showed severe reflux. Sandifers Syndrome. lbrady and tackycardia. echo and EKG 2/18: Came back normal! Swallow study 2/29: some NG reflux. Unexplained seizure 4/1. Negative CF sweat test 4/4! EGD 11/19: reflux damage in esophagus. pH probe 11/19, reflux improved. Safe foods: pears, apples, peas, rice, small amounts of chicken, potatoes, and carrots.
Currently drinking Elecare vanilla 30cal/oz and breastmilk.
Meds: Nexium 10mg 2x daily. Carafate as needed, miralaxx as needed, probiotics daily
This is frustrating I got asked at the drs this week if Cooper could have a sucker. He was covered in puke and crying. Honestly even if we didn't have the food sensitivities, I wouldn't give my 10 mo old a sucker! We go to church, but luckily the only kids in the nursery really are her cousins. My sis caught Cooper with a graham cracker once but swiped it out of his mouth and told them he couldn't have anything. I know you can order allergy alert stickers and bands. Maybe that would help.
Check with your
doctor first!