Posted By Posting
Sep 08, 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
Tough weekend
A was not happy with me on Friday. She wanted to eat food. She was throwing huge fits. I was trying to wait until she went to bed to pull out the ingredients for dinner but that would mean eating after 8. She usually goes to bed by 6:30 or 7. She just kept banging her head on the floor. That is her new thing. Well not new, she was doing that 5 months ago but she has perfected it and decided to do it all the time! Then I guess she is calling the babysitter Mama. When the babysitter comes to my school to get her kids she says my name. Not Mommy but Manda. That is what she was calling me. I was crushed! I wish I had the money and the drive to stay home with her. I think I could stay home if the means were there but I think I would become more depressed and stressed than I already am.

So, she is now almost 16 months old and on formula only. She is wanting to eat now. Not all the time but more than she was initially. We go to the allergist this week, Wednesday. I am also taking Morgan and they are both going to the dentist. It should be a fun-filled day at the doctor's office. -Amanda

Sep 08, 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!
wow! fun filled is right, lol. Staying home does get depressing if it's all the time. Could you cut some hours out maybe? I love being home part-time, but not all the time. It's just not good for my spirit. Of course, it's not good for the pocket book either.
Sep 08, 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
That is so hard when they have to be NPO and actually have an urge to eat. I'm so sorry that you are having to deal with it. She is really just testing her boundaries. Q cannot eat any sugar or starch and so we always have to tell her that she can't have something and it's heartbreaking because she gives you this "I know but I'm sad about it" look. Can she eat ANYTHING at all? Maybe a popsicle that is within her diet so that way she can just have a taste of something. I make Q blended fruit popsicles and she eats them. Normally it's enough for her to be happy. -Sarah
Check with your
doctor first!