Posted By Posting
Jul 24, 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
Today Was A Different Day
I just don't understand it. I jinxed it! I jinxed it all!!!! WAAAAAHHHHH!!!!!! Today in therapy, Quinn was back to her pre-oxygen days. Even the therapist was a little disappointed. She had trouble walking up and down steps. she had a terrible time with motor planning. She couldn't even pick up the heavy ball that she picked up on Tuesday. I don't get it. i just don't get it. Why do you do this to me, Quinn? She was very, very loopy and floppy today when she came home and went straight to sleep without even a fight. UGH!!!!! Hopefully, because I want her to be better, hopefully it is just her maybe catching my cold. Yeah, have a cold right now. it sucks because my asthma is terrible and so it's really exacerbating it. I know it sounds terrible to wish that this is why she is acting like this today, but I wish that it was so that way there would be a reason for it and we can expect her to start doing better again.
Jul 24, 2008
Tracey, mom to Katie diagnosed with GERD at 3 week.
Sorry you jinxed yourself........I NEVER ever talk about good news but quietly praise God for it and treasure it in my heart/head. I wished that they had found something on Katie's UGI so that the problem could be fixed. Yes, surgery is scary but having a screaming uncomfortable baby is hard too and I want/wanted an answer that could be fixed and she would be better. You're not alone in wanting to explain away the problems....Big Hug!!
Jul 24, 2008
poor baby! I am sorru to hear about the set backs! That plain stinks!
Jul 24, 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 don't know, but it does sound to me like she is coming down with something...especially if she crashed like that. Maybe she will wake up tomorrow with a nice, snotty nose! Try not to get down....two steps forward, one step back. Repeat. Repeat. She is going to get there in the end.
Jul 24, 2008
hope she bounces right back!!!
Check with your
doctor first!