Posted By Posting
Jul 19, 2009
vigilantmom
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
Sarah, How is Quinn doing??
Jul 21, 2009
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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Hey! thanks for asking about us. it's been crazy lately. Quinn is doing well! things are still consistently the same, but all in all, she is growing like a weed and talking up a storm! She is such a sweet little 3 year old! Quinn had her cardiac monitor on for a whole month. We go in to see the cardiologist next week i do believe t ofollow up on that. She also had her CT scan of her chest and she did so well!!!! she did not even need to be sedated, which is excellent because she doesn't always do well with sedation. Unfortunately, she is still on her g-tube feedings at night. with them, she gains consistent weight and does not get so sick, without on the other hand, she looses weight and seems to catch every bug that goes around. SHE START PRESCHOOL IN A COUPLE WEEKS!!! OMG! my baby is going to go to preschool. (hopefully anyway) i have beenrunning around the bushes trying to get her in without it being an issue. she has caseworker helping me out with that as well. The thing is that she needs oxygen (not always during the day but sometimes) and she needs to be monitored for cardiac symptoms and then she has a g-tube. *sigh*... i'm actually really anxious to see how normal she is as a child. I know she takes forever to eat a meal (like at an hour at the table, i start taking her food away) In preschool, she is only alotted 30 minutes to eat so i dunno how that is gonna roll over. she will be eating 2 meals with them. she seems to require oxygen if she is too active and i know she will be in preschool. and the other kids scare me with their curiosity... but, i'm pretty confident that she will be well taken care of. :) she makes friends very easily. We also have a sleep study coming up next week. We are off this morning to go and get her blood drawn for MITO and a few other things. ugh! it's a 3 - 4 hour drive to San Diego just for blood :(

so... all in all, things are going very well. it's been a long time out of the hospital and that makes me very happy. Quinn is a very happy little girl too.

how is everyone doing? -Sarah

Jul 21, 2009
vigilantmom
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
You and Quinn are amazing women!! Wow is all I can say. I am so happy to hear that she is starting preschool. I hope she has an amazing expirience. I have a feeling this is going to be a big turning point for both of you and she will just astound you with how well she adjusts. Best of luck to you tomorrow. Safe travels!!
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