OKAY SORRY I HAVENT POSTED ANYTHING IN MONTHS AND NOW DARYL IS ALREADY TURNING ONE THIS MONTH! SHE IS SUCH A FUNNY HAPPY LITTLE GIRL, ITS AMAZING TO THINK THAT WE WERE ONCE TOLD THAT SHE MIGHT NOT EVEN LIVE. WELL IM TELLING YA, SHE IS SO FULL OF LIFE THAT NOW WE SEE HOW SHE WAS ABLE TO PULL THROUGH.!! YOU CANT EVEN REALLY TELL ANYTHING WAS EVER WRONG WITH HER. SHE STILL HAS HER FEEDING TUBE BUT SHE HARDLY NEEDS IT REALLY, NOW THAT SHE IS GAINING SO MUCH WEIGHT. SHE MAY ONLY HAVE 2/3 OF HER GUTS BUT SHE EATS MORE THAN ANY BABY I EVER KNEW, AND SHE AINT SUFFERING A BIT!
SHE IS A LITTLE MIRACLE BABY. I BELEIVE THAT THE BODY IS JUST A 'SHELL' FOR THE SOUL, JUST A PLACE FOR A SOUL TO LIVE SO THAT OTHERS CAN RECOGNIZE YOU. AND THAT IS ALL IT IS. SOMETIMES THE BODY IS SICK, OR UNABLE TO FUNCTION PROPERLY, OR MISSING PARTS THAT MOST PEOPLE TAKE FOR GRANTED. BUT THAT IS JUST A TEMPORARY LIVING PLACE FOR YOUR SOUL, AND IF THERE IS ONE THING I HOPE DARYL'S STRANGE CONDITION CAN HELP PEOPLE REMEMBER, ITS THAT BEAUTY TRUELY DOES COME FROM WITHIN THE HEART, AND NO MATTER WHAT BODY YOU ARE GIVIN, ITS YOUR SOUL THAT YOU WILL BE REMEMBERED BY. ITS THE HEART THAT LOVES, NO MATTER WHAT 'SHELL' IT RESIDES IN. DOES THAT SOUND TOO MUCH LIKE THE END OF A JERRY SPRINGER EPISPODE? i hope not. what else can i say except cherish life, its a gift. we are so thankful to have her, and she is so loved.

WE CANT HARDLY BELIEVE THAT SHE COULDNT EAT FOR 3 MONTHS, SHE IS SUCH A GOOD EATER NOW, I MEAN REALLY GOOD, IN FACT SHE EATS EVERYTHING SHE CAN GET HER HANDS ON, AND STILL HASNT COME ACROSS A FOOD SHE DOESNT LIKE. SHE IS FINALLY GAINING WEIGHT, IN FACT SHE IS A LITTLE CHUBS NOW.

DADDY'S GIRL!!!

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YUP IM ALREADY A DODGERS FAN. I EVEN MET MANNY RAMIREZ(well almost... but he did say hi to my daddy!)

okay so we tried using the pump again last night... oh my gosh it is so rediculous. at least 5 different times it started beebing, and the display read "error" or something like that.. and we had to turn it off and fix it, restart it. it beeps so dang loud i cant beleive daryl didnt wake up. we had it wrapped up in a quilt to muffle the moter, so every time we had to fix it, we had to unwrap it and rewrap it. on the up side, i have been managing to get Daryl's tube fastened to her while she stays asleep!! im very careful, like the tooth fairy slipping her hand under a kids pillow to get a tooth and leave a quarter. hopefully we will get a new machine soon. scott and i want to just throw it out the window! i think i need some sleep

yesterday we got the feeding machine delivered to us, (ill post a picture of it as soon as we put it on the computer).. anyway a nurse from the pharmacy delivered it and showed us how to use it. Didn't seem real hard... but one thing that came up is that we are supposed to fill it with her formula, a product that supposedly only has a two-hour period of time that i can be left out before it goes bad. so i ask how the heck I'm supposed to put 8 hours of it in the bag and not have it go bad. well the answer was "oh you just have to get up every two hours and keep filling it"!! oh heck no, i thought. so i called the pregestimil company and Mead-Johnson nurse told me that i could leave it out 4 hours. so that's not too bad, i used to get up every 4 hours to pump not too long ago so I'm used to that. so anyway, first i hook up the little tube to Daryl's g-tube site on her belly before she goes to bed, and i forgot to clamp it first so stomach fluid starts spewing out of the tube everywhere!! gross, so i fix that and then after she goes to sleep we start the machine. OMG it was so loud!! it kept waking up daryl and of course we couldnt sleep. then it beeped because we didnt set the rate of delivery correctly... finally after 45 minutes we just shut it down and gave up for the night. today Scott's mom and i figured out a way to deep it quieter, we just wrap a quilt around the moter and it muffles it! looks rediculous, but we'll see tonight if it works.

just posting some cute pics. Daryl is doing okay, except that the doctor wasnt impressed with her weight gain , (or lack of!) she still only weighs 11lbs 9 oz, and for a six month old baby thats just not enough. so we are going to be hooking her up to the machine that feeds her all night long.. im dissapointed because we havent had to use her g-tube yet and now we are gonna have to. but the doctors figured this might happen, that is why the tube is there to begin with. im waiting for the pharmacy to deliver the stuff and show me how to use it. ill post again after the first couple nights and see how it goes.

This last picture is funny, thats her Christmas dress, it looks all puff and cute. Other than the holidays, there isnt much going on with Daryl. She went to the doctors to get weighed today and she only gained 5 ounces since the last time, so tommarrow the dr is going to call us and let us know if we should bring her in, or what. she is probably gonna have to get the machine at night that feeds her all night long, to help her grow more. i dont really mind if that is what they gotta do, fine, i just wish the doc would DO it already so we dont have to wonder if were gonna need it or not. she feels fine and acts fine, she is just real small still, 11 lbs and 9 oz is too little for a 6 month old baby, which she almost is. she can still wear some 0-3 month clothes! anyway hopefully we will know by this weekend if she needs the night feeding thing.