An update from mommy

Good morning Abby fans....it"s Kelly. I had a quick minute while Abby is playing in the playroom and so I thought I'd do a little update on this laptop that was given to me yesterday by the child life specialist. Her name is Peggy and she is great. She is always checking in to see what she can get for Abby for "fun" time. They have an awesome playroom here at CHOC and lucky for us, it is on the fifth floor, which happens to be Abby's floor. Peggy took abby to the playroom yesterday and she did some fun crafts. She painted a ceramic magnet that now resides on our little fridge in our room. She decorated plates with glitter and drew pictures....she had a great time! The docs, nurses, therapists, psychologists, child life specialists...all the way down to the cleaning crew are so kind here at CHOC. They are always making sure we are ok and comfortable.







Abby has been sleeping pretty darn good. And actually so have I. I brought a twin size blow up bed that I blow up, (actually the internal pump blows it up :o) ) and then I take it down in the morning so we have more room to move around during the day. It is surprisingly very comfy. Abby loves that mommy is sleeping right next to her on the ground. Thankfully she only takes a few minutes to fall asleep and then once she is out, I am able to turn on the TV real low or get on this laptop and she sleeps right through. Thank goodness...it is MY quiet time.







The schedule that they keep is very tight. The doctor comes in about 7:15 or so and checks her out, listens to her chest, looks in her ears, etc....then the nurse comes in around 7:30 to take her temperature and weigh her. Then they dispense her meds....(she takes an anti-seizure med day and night and they have her on a drug called Periactin. It is an appetite stimulant.) So we make sure to be dressed and ready to go before the doc gets to the room because at about 7:50 we have to head down to the basement of the hospital to the rehab clinic where Abby eats three out of her 5 meals per day, with a feeding therapist. As Ryan mentioned, each session is about an hour long. So, breakfast is at 8:00 to 9:00 with a therapist and then we have snack in her room, just her and I at 10:00. Then after snack, she goes to the playroom and mommy gets about 45 min. to herself, YEA!!!! Next is lunch, at 12 noon for an hour and if she does well they usually let her play in the rehab room where it looks like a fun gymnastics gym. They have big swings and a big "ball pool" that she loves to ride the slide into. (All things they use in occupational and or physical therapy.) Then we get back to her room about 1:15 -1:20 and I let her watch a" DORA, the explorer" or one of her dvd videos for 20 minutes and then I turn of all the lights and draw the drapes and she takes a 45 min nap or so. Then we head down to the basement again for 3:00 snack with a therapist. After that we have a big break. Dinner isn't until 6:00 and it is in our room, just her and I. So during our break, Daddy usually comes over and the 3 of us head outside, Abby rides her bike to a nice size grass area where we kick a ball, run around and just enjoy the fresh air. It's my favorite part of the day. And then after dinner, we take a bath together, get our jammies on, blow up mommy's bed, read a story, say our prayers and lights out at around 8:30 or so. And then we wake up and do it all over again.....FOR 3 WEEKS!!!!







So far, so good. Abby is definately loving all the one on one attention from mommy and everyone else here at CHOC....(she is quicly becoming a little celebrity around here!) I am sure she is going to have some serious adjusting issues when we get home and she has to share her mommy time with her two little brothers again! And I am doing pretty good too. I am missing my boys soooo much it hurts, but they are with Grandma and Grandpa having soooo much fun!!! Going to the beach or the pool everyday, getting tons of love, hugs and kisses. So that helps for sure. I am so excited for when we are outta here and all together again as a family!!!!!!!!!!!!!!!!!!!!! Can't think of anything that sounds better in this whole world!!!! AND with NO g-tube feedings???? WHAT???!!! I still can't believe it!!!! We have lived and breathed by her tube feedings for 4 years.....and it has been painful, for her and for us. So to see the light at the end of the tunnel so close is sooo exciting! So please continue prayers for our little girl that this program is successful for her. I will check back in with you all soon and update you on Abby's eating progress. There is so much more to share but playroom time is over and we have to get down stairs for her 12:00 lunch. Thanks for listening.

Love you all,

Kelly