Posted by hope4delaney on February 26, 2010 at 5:11 PM
We hope you are all helathy and enjoying life as we try to do eveyday. We are really sick of the snow right now...major cabin fever in this house.
We had a very sucessful visit with our CHOP Team on February 2nd. As usual, ALL of Bean's docs found time in their busy schedules to stop in and say hi to Laney and chit chat with Bernie and I. What a wonderful group. Really, aside from caring for Bean, they care for us too.
So Delaney was given a "test run" with a chest PT machine that enables us to free up mom and dad wrestling matches while we do chest PT manually. SO she puts on the vest, tubes attached and the air fills the vest. Then the shaking starts....the machine serves the same purpose as chest PT, to help break up the mucus in her lungs that she otherwise couldnt get out herself.
Bean was okay with it, her docs were okay with it......so we figured, we'll give it a shot. Docs were thrilled with her progress. She continues to maintain a very good growth curve and is very intelligent. They were amazed that she spoke so well, knew her ABC's and could take her meds by hand (CREON capsules and meds by syringe)
She is VERY stubborn but independant. Tell her NO and not to do something and its like you just granted her permission to do what she's not suppose to do......i hope that made sense. We came home with a great report, and the okay for visits every two months!!! THRILLING!!! Thats huge especially with all of the germs and stuff that linger this time of month. KNOCK WOOD!!!! Bean has been doing very well.
She wants to do EVERYTHING herself; EVERYTHING that her big sister does too!! Including, dressing herself , bathing, going on the potty, eating, talking to her BPA and BMA on the phone (or anyone that will listen to her ) and even put movies in the DVD player. She has no problem telling you what she wants and when she wants it. Shocker......that's the jil in her
She really loves all foods but we experience the occasional "Uck" with stuff. Her favorites this week are Fruit Loops (or as she calls them Loopy Loops), fruit (strawberries, grapes and blueberries), peanut butter and jelly sandwiches and "new-new's" which is pretty much chicken noodle soup with the broth drained out and of coarse Chef Boy R Dee ravioli's (or as she calls them OH Li OH Li OH's). She loves to play with her kitchen, ALL books and her My Little Pony playsets. She also has a talking purple puppy made by Leapster called Violet that she just adores. Its so cute to sit and listen to her having a conversation with this purple puppy.
The second annual event to raise funding for the CF Center at CHOP was another huge night, but not without some major issues. Aside from the Nor'easter that settled into our area dumping nearly two feet of snow, I (Bean's Mommy) was taken to Cooper Trauma Center after becoming violently ill on the 3rd of February. I was eventually diagnosed with a CHIARI MALFORMATION which is a condition where the cerebral tonsils and basen(cerebelum) of your brain outgrown your skull. It has no place to go but down. Mine fell below the base of my skull and were putting pressure on my spinal cord and brain stem. (Which would completely explain a variety of symptoms I had been experiencing since May of 2009)
I remained in Cooper Hospital until brain surgery was performed on February 11th. It was a very long stay away from my girls. I had a very emotional time with it as im sure you all can imagine. I remained in intensive care for about two full days and then remained on the neurological floor until I was discharged on February 17th. SO, i missed the event, and was devastated. BUT - with tremendous support and the hard work of my fantastic sisters, Amy,Ryann and Jodie, they raised over $10,000 in just one night!!! AMAZING!!!
My recovery is coming along slowly and there are still things im not allowed to do. (drive, pick up my kids, exercise (i can walk), a few others that escape me and DRINK WINE!!!) i soo could use some wine, but at the moment the thought makes me sick. Today wasnt a good day. Yesterday was a good one. Its just going to be a one day at a time thing, i guess. I wont get into details of the procedure but just say that i am healing and will hope to return to work within 8 weeks.
We are getting by one day at a time, but, it is extremely difficult from being very active one day to doing nothing and letting my brain recover the next. Granted the rest is nice, and healing my head makes me a better mother, but its really hard to do.
Hoping tomorrow is better than today. Thank you to our sponsors, family and friends for a sucessful event for an amazing organization.
All the Best,