|Posted by Hope 4 Delaney on March 22, 2019 at 4:55 PM||comments (0)|
The BEST is yet to come! This is something that we have been praying over for years.....since our little Bean was born really. A CURE! Yes....we are close! SO SO CLOSE!!! THe advancements in medicine are tremendous! We are hopeful that a cure for this awful disease is around the corner. In the mean time, we LIVE! We chase sunshine. We laugh. We love. We take each day as it comes. It's the easiest way to approach each day when the effects of this disease change daily for our ...Read Full Post »
|Posted by Hope 4 Delaney on June 21, 2016 at 12:40 AM||comments (0)|
It has been a really rough couple years for us. I have struggled with numerous surgeries and proceudres on my brain and neck. Ever since I was initially diagnosed, things for the CHUG have pretty much, taken a back seat. Fortunately, Bean has remained really healthy through it all!! Her lung function is the best it has ever been and she has continued to fight this battle without any major setbacks.
Our goal is the same at it has been from the start...Read Full Post »
|Posted by Hope 4 Delaney on September 18, 2013 at 4:20 PM||comments (1)|
Well...... She loves school! LOVES IT!!! But come last Friday the cough and congestion came on. We knew it was a cold and nothing really alarming. Her fever was low and her respirations were good. So a trip to the pediatrician was scheduled for first thing Friday morning.
Antibiotics and additional treatments later, it...Read Full Post »
|Posted by Hope 4 Delaney on September 11, 2013 at 10:25 PM||comments (0)|
So many of you know me by now......im emotional. Especially when it comes to my girls. Delaney tends to draw different emotion from me however considering what we have been thru, continue to go thru and what is yet to come.
The day finally came.....KINDERGARTEN. Now, Bean has been watching her big sister Riley head off to catholic school for the last 4 years. You would of thought she would be okay with the whole uniform idea.......
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|Posted by Hope 4 Delaney on June 12, 2013 at 7:55 PM||comments (0)|
So as many of you may know, there has been a big deal made about Sarah M and her fight to be placed on the adult transplant list. Since she was only 10 years old, she was not elegible for "adult lungs". Had she been 12, she would be. So I am so thrilled to post that Sarah's family fought so hard for her and a judge overturned the standing eligibility for adult lungs. Granting Sarah a small window to recieve a donor, Sarah got her lungs TODAY!!! 2 day shy of her parents challenging the intit...Read Full Post »
|Posted by Hope 4 Delaney on February 13, 2013 at 10:00 AM||comments (0)|
I really have to keep up on this blog but these little women have me seriously burnt to the core! There has been so much happening since the last update I will try and get to the main points while keeping it light (of coarse). Here goes.......
So we enjoyed summer!! We had an awesome family vacation at the end of August with our Bma and Bpa! It was a week filled with unbelieveable memories that we will cherish forever!! Tropical sun kicks Jersey ...Read Full Post »
|Posted by hope4delaney on July 6, 2012 at 8:20 AM||comments (0)|
I apologize for not keeping everyone updated. Things in the house have been hectic here with the start of summer. Riley finished second grade and is thrilled to be moving onto third grade. She is swimming like a fish and plans on attending a soccer camp
this summer. When Bean and R...Read Full Post »
|Posted by hope4delaney on February 4, 2011 at 6:46 PM||comments (0)|
Well I'm sure our winter has been just as stressful as everyone’s due to the weather. But for those of you with little ones, they are having the best time of their lives with all this white stuff. Laney had a recent appointment for a "regular" checkup with Dr. Sam at CHOP and we couldn't be more pleased with the results. Laney is still within the 50% for height and weight, which is the most they can ask for her with regards to growth. And as usual Laney puts on her show for everyone who...Read Full Post »
|Posted by hope4delaney on May 23, 2010 at 4:18 PM||comments (0)|
Well I might as well tell this story since according to Mommy, "it happened on my watch" last Sunday.
We were swimming at my parents when it was time for Laney to come out and get dressed in her jammies to go home. Jil stripped her down when taking her out of the hot tub and i wrapped her up in a towel since I knew it was going to be cold in my parents’ house.
Once we walked in the back door I placed Laney down on the hardwood floor so i could grab ...Read Full Post »
|Posted by hope4delaney on May 23, 2010 at 10:05 AM||comments (0)|
Hey All -
Just a quick update on our recent adventure to the Philadelphia Zoo for the Great Strides walk for CF. Our AWESOME group of supporters consisting of friends and family enjoyed a day of laughter and a little rain for a great cause. We explored, watched and learned all about the various animals that the zoo has to offer.
The little ones were so fun to watch as they were able to get an extra close look at the polar bear swimming, a peac...Read Full Post »