Learning sustainability for our family and taking care of kids. Becoming a chicken mom in 2020! Our oldest- Haven, 17, was diagnosed with Neuroblastoma Cancer and ROHHAD Syndrome at age 3. We continue to battle these today.
Saturday, April 16, 2011
BOX TOPS
WE NEED BOX TOPS!!!! Haven's school desperately needs a new playground!!!! Please help....
You can check this web site - HERE - for a list of products you will find the above logo on for the Box Tops....cut them out and send them our way! Please help.....she only has until April 25th to get them turned in!!!
Monday, April 11, 2011
Thank you for your donations!!!!
Thank you to all of our friends out there that donated to Johns Hopkins during the fundraiser. Haven won 4 passes to Six Flags and we couldn't have done it without you. We're looking forward to taking her during her spring break!
A note from Hopkins to all of those that joined their own mission to raise money:
Thank you for participating as an ambassador in this year’s Johns Hopkins Children’s Center Caring for Kids Campaign.
You reached out to your family, friends, coworkers, classmates, local corporations, and community organizations for donations—and on behalf of our young patients, families, and staff, we sincerely appreciate your efforts! We have raised over $5,300, and counting!
The Caring for Kids website will still continue to accept registrations and donations until we begin our 2012 campaign. Please continue to reach for your fundraising goal!
Each year we strive to raise funds that will allow us to sustain and develop programs and services for our patients and families when the need arises. Here, families in dire straits know they can count on us to care for their child no matter what. Thanks to the support of individuals like you, our wonderful doctors and medical staff are still able to keep the doors open to every child and family who walks through them, regardless of their ability to pay, while providing the world-class pediatric care for which we are renowned.
Your generosity is what makes Hopkins Children’s unique and a very special place for children to heal.
Spring is here
We've also had some crazy weather around here - which I know other parts of the country are getting hit with the same thing! The past few days have been so cold (50's or so) and very windy and then today hit 80 degrees and tomorrow is supposed to be back down to 60 degrees. Should bring around a good bout of storms! So I'm very excited about that. We had to break down tonight and turn the air on....not ready for the 100 degree days coming soon.
Haven has been doing great. She was supposed to go in to Endo today but we had something come up that she couldn't get in. I have rescheduled her appointment. I really want to get the bone age x-ray done to check her growth. She has a big test tomorrow in math so she went to bed early tonight and wants to have double the blueberries tomorrow - as she read that blueberries make you the smartest kid in class. She requires them every morning for breakfast.
She is now reading full chapter books and spent 5 hours on Saturday reading...didn't matter if we were in the car or wherever...she kept on reading. She reads everything now.....she is amazing. She got her first Diary of a Wimpy Kid book and wants to get some Babysitter Club books. Luckily Deezy likes to lay on the couch and listen to her read because she reads to Deez all the time. :)
Friday, April 1, 2011
Johns Hopkins / MIX 106.5 Radiothon
You can check out all the 2011 kids - HERE.
Thank you to every one that donated and especially our Haven readers. Total Radiothon dollars raised this year was $850,000. WAY COOL!!!!!
Just in case you don't have time to click the link above and read about the Radiothon and how much it made I thought I'd share a snipit from Hopkins web site:
With support from the Children's Miracle Network (CMN), the MIX 106.5 Radiothon has raised more than $13.1 million since 1989 for Hopkins Children’s, with a record $1.1 million raised in 2008. Hopkins Children’s is a member of CMN, an organization dedicated to helping raise funds and awareness for 170 children's hospitals throughout North America.
Your donations are much appreciated!!!
Miss Haven....doing great!
She got a cute package from her friend Shirley - which had a cute little kitten in it. As you can see above.
Haven had IVIG on Monday. We are excited to report that her counts are AWESOME!!!! She was having to go in every 6 weeks since they dropped in November. This time she had her labs done before treatment and they came back all normal. So her next treatment was pushed out until 8 weeks instead of 6 weeks. She will still need to go in every 4 weeks to have her port flushed but at least we're starting to move the treatments out.
We are currently setting up an appointment with Kennedy Krieger Institute to have her evaluated. She hasn't been there in about a year.
She is also set to go in to Endocrine on April 11 for her check up. My concern here is growth but as long as she is still growing - even if it's at 5% - they will not put her on growth hormones.
ROHHAD in Ireland
I received this story in my email today. It still shocks me that my daughter has ROHHAD. It's a horrible disease that destroys a child...
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Hi everyone. It's been a long time since I sat and wrote about our daughter's extremely rare disease diagnosis. Literally 15 years a...
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I received this story in my email today. It still shocks me that my daughter has ROHHAD. It's a horrible disease that destroys a child...