I had a neighbor come by the other day who I haven’t seen much since Hannah was diagnosed. She had been meaning to come by, but she just hadn’t had the chance. She was asking me how Hannah was doing and how we are doing with everything. I think I inadvertently downplayed the seriousness of […]
[Continue reading...]Pacifier, Pacifier, Where Did You Go?
4 Feb by
We turned Hannah into a “paci baby.” When she was born, she really wasn’t into it at all. It wasn’t until she was getting her blood drawn twice a day or more that we started pushing it to help her during those procedures. It really came in handy once we started doing more invasive procedures […]
[Continue reading...]Special Kids: Elizabeth
3 Feb by
Elizabeth born on September 29, 2003 and diagnosed with Spinal Muscular Atrophy (SMA) Type 1 when she was 8 months old. Her family lives in Pontiac, Illinois. She is a smart, beautiful child a very special child. She participated in a clinical trial at Stanford under the direction of Dr. Ching Wang . She an inspiration to […]
[Continue reading...]World Rare Disease Day – February 28th
3 Feb by
World Rare Disease Day is being held Feb. 28, 2009. Join the fight to raise awareness and educate people on genes and how they impact health! Millions of people worldwide are impacted by rare diseases of different types — together they make rare disease not really rare. Please share this video on your blogs, among […]
[Continue reading...]Hannah and The Wiggles
2 Feb by
Hannah is sitting here laughing hysterically at The Wiggles. She doesn’t get into any other kids program, but whatever it is about The Wiggles, she just gets glued to the TV! Amazing, all three of my kids have been Wiggles addicts. We’ve even seen them in concert twice (ironically, once was with Sam Moran as […]
[Continue reading...]Cancelling two appointments
2 Feb by
We had two appointments scheduled for today. One was with Jewish Family Services to discuss what they have available for Hannah and our family, and the other one was with Dr. K., the hematologist/oncologist that Dr. G., the genetics doc, wanted us to meet with to get us familiar with the possibility of a bone […]
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