Skip to main content

Posts

Showing posts from February, 2018

What is Rare Disease?

Today is Rare Disease Day, where all of the orphan diseases come together to raise awareness for Rare Disease.  While these individual diseases are quite uncommon, one in ten diseases is actually considered rare!  Abby's is one of the rarest, with Cerebrocostomandibular Syndrome only affecting approximately 10 people in the world! But what is Rare Disease for us? Rare disease is a toy zebra hiding among feeding bags, syringes, and cans of Pediasure. It means fighting with insurance to get essential services deemed medically necessary.  Being rare means having to become the expert on your daughter's condition, because no one else is. It is feeding pumps, ventilators, pulse oximeters, and oxygen tanks crowding a little girl's room. Rare disease means frequent phone calls to doctors, nurses, case managers, and supply companies. It is scars that tell the story of battles won. Having a rare disease means isolation and loneliness because of the threat of germs.

Sunshine!

We enjoyed some sunshine yesterday with some unseasonably warm temperatures.  It took a little convincing to get Abby outside for some real vitamin D (we have actually started giving her a supplement because she is outside so infrequently and her blood work showed her body wasn’t making it!).  Once she got out there, she loved it! Since the tree house hadn’t been used in a while, I spent some time sweeping it out and cleaning it up.  I let out a little scream when I discovered a DEAD SQUIRREL behind the door!  Gross!  I was able to remove it with sticks without actually touching it, and then I lysoled the area really well.  Abby was very sad he died. My guess is that he got in there somehow and couldn’t get out.  Poor little guy. Today is even warmer, and we are all looking forward to playing outside again after school.  We may even eat dinner on the deck!  I’m going to savor these warm days while I can!

Germ-Free Blessing!!

My friend Katie is an amazing couponer and she gifted us 30 beautiful containers of Lysol wipes!  So much germ-free goodness!  We are so thankful for this blessing and will be sharing some with our friends at RMH when we take soda tabs in a few weeks!