I thought I go and mention the Kohl's House today :) As you all know we stayed at the Kohl's House in Chicago for 19 days. It is originally set up for Transplant patients and their families but they have taken in many families that have dealt with other diseases as well. It really was a heaven send place for us to take Alexander on rotating nights and not having to worry were we would be staying or how much it would cost. So I know that some of my lovely friends already like to shop at the Kohl's Department Stores but now you may know that the money you spend at the store and especially on the items they sell on your way out (stuffed animals and books) really do go towards a wonderful cause and it really works!
Cure JM Foundation Today is WORLD RARE DISEASE DAY! Help spread the word about Juvenile Dermatomyositis (JM) and other rare childhood diseases:
"In the United States, a disease is considered rare if it affects fewer than 200,000 Americans. According to statistics from the National Institute of Health (NIH), there are thought to be nearly7,000 life-threatening and heavily debilitating conditions affecting nearly 30 million Americans (1 in 10 people or 10% of the population). Despite the infrequency of each rare disease, the total number of rare disease patients in the United States is equivalent to the total populations of New York and New Jersey combined.
Some alarming statistics that are currently available include: More than half of the 30 million patients in the United States affected with rare disease are children.
Approximately 15 million Americans have rare diseases for which there still is no approved treatments and no research in progress. Approximately 80% of rare diseases are attributed to genetic defects, many which are untreatable and life-threatening.
In the 25 years since the Orphan Drug Act of 1983 was signed into federal law, the FDA has only approved approximately 350 treatments for all rare diseases combined."
Connor's day today was almost as busy as yesterday. He did not have speech therapy today but he had OT and PT. Someone also must have heard me when it came to my request for music because today there was a little concert for the kids in the Atrium downstairs. Connor loved it and even got a CD out of it plus 4 Guitar Picks.
So and if all goes well we are looking at 12 more days here at the Hospital and 'only' 5 more days for my Mom and Dad to arrive......
Tomorrow Ron and I will switch again and I can not wait to sleep in our bed again because the one think that keeps my brain only working part time is lack of sleep and lack of good nutrition, not to mention where does exercising fit in?
So take my advice and try to stay out of hospitals .. they are not healthy for you - ha ha
Hugs,
R A C A
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