Life is all about leveraging small bursts of energy…
Jack and I are recovering from our 6 month round of chemo. Yes I include myself because last week was quite traumatic. Jack reacted to IVIG, at home. He had labored breathing and wheezing. So scary! And one of the home nurses who was caring for him was negligent and unprofessional, leaving me both freaked and irate. Not good. Anyhow, Jack is okay now and was able to complete his infusions. We will slow the rate next round of IVIG and be prepared. And as far as the nurse she will no longer be coming! So as this week goes Jack is physically recovering and I am mentally recovering. Due to these events I am quite busy, one way to cope. Demands of ordering new supplies and meds. Dealing with health insurance issues. Doctor discussions. Email and after email. All on top of of getting Jack back to school and keeping up with a 19 month old. These things get done in these small but productive bursts of energy. I am thankful for them.
Our MPS family has lost 2 boys with Hunter Syndrome this week. One was 9 and the other 14. Many prayers for these families burying their children. Completely heartbreaking.
So lets make it a priority in 2013 to spread awareness about Hunter Syndrome and the importance of addressing rare disease. Lets get more research going and find a cure!