Some of my family, coworkers/friends have asked what exactly are Kalebs daily treatments on top of the enzymes he takes for digestion? So I thght to post a vid of his daily routine. When hes sick , basically he gets this done extra times during the day unless I work, then we have late nights and super early mornings before work. Hes been more cooperative since we started to lay with him and read books and just recently he got a portable dvd player so we have been switching off on books and movies. These treatments are important and a must for a healthy long lasting bright Kaleb Kenneth Radichel future. I cant believe its been 4 years since we first heard the words Cystic Fybrosis. It was scary learning what this was when he was first born and heartbreaking watching him not be able to eat, the multiple surgeries he went through, breathing from a machine, his screams in the hospital when the tubes wouldnt sit right in his mouth or nose, learning to be an RN myself and care for him at home with his gastro tube feedings not to mention the hectic schedule I had to keep on his diaper count, daily total and measurements of the oils, salt & formula intake; oh and the 15 medicines he came home with..yeah. It was like clock work every hour on the hour but thank God I was able to stay with him at Childrens hospital because basically this was my training course or maybe RN boot camp ? for when he would be able to come home. At night or when he slept, I would do my research on Cystic Fybrosis, while at the Ronald Mcdonald house. Tony would meet with the parents of other CF patients and we both attended CF seminars. I sort of frowned on the idea of sharing our story until i started hearing and reading more on CF. The family blogs and talks made me feel some kind of comfort. How could I be selfish? What comforts me would probably comfort another lost parent. So Ive turned that page and share when I can to any new CF parent wanting to learn or know more. Our familes take part in the annual CF walk raising money in hopes for a cure and its very pleasing to see that my husband is also supporting more CF events next year like the funset-a-thon and the walleye tournament. Proud to say Kaleb has been healthy. He has his ups and downs but for the most part his weight and lungs have been in check. It is so much easier now but at times of course we sometimes worry. Hes a fighter though and has all the help, love and support possible. Thank you beloved family for your ongoing support. Youve been there through our roughest times and that we could never forget.
Posted on: Fri, 07 Nov 2014 03:33:48 +0000
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