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2013, has sucked I mean it’s been the worst year of my life, of our life! 127 days in the hospital. I was in the hospital the first day of 7th grade for Leksi and 5th for Johnny, I missed picture day for the 2nd year in a row. It has been hard on our whole family. Not to mention the constant roller coaster ride our kids are on with Bo’s health! They worry about him all day long! Bo is so very lucky to have these 2 in his corner! It has been a very rough year, that’s why I’m so excited to see it go! Bo has literally been in lock down, no school, no therapy, no store, no target nothing! That can be challenging also if we need stuff! My poor husband has worked so hard for our family, he has to work to,provide for us and I know at times he wants so badly to be at the hospital to help, to support me and Bo but sometimes it just can’t happen! We love him so much for his hard work! We’re lucky he’s our Babe!:) 2013 has had 16 sedation procedures, 2 chest tubes, 6 bone marrow biopsies, liver biopsy, 2 lung biopsies, removed an infected port, (which is is second port)
IJ line, 3 mri’s, 5 ct scans with contrast, 19 chest x rays, 17 abdominal x rays, both of his little knees had to be drained, 10 spinal taps, over 20 seizures, 8 rounds of IVIG, 15 iron infusions, 19 blood transfusion, 3 rounds of platelets, realization he is allergic to benzodiazepine and it makes him bat shit crazy, a trip to Harvard, and soon we will travel to NIH, he has been on 6 antibiotics for 6 months, and not sure how long he will have to stay on them, the entire month of June and most of July in the hospital. Which meant our other kids summer sucked! It has been a roller coaster of emotions we have an amazing support system were so blessed to have the family and friends we do!
2014 will have its challenges I’m sure , starting with some changes we have to make to our house, boo to that but I will write about that later! All I know is I’m so glad this year is coming to an end! We’re starting 2014 with our DREAM FACTORY TRIP to Disney!! In early February I pray all goes according to plan and we won’t have to reschedule! We have already had to do that once! We will also be traveling to NIH to see a specialist who’s who would revolves round a kid like our! We sent all of his medical information and boy was it a lot! 10 CD’s of just images. I have no idea what 2014 will bring, but I hope and I pray we get some much needed answers. Thank you everyone for your support, we know if could be so much worse, I see it with many families we have come to adore from the hospital. I can’t wait to see what 2014 brings for all of our kids, starting with an amazing trip to Disney!! We will tackle all of the stuff as it comes , we will live one day at a time and be grateful for all of the support! I have to remember and keep my head up and know how much support we have! Thanks everyone!



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