Con’s fever is up, I have not been updating much on the medical stuff because this cycle has been EXAUSTING. He has thrown up every day, coupled with the cold and me just feeling like something was brewing. Last night around 11 I got a 100.5 reading, but by the time everyone got in here the reading was more like 99. Today he just felt warm to me and to Grammy and sure enough he spiked to 102. Thought he may have an ear infection, it is red and they gave him meds but don’t really think he has one. Blood has been drawn and we are awaiting the quick results, and vitals will be done q4 tonight, hopefully some of them can be timed with diaper changes so he is not woken up 20 times. We finished “Day A” today which is etoposide and Cyclophosphamide, tomorrow is “Day B” which is the same two drugs, decision will be made on moving forward depending on his vitals throughout the night and what the bloodwork shows. Other than that he is happy and acting normal, eating is a bit off so happy we have some pounds to play with. Here is the tell take sign my “25 weeker” who is delayed a bit from both his prematurity, but more from his long stays in the hospital and location of his tumor has been in the hospital too much, he knows hiw to push his own IV and navigates all his wires, he actually walks his fastest while bringing his pole along for the ride!


In other happier news, cousin Lily who may be Connor’s favorite person on earth saw a commercial about helping kids in need and decided Connor needed help. She designed a shirt for him all by herself, and brought it down from her room to show her mom, check it out:


I have wanted to design a shirt for a while, this is actually pretty much spot on to what I would have picked for my little hero, except I love the “believe” I never would have thought of that! I wanted the shirts just because it is such a nice way to show support, if you decide to purchase one send me pictures of you wearing them or tag me in pictures, we know we have so much support, but this is such a public visible way for is to see it! Lily, we are so lucky to have you, you are such a gift and wise and compassionate well beyond your years!


One thought on “102.1

  1. I know that you didn’t need to go through the NICU or this to know what gifts you have in your friends and family up there, but it is truly remarkable to see how everyone has stepped up for Connor and your entire family!! Kind kind souls.
    I’m sorry it has been such a horrible round of treatment. You have plenty of pounds to buffer — what a thing to be able to say! I hope a round of antibiotics or just a quick day will kick that fever out. Can you change diapers during Q4 checks? You may change more often than that as you feel the diaper getting slightly wet so his skin & you are safe. Hope tonight and tomorrow brings some more ups than downs.

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