Love for Livi

WELL.....This has been quite the roller coaster. I cant even descibe how i feel about all this. Then to top it all off im getting sick! a head cold....I've got the sniffles and the sneezes. Talk about perfect timing! Right when my daughters immune system is completely gone my stupid body decides to get a cold! Im overdosing on vitamin C and trying to sleep....(impossible...) But what can ya do?
There is so much to learn, nutrition, medications to give, how to watch for any sign of infection, how to clean my house when she comes home, what to do for her port, when and why i should bring her in for emergencys, when to call 911, lumbar punctures,.....I mean the list goes on forever and is really overwhelming. But i have to do it, what choice do i have? I just think its funny when they are telling me; "dont freak out, just stick to the basics, dont check her temperature every hour, just watch for her to feel sick." Oh boy....do they have any clue who they are talking to?? I am the king the queen and the joker of freaking out, and no one is going to be able to do anything about it. If someone told you, if your child has a fever of 100 degrees or higher, rush her in to the ER as quickly as possible because she could have a life threatning infection, what would any parent do? You bet cha, there will be thermomiters in every room of my house and I will be taking her temperature every chance I get.....Sorry nurse, I'm a Johnson, get over it. I do want her to live as normally as possible through all this, but its going to be pretty stinkin hard. She cant go to the grocery store, birthday parties, the movies, the park, other kids houses, when people come over they have to wear masks, no more kids meals, all the medicication, I mean this is a total lifestyle change for her, and me. Its going to be so hard at first. But I have every reason to believe that we will be able to do it.