I haven’t done a good Kendall update here in a while.
Things overall have been fabulous. As fabulous as things get in our world I guess! Stable. Maybe that’s a better word. Very stable. She’s pulled a few kendallisms over the summer, but we were relatively prepared for them and were able to handle them with what is in our home arsenal.
She started kindergarten in august. Why our schools start in the middle of frigging summer I do not understand. But anyways – she made it!
Except for one small problem…
well two actually.
the first issue, that some of you who saw my facebook posts may remember, is that we didn’t have the “official” health form completed for Kendall. Now to get into the absolute redonkulousness of this issue will probably just raise my blood pressure – but suffice it to say that i was NOT happy when i received a phone call telling me they were going to “forcibly remove kendall from educational services and leave her in the office until the form is turned in”. yeah. no. You don’t get to forcibly do ANYTHING to my child….momma bear mode:ENGAGED.
but I remained calm. And in spite of the fact that the school has an easily one inch thick medical history on my child, we called her doctors and they were able to fill out THE form that assures them that kendall is not at risk for lead based paint poisoning and that she won’t keel over from diabetic shock. (No i’m not kidding. those were the two main issues they needed to have verification on. Bureaucracy gives me a headache. and possibly makes me want to eat lead based paint chips.)
So we resolved THAT issue only to discover that we will be losing our nurse who attends school with kendall on tuesdays and thursdays, leaving us with a grand total of ONE day every week that kendall gets to go to school! UGH – so frustrating. it’s always something…
And yes we have considered multiple other options.
the school (and we her parents agree) wants kendall to have a full time 1-on-1 nurse in the classroom with her. She has far too much going on to just kind of leave her to own devices. But the school does not have a contract set up with a nursing agency. So what has been happening is that we just send our home nurse with kendall. This is a good intermediate fix – but it means her school hours are cutting into the small allotment of nursing hours we are allowed for HOME use. I know – it’s confusing to even me sometimes. Basically – it’s been a survival mechanism for the past year – but now things HAVE to change. No – another agency won’t just be able to have a nurse ready and up to speed any quicker. Either way – we are looking at a couple weeks of training, interviewing, assessing skills….honestly most days i just can’t even think about it because it overwhelms me so much.
It is just that sense that there is ALWAYS so much to stay on top of with Kendall’s care – even when things are going FABULOUS – it is hard to explain it to people. I know i make it look easy. I am GLAD that she is doing so well that it’s hard to see what takes up so much time. I am SO grateful that she is doing well enough to be home. But some weeks that doesn’t make it any easier to deal with the constant attention her care requires. And i don’t mean just her hands on medical care – it’s the supplies, the nursing, the administration, the appointments, the therapy……it is just a lot. And now with school stuff on top of it, it is really wearing me thin to keep up and on top of everything.
but i’m keeping on. I’ll get organized some day. Some day there will be a whole week without any major hiccups that threaten to upturn the entire schedule!
Other than all of THAT hullaballoo….things are good! We are SO very grateful for her good health this year. I still credit the IVIG with a large part of why she is doing so well. It allows her body to be able to fight off the bugs, keep the bacteria at bay. We celebrated her broviac’s “birthday” in august. In fact I believe today marks 13 months with the same line in. This is absolutely astounding for the translocation queen! So yeah – truckin along here.
No huge speed bumps, just staying the course and trying to get her to still learn how to SIT STILL in school for more than three seconds at a time! It’s a challenge.
And because life has changed so drastically in the 24 hours since I’ve written this, i’m going to post it now and do the update to the update.
i look at these words i wrote, less than 24 hours before she crashed, and i have chills.
this is what life is like with kendall.
the other shoe is ALWAYS waiting to drop. You just never know when.
so you either live in fear of it, or you live in spite OF it.
you learn to appreciate the calm days for what they are – because the next day your whole life could be upside down, and no amount of planning can ever prepare you for something like that.