Just doin’ our thing.

We are still here, just cruisin along, doing what we do. Getting through each day, trying to soak up and enjoy the most out of each day.

for the most part – this means we get up, do the school craziness, i do what I can on the kendall craziness, we play playdoh, sissies come home from school, and we do the dance craziness. (notice a theme?)  we still don’t have full nursing help, which is both a blessing and a very hard thing to deal with some days. i am LOVING spending time with just kendall every day. She is loving it too. we play a lot of playdoh. Read a lot of books. Watch a LOT of princess movies! And i try to soak all this up. Try to hold on to how precious this time is. Try to not beat myself up for not having the girls’ rooms cleaned or the floors swept or the laundry caught up.

I have been trying to find time to sit and write this post for three days now. In that time, Kendall has gone from “totally fabulous!!!” to “i’m a little nervous about all these crazy things she’s doing”. It’s nothing huge or major, or really anything that I can put my finger on for sure. It’s just “a wobble”. A teeny little variation off her baseline. Wobbles that she was doing prior to her last two crashes. i’m trying not to compare apples to oranges, and read too much into things. On the flip side of that – I’m scared to death that ignoring her small little warning signs will lead to another crash.  I’m so grateful that today we had our nurse who knows kendall’s baseline and could see for herself that kendall was definitely ‘off’ today. I hate trying to make all these decisions just in my own head. It’s so much pressure. And the consequences of choosing wrong are so huge.
But we have SO much fun stuff coming up this weekend, and daddy is all the way in California, and really, it’s not like she’s doing anything THAT out of the norm. She’s nauseated, has a nearly non-stop headache, and a few wonky labs. No fever, great blood pressures, heart rates well within Kendall’s normal range. Hoping that it is just this crazy heat and her body’s inability to compensate well for it.
Tomorrow it is supposed to be hot still, but storms in the evening should cool it off. I’m very hopeful that this equates to a turn back to normal for little miss. I don’t function well when every minute of my day is spent being a non-stop diagnostic calculator for Kendall. Nothing else gets done. I try to not micromanage her issues. I try to keep things moving here in our house. I feel like I rarely succeed at anything. Except that at the end of every day, I can collapse into bed and know that at least for that day, I succeeded in keeping us all alive. Sometimes that is as good as it gets.

but enough of that.

we have one more day of therapy (wednesday) – and in a side note, that is every day for the past week! ugh! – and then thursday the Special Spaces Chicagoland team comes to take over our house and do Kendall’s room makeover! Squeeeee!!!!!! We will have to be out of the house from Thursday afternoon until the big reveal on Friday evening. YES there will be tons of pictures and YES I will post them here as soon as I possibly can!
Saturday will be spent putting all the girls’ clothes back in their closet and moving medical supplies into Kendall’s new space, and then sunday is the start of Mitochondrial Disease Awareness week, and is kicked off with our chicago “energy for life” walk. I had had a goal to have 50 people on team “Kendall Krew” (it is our first year having a team at the walk!) – and I think we might be getting pretty close to that!
and then after ALL THAT excitement this weekend, we get to spend Monday and Tuesday in Milwaukee at CHW for appointments and Kendall’s monthly IVIG infusion.  Oh my goodness I’m exhausted just thinking about it all! But SO glad we get to do it all!

This is turning into just another boring update and i’m falling asleep typing it. mornings come WAY too early after a night spent checking alarms and giving meds.
As usual – I have so much I want to say/type/blog about – but the tiredness is making it hard to form coherent thoughts. So at least this is an update of what is going on – and hopefully the other things will get a chance to come out soon enough.
I’m so thankful for all of you who come here to check on things even when its been weeks since my last update! Please do’nt stop doing that. Some day I will get in a good rhythm and have lots of fun randomness for you! I might even have more crazy videos or horrible drawings for you soon!

ok i’m still rambling.

have a good {fill in the blank with whatever time of day it is for you}.

love and hugs~

 

T-crest.