Dear Grandma Marge –
this one’s for you. You are at the top of a very short list of people who can drop hints that its been a long time since I’ve blogged that will actually spur me to write instead of just clamming up further. I love you – thank you for everything~ hope we get to see you soon!
I’ve titled this one summertime because it just might be one of the few updates you get this season, since it’s already been almost a month since I updated! overall – things are going GREAT for miss KQ, and i cannot tell you how happy I am to report that. I am just a little superstitious about saying actual lengths of time since our last infection/illness/admission – but it has definitely been a good long run! We will take every minute we are given in our OWN beds! Thanking God for the mini hospital room that we have in Kendall’s bedroom, it has saved us a few ER trips at the very least, if not stupid admissions for “tune ups”. Our standards for what “worries” us have definitely dropped, as I think they naturally do when you have witnessed your child literally clinging to a very fine edge between “super sick” and “hanging in there”.
Kendall has definitely struggled with the heat and humidity a lot more this year than in years past. I don’t know if that is because it is truly stressing her system out more, or if its because she is actually able to independently WANT to go outside and play this year (vs last year when she slept most of the day still, and didn’t really understand what her sisters were doing when they would go outside). I am sure it is a combo of both. Either way, her nurse and I play a good game of crapshooting every day with whether we let her be a kid and go play outside for a few minutes, or do we play “ER nurses” when she comes in and we are hooking her up to more fluids, taking temps and BP’s, packing her in ice packs, putting her on oxygen, etc to try to get her brain reset so she stops literally burning up from the inside out. We know kendall suffers from “dysautonomia”, or a failure of the body’s autonomic system to regulate itself. Things that you take for granted – like sweating when its hot, shivering when its cold, taking the perfect amount of breaths per minute, having your digestive system work in forward progress, feeling pain when something hurts and comfort when things are just right – these are all thanks to your autonomic system. For whatever reason, Kendall’s system likes to either not send the message or it sends the wrong message to the wrong system. One of the biggest issues we are having from that right now is with temperature regulation. Outside in the muggy heat, her body doesn’t break into its stores to help hydrate her, and it doesn’t tell her body to sweat. Imagine parking your car in the middle of a blacktop parking lot on a 105 degree day, and not rolling down the windows. Slowly the temperature inside that car will just rise and rise and rise, because it has no way of cooling itself off. That is Kendall’s body. We are talking within literal minutes (maybe 10), Kendall is dealing with some pretty chaotic internal vital signs. RARELY will she self-regulate during these times. Meaning, she will not come sit down or ask to go inside. Because at the heart of who she is – that fighting spirit that has saved her time and time again – she FIGHTS to be a regular kid. She does not want to stop playing.
So we drag her in kicking and screaming and begin the process of cooling her down. I am pretty sure that if she knew how she would be swearing at us too. and yes it does take her nurse AND myself working for a good hour to get her back to an acceptable baseline. Once she is inside and in her bed hooked up to everything, she usually will pass out, and depending on how hot she got, she will sleep for anywhere from 3-5 hours, and when she wakes up she’ll want to do it all over again! By that time of day though its usually a little bit cooler, and she might get as many as 20 minutes outside. And by playing outside, I don’t mean she’s running around and climbing all over things. Usually playing outside entails sitting in the little barbie jeep being “driven” around by
Miss Daisy Kaylen who likes to do donuts and rooster tails and push the limits of what Power Wheels ever intended for “ages 4-7” to be able to accomplish in their plastic cars. Maybe Kendall’s issue isn’t the heat as much as its her adrenal glands from the adrenaline rush of driving with her sister….(I’m only kind of kidding!) Anyways the point being – she isn’t being that active. It is heartbreaking to watch – and yet inspiring at the same time. I want her to keep fighting. I want her to NEVER think there is anything different about having to lug around a backpack and click-click-click with every step cause of her AFO’s. I want her to be like any other kid! And she will be. She is. She just has a few extra attachments.
Anyways – so besides that fun battle on a daily basis, things are movin’ right along for her! And for the rest of us! We finally were able to get new library cards after waiting the prerequisite six years in order for the massive library fine we had from an unreturned CD case to be cleared off the records. This has just amazed the girls – we get to go to this huge fun building where they have computers and movies and even Wii games that you can checkout FOR FREE!!!! And then you can bring them back and get MORE!!! (I have obviously failed as a mother. They really had no idea how the library worked. Admittedly – its a bit hard to get into and out of ours prior to this new construction, especially with a stroller – which we have not been without for at least 4 years running!) Our days aren’t filled with tons of crazy running around, but I am slowly starting to build up stamina to at least get the oldest three out of the house for fun quick little things. It is so hard to leave Kendall crying at the front door that she wants to “go-mommy” (go with us), but I know that its so tough on her little body to be schlepped in and out of the car to run errands when its hot and muggy outside like this. It’s easier to hunker down in our cooled off little house and play games or read all our fun new library books. We have our little metal frame pool (about ten feet big!) set up, and occasionally the girls will spend the afternoon splashing around in there, or go down to a friends house with a bigger pool, but that is really the gist of our summer vacation.
We do not take big trips – we can’t afford them nor can we plan on taking Kendall anywhere. The few road trips we have taken with her end up wearing us out from the packing process let alone trying to convert a hotel room into a hospital room! And the thought of going places without her is very hard to think of. It is hard to hear about/talk to friends who are planning fun vacations for their families. It is hard to not get just the tiniest bit jealous when I hear those things. But i realize that that is not our life right now. We are blessed in ways far beyond family trips or uber exciting summer vacations. We have each other, all here, all mostly healthy. Our needs are met. We are surrounded by an amazingly supportive community – made up of an odd mixture of close family, good friends, and complete strangers. It is those complete strangers I think that sometimes get me the most, make me cry good happy tears, remind me why my family is so much more important than a trip. So if you are a complete stranger who somehow reads this blog – thank you. Thank you to everyone who came out to the Culvers fundraiser a few weeks ago – and to the baseball teams who decided to raise the bar even higher! words will never be able to express my gratitude for all of you who find time and love in your hearts for Kendall, or for our family.
Last week was not a good week for me emotionally. The week before that (and really the month before that) weren’t too great either. But this week is looking up. my birthday was yesterday. I was surrounded by wonderful family and friends that have become like family. I got a whole Portillo’s chocolate cake for my birthday cake. I have a fridge full of Coke. My brothers almost blew themselves up making homemade fireworks and my sister in laws had us all laughing while they tried to make adult beverages measuring alcohol out with 60cc medical syringes (all i had to measure ounces!). We laughed until we cried and then we laughed some more. It was a good birthday. So yeah, looking up definitely. I am not quite ready to turn my blog into a morose pity party – which is why sometimes weeks go by with no post. Not that I want to only blog about sunshine and roses – but because I know myself. If i get started just whining about things I WISH were different, I will start living that way. And that’s no way to live – like a whiney spoiled brat when things don’t go MY way. I know far too many people who have chosen that as their preferred method of operating and it is definitely no way to live!
So instead I’ll just continue hunkering down here in the house, reading books and biding my time till the tide turns and my attitude improves and I have something good and nice to say. And now that it has taken about 8 hours to get this much out – I have lost my train of thought completely! But tomorrow’s another day – I’ll try to start earlier and end earlier so you get just one cohesive blog! Well, actually, I hope there’s nothing to update! I like nice boring weeks with no emergencies! Anyways – i’ll try to update more frequently. We have a lot of stuff coming up in July – I’m sure i’ll have lots of fun pics and whatnot. Like i SHOULD have pictures from the parade we were in yesterday in Wheaton for the UMDF float – but right now I don’t. Hopefully soon!
Ok now i am really going to bed.
Peace out. See you on the flip side.