When I stop and think about the fact that last Saturday we were getting discharged from the hospital – it makes this week seem like it’s been a MONTH long. And i don’t say that to be ultra-dramatic or because it has been full of super crappy news (only kinda crappy!) – it just has been a very long week!
I’m very hopeful that this week will be MUCH calmer, but as I say that I am thinking of the fact that due to teacher conferences/in-service days, Kaylen and Kendall don’t have school at all this week (Kaylen will go her usual half day on Monday and half day on Friday) – and then nobody has school on tuesday, and then only half-days on Wednesday and Thursday. I have one conference at o-dark-thirty on Wednesday morning for Kendall (ok 8, but it means i will need to schlep everyone out of the house at o-dark-thirty or thereabouts because Ben is gone all week), and then I have three conferences on Thursday afternoon. With no nurse and no husband, this means I get to try to conference with four teachers while dealing with four children in the room. This should be awesomely productive. The only problem is – I actually NEED to have a productive conference with Karissa’s teacher. Due to the results of her hearing testing a couple weeks ago, we need to adjust her 504 plan because her schoolwork is in NO WAY reflecting the true educational level of this kid, and i’m frustrated. But i feel about as equipped to go into this battle as David must have felt going against Goliath. I just got nothin’.
I MUST make eye appointments this week for all of us – HOPING they can get us all in during one of the half days for the girls. Kaylen says her eyes hurt all the time, Karissa’s main pair of glasses is broken, I am on my last precious pair of contacts, and Kendall is doing this weird blinking thing when she gets tired that i’m hoping doesn’t mean anything beyond her eyes are getting fatigued, but should at least get it checked out since we all have to be there. Kaylen needs to go back to either the ped or the ENT for week eleventy of this crappy croup stuff she’s dealing with, Karissa needs a final follow up with the neuropsych to get the testing recommendations, I need to
strangle call someone at the nursing agency and discuss AGAIN how vitally important it is that we get at least SOME of our open hours filled with a skilled non-crazy nurse soon. I need to clean the house, dig out coats and hats and match up mittens/gloves and clean out the over=flowing front closet so the living room can stop being the dumping grounds for everything outdoor-wear related. i need to get control of life again. All of this Kendall stuff has me feeling very OUT of control lately, and my typical reaction to that is to just shut down. Focus only on what needs to happen in the next hour, and become paralyzed at the thought of anything beyond that.
But it’s time to get out of that funk show brother.
We are slowly getting used to Kendall’s new high-maintenance schedule. Having an extra hour in our schedule last nite threw me for a loop, but between my awesome “been there, done that” special needs momma friends and my super-smart cousin-in-law Jim talking me down on facebook, we think/hope/pray that we were able to keep her meds on a good enough schedule that it didn’t throw anything too far off. I’m still trying to get over the massive anxiety from the stern “speech” Dr. G gave me about having an active kid on a hefty dose of blood thinners. It included such fun remonstrations as “if you even suspect that she gets hit in the stomach hard enough to cause internal bleeding, go immediately to the ER. if she hits her head in ANY way that is suspicious for possible concussion, go immediately to the ER. if she has ANY cuts or wounds that will not stop bleeding, call 911 or go to the ER.” uhhhhhh….yeah. She didn’t earn the nickname “headwound harry” for nothing! Kendall’s head is magnetically attracted to hard surfaces. She is a walking accident. I feel like a helicopter mom these past few days hovering over her, yelling at anyone who gets near her…I don’t know how/if/when I will be able to let her go to school. She is definitely already showing signs of being on a blood thinner. Her poor legs are totally bruised up by the shots, anywhere she has been bumped or picked up there are small bruises, and withdrawing her ethanol/tpa meds from her lines earns major gushes of blood into the syringe that then leave a bigger mess. Sorry to be graphic but this is what we are living with! Normally we have to hold the kid in 82 different positions to get blood to flow for lab draws and such – not anymore! I’m sure I’ll adjust to this in time (she has to be on this therapy for 6 more weeks, and then indefinitely on a modified version of it), but MAN is it enough to make my heart hurt from the stress of constantly watching her like a hawk.
She is supposed to have a repeat ultrasound and meet with the newest member of our medical team, the hematologist, in two weeks. I am hopeful and fully expecting that we will get good news at that appointment (like the clot was a total fluke, is now gone, and we can cut her lovenox therapy in half or stop it completely). She will also be finishing up her antibiotics and the anti-fungals around that same time, and all of this will hopefully help her start feeling much better. It is hard to explain how crappy these meds make her feel as they do their job and eradicate any and all traces of “the bad guys” from her bloodstream. She does her best to still be her normal self, and every day I feel like I see a few more minutes of “Kendall” back than the day before – but I know she doesn’t feel good at all. Today was actually a pretty good day. Her dressing was sloughing off (again!), so i wrapped her up like a bowl of leftovers (we use a special dressing protective cover and then wrap her entire torso in saran wrap to keep water out of her line area) and let her splash in the bath like a big girl for a few minutes. I got to scrub her knotty hair real good with conditioner and then put it back in braids so it doesn’t tangle. She’s due for a haircut again soon! She had her first haircut last year on her birthday, and will have her second one around this birthday! Actually they all need haircuts. See??? one MORE thing I have to fit in with everyone! Except Kaylen. She’s actually losing her hair for some reason (probably her crappy diet that consists of lucky charms and captain crunch and the occasional bite of noodles or mashed potatoes.)
this was supposed to be a quick short update so I don’t have novel-length blog posts this week…
Anyways – I hope it is a beautiful start to the week for all of you! Can you see the facebook “like” boxes on the side? If you aren’t already, please “like” Kendall’s page! We are SO excited that she surpassed my original goal of 400 so quickly – and now i’d LOVE to have her page get to 1000 prayer warrior friends by her birthday! Share her page with your friends! Help us hit 1000!
I’ve got a few fun things in mind for this place this week so stick around! you never what’s gonna happen next!
thanks for being here!
love and hugs~