Home Sweet Home.

I just realized I forgot to update after the events of yesterday. mostly because i am absolutely wiped out – physically, emotionally, any other-aly you can be… Also because I am pretty sure my trusty keyboard on my laptop (ergo, my entire laptop) is trying to die and I literally type so fast that it takes 30 seconds for the words to catch up on the screen and then they are jumbly and it frustrates and saddens me so I avoid blogging. I don’t know what I’ll do if it fully dies on me because the only other working computer in this house is our 11 year old desktop that i think has a 500mb RAM. It’s actually kind of comical. Anyhoo. That’s part of the reason for the long blogging lapses. But mostly just because I’m tired.

 

Randomness aside – (yeah right – i’m the queen of random!) – we are home, Kendall is still on some good strong bug killers via IV, and we found what we believe is the culprit. The lab was able to identify yeast growing in her urine – and while this may seem like a no-brainer, it actually is hard to identify. Even harder to kill. You may or may not recall that yeast is an archenemy around here. It is partly due to kendall’s uncooperative gut, partly due to her love of all things sugar, partly due to her crappy immune system. Whatever the cause – it’s now in her bladder and explains a lot of her pain and issues over the past couple weeks. For all we know, she had the yeast last week also – as the lab didn’t find it until we sent a separate culture specifically for yeast from her urine. Adding to the chaos is the fact that the doctor who discharged us so swiftly last week wrote the prescription wrong for our pharmacy. So instead of giving her a full 1300gm of the antibiotics every day, we were giving her half that. I about put a hole in a wall when I made THAT fun connection. While it’s fun to have something (or someone) else to blame, the bottom line is that Kendall has been sick for a while. She very likely had a UTI brewing even before surgery, and while i’d love to point fingers at what should or should not have been done, there’s really no point at the end of the day. She got sick, she is getting better, and I have learned some valuable lessons about how very important it is that I stay on top of everything and continue to be Kendall’s voice and advocate.

The very good news is that as we’ve finally been getting her infection under control, her pain levels have DRASTICALLY decreased. she still has quite a bit of pain, especially if she’s trying to be too active (i.e., if she gets up off the couch or out of bed for more than about five minutes) – but overall, she is returning to the sweet baboo we all know and love. I am SO glad to have her returning back to me, to all of us. I’ve had some tough conversations with her nurses (our daily and weekly ones, the ones who are like part of our family) – and we will likely be having some tough conversations with most of her doctors sooner than later. Things like her chronic pain control, her increasingly “complex” needs at home, how those needs affect the whole family. It’s not all doom and gloom – I just think that while Ben and I have done our darndest to keep moving forward as if life is totally normal and she is totally normal, it is wearing us all down. Because while it is OUR normal, it is definitely NOT normal. It is frustrating and often heartbreaking and it wears me out more often than not. I don’t know how or what to change, but I’m pretty sure something’s gotta give. I know some of you give me way too much credit. I’m not wonder woman, in spite of my attempts to prove otherwise. I’m far from it. My house is often very messy, I rarely cook healthy (or even unhealthy) meals for my family, I need FAR more exercise/schedule/routine/discipline in my life…should I go on? I think maybe sometimes too I avoid blogging about it because I don’t have anything but semi-depressive ramblings about how tired I am and how much I just want to whine about all the balls I keep juggled.

But that’s not who I am really am. I’m not a whiner. Ok I am a little bit. But It’s not a large part of who I am. I look around at so many of my online friends/inspirational mentors in the medical mom life, some of whom have lost their precious angels far too early from this earth – and I think – what the heck am I complaining for? I think unless you have experienced something like that, you may not get it. Every single time I want to break down crying that I’m up running IV antibiotics at midnight, or emptying my daughters urine from a bag into another container and hoping I don’t spill any on the carpet, or getting frustrated at the insane amount of preparation and work that goes into preparing her Iv nutrition/fluids/meds for the day – a voice stops me and says – “but at least she’s HERE for you to have to do this stuff for.” So so so true. How quickly I forget. How quick I am to take for granted this beautiful wonderful life that we have been given.

How dare I sit around feeling sorry for myself instead of celebrating how very blessed we are? so I gotta do something to get myself out of this funk. I think last year at this time I was blogging about roughly the same thing. I feel like I’m a broken record of my own self – repeating my same goals and mantras and hopes for finally being organized/scheduled/ahead of my own life enough to stop and bake cookies for my children when they get off the bus from school. I don’t know how I’m going to actually make it happen, but this time i’m ready. I think i’m ready to document it here, in my little corner of the web. Good bad and ugly.

See what I mean about random? I don’t even remember what I started blogging about to make this roundabout connection….

anyways – I should wrap it up. I caught some crappy crud from the hospital and I have felt like a huge block of snot and pain all day. I should try to get in bed early and hope that I can sleep it off. We have FAR too busy of a week ahead this week. I have two different curriculum nights, the girls start dance again this week (GREATLY reduced schedule though so that’s nice! i’m not trying to become certifiable this year!), Kendall’s first day of school and all the uber-fun logistics of how that is going to happen… Karissa will be at Children’s in downtown Chicago all day Monday (possibly overnight depending on how she does) for a repeat MRI to check the growth on her spine, Ben is in Phoenix all week, I’m sure i’m missing about 8 other things that are all supposed to happen – oh yeah! I have to make the drive up and back from milwaukee in record time on thursday to be back for the curriculum night and dance….If you’d like to contribute to momma’s starbucks/gas/sanity fund let me know!!!! 😉

We’ll be ok. Somehow, things will all work out. They always do. Not always how you planned them to, but they DO work out. Somebody volunteer to bug me about all the crazy things I want to blog about this week (besides the actual details of how we manage to survive this upcoming week). Here’s a small sampling:

• The cotton candy machine – in addition to the chocolate wonder-fall at Golden Corral.
• Here Comes Honey-BooBoo. Yes I’m serious.
• My Instagram Addiction.
• First Day of School Pics.

Ok I think that about wraps it up. Because I’m in edit mode for my new blog template – can someone tell me if you can still see the facebook like page thing over on the right? If you cant – just go like the terra talking blog page please! Here’s the link : Be a Fan of Terra Talking! It will seriously make me all kinds of giddy. I’m planning another fun crazy random vlog to go along with reaching 350 fans on that page. And i’d LOVE to have 500 fans by Mito Awareness Week coming up in September! So spread the word, tell a friend. Thank you all for stopping by, checking on us, checking on Kendall, praying for our family, helping us out in the countless ways that you all do. I love hearing from you – even if I don’t always have a chance to respond right away. I read every single text, every email, every blog comment. Your offers last week to help get the school supplies, make lunches, do anything I needed – you reduced me to tears. I don’t even know sometimes HOW to direct the help offered into tangible (even untangible) things to do. We appreciate everything that is done, and everything that is thought about being done. Anyways – I’m about to get sappy. Know that you are all appreciated and loved by all of us! i pray that you have a fabulous weekend~

 

Terra