Cause we got a whole lotta whining about to get down in here.
First of all – I feel horrible. Let me just whine about my sinuses, ears, eyes, nose, throat and head for a few seconds. I went to bed last night feeling ok, woke up this morning feeling like a truck ran me over. That truck may or may not have been kaylen crawling into bed with me and then hacking up her germs on me all night long. Ben is once again gone on a week long business trip, so there’s no rest for the weary here. (Yes this is all just purely whine, don’t judge!)
The girls came home from school yesterday and kaylen was in tears from how bad she felt, and karissa was about a step and a half behind that. Loaded everyone up on vitamin C and ibuprofen, and they had definitely perked up a little bit. (Oh and a CFA milkshake. Because it was Milkshake Monday, duh. And CFA milkshakes fix a LOT of problems.) Karissa never really had a fever, and seemed improved this morning, so I sent her off to school with Kealey. I’m still debating over Kaylen – who hasn’t had a fever through the ibuprofen so far, and is looking ok. Thinking I still won’t risk it – but not sure I can convince her to lay down with me later and take a nap (which is really all I feel like doing!)
Kendall made it up and out the door to school with her nurse – but complained all morning about her throat (which isnt actually her throat, but usually more often means that she’s very nauseated, because she has this gaggy little retch-cough that she does with it). She actually asked me this morning in her groggy little voice “mommy, when I gonna feel better? I just want to feel better!”
Stab my heart.
I know she has felt like absolute poop for a few weeks now – between being sick with regular winter stuff, the raging UTI from a couple weeks ago, and being super anemic (low blood counts to overgeneralize it), i cannot fathom how the kid even wants to get out of bed in the morning. But that’s Kendall. That’s why she’s my hero. I can personally barely function with a touch of a virus, but there she is smiling, asking to go downstairs and see sissies, and learning how to voice request “little mermaid disney world ride” on YouTube. She seriously watches this video of the Little Mermaid ride at WDW over and over and over again. Freaks out over Ursula every. single. time. and wants me to explain why King Triton is holding a triton at the end every. single. time.
(Don’t worry – Cinderella is still the fave – but Belle and Ariel are starting to creep in. Variety is sometimes nice!)
Other than that – we’ve just been here. Surviving. Getting some snow (FINALLY!!!!) I’m a huge fan of a good old fashioned snowstorm. When my family is all home together. We haven’t had any all winter –then got two good ones in one week! In March no less…
I feel like my weeks as of late have been full of just “blah”… the dreariness of doing the same thing over and over and over again – always cold, always feeling just slightly under the weather, always exhausted, always running around with kids or cleaning up after kids or chasing down doctors for kids. There are always more bills to be paid (just got another stack of medical bills in the mail today – not helping my mood at all!), more things to clean up, more laundry piling up – and never enough me to go around to everything. (I’m purely just whining at this point – i know everyone goes through this, our situation is not unique, i’m not looking for sympathy – just purely venting!) i am tired of feeling tired and worn down and like i will never get out of this hole I feel stuck in. Tired of the gray hairs that cropped up overnight during last week’s logitical nightmare with the party/hospital stay craziness. Tired of making excuses for my own poor eating/health habits. Tired of not having nearly enough energy to make any kind of changes to the above.
thank God for a few very good friends who can deal with my blahness and whininess and pull me out of my funk for a few hours at least. Thank God for the hundreds(? – it seemed like it was that many!) of you who helped make Kealey’s party a success. I seriously could not have done it without you! (And also I have bags and video games and tupperwares that need to be returned! contact me to claim yours today!) You are all the reason I have not fully resorted to rocking in the corner sucking my thumb. Seriously. I cannot even begin to tell you thanks – your notes, messages, help with everything i’ve needed help with, prayers – they all help me function.
Karissa had her followup ortho appointment yesterday – the one where we found out how many thousands of dollars her jacked up teeth are going to cost us. She is going to need three phases of treatment. The first involves an expander. I can hardly type or think of that word without cringing. I’m sure some of you have dealt with these nastified things before. I personally do not know how i am going to do it. supposedly we are supposed to adjust it every night? Hers is going to be more like every weekend, when Ben is home to do it. I can drop an NG, drain intestinal contents, catheterize, and beat mucus out of lungs. But I draw the line at twisting a metal appliance in my child’s mouth meant to stretch her bones out. Nope. Not gonna happen. I about fell off my chair with how bad i was cringing at the doctors description of all this. I do not do teeth. I don’t do them in myself and i certainly don’t feel like subjecting my child to that torture. You know that part in Princess Bride where they hook Wesley up to the sucking machine? That’s how i feel about this torture device they want to put in Karissa’s mouth. She will have to wear it with a facemask at night for at least one year. She has to have two baby teeth yanked, neither of which has an adult tooth behind it. (We share this dental disease – missing adult teeth. I’m just smart and never went to the dentist to have them tell me my teeth were in the wrong place.) The tech was like “this isn’t painful, it’s just pressure”. I was all “that’s exactly what childbirth is, but they still give you an epidural if you cry hard enough for one.”
So we get to start THAT fun merry-go-round of MORE appointments some time next month.
And last but not least – Kendall’s anemia. Kendall has had “anemia” her whole life – in the sense that her hemoglobin and hematocrit (measurements of the red blood cells in your blood, the ones that carry oxygen throughout your body) are always low (below the limits that the lab considers a “normal” range for someone Kendall’s age). She has needed transfusions before, but typically only when she is septic and her body is chewing through blood faster than she can produce it. You remember her early February hospitalization? For the high heartrates we could not control? That was due to the anemia. Except at that point, her lab numbers were still in the “too high for a transfusion” range. Now that she’s dropped a couple points past THAT low, her body is not giving us the red flags that it had been – it is yet another kendallism. She is obviously not feeling very good at all (totally expected with her crappy counts), and is very tired most of the time. Her body would be doing TONS better with a blood transfusion right now – but unless we go camp out at the hospital, there’s no good way to do this. She had dropped again last week, but held on all weekend (as far as her vitals go – her body is in a hugely compensatory mode – but it IS compensating, which is a good thing). Tomorrow morning we will pull more labs and hopefully have the results by the afternoon so we can make a decision either way.
We know she has a mixture of iron-deficient anemia (iron/ferritin being the building blocks for red blood cells, and most of us get iron via the foods we eat as they are broken down in our stomachs. Not having a reliable stomach-breaking-down-ability combined with not eating a whole lot of anything of substance doesn’t make for a very high ferritin count), along with anemia of chronic disease. She has been receiving oral iron supplementation (it goes into her tubes) for a couple months now – but it is very hard on her GI tract and we have had to stop it in the past due to it causing GI bleeds. Her body HAS been doing a good job of keeping her iron stores up, keeping her counts up, compensating in every way possible. But it’s getting worn out now. I do believe that it CAN bring itself back up – but it’s going to need a boost of some kind. It is unlikely to come up on it’s own anytime soon, which leads us to needing to do an iron infusion (IV iron) as a very likely solution. Some people rely on iron infusions for a few months/years – Kendall may only need one or two to give her that boost back up that she needs. That’s my best case scenario hope at least.
I am not sure what the timing of such a thing would be. Iron Infusions need to be done at the hospital until there is proof that they are well tolerated. Ben is in some warm southern state this week, and will be leaving a few hours after he gets home again to drive to Texas to help his mom move up here. Leaving me trying to juggle kids and schedules again if we need to drive up north (why does he get to go south to warmth and I get to go north to coldness???) Anyways – let’s just all hope and pray and sing kum-ba-yah in an effort to ignore the possibility that we might need to go up there anytime soon.
Ok I think that is about as much whining as i can stand from myself for one day.
Sorry i’ve been gone for so long. I really do miss blogging when i go on these hiatuses –b ut some days i just don’t know how to say what i’m feeling, without just absolutely hating how whiney it all sounds. Warm weather is coming though right? And at the end of the day, it’s all about the CHOICE to change your attitude, and change your life. I know I’ve got a lot of changing to do.
Hopefully there’s some great news next time I update!
Thank you again, all of you –for reading, messaging, commenting, praying – in general – thanks for being my friend.
Love and hugs~