I know this isn’t like rocket science.
Truly I get that.
But I honestly think it’s maybe the 5th meal I have made, from scratch, real, live COOKING since Kendall was born. I know that is like the world’s worst admission ever. And please believe, it’s not like i have been starving my children! We have been so well taken care of by our church family with meals, my wonderful amazing awesome husband who makes this absolutely
kicka** SPECTACULAR chicken/veggies/rice meal + cooks out steaks like no one i know, and of course a well placed box of sugary cereal for those long nites when Ben is in parts unknown for work. (sorry, is kicka** too rough of a word??? it really is awesome. beyond awesome. you will all have to come over and try it sometime.)
anyways – the point is – i have gotten WAY out of any kind of routine of menu-planning, grocery shopping with meals in mind, really anything domestic. It has been a year of survival, plain and simple. And survive we have. But I feel like I am climbing out of survival and back to thriving. I hope.
Some of you had some good ideas on “what do you do wednesday” that got the creative thoughts flowin’ – they definitely needed a kickstart. I did get our calendar for the next few months printed, color coded and filled in at least through November. Kendall’s color is orange (for all her appts and therapies). There’s a LOT of orange on that calendar! One of the ones we have coming up that I am not sure if I haven’t thought about it because i’m worried, or just because i’m all “meh” about it is her genetics followup on monday. As in this Monday. I think i am TRYING to be all “meh” (meaning very lackadaisical, nonchalant about the whole thing), but in actuality I am avoiding thinking about it. I know they have some bloodwork/results back. I know they will be performing a skin biopsy. I know we’re signing paperwork to have further testing performed on her muscle sample they took in June. Might we possibly be getting answers on Monday? I don’t know. But I think we’ll be close. I think we might have direction at least. We still haven’t heard from Immuno about the plan for her either. I guess at this point we just pray really really really superhard that she is protected from mostly H1N1 (since that is mostly what is going around). Did I explain what Immuno told us last week? I think I did –but as a recap…
She isn’t making “titers” to any vaccines. Meaning, she is just being tortured by getting vaccinated (ie, she ends up inpatient after gutshutdown and/or other horrible reactions after every vaccine she’s ever gotten), and they aren’t actually offering any protection. What we can infer from this information is that she is also not making titers against any OTHER sickness she has had, as you would expect with most sicknesses. Her body is not only wide open to pretty much any bug floating around the air, but it has no idea how to go about fighting it when/if she does get it. This certainly explains why she was so sick all last winter, and why she continued to fight bugs all summer, and oddly enough does bring a measure of comfort to know at last that there IS a reason she has seemed so sickly after vaccinations. WE AREn’T CRAZY!!!! (well, ok, maybe we are, just a little, but not about THIS at least!) So anyways – what that all means for NOW, while the country is fighting a lot of panic over the pandemic status of the H1N1 virus…
Basically it’s a given that if you are exposed to this virus, you WILL get it. People over the age of 45 seem to have some immunity to it because this new strain is similar to the strain that went around in 1976, but other than that, you’re wide open. Exposure = infection. If you’re an otherwise healthy individual, you may or may not even know you have THE SWINE FLU, but bottom line is, you will survive. it may not feel like it, but you will. MOST PEOPLE do not need to go to the ER to find this out. kids seem to be struck pretty hard by it, and kids with underlying conditions are struck SUPER hard by it. Getting the vaccination will help protect you, and will help weaken the virus in general. (I am not advocating that you all go stand in crazy lines to get the vaccine, just stating the facts as I understand them). Kendall is in kind of a bad spot with it. Not only does she have the underlying lung disease (RAD/asthma) that means the flu will hit her hard no matter WHAT strain it is, but she also CANNOT get any more vaccines till neurology has cleared her (even if we WANTED to give her the flu shot, we couldn’t), but now we find out she also has no wherewithal to be able to fight the sickness with the normal fight our bodies were designed to give to viruses and other yucky bugs and invaders. For all that I HAVE panicked over with this kid, I am oddly calm about this. She more than likely will get it at some point. We can only hope and pray that when she does, it is a weakened form of it, and that it catches her in one of her good weeks. It seems like the babies (K3 and K4) are both fighting something right now – the faucet-y nose running a beautiful shade of yellowish green, the slowly rising temps, the “not quite acting like themselves” behavior – i HOPE it’s only a seasonal cold and doesn’t turn in to more.
in other kendall updates (because I know sometimes i forget to process things here and then can’t remember when/where they first came up) – she is more than likely going to need another video swallow study soon. Our little home-cooked trial of pears in the tube vs. pears orally did reveal that she is not reacting to them in her system, but she does have some reaction whenever she eats foods orally. Not always straight aspirations, but definitely signs that she isn’t always coordinating the movements to get food to the right spot. Even her SLT (speech therapist) can’t always tell what she’s doing with her food, and notices more subtle signs than I do that there is a definite possibility of aspiration. Still. UGH!!!! I thought we were past this! Frustrating for me, yes, but even more so for kendall quinn. Who still LOVES LOVES LOVES to eat, in spite of the fact that she sometimes ends up gagging and retching for a few minutes after a few bites of runny pureed baby food! At least she’s got her mum-mum crackers! so we’ll see what genetics has to say. They might want to order the VFSS (swallow study) or wait till we see GI on the 25th and have them order it. Although I know that GI would put the order in if I called and requested it. I am just not ready to go there yet. I want to think that she’ll just GET IT one of these days soon.
Enough of that depressing talk.
I have COSTUMES to finish glittering!!!! SEriously – is there anything more fun than lots of BRIGHT PINK GLITTER on cute little aprons?!?!?!?! No. there isn’t. and i’ll prove it to you tomorrow when I get all the pictures!!! For now, i have two little girls who are DYING to iron on some jewelly patches and glue some glitter.
Have a happy wonderful fall Thursday day!!!