September the First.

I don’t know why i’m always so shocked to see how long it’s been since I last posted.

But still…. June?

September will be better,  I promise. I already have lots of fun mildly eye-roll-inducing SUPER INTERESTING posts lined up.

And even a few vlogs! (speaking of, I have a burning question regarding vlog vs blog on a specific topic on the Terra Talking Facebook Page – go over there, like it if you already don’t, and help decide the fate of my awesome story!!)

So since most of you come here to read about Kendall, and how she’s doing, I’ll start the month off with that.

Overall, she’s doing good. Other than the crazy bug bite from hell that turned into an abcess/cellulitis that required hospitalization and ten days of IV antibiotics and a week of IV stress dose steroids, she’s been doing a good job holding her own.2SS_6375

But oh…how I wish you could see what I mean when i say she is exhausted. How much my heart breaks for this little girl who shoulders up her backpack, full of two pumps and two bags of fluids the last couple weeks, and wears it on the hot sticky days like a champ, never complaining, never whining about it, just maneuvering around with it because this is her life and this is what she knows how to do: LIVE.

She loves going to school. Absolutely ADORES it! It wears her out so badly (and yes, I get that all first graders are tired and adjusting to a new schedule – I was prepared for some tiredness but this is a whole other level of exhaustion for Kendall!), but she puts on that crazy smile of hers and she keeps her chin up and she does her absolute best to pay attention to the teacher and to keep up with the class and she’s trying so hard. i’m so proud of her. She’s amazing.

This infection she had – well, it hit me almost as hard as it hit her. She had JUST gotten IVIG, the magical unicorn tears I have held up for the past two years as being the reason she has stayed so healthy.  And as a quick primer on IVIG for those who are newer around here – it stands for IntraVenous ImmunoGlobulin.  Your body’s “immune system” is complex and multi-faceted but for space and time constraints i’ll boil it down to this: your blood has three main components of immunoglobulin which are technically your “fighters” against bacteria, viruses, fungi, etc. You have IgA, IgM and IgG. IgG is the main one you need in order to have an immune system as most people consider it.  Contrary to popular belief, “picking up every cold under the sun” is not actually a sign of a weak immune system. It’s a sign of a good one – your fighters kick in! You get the fever (WHICH IS A GOOD THING!!! It means your body is fighting invaders!), you get a runny nose, etc etc – and you fight off the infection thanks to your IgG.

Then we have Kendall. She technically HAS IgG in her blood, and sometimes she even has a really good amount of it – but it’s like having an army of soldiers who are all narcoleptic and/or otherwise incapacitated. Her own native immune system doesn’t recognize invaders until it’s WAY too late. Even with the IgG that we infuse into her bloodstream every few weeks, her immune system is extremely lazy. So what happened a few weeks ago is that when she got a bug bite on her little booty cheek, her body didn’t send the soldiers to help control the spread of the bite reaction as is typical. Hers went from “regular mosquito bite” to “holy crap what IS THAT THING!?!?!?!!?” in about 72 hours. And we were running IV benadryl to try to stop it from getting worse and it was just getting out of our control almost before our eyes.

And i was glad that we are at a place with her team that when I send an email (with a picture) and say  “ummmmmm…..help me?”, they jumped into action. I didn’t have to spell my fears out for her doc, he knew what I was thinking. This is the kind of stuff that takes Kendall down hard. Maybe not right then, but if we had not nipped that in the bud, it would have easily been systemic within the week. Septic, most likely. A blood stream infection that would wreak havoc on her organs and little body – all from a bug bite.

Now of course we have no way of knowing for sure – and no one really wants to try to find out. But the fact of the matter remains that Kendall looks amazing on the outside, and yet her body fights a raging war on the inside, every single day.  I am SO thankful for our new nurses who are very on top of learning all of Kendall’s “Kendallisms” and helping me manage the delicate balance of meds/fluids/vitals that keep her able to go to school with a smile on her face and sit in that little desk like the other kids in her class and  live her life the best way she knows how.

A bug bite. A little regular probably mosquito bite. And it was as if her body didn’t even recognize that it was fighting what was quickly becoming a massive infection. I’d be lying if i told you it doesn’t scare me a little bit for this winter.  I have NEVER wanted to live my life, or hers, keeping her away from living her life. I’ve never tried to keep her quarantined from things (although I like to think i make decisions in her best interest as far as when to go and when to stay home). I don’t make it a huge deal that my kid has basically no functional immune system. It’s just not how I’ve ever wanted to treat her or live. But my gosh…to see what just happened, it makes me stop and think. And overthink probably….

So that’s where she’s at. With currently a very minimally functioning immune system, but off the antibiotics and steroids for now (YAY!!!! Those drugs are brutal on her and I hate when she needs them, even though I am SO very grateful for them.)
We are still going up to Milwaukee once a week for iron infusions – I think we only have three more left though! After that course is done, we will re-run the labs and see if we have done enough boosting to let her coast for a while. My impression is that we have definitely helped her feel TONS better, and I don’t see the massive crash after a few days that we were at the beginning of the infusions. But I do wonder how long that will “stick” once we stop the infusions.

School is going…..well…..it’s going! It is becoming more obvious and apparent that there are some MAJOR lags in Kendall’s ability to keep up with the class – and while that is in part due to her needing to miss one day each week, it is in larger part due to the fact that she has ALWAYS had struggles with actually learning and retaining the information taught in class. That isn’t to say that she isn’t smart as a whip – cause she is! She can throw around medical terminology correctly and tell you about feeding pumps and IV pumps and discuss IV medications better than a lot of medical students probably. Yet – she can’t recall the sounds each letter makes and spell a word off the top of her head from her word wall list. She can’t tell you how to sort a group of like words. It is hard to put it into words exactly, what we see and observe, all I know is – she is struggling and I refuse to let her continue to struggle without some major help.
So next Tuesday we will be shlepping BACK up to milwaukee for all day neuropsych testing to determine what, if any, learning disabilities Kendall has that we can identify and hopefully help address. It isn’t like this news comes as a shock. Her doctor actually put in the referral for this testing LAST YEAR, but insurance has finally approved it and the clinic finally has an opening. While i know this will be yet another “thing” to add to the diagnosis pile, I am hopeful that at least this one we can attack. This time we can maybe help solve a problem instead of just minimizing damage.
This post is all over the place and I feel like there’s so much more I could say about where Kendall is at….or my feelings on the matter. But I’m sure they will come out in bits and pieces in other posts over the next month.

Thanks for sticking around if you’re still here. I hope to have lots more to talk about over the next few weeks and it’s so nice to know you’re listening!

Have a beautiful evening, party people. See you on the flip side…

Terra.

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