I am freezing cold.

Just so you know.

It is the end of april and i am sitting inside my house and i am freezing. I know that in about a month (hopefully less) I will WISH i was freezing again. But for now it is making it hard to type because my fingers feel frozen.

I can’t believe its been two weeks since my last update! WHERE does the time go honestly?

Really – there hasn’t been much to report on the Kendall front – she is her same usual up, no down, no sideways, wait – which direction is she going??? – *sigh*. But at least we are home and I have not been on ER watch in a long time. That is a great feeling. (Although, this may be due in part to the fact that I have realized that the ER is really not going to do much for her that I can’t do at home short of lab draws and IV fluids…)Whichever. We’re not there and that’s what matters!

In spite of my best efforts to get her off of needing the daytime O2 (oxygen), she continues to prove me wrong. We will get one good day in, then she’ll be just a little off so i start her back on it the next day. Then maybe we’ll have two great days in a row, and day three she is back to her crazy antics and back on it she goes. I am able to stretch the hours between her daytime “bursts” of oxygen, and haven’t had to lug a tank around with us on errands in almost a week. So that is a huge praise! It continues to frustrate me though that there is SUCH A night and day difference in this kid on such a SMALL amount of oxygen. I just do not understand WHY does her body think it needs this boost so much? And yet I can’t argue with the results.

Nor can anyone who sees her consistently. Her therapists all constantly comment on how vastly improved she is on the oxygen. Not that any human being WOULDN’T respond to oxygen therapy, but WHY does a baby who isn’t really that super active to begin with need this in order to have two good hours of playtime, or even just awake time?  these two pictures aren’t the best at showing the difference, because sometimes its not even a visible appearance thing – its more in how she is breathing, or the energy level she seems to have (or not have). The brighter one is clearly with the oxygen on – and it was just such a great example of how bright and shiny her eyes are when she is on the O2.  the second one is about two hours off of O2, which is kind of when she starts to head downhill. And in addition to the tongue hanging out of her mouth (isn’t that attractive?), it was the way her coloring was just “off”, and the work she was doing to breathe. But again, its so much more than just can be captured in a picture.  I know I need to stop questioning and just accept that right now, this is Kendall’s path. She has been healed of SO MUCH – and yet I continue to want more! I look at where we were at this point last year, and I know that God has saved kendall, has rescued her, has given us more time with her and will continue to uphold her and strengthen her as He sees fit. And I am trying to find my comfort in that. The days and hours ahead are not for us to know. The trick is to be able to fully enjoy the present. the RIGHT NOW.  Such a seemingly simple concept…

So that’s that. She is doing okay on the oral abx (the Omnicef). I am still not wild with this as the choice for her prophylactic antibiotic to keep her UTI’s at bay for the next 2 years (at least) for a variety of reasons, but for now, I am ok to keep my mouth shut and see how SHE does with it. I had to go get trained on how to mix up the med at home from our pharmacist yesterday, and do thank God that our very own friendly neighborhood pharmacist (whose cat happens to love hiding under our back porch!) lives down the street and will help walk me through it. I mean, it’s not rocket science, but its just one more thing in the slew of things I have already had to learn how to do for kendall quinn. That came out sounding more complainy than I meant for it to be. I am not complaining. i am just sometimes taken back by all the medical stuff i do on a daily basis and I think “ME? – the one who failed out of 3rd grade level math in 7th grade??? The one who can barely tell time on an analog clock? The one who trips over lines in the floor? I am responsible for keeping this baby alive and healthy???” So yeah, maybe I shoulda sent Ben over to the pharmacy instead of me…

This Friday is her “due date” for another UTI based on the past few months’ history, so I am probably a little overly hawk-like in my watching of anything off of baseline for her. and I know that no matter what I do to try to catch something, she is going to do or get whatever her body is going to do or get, and I cannot stop that. So I am trying to ignore the sudden onset of swallowing issues, diarrhea and wheezing that she is having today. I am sure there is an explanation out there, but I can’t sit and stew over what it might be all day long. It will either turn into something or it won’t. But it does make me roll my eyes and say “fan-freaking-tastic – she’s choking on peaches and wheezing like she’s got a whistle in her mouth. who wants to run to target and look at new shoes with me????” (because my alternative is to ignore everything). So far no super smelly or concentrated pee though, so the other shoe is still hanging nicely in the air. For now.

In other news, we did survive our big Parent Dance debut this weekend! some of you may not know that I am now an aspiring hip-hop artist. Justin’s people will be calling me ANY DAY now begging me to come be one of his backup dancers and I’ll be all “no no no, I could never show him up on stage!!!” (hush now, those of you dying hysterically of laughter. let a girl have her dreams!!)

No seriously – a good friend dragged me into hip-hop class one nite at our girls’ dance studio in spite of my protests that I was in NO WAY going to make such a fool out of myself. I ended up loving it. The instructors there are SO very talented at being able to break things down not only white girl style, but old people white girl style. So…on the show we progressed. We have practiced a minimum of four hours a week since early February, and last weekend we crammed ten hours of practice into the two days before the show. AND WE WON!!!! (nevermind the fact that we were the only contestants in our age division – “20 and up”). the point is – we all had to face a fear of some kind in getting up there and performing it. I was so proud of myself for doing it – and SO very thankful that ben was willing to drag all four girls down to the theater just to watch their mommy dancing on stage like a mad fool! We have one more “competition” in May (on mother’s day, fittingly enough), and then our big end of the year show in August. It is definitely a workout though! So watch out – anybody tries to step up to me they will find out – NOBODY puts Baby in a corner! I will busta move! I know you are all dying to see this dance on video – a professional company puts it all together and you have to order it through your dance studio and blah blah blah – As soon as I get a copy of it – I will find a way to post it on here. To share with the world my amazing new talent!

the other three girls are all doing well. Kealey is just flying through these last few weeks of second grade with some amazing speed – her teacher is constantly trying to find new ways of challenging her (for which i am SO grateful – I know its a rare quality in a public school teacher!), and Kealey continues to just go above and beyond what is asked of her. She DID manage to lose her ballet shoes a few weeks ago (yeah, add that to the stress of karissa’s missing shoes and you can see that i am headed the right way for a bunch of blood pressure meds) – so she is currently working those off with lots of little extra chores. She is reading anything and everything in the house (reminds me of an 8 year old me!), and is just such a smart girl. Karissa is likewise making impressive strides by being FINALLY able to write her name. She also knows somebody’s phone number. I am not sure if her teacher just gave her the wrong number on their practice sheets or if the office has our number listed wrong or what. but its not ours and i have no idea whose number  it is, but if karissa is ever lost, she will be calling them. This could lead to problems down the road I realize, but for now, I am just happy that she has stopped spelling frog like this “f.u.k.”, and we are still working on the non-shortening of words like “t.i.t.s” (=tootsie roll) and “jack-off” (= take my jacket off). It’s the small things with Karissa, you know? She is a dancing phenom though. I have to get a video of her “popping, locking and polka-dotting” because i swear to you this girl has to have like 5 vertebra missing the way she can just bend herself in half. Her dance teachers are constantly making her do it in front of other classes because she is just so crazy to watch! and Kaylen…dear, sweet, hurricane Kaylen….She is asleep right now and that is about the best choice she could have made today. Seriously – she is a good kid. she is just SUCH a burst of energy that is hard to contain or re-direct when she doesn’t get her way. Eats non-stop, is learning her ABC’s (may even possibly know them better than Karissa), and is working on the potty training. The problem is that she actually prefers the feeling of the Dora “heelups” (pull up training diapers) over underwear so we are fighting an uphill battle here. She CAN hold it and make it to the potty, but most of the time just doesn’t want to. She is doing great with the potty training overall though, and for all that i have to do with kendall and have not been able to devote to consistently training kaylen, she is doing amazing. I am betting that by her birthday in July she will be all the way there. (and i am sorry i have no idea why i have no pictures of karissa. she’s usually the first one jumping in front of the camera!)

 

I think that’s it. I could update you on all the fun milestones Ben is also hitting…but I think I’ll let him start his own blog for that.

So there’s our two week update. Hopefully its not another two weeks till the next one! (although in some ways that might be a good thing because it will mean we probably aren’t in the hospital!)

thanks for checking up on us!

 

t-crest