Hello, Society. We're Back. Ish.

It’s been a busy few weeks.  Aida & I spent the week before last at Grandmommy & Grandpa’s, managing to visit friends nearby, family not as nearby (but at the zoo!), take the customary pumpkin pictures (in the mountains no less :) and do a few projects around their new house.  Also, Aida cut her first tooth. She’s tough and all, but geeze…I’m not excited about doing that over and over.  Mark said he hoped we enjoyed the week-long trip because it wasn’t happening again.  :) We tried to Facetime with him one night, but it FREAKED Aida out.  It was funny for us, sad for him & possibly traumatic for her.  She could see him & hear him, but he was NOT there. WHAT WAS HAPPENING?!?!? Anyway, we flew home on Monday, I started my new job on Tuesday, went to clinic on Wednesday and was been trying to catch up and keep up before a day at church and then “work”…also at church.  :)

Clinic last week involved our bi-weekly chemo treatment (30 second injection into her line) + 2 hours to see the doctor, sit around & wait.  Her numbers continue to be good, so everyone continues to be thrilled.  In fact, pending confirmation from imaging, we were scheduled for chemo in FOUR weeks - not two.  Very good news. Our doctor was giddy.  After clinic, we went downstairs to radiology for ultrasounds of her liver & brain.  The fontanel is closing in, but for now they can still see the lesion from there.  Before too long an MRI will be required.  It’s just as well though since she’ll need one to see the lesions on the bones anyway. She ended up having an x-ray of her belly as well to check the location of the PICC line that runs from her leg to her heart-ish area.  She grows, but the line doesn’t, so we have to be sure the medicine is still getting where we want it to go. Apparently it’s fine because until this moment I didn’t think about the fact that no one said anything about it afterward. 

What they DID say was that the lesions are “stable” with “no change to slight decrease in size.”  I take that to mean the change, if there is any, is so small it’s impossible to tell precisely on a squirmy, sometimes screaming, tired baby.  I would have loved for them to say, “Look at that.  They’re gone,” all nonchalant-like.  They didn’t, but I’ll take “stable” any day of the week. All that to say………we are now on a MONTHLY chemo regimen. AMAZING.  In the mean time, Aida is in the middle of her post-chemo cruddy feeling (only like a 3 or 4 out of 10). But then there’s the teething, so who can tell. Also, we’ve been trying new (real) foods, which has been entertaining.  Today she had avocado.  Sort of.  She spewed most of it back out of her mouth before gagging.  Last night we tried banana (because she likes banana baby food), but she gagged.  In said post-chemo cruddy feeling the gagging made her spit up.  It was pretty funny.  Well, it was funny to me since she was sitting on Mark instead of me, and she was no worse for the wear.  Just think…this time next month we’ll be saying, “Oh, yeah.  I forgot what these few days were like. This is lame.”  Because it will have been SO LONG AGO.  We still have to go to clinic every two weeks to get the dressing on her leg changed, but that’s no big deal.  She hates it but not because it hurts.  It’s more a “LET ME GO! LET ME GO! LET ME GO!” sort of situation than an “OWWWWWW!!!!” It only takes five minutes.

I’d like to pause here to say “kudos” to the PICC line for being so fantastic, infection free & long-lasting.  Gold star, PICC line.  Gold star. We will not miss you when you are gone…which could be only a matter of months.  Lord willing and the creek don’t rise.  Actually, the creek can rise a bit if it wants to.  When the PICC line is gone Aida can finally just “swim” in the creek.  More importantly, she’ll get to have her first REAL bath! Oh! I should also mention we’re heading to Cincinnati in a few weeks to visit our awesome doctors there and have the MRI to see the bone lesions.  I can’t wait for them to see how UH-MAZING she is doing.

I’m already getting long, so maybe another day I’ll write a little more about the miraculous, new job.  It really is going to be great.  Before starting I felt like I was going down a slide, knowing it was the right direction, trying to slow myself with my feet and hands like a little kid.  After all, sometimes a slide is fast and fun and you land on your feet.  Other times you get all static-y or get slide burn or bust your butt at the bottom.  So far, it’s been really amazing.  Parts of it feel very familiar, and other parts - like the MacBook - feel very new.  I’m an iPad, iPhone wannabe user, but the real deal is going to take me a little time. I’ve already researched shortcut keys and had to Google a lot of basic things, but I’m getting the hang of it.  The most troubling part for now is definitely the challenge of getting 6 hours a day in at home.  Here’s hoping we’re in a good rhythm soon. 

And now just for fun…A friend of mine met Aida for the first time while we were in SC, and Aida got all excited - panting like a dog.  I’m serious.  She pants like a dog – tongue and all.  Anyway, my friend said, “That’s not in the blog.”  So now it is.  Also, for your viewing pleasure because I can’t wait any longer…meet Batgirl.  Nananananananana Nananananananana Batgirl!

I’m off…struggling to keep my eyes open at 9:15p.  Photo essay coming very soon!  Please continue to pray for our family and our little miracle.  It will still be a while before these bad boys are gone, and though the risks/consequences are less serious compared to our previous worries, they can still cause problems. Please continue to pray for all of us in this transition time for me.  I wasn’t exercising before, but now I’m REALLY not exercising. :) Ha! Playtime with Aida may need to involve lunges & sit ups with her strapped to my chest. And as always, among all the other usual stuff, pray for continued provision.  God has been amazing thus far, and we continue to live by faith. Thank you to those who are sacrificing on our behalf.  You are all unbelievable.  We will pay it forward one day…or possibly pay it “back,” I guess, if that were the way the cookie crumbled.  :) Know that we seek God for wisdom in our finances and work hard to be good stewards of what He has given us. Thanks also to those who encourage endlessly and to those who have never met us but are praying anyway.  Amazing. We love and appreciate you all.

The News

I've been doing some writing but haven't finished anything because I've been a little distracted. :) I'm going to be traveling this week, and the day after I return, I start my new part time job! It suddenly feels like summer is ending. I'm trying to cross out all the projects on my to do list before everything changes! It's a miraculous arrangement really. I'll be working for our church - primarily from home. I'll spend Tuesdays at the office on a regular basis to start. A mom friend will be keeping Aida at the house for us which is amazing. Ultimately, I'll be having lunches and other meetings, but Aida should be able to come with me for many of those, I hope. She is an incredibly good baby (knock on wood), so she's easy to take along. 

I'm probably disproportionately worried about the changes. Six hours a day four days a week (plus Sundays), three of which are at home, somehow feels like the dream life I've been leading is ending. It's not, of course, but I'm freaking out a bit. We couldn't get a much better set up, but like I said, it feels like summer is over. That said, we're very grateful. Last time I wrote I mentioned having a meltdown then God showing Himself over and over.  One of those showings came in the form of an email from someone at the church asking if I might be interested in a position they had available. Just days before I had blubbered on the phone to Mom about not knowing what the next step was. I didn't have any idea. This time though, I didn't have to know. It just appeared. That almost never happens. 

So the change is here. Aida will be just fine and will hardly know the difference, so please pray for ME :) Aida is doing well (though not yet sleeping through the night. :) I was hoping to have had imaging this past week, but it isn't scheduled for another week and a half. THEN - assuming all is well, and we're pretty sure it is - we will be able to space chemo a bit farther apart. For now, her numbers are pretty good. They bounce around a bit, but it seems only one drops at a time, comes back up then another drops. More importantly, the drops are still in normal range for the most part. It's hard not to be a little concerned when watching so closely like we do, but we've been in pretty good shape for a while. Praying that continues! And seriously, pray for me in the transition. I'm not TOTALLY freaking out. I'm just mostly freaking out. 

And coming soon...I'm finally working on something of a photo essay. I've been pretty good lately about not wanting/needing to hide the exposed tumors when we're out, but I haven't really been ready to "publish" them. Of course, on occasions when the little tumor on her toe has been visible, I've felt badly for unsuspecting people who don't know how to react to the (basic) answer of what they felt was a simple question...and felt annoyed as Mark was given recommendations for alternative therapy to the chemo poison we're giving her. :) I'm sure they all mean well. Anyway, many of the people who have met Aida have seen her in all her glory, and I know that many who know her story are curious. Somehow it feels better in person, but we'll never see all of you in person. :) Besides, at this point there is a progression to see which I'm anxious to share. So! This week when I have access to a computer that moves faster than a snail's pace, I'll get it put together. 

Until then, time to get to work on that to do list!