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.
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