Friday, June 22, 2012

For Mama

Two days ago, you marked off yet another anniversary (37), eating at Kim Moon (not Daddy's favorite dish, but rather sushi, which he would have kidded you about), and then listening to a special young lady speak delightfully about her adventures in Haiti as a teacher to missionary children. Living together as Pastor and Pastor's Wife, you and Daddy spent countless hours side by side, snatching these quiet moments at favorite hole-in-the-wall restaurants or coffee shops between the whirlwind business of pastoring.

This morning, I tip-toed out of the house to the deck to breathe in some fresh air and while I drank in life from Scripture, I watched the birds and enjoyed my few flowers that I've miraculously kept alive since Memorial Day weekend. And then I checked my cell phone clock and realized a had a few minutes to soak in some poetry before my to-do list begins clamoring for my attention and the children wake, waiting to be loved on, read to, played with, taken to therapy and the library and a spina bifida family get-together. (Must remember to make those Oreo truffles...)

The book I cracked open this morning is Elizabeth Hun Schmidt's The Poets Laureate Anthology, and the very second poem I read, though "short and sweet," is one I want to share with you, Mama. This is it, isn't it? How life changes? How the journey is now? The poet said, too, that "poetry is about what can't be said," and yes, this is what is hard to explain to those who think everything is over after a year:

Your absence has gone through me
Like thread through a needle.
Everything I do is stitched with its color.

--W.S. Merwin

Monday, June 18, 2012

Finally, an update. This one: Pulmonology/Sleep Study

It's been nearly a year since I've posted, and my what changes to Blogger since last I logged on! It's so much less complicated than it was at one time. Maybe it will help me be motivated to keep up a little bit more?

On Memorial Day weekend, Madeline had a sleep study at St. Vincent's in Indy. Since she came off her oxygen last summer, we wanted to make sure that we hadn't jumped the gun. Her surgery to correct her kyphosis (severe scoliosis; hers was in her lower back) showed immediate change in her lung space, and even before we left the hospital, the Little Miss was hanging out at 98-100% oxygen saturation sans O2 support, compared to 88% or so pre-op.

I wondered how difficult a night it would be now that Madeline is almost 4. Yes, she can talk now (in paragraphs!), but I thought it might bother her more to be messed with.

But she handled it like an angel! She continually felt where the RT was placing the leads and tape and the wrap, but she chatted up a storm and played with the RT's name tag. (By the way, dear medical friends of mine, when you are in med school of any kind, do they have a special class on offering children name tags to play with and talking about the name tag and the picture and the pins on it? Goodness, the DOCTORS even generously unclip their badges and hand them over when she simply says, "What's that?")

The night went well. When I said it was time to lie down and sleep, she said, "Okay!" and promptly laid down and was asleep within minutes. I slept soundly until just before the RT came in to wake us to leave at 5:45.


The clean-up process takes awhile. There are so many wires and so much tape and so much gunky stuff (love my technical term?), and Maddy looked a little dazed, like she was wondering why on earth she only had 6 hours of sleep instead of 13. During the clean-up, the RT said she wouldn't be surprised if Maddy would go back to some oxygen at night.

{{Madeline during the last of the hook-up process}}

A few days later, we did indeed get a call from the nurse stating that Madeline exhibited mild obstructive and central apnea. They double-booked us for an appointment a week off, and asked us to make an appointment with neurosurgery (which is yet to come).

Last week, we saw Dr. Akanli, Madeline's pulmonologist and one of our favorite doctors. The little lady is a wealth of knowledge and she thinks outside the box, which I appreciate since Madeline's other factors have to be taken into consideration with any of her breathing issues. She easily includes me in the decision-making process.

Bad news first, right? (Daddy always asked, "Do you want the good news first or the bad news?" To which I always replied, "Bad. Save the best for last!") Madeline is having quite a few central apneas at night, lasting 15 seconds or so. She is having an average of 40+ brain awakenings per hour (which could contribute to her need for 13 hours of sleep at night). This means her brain wakes, even if she isn't fully awake. She has a base O2 saturation of 95, but frequent dips to 70s (140 or so during the night).

Good news. There is NO obstructive apnea as originally reported. That means that despite this bump in the road, her kyphectomy last year really did help her a LOT. On her previous sleep study her base was 88-92, and she'd dip to the 50s, almost all of it obstructive. We are beyond thrilled with the progress.

The plan: We will see the neurosurgeon in July to check up on Madeline's shunt and Chiari malformation, which is the brainstem being pulled down because of the myelomeningocele at birth (the spinal cord and spinal membranes in a sac on the back. If you visit the link, the picture of her sac is halfway down the post). There may be a shunt working intermittently (although we're not really seeing signs of this, as we did before her only revision), or the brainstem may be too compressed (for the life of me, I don't remember the signs from the last go-'round). Either would probably require surgery. Or it just be a neurological issue.

Dr. Akanli doesn't feel that O2 is necessary but that C-PAP would give her the support she needs. That in itself is good news. We're willing to do whatever it takes, obviously, but I'm not going to begrudge C-PAP when we've had to deal with huge oxygen tanks in the garage and a squealing and heavy portable tank weighing us down, let alone 75 feet of tubing winding through the house for us to trip over or sweep around.  :)

Thanks for sticking with this post! I'm so happy to actually be posting again that I forgot and gave you every little detail!   Thank you for your continued prayers for our little Maddy. She has had such a great year+ since her surgery last March. Besides getting her back straightened and getting off oxygen, she also got her first wheelchair, started preschool, and began talking (as I paragraphs!!!). She is a totally different kid than a year ago, and we're so grateful. Miss Maddy brightens our lives and that of everyone she meets. It's so fun to watch her go wheeling half way across the commons area at church to give someone a hug, and countless people get down on their knees in front of her to chat with her and give her kisses. We see, and you give us joy too.

Tuesday, September 13, 2011

Madeline Speaks!

Madeline has been making progress in the speech department! And frankly, if you think this one is good, just wait until you see the one coming up later this week! (This was posted on Facebook last week, so to those of you who don't "do"'re welcome!)

Untitled from Pam Asbury on Vimeo.

Monday, September 12, 2011

Riding the bus

One of the hardest decisions I had to make regarding Madeline's schooling had to do with transportation. Bona Vista is about 10 minutes away, if that. I was encouraged by other friends (and really good mamas) to try it. Their experience was that their special needs kids really seemed to like it.

I'm very glad for the peace I felt after praying (and worrying, of course, since I am human after all) about this, and a few weeks down the road, I'm so grateful we decided to try it. Madeline did not do well at all the first few times, and I think it was the noise of the bus, since the poor little girl hates loud, unfamiliar noises (and some familiar ones too). It could have been separation, but since she wheeled right into her first day of preschool and hardly glanced my way when I left, I'm not so sure that was it. She was sobbing when I got her off the bus, but after another day or two, the tears subsided and now she smiles when she sees the bus, rides the lift, and sees the few little tykes on the bus.

Her bus driver has made the experience easier as well. He's a pastor who has a very kind heart. He checks on the kids in between stops and often tells me what Madeline is doing before I get back to her car seat. Madeline has a very short bus ride, but I often find her sound asleep and she smiles broadly at me when I wake her up.

The other benefit to sending Madeline on the bus is that it is so much less a disruption to our school day. It takes about an hour to get her bathed, diapered, dressed, fed, in her wheelchair, bookbag packed, and on the bus. I would take another whole hour or more out of our day to load her with her sisters into the van, drive to school, get everybody out and into school, check in with the teachers and other beautiful children and/or mamas, load back up and come back home, and then do it all again in such a short time.

Ok, all that rambling and finally the pics! (Remember, this is before she got her new chair!)

Tuesday, September 6, 2011

First Day of Kindergarten and Third Grade (September 1)

I simply couldn't decide which pics to post, so you get them all! :)

Had to point out that small pile on the sidewalk behind Olivia. Guesses anyone? Okay, I'll tell you. That's a mushroom Livy found, unbeknownst to me. She got a knife, unbeknownst to me, and cut up the mushroom on the sidewalk...unbeknownst to me. :)

*Signs from HowSheDoes

Thursday, September 1, 2011

{this moment} First day of school

Joining SouleMama for {this moment} - A Friday ritual. A single photo - no words - capturing a moment from the week. A simple, special, extraordinary moment. A moment I want to pause, savor and remember.

Tuesday, August 23, 2011

All about Dex

Two weeks ago tomorrow, I received a text from Dex inviting us to his annual cookout at his clinic (Step 'N Stone Physical Therapy Solutions). OF COURSE! Filipino food? Yes, please. Seeing Dex after too long? Never mind the fact that Madeline had to be in school very shortly after the party started, we were going!

Dex was Madeline's physical therapist from the time she was just a few months old until he stopped doing First Steps to focus on his booming clinic, about a year an a half ago(??). Madeline adored him (the rest of us did too; did I mention he brought us an entire Filipino meal once?), and we were all very sorry to see him go.

Funny story: On his last visit, Dex told Olivia and Carli the reason he could no longer come to see Madeline is because "your mommy fired me." Doesn't matter how much Dex and I have told them otherwise, they never remember the real reason. As we walked across the lawn to the picnic, Olivia said, "Mommy, why did you fire Dex?"

So all that to say, here are the pics of Dex and Madeline. I just had to put all three up here to show you Madeline's antics.