Wednesday, April 28, 2010

The long-awaited update

As I was so kindly reminded recently, it has been a while since Jack's blog has been updated.

So, what has happened the last year? Honestly? Not much.

Since the conclusion of casting in December of 2008, scoliosis was on the back burner. The brace was updated regularly with scrapbooking stickers, featuring everything from Mickey to Toy Story. Last May we celebrated the end of this journey with two of the forbiddens - sand and water - when we took a Disney cruise to the bahamas. Jack loved the crystal blue bahamian water and was treated like a prince at every meal.

It wasn't until recently that we began to notice the brace was significantly tighter. The orthotist left the straps and the body of the brace oversized so that there would be room to grow - and grow Jackson did. He was 43" today at the same orthotist's office. (and 39 pounds) Our local surgeon is kind enough to work with Dr. K in Birmingham and get the appropriate x-rays in digital format so that we can email back and forth. (What did we do before technology?) Although local doc's all booked up, they were able to put in a radiology order at the children's hospital. We bypassed the appointment, went directly to go, did not collect $200...

While we waited, the radiologist was able to burn the images directly to a disk with the new equipment and we took the disk today to the orthotist. Apparently, they were one step ahead of us because his local doctor also emailed the images directly to the orthotist's phone this morning. I'm telling you - I cannot fathom facing a condition like this without the benefits of technology.

While we've put in a call to get the numbers, I managed to calculate the cobb angle myself. I believe what we're looking at, as seen above, is a 7° reduction in curve! Now, there is a 5° margin of error. But, I'm telling you - this is correction in the providence. Of course, 43° is still not good. But it's below 50 - the mark of a surgical curve - and Jackson is now 4. He has no instrumentation, no growing rods, no surgical scars. Each month, each year is a victory as he grows closer to skeletal maturity and the inevitable fusion - a road we will cross, with the grace of god, years from now.

The new brace should arrive in three weeks (knowing K, it'll be more like a week) and Jackson chose "trucks and cars" this time. I'll do my best to update you when we have in-brace numbers and thank you for keeping us all in your thoughts and prayers. It is hard to believe this June will mark the third year since his diagnosis.

Thursday, April 30, 2009

Tumultuous Spring

A lot to catch up on, not a lot of time.

Here's the CliffsNotes version:

Investors pulled out after unleashing a mushroom cloud of demands including committing malpractice, lawsuits threatened, nastiness ensued. Epic fail.

Appointments. X-rays show a potential relapse to around 50° standing, around 40° supine. Dr. K sees the x-rays and says they're stable. Dr. D says he needs to be in a day brace 20 - 22 hours a day. Still undecided here. Waiting for another x-ray in May or June (another 3 months out from the first) to make our decision.

Unemployed. A flurry of applications, calls, begging and pleading result in assistance where needed and a bit of calm.

Application. Over 500 resumes, four states, 6 interviews (three face-to-face) and zero opportunities. Defeat?

Partnership. Previous colleague also has solo practice, joins forces and strikes a generous deal whereby we stand to profit from many cases in the works.


Vacation. In a bizarre twist, vacation starts tomorrow. When everything was paid for, we had no inclination this would happen. When the investors reneged, we had no idea that several months later, we'd still be in this position. Everything but the food was pre-paid at the lowest possible rate. Now all we have to do is show up and cover meals. With the villa having a kitchen, we should be okay. And, you know, after the last two years - I think God is saying, "TAKE THE VACATION!"

Thanks, God.

Monday, February 23, 2009

You know how some people get itchy feet?

When the sun is shining, when a plane flies over head, when you see the images of somewhere tropical and you just want to leave, now?

I get that, too. But, with a trip on the horizon - our celebration trip - I'm feeling somewhat content to be here.

However, I also have that restless feeling inside me. That feeling that something is unsettled, out of sync, shivers through me. I have a feeling of discord about the house. It's nearly spring cleaning time and I wish the weather would cooperate. I know I've said this time and time again, but I continue to feel that our home is just our things placed in another person's house. I don't feel like it's together - that things are "just so" and go naturally with the space. There are pieces of it coming together - the dining room is mostly done, the girls' bedroom is complete (still need to clean out their closet - we don't use it for clothing, but it bothers me that there are random things shoved in the nooks and crannies from the girls). I am ready to pack away winter clothes, christmas skirts, winter coats, and boots. I am ready for sandals and sundresses once again and I know that we still have at least six weeks of this cold weather. I have an urge to purge - to phase out, to simplify, to pack away and organize. But the task is too daunting to begin at the moment. I need more mental clarity for such a huge undertaking.

There is so much to do before our post-casting cruise, but mostly, the feeling, I think, is anticipation. There are milestones to get through before we leave. First we have a series of dental appointments for Jae, who needs her spacer installed and another set of fillings and sealants. Then, the appointment. The x-rays. The information we need. And the day that sends my stomach instantly into a fit of knots.

A month later we have Easter, which, honestly, I feel is just something we have to get through. It's not one of those holidays that are super magical for me, but I try to not let my own feelings color the kids' day. They like it. So, we will dye the eggs. We will hunt for eggs. We will get baskets and put on dresses and smile and take pictures. And all the while I will be screaming inside, like a little child, "Is it time to go now? Is it now? Now is it?"

Piper's 5th birthday is the next Friday. I have to consider the possibility of combining that with Easter, since family gatherings tend to be hard to coordinate some months. It would certainly be easier if we could do it all at once. And she won't mind. (Plus, hey - I won't have to come up with treat bags if there are plastic eggs filled with candy) :)

The day of her birthday, she'll want to go to Starbucks and get a special drink. It's part of our ritual. (Otherwise they want a cocoa every time we drive through). They get something big and whippy and sprinkled and it always brings a smile to my face to see them offer others a drink even though they don't have to. Then, she'll want to see a movie. Up until this year, we really never went to a theater. Sure, if my Mom came in town and she and her husband could each take a kid, then we would each take one, and there would be one who could manage on their own - then, maybe we could actually watch a feature length film. But, not on our own. There are questions about plot and characters and storylines. There are requests of more popcorn, more peanut butter cups, another drink. There are complaints of not sharing, leaning on the arm rest, the youngest wanting their seat. And, of course, the dreaded - "I have to go to the bathroom."

We politely sit to the side, near the exit, so that when the baby cries, when the toddlers fuss, when the preschoolers have to go pee, we do not disrupt the theater. We buy five kids packs so that there is no fighting over tiny bags of popcorn or tiny drinks. Peanut butter cups are evenly distributed and Dad is on baby/toddler duty while I am on bathroom shuttle duty. So, you see, movies are not exactly fun for us now (not to mention insanely expensive! Since when is a friday night feature film $9.50?)

It is rare that we go to the movies on any night other than a birthday night. In years past there was a nursling or a toddler who could not, would not, sit still. So, the birthday child would choose a parent and they would have one-on-one time at the theater, treated to their own bucket of popcorn and their own soda and their own bag of peanut butter cups or junior mints or sno caps. But, as is usually the case, Jae bends the rules. This year she wanted everyone to go. And, so we did - to see Coraline 3D. And we reached a milestone that night. Our kids are now old enough to go to the theater together! We had no fighting, no crying babies, and we actually got to watch (okay most of) the movie. Jack was a little antsy by the end, but considering the fact that he is just two and a half, it was to be expected and I think we managed it well. So there is little doubt in my mind that Piper will choose a family movie outing, instead of family movie night, for her birthday.

And then, one week later, we leave. It is my hope that the coming weeks will go quickly, similar to the season from Halloween to Christmas, where one event leads into the next and before you know it you're on your way. But, time will tell.

Wednesday, January 21, 2009

Quick update

Pulmonology - all clear. Come back if anything changes, if his curve increases, etc.

Opthamology - abnormally near-sighted, but not enough so that it requires correction at this age. By 5, he will need glasses. No sign of the neurofibromatosis markers in his eyes. Still no answers, definitively, in that regard. We will watch and wait.

Had to cancel and reschedule the orthopaedic surgery clinic appointment. I presume Dr. D is traveling again. So, we will see him again in March for a follow-up to check the brace. But, my gut? Momstinct? It's good. He looks good - rotated, but not deteriorating in curvature.

Friday, January 02, 2009

Jumping Jacks

I admit that sometimes, at the end of the day, my kids don't know what to do with their own energy. So, in a gesture of kindness, they share that energy with others by resting their hands oh so carefully upon their sisters' heads, legs, arms, etc.

And, by carefully, I mean not carefully.

And, by resting, I mean smacking.


When they get to the point where they simply cannot resist full throttle running toward someone, doing a body slam into their legs, and then smacking, there is a new consequence to their action.

Jumping Jacks.

Worry not, dear friends. I do not allow them to run across the room and attempt to leap over their brother (who, frankly, isn't much smaller than the two youngest girls).

Nope, this is good, old-fashioned, elementary school gym class calisthenics.

Always the homeschooler, I one up myself and make them count aloud as they do a hundred in the living room. Tonight's Fonda-ettes were PJ and the littler mouthy one. It went something like this:

One, two, three, four, five, six, seven, eight, nine, ten...

eleven, twelve, thirteen, fourteen, fifteen, seventeen, eighteen, twenty

twenty one, twenty two, twenty three, twenty four, twenty eight, thirty

thirty one, thirty two, thirty three, thirty eiiiiiight...


Clearly, we need to work more with these two.

Monday, December 29, 2008


outside, that is.

The sun is shining and I am positively salivating at the thought of spring afternoons to come. We have months ahead of sub-freezing wind chills and inches of snow and ice. But, today, I am ready for spring.

We received word yesterday that Dr. K was in receipt of the in-brace x-ray and measured 18-20°, K, the orthotist, measured 17°, and Dr. D measured 22° - so all are in the same ballpark.

Excellent. Just excellent.

As I sit here waiting for the scramble of finding jackets, tying tennis shoes, and devouring apricots to commence, I am in awe of this little boy before me. This child, no longer a toddler, in his first pair of jeans (unable to be comfortably worn with braces and casts that filled his first two years). His black and white Vans, read to run the grass-filled backyard that terrified him as a child. His sweatshirt zipped, hood up, protecting him from the cool wind.

I remember that night in Chicago, dreading the months ahead. That tiny baby asleep in the travel crib, unaware of what was to come. It seemed like an eternity ahead, no proverbial light at the end of the tunnel. A whirlwind of fear, dread, uncertainty, and risk clouded my mind. In a sense, we feel like we lost so much time with him as a toddler. But, in reality, the journey was well worth the child we have gained.

Tuesday, December 23, 2008

Too much Christmas shopping?

Mom: Do you have any kisses for me in there?

Jackson: No. I have anymore.

Mom: You don't have ANY left?

Jackson: No. Go Target and buy some.

Mom: You went to Target to buy more kisses for me? (Nods, quite pleased with himself) How many did you buy me?

Jackson: Two!

I spy



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