Jack's Curvy Journey

The long-awaited update

2010-04-28T18:12:00.000-07:00

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.

Tumultuous Spring

2009-04-30T09:14:00.000-07:00

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.

Patience.

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.

You know how some people get itchy feet?

2009-02-23T07:59:00.001-08:00

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.

Quick update

2009-01-21T18:05:00.000-08:00

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.

Jumping Jacks

2009-01-02T17:20:00.000-08:00

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.

Hard.

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...

eighty.

Clearly, we need to work more with these two.

55°

2008-12-29T11:12:00.001-08:00

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.

Too much Christmas shopping?

2008-12-23T19:12:00.001-08:00

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!

The Brace Story - from the beginning

2008-12-21T09:03:00.000-08:00

We picked up the brace on a busy Wednesday afternoon. Already in the area, we called K to see if it was ready. To our delight, they said to head right in. The fitting went well, except that Jack was exhausted from the day's events and generally doesn't like being messed with. The bad news was, the company didn't embed the design Jack requested - so his "tractor brace" was just a white brace.

It seems so long and K explained that it will allow him to grow in it, hopefully for a year or more. It went right on without issue and the only trimming necessary was a small spot near his thigh so that he can sit up if he needs to. (But he should not be sitting or standing in it.) Within just a few moments, we were on our way with a new, handy dandy, removable turtle shell and a snuggle bug boy who can run, breathe, climb, and eat like a typical child.

Apprehensive about the efficacy of the brace, knowing stories of worsening and improperly fitting orthoses, I was hesitant to rejoice this new move. The next available appointment with our local surgeon was the 18th, which was an agonizing week away. K assured me that two weeks out is the standard to check a brace's function and one week would be okay, but I kept doing the math in my head. One week for the first brace, plus one week of waiting for an x-ray, plus another week of manufacturing = three weeks out of the cast. I was a nervous wreck when I allowed my brain to consider all the possibilities and terrified of backsliding. But, I kept my cool and before we knew it, the week had arrived of his appointment. The week of adjustment into the brace went well. We had built it up as something for big boys, a cast that he could take off in the morning. The first couple of nights he whimpered and whined about putting it on, would cry that it hurt initially, then say, "That's better." We decorated the cast with the clear-backed scrapbooking stickers. He chose Mickey (but we also have Buzz, Woody, and Nemo waiting for their day in the sun.)

Then, as should be expected by this point in our lives as parents, kids started getting sick. Then, the weather forecast was grim. Oh, no, not just fluffy Midwest snow - ice. The dreaded slippery, sleety, miserable, black ice creating freezing rain. Jae had phase II of her pediatric dentist appointments the day before, scheduled to get her crown, sealants, and some fillings. Since we rescheduled that once already, we didn't want to prolong it any further and John said he would take her alone. The roads were slippery, but the freezing rain was supposed to start at midnight. We dreaded it, knowing if we cancelled the appointment, we'd be pushed out perhaps until January. I looked at local radiology centers, thinking maybe we could get our doctor to order one over here. And, we waited and watched the weather radars over and over again.

There was no time to think about it in the morning. The alarm went off early and we scrambled to get everyone dressed and in the car. Skylar had been feeling better. That is, until someone gave her a huge cup of filtered water. Dehydrated, she chugged the entire cup and back out it came. I was delegated to car duty, and stayed with Skylar, Jameson, and Piper. John went into the hospital with Madison, who is old enough to hold Jack still for x-rays if need be, and Jack.

The appointment went well, I'm told. Initially there was some dispute about the x-rays. The staff insisted that they had to do a standing x-ray because that is protocol and that's how they "always do it." Obviously, Jack is in a Providence, night time, bending brace. Logic dictates that it would not be effective standing, nor is it easy for him to stand in the brace. But, John complied and allowed them to take (unnecessary) films that showed no correction. His cobb was 34° (anywhere from 29 -34°) and that's pretty much what has been out of cast this summer.

Once John got in to see Dr. D, he was able to get a supine (laying down, face-up) x-ray in the brace, as K requested. We got it on disk and I emailed it as soon as we got home, then printed it to calculate the angle of his curve. It was plain to see that there was improvement, but I was anxious to have numbers. Ultimately, we calculated and then learned from Dr. D's office that the Providence is holding his curve down to 22° - which is pretty much what we were seeing in the casts. VICTORY!!!!

However, there is another story that is even more worth mentioning than the numbers above. The meeting with Dr. D went incredibly well. One of the first things he told John was, St. Louis Children's Hospital is now doing MEHTA CASTING!!!!! He said this development was largely in part to us and bringing this method of treatment to light in our community. I get chills just remembering the words. They have a proper table and when we were trying to get an appointment with Dr. D, he was traveling - because he went to Salt Lake to train with the renowned Shriners doctor out there (the one we tried to see this summer and ultimately decided against). I first found Dr. D online this past year, around February. His published studies were impressive and his work with children who suffer from club foot seemed perfectly aligned with the early non-surgical intervention of Mehta casting. We tried and tried again to initiate a training seminar here, to no avail (through no fault of Dr. D's). I had pretty much given up hope that it would ever happen here and we continued with Dr. K instead. So, to hear that this has all come to fruition was just surreal. He mentioned that he had a case coming in that afternoon, and another next week. The fact that no other family will come into that office and be told that their child would suffer a lifetime of surgeries based on an inaccurate diagnosis. Well. It's beyond words. Every moment of the last 16 months, the hours on the road, the NPO orders, the sleepless nights, the tears, finances, advocating, and researching had all burst through the ceiling and turned into the most beautiful thing. Jackson's life, his condition, were no longer without meaning. He paved an amazing way for dozens, perhaps hundreds of babies behind him. And, that, above all else, is deeply profound.

Great update

2008-12-15T09:44:00.000-08:00

We've used scrapbooking stickers (the kind with the clear background) to decorate the brace. Jack chose Mickey for this one. We also have Buzz, Woody, and Nemo waiting for their day in the sun. Here he is, just waking up, this morning. He's doing so great with it - willing to get right in when it's bed time and he doesn't seem too uncomfortable while sleeping anymore. :)

Today

2008-12-10T07:15:00.000-08:00

is brace day.

Not much time to write - busy week - Mom's in town.

I'm nervous. Let's hope it works and that he sleeps in it comfortably. As comfortably as can be expected.

They called yesterday and the brace was wrong. It's plain white. No one ever added the print at the company. So, Jack will surely be sad to see that there are no tractors on his tractor brace. :(

Not a good start to this.

We're home!

2008-12-03T14:38:00.000-08:00

The appointment went SO well. Our decision to go with K was completely validated. He was *awesome*.

He knew all the names of the major players in infantile scoliosis. He was well-versed in the treatment of thoracic curves. He wrote the freaking manual on the use of orthoses to treat scoliosis! He said, were it his child (which he says he's asked almost every day) he would use a providence and a day brace, for adolescent. But, if his child was Jack's age? He'd absolutely just use a providence because we need to account for rib cage expansion and, more importantly, lung expansion and development.

His cast saw was accidentally taken home last night, so we had to wait about a half hour while the resident ran to the other building to pick it up. It gave us a great opportunity to share information, discuss who we knew in the orthopedic community and their opinions on treatment, what Spinal Tech said about Jack, Birmingham, and the Providence brace - just, everything.

It was so, so great. K is friendly, approachable, flexible, you name it - everything a healthcare provider should be. In addition, of course, to being tremendously qualified. He, and the first orthotist we saw when Jack was 10 months, are the primary "spine guys" in the metro area and I have zero doubt in my mind that he was the right decision.

They finally cut the old cast off. It was tremendously disgusting. The area under the arms was drenched by the time it came off, from Jack sweating while he cried. Then we saw the enormous break-down under his arm again. It was in that same spot that was injured a couple months ago and, apparently, is a bit infected. So, we'll treat that with topical antibacterial cream - but it should heal up soon. They said we should have NO MORE BREAKDOWN, ever again! The brace shouldn't cause a single rub spot. Ahh. Can you imagine?

They gave us a pack of fiberglass to fix the cuts on his old cast and I removed the padding and the silver shirt that went under it (as well as that awful Hy-tape that I am so glad I never have to see again). He said acrylic paints work great on that fiberglass, and lots of kids paint them to keep them as a sort of souvenir. He suggested the girls do it when we got home. (Apparently his kids like having leg casts made) :) Great toys at his house, I bet! ;)

He has a Risser table, which is where they can actually correct the spine from many angles. It's not all that different from the casting table, really. They laid him down on a large strap, wrapped him quickly in wet fiberglass, it set up in about thirty seconds, and they cut it back off (no saw this time) to mail to the manufacturer. K gave us the option of paying to overnight the cast to them and back to us, which we gladly did. His fitting is the 10th, next Wednesday, and we are feeling so optimistic about this.

I'll update with more pictures out of the cast later, but here is what happened today:

15 months, 3 weeks, nearly forty degrees later...

2008-12-02T16:28:00.000-08:00

and we are done like a Thanksgiving turkey!

Jackson's healthcare team finally came to a resolution over the last 24 hours and we are working together to get to Phase II - the providence brace. This is the nighttime bending brace we've considered, and agonized over, for a long, long time.

After many hiccups and almost decisions, we felt like we had one really excellent choice as of last night, and that choice is Jackson's new orthotist, K. He's an amazing, friendly, gentle, kind, considerate, responsive, flexible, understanding healthcare provider. We are excited to work with him both tomorrow and in the years to come.

None of us knows what this will mean for his curve. Will he progress? Stabilize? Relapse? Improve? Will he need a brace for a year or thirteen years? We don't know. But, uncertainty is just another fact of life. None of us really knows what tomorrow will hold. It's especially difficult in terms of the Neurofibromatosis for me, but, like the last 500 days of his life - it comes with one sun up and another sun down. Your perspective may change, but the days are always there, like clockwork.

As I've mentioned elsewhere - tomorrow, after dressing a cast for a year and a half - we will dress a little boy. Our fear of dirt, rocks, sand, water (oh - the problems with water over this boy's toddlerhood), popsicles, ice cream, puddles, rain, mulch, Barbie shoes, Polly Pockets, Legos, rhinestones on sisters' shirts that come off in the wash, leaking diapers, stomach viruses, fevers that will not give up, overheating, raw underarms, sore hips, cut skin, abrasions, infections, reflux, digestion, weight gain, mobility and car rides. No more twelve hour drives with six stops along the way. No more cramming five children and two adults into a 5X8 hospital room for seven hours. No more hotel nights with slamming doors at 3AM or getting up at midnight with a screaming baby who does not understand why you won't just let him nurse and go back to sleep. No more anesthesia (for now). No more IVs. No more pleading to drink a couple ounces of juice or soda. No more vital sign checks. No more pulse-ox machines. No more pressure cuffs.

No.

More.

Cast.

Saws.

After tomorrow at 10, it is all a part of our baby's life in the PAST. It will always be a part of who he is. He has been through more medical procedures than a typical person goes through in a lifetime. He's seen his fair share of hospital rooms, nurses, and specialists. Over time, I hope his fear of some of these people and things in his life begins to fade. I hope that we are able to continue on a non-surgical path for many, many years. And I hope that one day he is grateful, not resentful, for all we have put him through.

But, tomorrow. Tomorrow is just something many families take for granted.

Tomorrow is...

bath day!

Cast 9 - Cancelled

2008-12-01T11:58:00.001-08:00

Good luck with the brace and I'll go ahead and cancel
> Jackson's casting appointment on the 11th.

Lazy cut and paste

2008-11-25T07:57:00.000-08:00

I'm going to be blacklisted from Blogger, if I keep this up. ;)

But, here's the latest - I just didn't have much else to add, so I thought I'd copy an email I recently sent out to some bracing/casting moms I know.

Dr. K is an advocate for the Providence (nighttime bending) brace. We've talked, at length, to several orthotists and our local surgeon who says, "We aren't naive enough to think that we know what kind of brace is the best for all curves. We're just now doing a global study that follows all kinds of scoliosis and all kinds of curves to see which works for what type. So, if you want to do providence, we're fine with that."

Okay, good. BUT - I can't find a darn orthotist who agrees. Dr. K says he will no longer do long-distance bracing because it
requires too much adjusting (we're about 8 hours away). I agree. It makes sense.

So, I called our local Shriners and they only do Bostons, which I definitely don't want because of the rib compression (it
wrecked his developing ribs at 10 months) and because it's a 23 hour a day brace. I have read that the bones can become compromised (deteriorate) and make them less stable for future potential surgeries. They (at Shriners) claim that the spine has to be load-bearing to correct and would not waver from that perspective. Obviously, they don't deal with much infantile scoliosis (based on our own experiences there).

I contacted the Providence manufacturer (spine tech?) and they gave me the names of two orthotists - K, who is local to us, and B, who is about 4 hours from here. K called us back first. He has made providence braces before, but the youngest child was 6. He doesn't do them very often, but seemed willing to try with Jack. However, the Providence people said that B was, by far, more experienced with them. And, Dr. K always says that a brace is only as good as the person who makes it. So, we wanted experienced.

After over a month of phone tag with B (hopefully not indicative of the quality and responsiveness as a health care provider) he called this morning. He, apparently, thinks that providence are "okay" and has used them on kids as young as four - but he really uses his own hybrid brace for most kids. He said it's based on the callibus(?) and he's designed it for use on infantile scoliosis. He uses it for single thoracic curves and has braced curves into the 50s. He said they resolve in the brace or at very least get better. His 50° patient now has a 20° curve just using this brace (but we all know it could very well be a resolving form of infantile scoliosis). He says it's designed for as much use as we need it - either all day or only all night. He also claims it's adjustable for growth, so it should last up to two years whereas, he claims, "you'd be lucky to get a year on a providence at that age." (Keeping in mind our insurance coverage is crap and we will likely pay out of pocket for a huge majority of this one, plus any subsequent braces in the next three years).

He said he is calling Spinal Tech (the providence company) to see if they know of anyone who has used providence on a child as young as two. (If I had spoken with him, I could have given HIM a few names, but I digress.) He said its probably rare because its hard to get a child that small to fit into the device with success. (and we know that in the realm of progressive infantile
scoliosis, it has been used successfully. I specifically asked Dr. K about the Mehta kids over the years that did not totally
resolve in casting. He said they are ALL maintaining their correction - and considering how many IS patients he's had, I trust him before this orthotist, you know?)

Anyway - any thoughts or ideas? Input? (Comments are disabled here, so you have to know my email) :)

Sometimes I hate being in the decision making position.

10 days

2008-11-24T10:20:00.000-08:00

Ten days until we can remove this cast.

This one went by quickly, didn't it? Or, perhaps it's just the rush of the season. That time from Halloween to Thanksgiving to Christmas goes so fast anyway. This year my Mom is coming to town right in the midst of that Turkey to Santa time, making it go even faster for us. And, of course, another cast.

This cast would be number, what, nine? Nine, I think. 16 months. It goes without saying that we're so ready to be finished. But, like I hear so many times from other casting moms, we want it finished when it's meant to be finished - and making that switch is so nerve-wracking. What if we kept going? Would we push through the plateau? Resolve more rotation? Improve rib deformity? Improve RVAD? Push off surgery for another year? Another decade? Forever?

Like much of medicine, it's a guessing game. We've learned over this last 18 months that all we can do is guess. We try to get the most information and make the most educated guesses, but when it comes down to it - it's all unpredictable.

I recently met another Mom online who has a child with Neurofibromatosis. She mentioned that Cardinal Glennon was fantastic and, in her experience, superior to Children's - so we may take Jack in for a second opinion there. We have all this time anyway, might as well do something to fill it, right?

So, again - we wait. Jack isn't eating anymore, really. He likes larabars and envirokids bars (which we recently discovered have almost zero nutritive value). He ate eggs for about four days in a row, then stopped. He likes cheese sometimes and chips always. But, mostly he drinks. I can manage to get some VitaminWater in him, which is a favorite ("Orange vita-water, Mom"). But, when it comes to solid foods - not much luck. He isn't even eating noodles much lately, which are his favorite.

Last night he begged for his cast to come off so he could play in the tub with his sisters. They had his Nemo toys out, swimming around, and he was no longer content to just reach over the edge and play. "Cast off!!!!" It breaks my heart. Some days we'd welcome the news that casting is no longer going to help. But, then we go from 40s to 20s and it seems like a no-brainer. We have to keep swimming.

Oil and Water..melon

2008-11-21T11:26:00.000-08:00

Today is the day we craft our Christmas treats. My Aunt is coming over to help and we've finally unpacked all of our supplies this afternoon in preparation. A shout out to Bramble Berry who makes the best quality bath goodies and who pleasantly surprised me with two free items! Their customer service is fantastic and their products are the best. We played a game of "guess that scent" and were able to clearly pick our favorites. Mine were yuzu, a kind of asian citrus fruit, and watermelon.

And, speaking of oils, I found some in the garage aside from the fragrance variety. This is never good. John checked the parking lot at the office, but it doesn't appear to be actively leaking this afternoon. He's taking it up to our local oil change shop this afternoon and hoping they can find a source. We need to take it into the shop soon since our windshield has been obliterated. After just six months, we had three separate chips in the windshield, all of which spidered out. Our original plan was to have those spots repaired, versus a total windshield replacement. However, Friday night we came out to the car to change Jack when it was snowing just a bit. I had heard a thump on the windshield while driving the week before, but never did see a new spot. Apparently, the new spot was below that black strip at the bottom, and when I cranked the defrost it was enough to spread the crack across the entire length. We literally watched it spread all the way across, then back down.

I still suspect that Toyota put sub-standard glass in the 2008s. Our 2005 never had a single chip, despite driving on the same highways behind the same gravel trucks and trash haulers. We got hit with countless rocks out here, and I don't know how this windshield could be so sensitive while the other was not - but they claim the windshields are the same.

Sickness

2008-11-19T19:00:00.000-08:00

Alas, it has struck again. It appears I have been hit hardest and from the lethargy and malaise, I imagine it's got to be vasculitis.

What? Not vasculitis?

Probably para neoplastic syndrome, then.

I hope at this point my love of Mr. Stuart Little has become apparent and the diagnosis of hypochondriacism is not floating around your head. I've spent far too many nights watching House, but that snarky charm and sarcastic wit just suck me in.

Okay, so it's probably just a virus - maybe even the flu. But, it feels like something really complicated and awful at the moment and that's somehow validating. So, myeh.

Stay well. Wash your hands. Trust me on this one. It's not worth it.

Jack Announces The Winner!

2008-11-05T10:05:00.001-08:00

Yes We Can

2008-11-05T07:55:00.001-08:00

There is hope today. Hope and a lot of tears - but this election, they are tears of joy. They are no longer tears of crisis and fear and a recession that knocks us on our backs. As I went to sleep last night, and held my boy close to my heart as he snuggled in for sleep, I heard these words that touched my soul profoundly.

I was never the likeliest candidate for this office. We didn't start with much money or many endorsements. Our campaign was not hatched in the halls of Washington. It began in the backyards of Des Moines and the living rooms of Concord and the front porches of Charleston. It was built by working men and women who dug into what little savings they had to give $5 and $10 and $20 to the cause.

It grew strength from the young people who rejected the myth of their generation's apathy who left their homes and their families for jobs that offered little pay and less sleep.

It drew strength from the not-so-young people who braved the bitter cold and scorching heat to knock on doors of perfect strangers, and from the millions of Americans who volunteered and organized and proved that more than two centuries later a government of the people, by the people, and for the people has not perished from the Earth.

This is your victory.

And I know you didn't do this just to win an election. And I know you didn't do it for me.

You did it because you understand the enormity of the task that lies ahead. For even as we celebrate tonight, we know the challenges that tomorrow will bring are the greatest of our lifetime -- two wars, a planet in peril, the worst financial crisis in a century.

Even as we stand here tonight, we know there are brave Americans waking up in the deserts of Iraq and the mountains of Afghanistan to risk their lives for us.

There are mothers and fathers who will lie awake after the children fall asleep and wonder how they'll make the mortgage or pay their doctors' bills or save enough for their child's college education.

There's new energy to harness, new jobs to be created, new schools to build, and threats to meet, alliances to repair.

The road ahead will be long. Our climb will be steep. We may not get there in one year or even in one term. But, America, I have never been more hopeful than I am tonight that we will get there.

I promise you, we as a people will get there.

There will be setbacks and false starts. There are many who won't agree with every decision or policy I make as president. And we know the government can't solve every problem.

But I will always be honest with you about the challenges we face. I will listen to you, especially when we disagree. And, above all, I will ask you to join in the work of remaking this nation, the only way it's been done in America for 221 years -- block by block, brick by brick, calloused hand by calloused hand.

Let us remember that, if this financial crisis taught us anything, it's that we cannot have a thriving Wall Street while Main Street suffers.

And to those Americans whose support I have yet to earn, I may not have won your vote tonight, but I hear your voices. I need your help. And I will be your president, too.

This election had many firsts and many stories that will be told for generations. But one that's on my mind tonight's about a woman who cast her ballot in Atlanta. She's a lot like the millions of others who stood in line to make their voice heard in this election except for one thing: Ann Nixon Cooper is 106 years old.

She was born just a generation past slavery; a time when there were no cars on the road or planes in the sky; when someone like her couldn't vote for two reasons -- because she was a woman and because of the color of her skin.

And tonight, I think about all that she's seen throughout her century in America -- the heartache and the hope; the struggle and the progress; the times we were told that we can't, and the people who pressed on with that American creed: Yes we can.

At a time when women's voices were silenced and their hopes dismissed, she lived to see them stand up and speak out and reach for the ballot. Yes we can.

When there was despair in the dust bowl and depression across the land, she saw a nation conquer fear itself with a New Deal, new jobs, a new sense of common purpose. Yes we can.

When the bombs fell on our harbor and tyranny threatened the world, she was there to witness a generation rise to greatness and a democracy was saved. Yes we can.

She was there for the buses in Montgomery, the hoses in Birmingham, a bridge in Selma, and a preacher from Atlanta who told a people that "We Shall Overcome." Yes we can.

A man touched down on the moon, a wall came down in Berlin, a world was connected by our own science and imagination.

And this year, in this election, she touched her finger to a screen, and cast her vote, because after 106 years in America, through the best of times and the darkest of hours, she knows how America can change.

Yes we can.

It's beginning to look a lot like...

2008-10-29T09:13:00.000-07:00

Halloween. Okay, I'm not really thinking Christmas just yet. Yesterday I went to Michael's in search of Halloween embellishments for our trick-or-treaters' treats and had to scour the aisles to find them on clearance! It's not even the holiday yet and they've moved it all away, clearancing out even Thanksgiving items, in lieu of the massive onslaught of Christmas.

So, with that fresh in my mind, when a friend shared this YouTube video with me, it really hit hard. It's profound, truly. Over the years, we've started moving away from the materialism of Christmas and more toward the time together and handmade gifts. The kids get a special gift from Santa, but long gone are the days of commercialism and crap piled all over our floor with bags and bags of wrapping (talk about waste!) and the tedious boxes upon boxes of packaging. We no longer put out seven or eight bags of trash (have you ever paid attention to how much goes out that first trash day after Christmas?) and enjoy spending time together, making gifts for those we love.

We still have a long way to go, don't get me wrong. But, we're working on it. One year at a time.

What can you do this Christmas?

Okay, I cannot for the life of me figure out how to upload videos to blogger anymore. Gah.

Try that.

Picture Pages

2008-10-24T19:12:00.000-07:00

Just some pictures I wanted to share without the hassle of picasa.

Aaaand - blogger has other plans for the evening, mostly involving raised voices and selective keyboard banging on my part. I shall try again later.

Sorry for the long wait

2008-10-13T12:59:00.001-07:00

I've gotten a couple emails and realized I hadn't updated on the blog here! Sorry!

The x-rays came back showing decreased bone density and she recommended we meet with "the endocrine guy" to follow-up with that. In the meantime, we are supplementing vitamin D and looking into other supplements that might help.

After some googling and the help of a dear friend, we managed to measure the Cobb angle of the last x-ray. I calculated 29° and John calculated 33°. We heard from Dr. K on Monday and he got 33° as well, so we were on for cast 8. We left on Wednesday morning and the girls stayed with my mother-in-law and her sister, who so kindly stayed at our home. Jae went to give Jack a hug goodbye and broke down sobbing. Not being the child with emotional tendencies, we invited her to come with us. It was a nice, easy trip with zero hiccups (okay, one hiccup - a yucky hotel room, but nothing other than that).

The casting day was fantastic. We woke up, drove to the hospital, got checked in, and finally were able to meet another casting family that we have been in contact with for a good part of this journey. It was so nice to have them there, especially since Jack tends to be a Daddy's boy on these trips. It certainly helped to have such a great friend across the hall. Dr. K joked that it was the Mehta Wing of the hospital and we talked a bit about measurements. I said that my calculation was lower than John's, but that his was validated by the doctor's. We spoke to him about the progress Jackson has made, and whether or not casting was going to continue to work, when he returned from the OR. He said he got Jack down to 24° (which he chalked up to being "the same" as last time - around 20). And, we discussed bracing extensively - and I'm on the hunt for a Providence Brace specialist now. Not much luck.

I'll try to add more later - the DSL went out, Blogger froze, and I lost the other 2/3rds of this post. So, I'm going to step away from the computer for a while and avoid throwing it across the room. Because, you know, that's not supposed to be good for it and all that.

Waiting

2008-10-03T15:22:00.001-07:00

This afternoon we got a call from Jack's surgeon in Birmingham. He was looking at our chart and noticed that the numbers were not very good out of cast. As you may recall, this last (the 7th) cast was the best one we've ever had. Despite our frustrations, we were optimistic that this was finally the beginning of the end. We could see that his rotation had resolved, which is a huge aspect of his condition, and the angle had gotten lower than ever before. To hear that he was discouraged was totally unexpected and we were devastated that we might, yet again, be facing a battle to keep going.

We suggested an out of cast x-ray here, to be sent down to him. I then asked about whether or not we should keep our appointment and just plan on meeting with the brace guy, and whether or not he still recommended a providence (night time) brace. He said he had given up on long-distance bracing and is no longer doing that for his patients. He wants us to stay here. (Opening a whole Pandora's box of problems for us, but that's for another time.) However, he said, if the out of cast number was not below 35° we were done. No cast next week, no brace down there, that was all he could, rather would, do for Jack.

Crushing.

It was about that time that we headed out the door for his neurofibromatosis clinic appointment (great timing, huh?). We went to the ortho clinic first and had his cast removed and, of course, no one had called in the last two hours to actually order the x-rays. So, we called down there, spoke with the ortho clinic here, and tried to coordinate it the best we could - no luck.

Finally, in a last-ditch effort, I suggested calling our primary care doc. (There were no doctors in the clinic who could write an x-ray order and our surgeon didn't have rights at the hospital). Sure enough, Dr. H came to the rescue, faxed the order over immediately, and saved the day! They heard us in the ortho clinic and said not to bother going to radiology, that they could do the x-ray right there after his cast was removed. Done and done.

We then rushed up a floor to the NF clinic, went to the wrong desk per the information girl who had no idea what we were talking about, and finally found the check-in. We met with the nurse practitioner in neurology. She was incredibly nice, great bedside manner, but I had to suggest things like using the UV light to check for spots.

We discussed the fact that there is no medical history for DH's family, except that it was noted that the men seemed to have a problem with kyphosis. She examined his tibial bowing, felt for his bumps under his skin on the neck/skull area (she thinks she found one, but said sometimes they hide and then come back, that it's not uncommon).

We also discussed the possibility of rickets causing his leg issues and she offered to do a wrist and ankle x-ray to be sure, since that is fairly non-invasive and we were doing leg x-rays anyway. She ordered a vision test for him, to check for the lisch nodules and optic glioma, and said the standard protocol is to see him once a year unless something comes up. She said, we're pretty sure he has it - he has six spots, so he's right on the edge. I don't want to make any definitive calls without talking to the doctor about his spine because while it's well-documented in NF, it looks like there is some family history there that may explain it. (Not at ALL what I meant by bringing up the kyphosis in DH's family - I meant to imply that perhaps it was undiagnosed NF1. Apparently she got the wrong idea there.)

So, we are waiting for the x-rays to check on his tibia, and I imagine, to see what the neurologist says - but it looks like, for the time being, he has NF1.

I also have the x-ray pictures in a jpeg and just cannot tell what the numbers are. It's going to kill me to wait until Monday to get numbers. I have a hotel to book and plans to make for Wednesday - and if he isn't going down there, I need to call and get in to our local doctor and figure out where the heck we're going to get a decent brace in this city.

And, so, here I am - waiting, once again.

Lazy Sunday

2008-09-07T10:55:00.001-07:00

I suppose, if I tried really hard, I could tell you how this video was somehow relevant to Jack's condition and treatment. Those who know us, know we slapped that Obama sticker on our car long before was the Democratic Nominee. He's our home-town candidate, being from Illinois, and we firmly believe he will be the next POTUS. We wish him, and his family, the best of luck and support them wholeheartedly. And, when he is elected, I know that the hefty tax dollars we already pay to the government will be used in better healthcare solutions.

Having battled our share of fights over the last fifteen months, knowing what it is like to deal with the shock and grief of a new diagnosis and then have to constantly battle the insurance company to get your infant what they need. Well, it's just not something I wish upon anyone. I cannot fathom being Barack Obama, watching his mother on the phone, fighting with insurance companies while dying of cancer.

The sick and twisted reality is - the bills continue to come even when the battle is over. And, no family should have to deal with raising a child alone, struggling to deal with the profound grief, and deciding whether the food is on the table or the hospice care will be paid for. No family should choose radiation over power in their home.

And so, I will end that commentary with a smile. A bit of background: http://en.wikipedia.org/wiki/Rickroll

This of this as a 'rack roll :)

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PSA: The FDA finds lead in vitamins

2008-09-02T06:10:00.000-07:00

Those who know me, and my husband's experience in pharma litigation, know that we are hard core skeptics in what the FDA approves and does not approve for our bodies and the bodies of our children. Yet again, they have failed us.
http://www.thedailygreen.com/environmental-news/latest/lead-vitamins-082803

Gluten Free Baby

2008-08-22T07:08:00.000-07:00

After some nudging in the right direction by good friends, I took gluten out of Jack's diet last week. It's been, oh, 8 days since he's had gluten. The whole family joined him in a show of solidarity for about a week. We're still avoiding gluten, but also don't want to be wasteful with the foods we have in the house already. So, at times the rest of us have gluten and he and the older two do not.

We've seen some behavioral improvement in the older two girls who were become increasingly aggressive with one another. But, most importantly, we've seen a huge difference in Jack's - ahem - digestive process. As you may recall, he's been taking a daily chewable probiotic, high-quality, refrigerated stuff, since the last round of antibiotics for an ear infection. It was helping slightly, or so we thought, until we brought him home post-cast seven.

Three diaper leaks and we were at wit's end. It was the first weekend and we could not believe we were already dealing with a potentially ruined cast. Dad almost took him to the ER to have it cut off late one night, but I was persistent with a popsicle stick and wash cloths and we salvaged it.

Being the good proactive friends they are, they wanted to help me get to the bottom of this (ha - no pun intended) digestive thing he had going on. Jack has always had issues with eating, major sensory things going on, low oral motor function, and general pickiness. He ate almost nothing BUT gluten/wheat - circle cut peanut butter sandwiches, pasta, breads, cereal. I knew that children who have allergies and intolerances often crave what they should not have. In some kids it causes an opiate reaction in the brain and they not only crave it, they go through withdrawal and having it is the only thing that makes them feel better. In fact, we had a nutritionist and an oral motor therapist coming this week because the developmental therapist noticed just enough drooling in Jack to warrant concern. During his report, both the DT and the PT recommended oral motor and feeding therapy based on what they observed. There's a feeding clinic in Springfield we may still utilize. But, I digress.

This past 9 days, off gluten, we've seen a marked improvement. He has had two bouts of diarrhea and both were 12 hours, give or take, after a significant gluten exposure. The first was cookies at Grandma's house. The second was cereal last night (Dad forgot this kind had gluten - most of what is in the house does not.)

So, we're pretty sure now that the theory has been tested twice.

However, in the last 9 days he's also done really well with eating new foods. He put watermelon in his mouth (spit it out, but that's an excellent first step). He is eating berries, cucumbers, tomatoes, shrimp!!!, rice, eggs, champagne grapes, bananas, green beans, peanuts, beans, taquitos - the list goes on and on. And, we've been able to identify both some conventional cereals and speciality cereals that are gluten-free that he likes. Trace gluten doesn't seem to bother him (such as the barley malt in Frosted Flakes) and we're hoping oatmeal will be okay (many people who can't digest gluten also cannot process oats properly or they are contaminated with gluten in the growing/processing). But, we may revisit that later on and see how it goes. Maybe a cast-free week! :)

We are so grateful to be raising children in a day when stores like Trader Joe's and Whole Foods are in our area. Trader Joe's has boxes of banana waffles that are gluten and dairy free - and AFFORDABLE! (Shocker!) They also have great gluten-free pancakes as well as brownie mix and pancake mix in the shelf-stable areas. We've found one bread that we like called Food for Life and we are anxious to find a more affordable source than Dierbergs (I believe it was $7 a loaf). A friend on the West Coast said her TJ's has it for about half that. Amazon also has a grocery section and free shipping for $25 orders and up. So, when we're able, we will get some cases of his favorite items. Right now we're just eating a lot of rice, a lot of potatoes, eggs, beans, fruits, and veggies.

And, we're also fortunate that his seems to be an intolerance. I feel for those who deal with Celiac on a daily basis and cannot have a single trace of gluten. I know families who cannot eat fries unless they are made in a designated fryer because the chicken nugget breading had gluten in it and got in there somehow.

But, between relief from his digestive problems and the sore on his body finally scabbing after three weeks, Jack is regaining some normalcy and enjoying play time once again. Did you hear that collective sigh of relief?

Logical Consequences

2008-08-19T09:22:00.000-07:00

I've been thinking about this for a while now. When our children make a choice, there is a logical consequence to their action. We try to use this philosophy in discipline, to help educate them to do better in the future and understand the breadth of their decision. Like most parenting methods, sometimes it works, sometimes it doesn't. But, the majority of the time it is effective.

At times, it seems they will never fully grasp the concept of personal responsibility. These moments are some of the most frustrating for me, as a parent. The times when you've brought attention to the same behavior for the fifteenth time that day and you want to run, screaming like a banshee down the street in your pajamas, leaving the neighbors to wonder what it was that drove that young mother down the street to the brink of insanity. Or, perhaps just nodding in silent agreement.

This past two weeks, this is precisely the feeling I've had regarding the healthcare providers responsible for Jack's care out of state. While his surgeon is fantastic, experienced, gentle, and truly not unlike an artist in his manipulation of the spine and careful application of the cast, the follow-up care is rudimentary, crude, and at this point has crossed the line into negligent.

I don't respond well to injury to a child - in particular, injury to MY child. A group of moms I know refer to this as being a "mama bear." We are ferociously protective of our young. So, when we first discovered the sore under his cast, I began to get angry. Every day, when he would hold his arms up to us, begging for comfort, screaming that it hurt, I grew angrier. Over time, the injury grew worse. Once we got a visual of the injury, it became apparent that this was not a pressure sore. This was not a rubbing spot, such as the ones that we deal with on his hip bones. THIS was negligent. THIS was careless. This was done by someone. Whether it was the saw creating this abrasion or the sharp edge of the fiberglass, we may never know. However, it was done while he was still outstretched. There was no way to get down under the cast for it to have happened any other way.

Today, nineteen days later, here is a nearly one inch by one quarter inch rectangular piece of skin gone from his body. The depth is enough to rest the pad of your finger beneath the surface. For nineteen days he has been in pain, at the hand of someone who did not do their job adequately. Were it an accident, had we been told about it and had it been addressed, this would be a non-issue. I cannot fathom how someone would have NOT seen this injury when he was outstretched.

The parties in question have consistently caused difficulty for Jack. He has returned to the room with unpadded edges, haphazardly taped in place. He has experienced repeated irritation from tape placed directly on his skin. He has a significant cavern in his rib cage, two inches up from the edge, due to improper placement of the mushroom cut-out. He has had two separate incidents where his abdomen was either cut or rubbed by fiberglass, leaving open wounds struggling to heal while pressed against the edge of a (necessarily) snug cast. He is in a beautifully corrective cast right now that was so poorly trimmed in the front, it presses against his esophagus when he is seated. Windows are not padded. Large pieces are missed, causing it to press deep into his bladder when he's seated. It is, to say the least, inadequate.

"Well, tell someone," right? We have. When we draw attention to the problems, they are (sometimes) fixed. We press, "He has to live in this for 8 weeks." They reply with a flippant, "I KNOW he has to live in it for EIGHT WEEKS!" Okay - then FIX IT!

The battle for proper post-cast care is ongoing. The first time we were told this we were new to the hospital. They hadn't done many of these - were still learning the ropes, they said. What is the excuse now, six months later? Four casts now and this staff cannot get it right. We are told they are over-worked. We are told they have to be in charge of the ER and the OR and the clinic and will get to us when they can. Last time we sat for hour upon hour, then had to carry him down to the clinic and sit in the waiting room. He was groggy and out of it from the anesthesia. He could not stand on his own. He was still bleeding from his IV site and inconsolable. And we had to sit in a waiting room with kids who were ready to have an arm cast removed and return to the pool, happily playing, while our boy was miserable. Somehow, when they don't do their job right the first time, we are the ones who pay the price. There is no logical consequence. There is no lesson that is learned. And, I am running down the street in my mind right now, at wits end. I don't know what the end result will be. I don't know if anything will change. I am ever so slightly afraid to rock the boat and compromise his care. We clearly aren't in there when they're doing this and I don't know that I can trust them to perform this task again. I've contemplated telling them to just let us do the padding, but that would leave him with raw edges and an unpadded cast - subject to injury from fiberglass - for at least an hour. And, we don't have a cast saw in the room. Every time this has happened in the past, we've hoped that maybe next time it will be better. It isn't. It's worse.

We are sad and miss Shriners and their amazing ortho tech. She was motherly and kind. She carefully padded every edge with perfection. She would be the perfect partner for our current surgeon. Second to her is our local Children's hospital. They were kind enough to fit us in yesterday, for an emergency repair (third total repair in the same cast, three facilities). With precision they trimmed the area, re-padded and re-taped, and for the first time in nineteen days our boy had a bit of comfort - or perhaps just hope. This time he didn't even cry when they started the saw (usually an invitation for hysterics). We explained to him over and over that we promised we were going to make his side all better. I think, for the first time in weeks, he had hope that it was almost over. So, even though it was still raw and bleeding, he smiled and whispered his little, "Thank you," to the tech.

We are reaching the end of our ability to cope. The trauma of him being taken from our arms is excruciating - for us and him. While he does have the Versed, which is supposed to be a sedative and amnesiac, it doesn't work completely. For nearly two weeks he screams in his sleep. He will reach his arms out at night, pleading, "Hold you, Daddy. Hold you!" When they take him back, he is in hysterics and it never fails that another nurse has to come and hold our thrashing boy. Perhaps his memory is foggy, but it is there - embedded in his mind that Daddy left him time and time again. When John is home, he has to hold him and walk around. The psychological trauma is compounding and it is having a lasting effect on the way he interacts with adults. Recently, a therapist brought to light for us that it has also influenced his interaction with children now.

But, once again, I ask the question, "What choice do we have?"

The Zoo

2008-08-12T07:48:00.000-07:00

In an effort to distract ourselves from the very long wait for a return call, we took the kids over to the Zoo for two hours yesterday evening. They have extended hours until Labor Day and it was a rare 80° in August. There are some new Dinos on display that they've missed out on the chance to see, so we took advantage of the nice weather and headed out.

For Herc

2008-08-11T10:46:00.000-07:00

Here we go again

2008-08-10T17:07:00.001-07:00

10 days into cast #7 - the best cast yet - and so far major problems.

The first week, he cried and cried. Seeing a toddler with desperation and shock in his eyes, violently shaking his head no against the pain, reaching his tiny hands up to you, begging for help is not my favorite experience along this casting journey. We thought perhaps it was the ortho tech's hasty trimming and that he missed padding spots (again). We thought perhaps it was muscle soreness from all the manipulation. We thought maybe he was feeling choked because they left it too high on his collar bone and in the car it presses against his esophagus. We thought he might be getting yet another ear infection.

Finally, after a week of motrin, off and on, I did a visual inspection. This sounds easy enough, but let me assure you - a wiggly toddler, thrashing against what is causing him terrible pain, confined to a fiberglass cast - this is not an easy task. His hips were red and inflamed, as is typical. His right underarm was terrible - red, irritated, inflamed. The lack of detail and caution with which the ortho techs pad his cast continues to appall me. I once again had to try to maneuver the thinnest moleskin I could on the edge of the underarm portion. After some bending over a knee, allowing him to calm and go the slightest bit limp, and quick and careful skin manipulation, I was able to get the right arm done.

I moved him to the left, promising, "Just a soft sticky. This isn't going to hurt. I'll go quickly." Daddy held him across his knee, we again tried to use some gravity to pull the cast downward, ever so gently pulling his skin up and away. It was sticking to the shirt layer of his cast! I knew it was bad. I thought they had gotten tape adhesive on the shirt (again) and that was the culprit of much discomfort, irritating his skin. It was just the edge. I was shocked to see this about a half inch below the edge of the cast:

Yet again, out of contact with his physician - out of contact with anyone who really understands what all these wounds entail as far as care, once again angry, frustrated, sickened, disheartened, and sadder than I can articulate for all this baby has to go through. The moist burn care pads don't seem to be helping, but don't seem to be harming either. After having his belly button cut, apparently, either by a cast saw or the sharp edge of fiberglass against it, just last cast - I can't help but wonder what the origin of this one is. When his arm is down, the raw, jagged edges come together. Raising his arms leaves it open and gaping with a white center and bleeding edges. My heart breaks for him. And, tonight, again, we give him motrin and pray for the best tomorrow when we FINALLY will get some answer as to what needs to be done.

Lucky Seven

2008-08-03T18:19:00.000-07:00

Cast seven is on and all is well.

The sixth cast corrected, but not as well as we'd hoped. Despite being down to 29° in the cast, by the time we made it back to B'ham for cast seven, it was up to 40° again.

However, Dr. K was able to get his spine back down to 20° - this is the best he's ever done, ever. Ever! His spine looks so amazingly great. His rotation is almost gone. You can see the "headlights" on his vertebrae the entire way up, which has never been seen before in the 14 months we've been looking at films. His ribs look fantastic, too. I never, in a million years, thought he'd look this great. Part of me is ecstatic - with hope restored, renewed faith in the treatment, and the promise of tomorrow. But, I've learned that for every up on this journey, there is almost certainly a down. So, I'm trying to temper my enthusiasm with a hefty dose of reality check.

But, yeah - a lot of enthusiasm!

I even emailed to ask for copies of his x-rays, they were so impressive. The first is out of cast six, while under anesthesia. The second is in cast seven. Lucky number seven.

Fantastic, right?

We also had a great trip to the beach. Jack did great at the ocean and enjoyed the water and the sand. It was hard to go back to "normal" life in a cast, but at the same time - glorious to have that precious time with him on his birthday. I cannot think of a better gift than that.

And, hope.

The removal of cast 6

2008-07-21T07:04:00.001-07:00

And hello in Cadiz!!!!

2008-07-19T15:56:00.000-07:00

Just a little side note to whomever reads from Cadiz.

A few months ago I installed a sitemeter that lets me know the general region of who is reading and when. It doesn't give me much beyond location, time of visit, and length of visit - but it's always interesting.

I also want to give a shout out to whomever is accessing the blog at Harvard. Maybe it is a friend of a friend. Maybe it's a medical professional who stumbled onto the blog - but it's still intriguing to me to see that on there. :)

There's someone whose server is linked through Cadiz, Kentucky and the first time it popped up we were pleasantly surprised. Every time we drive to Birmingham, we stop in Cadiz. We stumbled upon this little gas station and gift shop our first time down South for casting, and it has become an important part of our commute. We stop, fill up the tank, and I get to go walk around in the gift shop - eyeing the Vera Bradleys and occasionally buying a lil' kinz for the girls (the have the best prices!).

So, hello in Cadiz! :)

Here we go, again

2008-07-19T15:44:00.000-07:00

Remember all the antibiotics this summer? And the subsequent tummy upset that left us cleaning and re-taping, again and again.

This time, our luck ran out and we had no more tricks up our sleeve. Apparently, early in the morning, when a diaper is really good and wet, there is no place for, ahem, solid matter to go but up and out. Snug as a 7 week cast is, there was little room for navigation. We attempted to use rounded/soft/small handles to guide a wipe into the area, but it was clear that there was more - and we weren't getting it out.

After an hour of calls, pleading, more calls, more pleading, finally our saga fell on sympathetic ears at Shriner's St. L (thank you, Dr. R). We headed over immediately, and once again, we have a turtle without a shell.

The good news is, it looks good. Remember last time, as soon as it was off John knew it was worse? This doesn't have that feel at all. It looks better! Perfect? Not by a long shot. In fact, I am beginning to think his torso will always be deformed. His rotation is still significant. If there was some way to de-rotate the spine and get it to stay in position, we'd be set. But, not unlike a Slinky's coil, his spine just seems to pop right back despite best efforts of all involved.

John is particularly concerned about his ribs. He doesn't like being touched and he's still wobbly when walking, so I don't want to mess with him too much - poking and prodding. I'll investigate more this evening when he soaks off all this dead skin in the tub. Speaking of, his skin is horrendous this time. There is about a half-dollar sized spot where the trapped matter had already started deteriorating his skin. But, that aside, John said when they cracked off the cast a large spot high up on his hip (not visible from the outside and not the spot that was looking so bad in June). It was a large leathery piece of skin that was attached like a scab, all of which pulled off with the cast. Poor buddy. It's astonishing to me how much they go through that we don't even know about, and really saddening. He can't possibly articulate what that is and what it feels like, except perhaps the tears in the car from sitting too long or the tugging on the side or hips.

Hopefully T will return our call before Monday. If not, we'll follow-up with her in the office and hope and pray they can get him in for an appointment this week. Seeing this improvement reiterates to me that 7 weeks is good. 9 is bad. 6-7 = improvement. 9-10 = deteriorating in the end.

Riding this one out

2008-07-16T15:09:00.000-07:00

3 more weeks and we're getting to the point where the cast is snug as a bug and the tummy seems to just stick waaaay out. But, he's in good spirits, sleeping well, and about five times a day he says, "hungee. 'nack?"

His favorite food is a circle-cut peanut butter sandwich. If you are a mom, and you haven't discovered the Pampered Chef circle cutter, as it is affectionately known in my house, look it up. It's worth it. We have two! I'm sure if you have deal with peanut allergies you are cringing at this point. But, we are fortunate to be okay in that department. Dairy, however, is always at least somewhat of an issue. But, his beloved "butter" is good and we are happy campers.

Jack eats at least two peanut butter sandwiches a day - most often for breakfast and before bed. Who am I to fight? I'm just glad the kid is EATING. He is still eating popsicles daily. Luckily we found a brand that isn't so awful for him. I don't fight that one, either. Again, it's liquid - albeit in a frozen state, but hydration nonetheless. And, the nice thing is, he can have either a drink of juice, soda, or a popsicle post-anesthesia as a liquid, so it's pretty much a guarantee that he'll go for a popsicle there. Last time there wasn't much he would take. I think we ended up with an orange popsicle, melting in the trash, and a cup of sierra mist from the little hospitality room.

When my oldest was young, I wouldn't dream of feeding her some of these things. But, when you mix reflux with sensory issues, feeding problems, and all the lovely digestive issues that can go along with curvy boys (and girls) - you take what you can get. A wise mom mentioned she gives her son high calorie foods when the cast comes off to plump him up a bit, which serves a dual purpose, really. If they get a little weight on them the week before, maybe the cast won't be outgrown so quickly and be a little more loose. Brilliant, if I do say so myself. Thanks for that gem, wise owl!

We're considering renting a Prius for this next trip. It's $45 a day through our dealer (where we got our van) and includes unlimited mileage. When I calculated the mpg for our car and took into account the cost of fuel, even after paying for the rental fee we'd still come out $50 ahead (minus any applicable insurance and or fees the dealer took out for the rental). But, I hear they're quite - um - cozy! And, if you haven't met us, Jack's Daddy is 6'10". Cozy = clown car for him.

Not much else is new around our parts. We acquired an old (not quite antique) oak dresser this week that was posted on Freecycle. And, if you don't know what Freecycle is, I feel sorry for you! It's a yahoo group where you can post things you want and things you no longer want, the one caveat being that the item is free for the taking, no sales allowed. It's a great idea to keep unwanted goods out of the landfills, something we strive to do in our home with having such a large family (and corresponding carbon footprint). It's rare that I am on the receiving end of a Freecycle. Usually it's my fast and easy way of getting rid of stuff we no longer need, use, or want. But, this time I stumbled upon a post in time to actually get the item and it was a great piece. A little TLC and hopefully it will go in Jack's room by the time he's ready to sleep alone.

Early Intervention

2008-07-11T09:15:00.000-07:00

EI was here this morning to fill out paperwork. We have a physical therapist and - now I can't remember - someone who does a global assessment. That's happening in a couple weeks.

I'm so frustrated with this process. Apparently, our EI is on a sliding scale. So, in order for Jack to receive therapy through them, we would pay $180 a month. The won't be able to determine how many visits per month until after the formal evaluation. Our co-pay with insurance is $20 a visit and we have some annual limit that basically doesn't amount to anything.

And, while checking on the coverage for PT, I looked at our orthotics coverage again. The brace that our doctor uses, when we are finally finished with casting, is about $2800. Our max benefit per year is $2500, leaving us with $300 out of pocket for every brace he has made, plus our copay of 10%, which would be another $280. So, $580 for the first brace each year and another $2800 out of pocket if he should need another one.

While they were here, the EI specialist mentioned that our state insurance can help us with things, even if we have medical insurance. Great! Where do we sign up?

Oh - wait - it's on a sliding scale, too. And, you don't have enough in medical bills each month to qualify.

Here's the carrot - run, run, run - psych! Nevermind.

Which reminds me...

The NF Center at Children's will not schedule our appointment and it's getting ridiculous. They want a letter and office notes from his doctor. We had it faxed the same day. No one seems to be able to find anything, and cannot schedule until they have the letter. Um. It's a DIAGNOSTIC EVALUATION. Why do you need his office visit notes? Do you not take a history when we get there, regardless???

The insurance system in this country is a joke - both private and public. The medical community is freaking impossible to navigate. And, God forbid someone who works as a receptionist and schedules appointments for a living can ever do their job.

Heeeere we go...

2008-07-10T08:34:00.000-07:00

Tomorrow morning someone from the school district is coming to evaluate Jack for therapy/therapies. I've avoided this for a year now. I think scheduling the appointment somehow validates his condition as a longterm, chronic issue and I wasn't ready to admit to that. We had all our eggs in the casting basket, it was the only way to get through the financial and emotional stress of it, I imagine. But, now I'm ready. I think.

I'm nervous and anxious and a little nauseous thinking about it. There's a whole plethora of changes and upheaval around here these days and I need some grounding. I feel like I'm floating and nothing is certain, so I have to pull the reigns and get control back. Hopefully therapy will do that - being proactive is always good.

We're on the look out for a Thomas toddler bed, if anyone knows where we can find one at a good price. There's one in Lake St. Louis, but that's a heck of a drive. We are selling some things on Craiglist right now in preparation for the next casting and his birthday and drove to South City last night. Just that hour or so in the car has rubbed his hips raw again. So, LSL is definitely out. (It's the shaped train toddler bed, not the cheapy plastic one - it's a big thing with a built-in toybox). We're also on the lookout for a train table - would love Brio or an activity table from PBK. We've come to realize that these tables are perfect for kids in casts. Their mobility is challenged as far as balance and bending at the waist, so anything that brings toys up to his level is perfect. I was lamenting the fact that my Grandpa isn't here with us, recently at my Aunt's house. He would have built Jack *the best* train table. :(

Miss you, Grandpa. Every day.

A Month To Two

2008-06-26T09:12:00.000-07:00

It's just over a month until Jack's second birthday, and I find myself being a little weepy. And, no, not because he's my "baby" and he's growing up.

I think part of it is a release from all the stress of the last year. We thought he'd be casted for a year (coming up on the anniversary, just passed the anniversary of his diagnosis) and we'd be done. We thought, one year will suck, but then it'll be OVER.

It's not.

No end in sight.

No promise of cure.

A HUGE disappointment.

I feel angry, resentful, and flat out sad that this didn't work. I still have a glimmer of hope that I'm holding on to. But, the knowledge that this is "buying time" for our son is sick and wrong.

At a time when I would typically be a flurry of activity, planning a birthday party, I'm agonizing over the littlest things. I can hardly think about his birthday without wondering what his second year of life will be like.

I want to have a party that he'll love. I want it to be the BEST day for him. Because, frankly, he's been through more this year than is ever fair - especially for a toddler.

I know there are kids battling cancer. I know there are kids lost in accidents and drownings and all kinds of terrible tragedies. But that doesn't make this road any easier.

This year has been tumultuous, to say the least. We went from thinking he might have surgery to correct his curve, to learning the graphic details of what an internal support system would mean for him and instead turning our efforts instead toward casting.

We went from thinking this was a purely orthopaedic condition to learning that it can be life-threatening, that it can cause death in childhood. I remember reading websites about infantile scoliosis and seeing the pictures. I remember a little girl at Shriner's and I remember thinking, "Wow - she must have a lot wrong with her."

She didn't. It was just this.

I get so frustrated when people say, "Oh, yeah - my cousin/sister/aunt/daughter had that." No, they didn't. They had adolescent scoliosis and had a fighting chance. They were nearly DONE growing, not 10 months old with 17 to 18 years of battling this condition ahead of them - trying your damnedest to keep their precious internal organs from being crushed by their spine as they form and grow.

NO ONE TOLD US, EITHER!

I wonder what his childhood will look like.

I wonder if he will be outwardly different, and worry for him.

I already ache deeply when someone comments about him crawling funny or that he doesn't have good balance. Innocent comments become painful reminders that he is not the same as other two year olds.

So, today, when I should be deciding what menu to have, sending out invitations, planning a celebration of two years in his life - I am reflecting and afraid to look to the future because it is so uncertain. Sure, all of ours are. I get that. But, today I cannot decide between a farm party or his newest love, "Memo, fishy movie," because I keep wondering how many birthdays we'll have together.

Dramatic?

Maybe.

Walk a mile in my shoes.

I am strong and fight for him 95% of the time. We research until our eyes cross. We call and call and call and leave voicemails that are never returned. We drive countless hours, through storms and sun, with rising gas prices and financial strain, and sometimes, once in a while, we cry and say, "Why me? Why him?"

And, so, today, I will call the Neurofibromatosis clinic at Children's and schedule the appointment I have been dreading for weeks. Because his cast will only be off for less than a week, the week of his second birthday we will spend the day in a genetic disorders clinic finding out if the bump under the skin of is neck is a tumor. We will try to find some answers that we really don't have questions for. And, really, we don't want those either.

Determining what is best...

2008-06-23T12:11:00.000-07:00

When I spoke with the doctor's assistant in the Salt Lake, something she said stuck in my mind. It was one of those passing comments that don't really hit you right away, but has a slow burn that builds over time. We took some time to consider all the factors, listening to the things other trusted friends and family have said, and made the decision not to go to Salt Lake.

Basically, his assistant said that Dr. D is trained in the same method as Dr. K and wouldn't really have anything else to offer. (Which we knew). And, the more I talk to the other B'ham girls, the more I realize that the things he's done to change the cast aren't impacting the results. Dr. K in b'ham has "cured" other kids with these casts, too. He's been doing this for years, and trusts our input as well. We love him, his staff, the hospital, the area. We know this system. It has served us well.

Dr. D, great as he may be, would end up costing us significantly more money in travel, though the care would be free. However, we always run the risk of hitting another vax snag like in Chicago. But, the travel would be awful. They want us there early in the AM for a clinic appointment, so we'd have to fly out and stay overnight an extra day. Then, the clinic day and another overnight. Then casting day they require you to stay and come back to the clinic the next day for any trimming. So, three nights, four very long days. That's a huge problem for us, particularly in regard to leaving the girls for that long (and bringing them is so insanely cost-prohibitive.)

We also found out that when Miss Mehta comes to Salt Lake, she's not actually casting any of the kids - she's just going to be there as a guest. So, that's out.

And - over the last month we've been appealing the decision to have Dr. K (b'ham) considered in network and JUST got that approved. So, now our cost of going to B'ham is considerably less since the casting won't be out of pocket there.

John added a very valid point - he likes the control of going to Birmingham. It's our car, our decision if we need to stop or go on (transportation-wise), we know where the restaurants are and where the hotels are that we like. We're finally learning our way around. We love the staff there. We know how the process goes. They pad the cast the way we like. No standing in line at airport security trying to comfort a cranky or sleepy post-anesthesia baby. No rushing to return a rental car, navigating the return desk, the shuttles to the airport with bags and a stroller and car seat and aforementioned cranky post-anesthesia baby in tow.

Flying with him post-anesthesia might be hard, particularly. OR changes happen all the time and casts are outgrown all the time. Even if we COULD afford a cheap southwest flight (right now they're $385 per person, round trip X 3) and three nights in a hotel and four days of meals - which, really, that's pushing it, financially - if we had to change a flight at the last minute, we'd have to upgrade to a full fare for all three of us. It would be a LOT more if we had a schedule change.

And, if we need to get to Birmingham, it's a matter of just getting in the car and driving there in one day. OR times change. We got bumped and flipped more than once in the Shriners network. Communication can be difficult, delayed, and sometimes nonexistant (we were supposed to have been called back "tomorrow" countless times - including this last week when, once again, we never heard back. That's not adequate care, in my opinion. When you have a child with ANY medical issue, you need answers as quickly as possible. If someone takes three, four, six weeks to get back to you after repeated voicemails - that's not right.)

Basically, the way DH put it - it's a lot of extra expense, stress, travel, and inconvenience - and for what? Is there any true added benefit? It IS essentially the same treatment. (Talking with the other Birmingham casting families has confirmed this for me - that he HAS done over the shoulder casts and WOULD if we really wanted it - he's doing them on a casting-friend's son right now.)

I just kind of feel like I wanted this so badly, but now - thanks, but no thanks. Dr. K doesn't think that this is the end of casting for Jack anymore - he's willing to keep on trucking, he's still getting results and correction - and it's not like Dr. D feels so confident in Jack's case that he could do anything better for us. So, I think we'll stay with the team we've come to know and care for, who hopefully feels the same way about us.

A Plea for Airline Miles/Reward Credits

2008-06-18T10:05:00.001-07:00

UPDATE******** CHANGE OF PLANS - SEE JUNE 23 POST ***********

Because we're going to Salt Lake!!!!!!!!!!!!!!!!!

We were floored - positively shocked - to get the approval letter yesterday. Salt Lake City is home to THE most experienced early intervention doctor. We are so blessed to be invited to his practice.

While there are charity organizations like Angel Flights that transport patients, they only allow for one parent to accompany the child. I'm sure you can understand the concern with having your child undergoing medical treatment and not being able to both be there should something arise. Also, these planes are often small, seating only two people and their luggage. One such flight was in the news this week when it crashed, killing a two year old obtaining a similar treatment on her legs at an out of state hospital.

While we are blessed to typically have the means to be able to pay for a Southwest flight, there are huge penalties when a flight is changed at the last minute. Many times we cannot book the flight until we know that the OR date is firm, sometimes even not knowing if he will outgrow a cast until the week it is suddenly too small. Also, if he has an anesthesia reaction, we may be required to stay an additional day in the hospital. Missing a flight like that would require us to upgrade a flight to premium, costing upwards of $600 - $800 for the change. Also, while Jackson can technically fly free until his birthday, that is next month. So, we will need 3 seats per visit, round trip.

Flying to and from Salt Lake, thankfully, is a plentiful thing on airlines such as American and Southwest. Southwest's Rapid Rewards flights are transferrable and there are no penalties. They can be booked on any flight, there are no blackouts or restrictions, and we can change the flight up to the day of.

These are precious to us and provide far more than the worth of the flight. I know some of you may not travel often, but for those who do - would you please consider signing up for a free Rapid Rewards account and flying Southwest? It will save your company/client money because the flights are so much more affordable, and you can obtain a free flight just by taking 8 round trips.

Similarly, if anyone has existing reward flights or even miles from another carrier, those would be so greatly appreciated. As Jackson turns two, and his spine becomes less flexible and his growth slows, we are coming upon a very difficult time where every day, every cast is precious. Each one must be applied at the very best, most experienced facility, by the most experienced person or we risk not only not having correction, but also having him regress further like he has. This is buying our child valuable time to grow and have his heart and lungs function properly - it is literally adding years to his life.

Please let us know if there is anything you are able to do. We are also always in need of hotel room loyalty points/rewards. Ronald McDonald House is a fantastic charity, but they cannot guarantee a room. They put you on a waiting list and will let you know if a bed is available the day of your visit. Naturally, we cannot wait until that day to know if there will be a place to sleep, so we have to book rooms regardless, and, again, there are penalties for last minute changes and cancellations.

And, always, thank you for your continued prayers and thoughts along this ever-changing journey.

Excrutiating

2008-06-16T13:06:00.000-07:00

Screaming the second he's in the car - this spot will just NOT heal.

Five

2008-05-30T07:08:00.000-07:00

didn't hold.

Started at 36° - down to 28° (he said it wasn't 30 after all).

When we got down there, he was up to 44° and he could only get him down to 29°.

The removal of cast five

2008-05-27T13:51:00.003-07:00

We aren't sure there are any good results from this one. In fact, his ribs look worse.

There's also something else we're a little concerned about, but we are going to talk to the doctor and see what he says before I go into too much here. We'll be back by Friday.

Take a minute

2008-05-10T12:03:00.000-07:00

and read this, if you can. I found it while searching for information about the Salt Lake doctor you'll hear referenced in my next post. It gave me more information than I previously had about Jack's prognosis and condition - and I hope it will do the same for you.

Rare scoliosis procedure gives tot new hope

By Debra Melani
Denver Rocky Mountain News Staff Writer

When Olivia Noel Sorensen turns 3 on Christmas Eve, her mother will be
celebrating the life of her daughter, a happy and rambunctious little
girl whose fate looked grim a few months ago.

But thanks to her mother's determination, Olivia is likely to
celebrate many more birthdays, as are at least six other children
whose parents heard of the Denver residents' story.

Because Heather Hyatt refused to follow doctors' orders in treating
daughter Olivia's severe scoliosis, a procedure that's common in
France but not in the United States is now being offered at Shriners
Hospital in Salt Lake City. For families like Olivia's, it could be
the answer to a prayer.

"If it's successful, it brings up an alternative way of treating
infantile (up to 3 years) and juvenile (4 to 10 years) scoliosis,
because right now we really don't have a good way," said one of
Olivia's Denver spine surgeons, Dr. Courtney Brown.

Doctors had told Hyatt that the best thing to do for Olivia was to
keep her in a brace and "hope for the best."

But Hyatt didn't feel like just hoping.

"That's when I began researching," she said in a telephone interview
from Olivia's hospital room. After nearly three months in Utah,
Hyatt's goal is to bring her little girl home by Christmas.

Hyatt, a single mother, went on a quest to find a viable alternative
to what she believed — and doctors agreed — was a death sentence.

Olivia's infantile scoliosis, a condition rarer than its adolescent
cousin (11 years and older) but often much more virulent, had
contorted her spine to a 96-degree angle by the time she made it to
Shriners Hospital. Hyatt watched helplessly as a growing back hump
continued to disfigure her baby.

She found little information on the Internet but received a list of
about 10 doctors in Colorado who were associated with the National
Scoliosis Foundation. She began visiting each one and sending Olivia's
X-rays to prestigious medical institutions across the country. They
all stuck by her Denver doctors' suggestion.

Then Hyatt went to Dr. Cathleen Van Buskirk, a spine surgeon in
Boulder. That was her turning point.

"She was the only one who recommended a serial corrective plaster
cast," Hyatt said. Van Buskirk suggested a treatment done in France by
Dr. Jean Dubousset, a renowned expert in the field who Van Buskirk
said has probably seen more severe cases like Olivia's than has anyone
else in the world.

Scoliosis is much more common in Europe, possibly for genetic reasons,
said Dr. Jacques D'Astous, the Shriners Hospital doctor who treated
Olivia. He, like Van Buskirk, trained under Dubousset.

"Cases we see in this country are often people of European descent,"
he said. D'Astous said there is speculation that rates are falling in
the United States because of the campaign to place infants on their
backs to prevent sudden infant death syndrome. But many forms of
scoliosis, Olivia's included, have no known cause.

Hyatt took Van Buskirk's recommendation to her Denver doctors, who
refused to perform the treatment, some even calling it "barbaric," she
said. The procedure requires the children to be put in a turnbuckle
body cast and a "halo" bolted with eight screws to their heads.
Weights are then attached and slowly increased to gradually straighten
the spine.

Despite the doctors' negative reaction, Hyatt pressed on. "She was
already getting a huge rib hump," she said of Olivia. "It was mangling
her ribs."

To prevent the spine from killing Olivia by crushing her lungs or
heart, Hyatt said, drastic measures, such as fusing her spine, would
have been the ultimate course. "I refused to take that for an answer,"
she said, explaining that fusion would have shortened Olivia's life.
Her 2-year-old trunk would have stopped growing, leaving no room for
her organs.

"Those who are saying that this is barbaric in this day and age don't
understand what the basic problem is," Brown said.

Van Buskirk agrees. "After a curve becomes 90 degrees is when we start
seeing severe cardiopulmonary complications," she said. "I can't
predict how long she would have lived, but she would have died in her
childhood years."

Doctors want to control curvatures until children are at least 10 or
11, Brown said. Then the spine can be fused, "and you have a much
better chance at having a relatively normal child," he said.

Hyatt's persistence — combined with a little luck — paid off. She
tried for months to get a response from Dubousset. After resorting to
sending her pleas with Olivia's records to his home in France, he
answered.

"We were ready to move to France," Hyatt said, explaining that she had
friends in Europe who were going to help her find a home for medically
needy kids. Then she learned from D'Astous in Utah that Dubousset
would be visiting Shriners to receive a lifetime achievement award
before retiring.

Hyatt and Olivia were there waiting.

At Hyatt's urging, D'Astous persuaded Dubousset to evaluate Olivia.

"He came in and picked Olivia up by her head," Hyatt said. A
translator told Hyatt that Dubousset was worried Olivia was too young
to emotionally tolerate the procedure, but her condition was so severe
that something had to be done.

Speaking through the translator, Dubousset told Hyatt: "What your
daughter has is the hardest thing to treat in the orthopedic world.
That's why I took this on. Instead of crying, you need to fight this
disease every day for your daughter and never give up."

Dubousset agreed to train D'Astous and advise him over the phone from France.

Hyatt had learned from friends of a 3-year-old girl in Grand Junction
whose condition was almost as severe as Olivia's. She contacted the
mother, and that girl and Olivia soon were paving the way for other
children whose futures were equally precarious.

It wasn't easy.

"The first week was probably the roughest week of my life," Hyatt
said. "I was questioning myself, thinking: 'What am I doing? I hope I
don't kill my child."'

Because Olivia was too young to understand and would be too
frightened, she had to be put under general anesthesia, D'Astous said.
For older children, local anesthesia can be used to bolt in the halo
and apply the cast, which encases all but the arms and legs.

When Olivia awoke, she was confused and in severe pain.

"She was on morphine," Hyatt said. "The first week is a blur."

But she said she'll never forget her daughter's eyes full of fear.

"She'd say, 'What are you doing to me, Mommy?"'

With 11 pounds of weight hanging from her head, Olivia had to have a
supportive wheelchair or walker with her wherever she went.

But Shriners — a philanthropic, 22-hospital organization that treats
burn and orthopedic child patients for free — makes the families feel
at home, Hyatt said. Every day, there are activities for children,
including visits from traveling pets and sports stars.

After the first week, Olivia — and her Grand Junction cohort, Breann
Blackman — rebounded.

"I think they did awesome," D'Astous said. "I think the girls adapted
remarkably well."

Moreover, their spines responded. Olivia's 96-degree curve decreased
to a livable 45 degrees. "Basically, you are buying time for them,"
D'Astous said.

The girls have a daunting road ahead. They will be in and out of body
casts and braces for years. And they could face treatment again if
their spines revert to dangerous degrees.

In Olivia's case, that's likely to happen in one to three years. At
that point, it will be up to Hyatt to decide between another cast
procedure and seeking other experimental treatment.

The goal is to get her to at least age 10, when a spinal fusion could
be done with a better likelihood of giving her a relatively normal
life.

Not every child with severe scoliosis will get this procedure. Given
the treatment length and the intense medical supervision and
aggressive respiratory therapy needed, the cast procedure isn't likely
to be widely offered in the United States, Brown said.

"The reality is that nowhere in the country, except for a
Shriners-type environment, could this be done," he said.

Van Buskirk concurs: "The insurance companies wouldn't allow us to
keep children in the hospital for that length of time."

Other experimental procedures for children like Olivia are available,
but all require surgery. One such treatment Olivia might later undergo
involves implanting a titanium rod to help maintain the spine.

But D'Astous said French studies indicate that the results of the
procedure that Olivia underwent are far superior to any other
experimental treatment.

Once he sees how the girls do now that they've been placed in braces
to maintain the correction, D'Astous will probably encourage his
colleagues at Shriners hospitals to consider the treatment, he said.
He has already received six requests as a result of publicity
generated in Utah, and he plans to grant some of those requests, he
said.

"Right now things are looking very encouraging," he said.

Hyatt said it's gratifying to know she had a hand in making this
treatment available for other children, and she suspects she and
Olivia will have a special Christmas with a much-deserved rest.

"To know that there are going to be other kids now is the best feeling
in the world," she said. "Olivia went through a lot. And so did I."

Meeting Dr. D tomorrow

2008-05-07T13:23:00.000-07:00

I've been pushing this out of my head time and time again, but it's really hit me this afternoon. We meet the new doctor (local) tomorrow at 9 AM to discuss bracing and, basically, Jack's future. This is a decision that will impact him for the rest of his life and I'm so nervous about making the wrong choice.

The head of the Infantile Scoliosis Outreach Program thinks Jack could still benefit from casting. The doctor doesn't. Hard to hear that and not know what to do and where to go, yk?

I have this nagging in the back of my mind that this has worked up until now and could continue to work. But, who am I to say?

As much as I want to chop this stupid cast off him and never look back, once we stop casting, that's it - no real chance of improvement and he'll have to live with this for as long as he's growing - until surgery/surgeries are an option. So, that weighs heavily on my mind. I want this to bring him down to a 0. I want a cure, damnit. We've done everything right - everything they said. We've driven miles and miles, dealt with no sleep, had countless NPO nights, and I'm just sick that it's the end of the road. Nine and a half months of this crap. I want to be finished - but I want him to be healed and whole and well.

Anyway - that's my state this afternoon. I'll update tomorrow as soon as I know what the new doctor thinks. He's doing an official training symposium here (like the one we attended when Jack was first casted) - and I should be thrilled that Jack's curve is not in vain - that we've done something good for our community by advocating for this and bringing it to St. Louis. But, really, I want to be selfish for Jack today and just say it's not fair.

Cast #5

2008-04-03T11:49:00.000-07:00

Note: If you are on the board, please forgive me for restating what I posted in Sisters. I'm still just utterly exhausted and don't have the mental energy to re-hash all of this. I'm just going to cut and paste the post from there below.

Since we managed to talk them out of a clinic appointment first, we left around 8:30 on Tuesday. We took our time getting to Birmingham, and before we left, I GoogleMapped directions to the Irondale Cafe (the "Whistle Stop Cafe" that is the root of the movie Fried Green Tomatoes). We went there directly, and had a great dinner. Jack FLIPPED over the trains and kept signing "train" and saying "choo choo." It was the highlight of our trip, for sure.

We checked into the hotel and ran to SuperTarget for some provisions. I always try to get him to eat as much as humanly possible before he is NPO at midnight. He refused the apples, refused the banana, ate a handful of cereal - just nothing of substance. He nursed twice and went to sleep. I waited up until midnight (one trip in Chicago, I MISSED his last nursing and it was awful - engorged, leaking, you name it). We were pretty amped up and couldn't fall asleep in the hotel.

He woke up at 1:30 and screamed. And screamed. And screamed. He thrashed around, hitting his head against the headboard, and screamed louder. He signed "milk" and "please" and said, "pees?" over and over again. I wanted to cry. I quietly reminded him that we had a cast tomorrow and no milky, but he wasn't having it. He finally passed out again 45 minutes later, only to wake up and do the same thing at 3. I don't think we slept again. John finally got up with him at 4:30 - glad to know that once we were up, the night was over. I got up at 5 and got dressed and we headed out the door - running on nothing but adrenaline.

We got to the hospital and the check-in waiting room was already full. We were ten minutes late, but I could have cared less at that point. Jack did well once we got there, except for the times when someone would come into the room. The DVD player in the room was broken, so he couldn't watch his movies. I swear it was 90° in the hospital, too. We were sooo tired. Went through the anesthesia screening, then the history, yadda yadda. By 7 they gave him the versed and it seemed to work this time. In Chicago he almost falls asleep, but in Birmingham, we have to carry him down to the OR and pass him off. So, he's hysterical every time, no matter what. Dad took him this time.

One person has to remain in the room at all times, so when John got back he went to the cafeteria to get us some food (we don't eat when Jack can't eat). I scarfed a bagel and we waited about a half hour until Dr. K came in.

He showed us the out of cast x-rays from cast 4. This is the starting point. The last cast had only corrected 2°. He went from 38° out of cast to 22° in cast - and once that was removed, he was back up to 36°. Defeat.

He said the spine is very rigid. When he presses on the apex of the curve, he can usually straighten it. However, in Jack's case, he cannot. He presses on that C and the WHOLE spine shifts over. Obviously, this could create a compensatory curve above and below it and royally screw up his back. So, he did what he could, but isn't very optimistic. I still don't have Cast #5's in-cast numbers.

After this cast, he will do x-rays and see where we are. If he hasn't gotten much correction (below that 36° number) we will move into a brace - that means it is all he can correct by casting and his spine is too rigid and his growth has slowed too much to achieve any more correction.

We've know this was a possibility. But, hearing that it's here already is a bit of a shock. We thought we'd get down to the 20s at most. However, we are looking at a 50% correction. That's huge. He is no longer a "surgical curve" - that's huge. But, 36° is huge, too.

Next appointment is at the end of May. We will go down for a clinic visit and get x-rays and the brace guy will be there, too, just in case. If we HAVE seen correction, we will do another cast at 6AM the next morning. If there isn't any correction (or not significant) we will move into a brace.

His surgeon uses Providence braces, which are more aggressive and push against the curve in the opposite direction. They cannot be worn during the day because you can't stand in them, we were told, but they work much better. And, he would have the chance to strengthen those trunk muscles during the day, which would be fantastic. However, he also has a chance of relapse. The rapid period of growth slows significantly between 2-5, and virtually stops from 5-10. He said you can breathe easier between 5-10. However, DH is 6'10" and grew steadily from like 3rd grade until college. We are going to have to watch Jack closely.

So, lots of mixed feelings right now - we would be thrilled to not see another cast. We would only have to go to Birmingham once a year for brace checks. That's good. But, no monitoring scares me. Not getting below 36° concerns me.

UPDATE:
While I was uploading pictures from our trip, I got an email from T in Dr. K's office. The in-cast number was only 30°. Clearly his spine has become significantly more rigid since the last cast went down to 22°. She gave us the name and number of a local orthotist who does Providence Braces here in Webster. We are still welcome to go down there for bracing, but she suggested that since we will have a lifetime of commitment with brace checks and growth adjustments, she suggested we may want to stay with someone local. We are going to take some time to process all of that and try to make a decision.

Some happy things to end this with - pictures.

A Castastrophe

2008-03-26T17:05:00.000-07:00

This morning was a leaky diaper blowout once again. If you recall, this happened early in Cast #4 during the plague of stomach virus and flu. At that time, I used my mad casting diaper skillz to pull the shirt down, cut out the offended tee, and re-tape.

Fast forward to this morning - not only has all the excess tee been used, I cannot get so much as a pinky up the back of his cast because it is so tight. Every time we try to use a wipe to clean it up, he screams. By mid-morning, it was obvious that this was not going to do - if the - um - waste product remained on his skin, he would have an open sore in no time. We called T at Dr. K's office and left a message, then emailed her photos of the tightness of the cast in addition.

Then, I made the executive decision that this cast was coming off NOW. If we had to deal with bounceback from him being out of the cast, we'd deal. We had no other options at this point. So, we called the hospital and they cut it off at 1:30 for us. WHEW - good thing, too! It was baaad under there - far worse than we could see.

And, now, without further ado, the unwrapped present that is my son's spine...

A Beautiful (albeit Bizarre!) Easter

2008-03-23T19:01:00.000-07:00

We had an awesome time with a small family gathering today - lots of yummy food, too many of my Grandma's best-in-the-world deviled eggs, and the most heavenly dessert from my Aunt. And, would you believe - SNOW?!

It was great just sitting around, talking, and listening to stories. That's a past time that we don't make time for often enough in this day and age. It reminds me of backyard barbecues, with the boisterous laughter of generations gone by.

Today was a sign that the tide is turning. Nothing went wrong, nothing was in crisis, no major problems, just good food, and good friends. We are blessed to be surrounded by loved ones and are so grateful for their time with us. Not only did they come and spend their afternoon and evening with us, they spent time hiding eggs, collecting eggs, making desserts and side dishes, driving a long way to sit and chat, and entertaining our kids. They brought laughter and joy (and a carpet cleaner!!!!) to a home that has been rather tumultuous this past week, and for that, I am grateful. The memories, and house, are fresh and life is good.

Happy Easter.

Should've built an ark...

2008-03-19T18:24:00.000-07:00

Torrential rain

Rain. Lots and lots of rain.

Sump pump malfunctions.

Sump pump back up malfunctions.

Sump pump alarm malfunctions.

8 hours to fix with remote pump.

Basement play room.

Basement family room.

Basement office.

Basement full bath.

Basement utility room.

Carpet, pad - soaked. Entire room. Water pooled behind baseboards.

Bad. Very, very bad.

Not covered by insurance - priceless.

A Foodie's Baby

2008-03-13T08:57:00.000-07:00

Who would have thought that a foodie would have a child who didn't eat. Do you know how difficult that is?

Jack's solid efforts have backslid yet again. Sometimes we don't see it immediately. I think the stomach virus last month is the original culprit, but we know that solids are just not something he enjoys eating. A bite of banana here, a piece of cereal there - but no real meals, no real food.

He's been nightwaking terribly lately, and while I know that the second molars are part of the problem, a friend suggested that perhaps he's just genuinely hungry. So, we set out last night to find some kind of beverage to boost his calories during the day. There are so many issues tied to his eating. For the last 9 months, he has been denied the opportunity to eat with some regularity. I think the impact of that, psychologically, has played a huge role in his feeding issues. In addition, the cast is against his belly at all times. Surely drinking the most readily digested thing on earth is far more comfortable than eating, and perhaps he's just learned that at an early age.

So, we are continuing to offer a variety of foods, and I will continue to make him plates of food (just to throw them away a half hour later), and I will continue to stay neutral on the issue when inside I am pleading and begging.

Groundbreaking case in autism/vaccine link

2008-03-06T09:15:00.000-08:00

http://www.cnn.com/2008/HEALTH/03/05/autism.vaccines.ap/index.html

Although some slight misinformation was given (the thimerosol link isn't the only one - there are still heavy metals in vaccines that react in the body the same way and even though it's not allowed as an ingredient anymore in pediatric vaccines - yet - there is no link???? How does that make sense? We're not allowing it, but it's perfectly safe? Huh. Reaaally. It IS still in stockpiled vaccines and is still regularly distributed to our children.) It is STILL a fantastic advance on the vaccine/autism front. As I've said time and time again, I believe there is something far more complex than just this one particular ingredient, but that it plays a huge role. We don't know if it's toxicity, assault on an immature immune system, ingredients, dosages, or what - but we DO know there is a link between autism rates and vaccines and we're glad to hear that the courts are beginning to agree.

Diaper Changing in the cast

2008-03-06T09:07:00.000-08:00

for the CAST moms

Does anyone have a rental house at Gulf Shores?

2008-03-05T15:25:00.001-08:00

Condo?

Time share?

Bueller??

Thought I'd ask here first :)

Jack Sign

2008-03-05T13:35:00.000-08:00

Jack has started watching Signing Time movies and really picking up on the signs in them. Here are just a few that he's learned this week, and his new word!!!

Cast Redo

2008-03-04T11:22:00.000-08:00

Once again, the tummy bug has landed in our house.

Jack threw up for two days and now has the second phase of this virus, apparently. Yesterday we woke up to a horrific leaking diaper, having already been soaked from sleeping at night, it went out the front, back, and legs. His cast tee was soaked - under the tape and everything!!! Panic ensued. John changed him and then we went to work trying to clean it. We thought we'd been successful until the afternoon when I kept noticing he smelled sour. Having the most sensitive nose in the group, I thought maybe it was just me. But, I finally went to change him and decided something was off and I needed to investigate.

I started un-taping the cast and could not believe how bad it was. Soaked through the tee shirt, into the cotton padding, and UNDER the tape from the inside! I had to remove the entire bottom part of the cast's taping, the cotton underneath, and CUT OFF the shirt! It was that bad. Luckily, after four casts being padded and taped, I kind of knew what I was doing. This new hy-tape that they use in Birmingham is awful. It's SUPER sticky, but rolls at the edges. The colored duct tape we were using, per Chicago's cast tech's recommendation, worked so much better. But, I didn't want Jack to be mis-matched, so I went to work with the salmon colored hy-tape. I used the whole roll to re-do just the bottom. The new shirts are grey and supposedly anti-microbial, but the fibers are so much more rough and abrasive. I'm going to ask if we can get the old kind. It doesn't really make a difference in "odor" that I've found. But, the weave is much further apart and it makes for a less-soft interior. I noticed a spot at the top didn't look right, took it off and it was a HUGE JUMBLED MESS! The tape had, apparently, gotten stuck to itself, so they just taped right over it. No wonder this cast looked so wonky to me. So, I taped over that and tried to get it smoothed out.

Then, I did the underarms again. Poor baby! They were SO red and raw under his arms, and that's such a sensitive place. I pulled the shirt out and it was totally discolored - I assume from the raw skin weeping underneath! :( Poor boy!!! I pulled that part out, cut it off, and saw that this hy-tape had left adhesive and must've been repositioned underneath there when it was too close to the skin - so there was white sticky stuff against his skin this whole time!!!! No wonder it was irritated. Much to his dismay, I stuck a piece of moleskin underneath by carefully shifting his body to one side and laying him on his side. It hurt for a bit, but I think now he'll be much more comfortable.

I'm just so frustrated with this cast taping and SO SICK of stomach bugs. I was ready to go get the whole thing cut off last night and just move to a brace with a local doctor. But, I know this is important and we'll keep it up. I just hate that he (and we) have to go through this some days. It's just not fair! He shouldn't have to deal with a tummy bug AND a cast. :( Yuck!

An important note about car seat safety...

2008-02-27T18:24:00.000-08:00

If you know me, you know I'm passionate about a few things. Okay, more than a few. Maybe you've noticed that even my 8 year old is in a booster. Maybe you've wondered why Jae is in a harnessed carseat at 6. And maybe you've chalked Jack rear-facing up to the fact that we're just too exhausted with five kids to find the time to turn him around.

Maybe not.

Maybe you know this information already, and if so, bravo! It's definitely not common knowledge and most organizations are on a crusade just to get kids in carseats during the bare minimum amount of time. I can't say I blame them. Very few things make my blood boil like seeing an unrestrained child in a car. I think it should be punishable, by law, as parental negligence or endangering the life of a child.

Several years ago my Mother-in-Law lost slid at a slick highway exit ramp while approaching a red light. My daughter was a toddler and rear-facing at the time, but I still cradled around her body in an attempt to absorb the impact. I was so concerned with her safety, and so relieved when she didn't even seem to wake up after the accident, that it took a moment to process what I was seeing ahead of us. I watched as no less than seven people - four of whom were infants or toddlers - piled out of the back seat of the vehicle we had just hit. Not only were none of them in seat belts, not one was in a car seat! They ran off through the trees to get away before the police arrived on the scene, to avoid being ticketed. They were so lucky that night!! I hope that was enough to scare them into using child safety restraints, but something tells me it didn't change a thing.

In our state, the law is 8 and 80 - eight years, 80 pounds. In other states, it's less. To me, the fact that ANY state things 8 and 80 is the bare minimum is enough. It tells me that I had better look into the why.

Over the last few years, more data has come out on child seat safety. I KNOW this information is new to plenty of people. I do not hold it against you for not knowing. I'm here to give you the information, and let you make your own decision based on the statistics, the facts, the videos.

I know that car seats were hardly even used when I was a child. I have a picture of me, sitting next to some huge black vinyl contraption - and pictures of me in a pumpkin seat, ready to go out into the car. Today's roads are different. Cars go faster. Highways are more plentiful. Drivers are under the influence more. Sadly, it is often trial and fatal error that changes things like the aforementioned age and weight minimums. While some accidents are unpreventable, and no safety seat will prevent all injury, all the time, I thought I'd take this time to explain why we feel so strongly about having our little girls in harnessed, latched seats and having our little guy in a rear-facing seat still at 19 months.

When Jack's torso height exceeded the space that was considered safe in his Britax Boulevard seat (due to being casted over the shoulders) we were very limited in our options. Even the hospital couldn't find a seat that would work for us. However, an angel of a friend (thank you, sweet H) helped us purchase a new seat for Jackson that would safely allow him to be harnessed at the proper height, while remaining rear facing. Every time we drive, much less take an 8 hour road trip to his doctor appointments, I am so touched by her kindness and generosity during a difficult time. Someday, when all this is a memory, we will pay it forward tenfold.

Here is Jack in his Radian80 car seat with plenty of leg room, even though he is off the charts for height. (Hmm. Where'd he get that?) The outfit he is wearing is a 3T, for reference.

Watch the videos. Even if you don't have a child, you may one day - or you may have someone else's child in your car. The crash test footage speaks for itself.

It is also very common that people put small children in a seatbelt - or even a low-back belt positioning booster. Why is Jae in a five point harnessed seat? Because of Kyle. Literally, because of Kyle. I saw this video and we ordered a seat for her the same day. I promised to do all I could to help Kyle's Mom find some comfort, to know that her son's tragic death was not in vain. I had no idea. No clue whatsoever that seat belts fail this way. I had Jae in a high back Britax booster with side impact protection - the best! So did she. It wasn't the best. There are safer ways.

http://www.car-safety.org/rearface.html
Rear-facing is safest for both adults and children, but especially for babies, who would face a greater risk of spinal cord injury in a front-facing carseat during a frontal crash.

Rear-facing car seats spread frontal crash forces over the whole area of a baby's back, head and neck; they also prevent the head from snapping relative to the body in a frontal crash.

Rear-facing carseats may not be quite as effective in a rear end crash, but severe frontal and frontal offset crashes are far more frequent and far more severe than severe rear end crashes.

Rear-facing carseats are NOT a safety risk just because a baby's legs are bent at the knees or because they can touch/kick the vehicle seat.

Rear-facing as long as possible is the recommendation of the American Academy of Pediatricians, and can reduce injuries and deaths. Motor Vehicle Crashes are the #1 overall cause of death for children 14 and under.

MSNBC article
http://www.msnbc.msn.com/id/9916868

His study, presented at a recent meeting of the American Academy of Pediatrics, involved 870 children under age 2 who had been in either rear-facing or forward-facing car seats at the time of an automobile accident. He found that the children in forward-facing seats were more than four times as likely to be injured in side crashes as opposed to the children in rear-facing seats. The study also found a small but not statistically significant benefit for facing rear in frontal crashes.

http://www.cpsafety.com/articles/StayRearFacing.aspx

American Academy of Pediatrics states: If a car safety seat accommodates children rear facing to higher weights, for optimal protection, the child should remain rear facing until reaching the maximum weight for the car safety seat, as long as the top of the head is below the top of the seat back.3

http://www.carseatsite.com/rear-face_article.htm

WARNING: GRAPHIC....but necessary

Rather it is the rigidity of the BONES in the neck, in combination with the connecting ligaments, that determines whether the spine will hold together and the spinal cord will remain intact within the confines of the vertebral column. This works for adults, but very young children have immature and incompletely ossified bones that are soft and will deform and/or
separate under tension, leaving the spinal cord as the last link between the head and the torso. Have you ever pulled an electric cord from the socket by the cord instead of the plug and broken the wires? Same problem. This scenario is based on actual physiological measures. According to Huelke et al,1 "In autopsy specimens the elastic infantile vertebral bodies and ligaments allow for column elongation of up to two inches, but the spinal cord ruptures if stretched more than 1/4 inch." Real accident experience has also shown that a young child's skull can be literally ripped from its spine by the force of a crash. Yes, the body is being held in place, but the head is not. When a child is facing rearward, the head is cradled and moves in unison with the body, so that there is little or no relative motion that might pull on the connecting neck.

Keep your babies safe. We love them, too!

Busy Bee

2008-02-20T12:10:00.001-08:00

It's been a busy month here at our hive - John will no doubt hate that analogy, what with his fear of bees and all.

Because we homeschool (or maybe that's just an excuse) I try to really go all out for the little holidays, too. Valentine's Day is, contrary to popular belief, NOT just a "Hallmark Holiday." It is the feast of St. Valentine! No, we don't reserve that day for the only expression of love year round, and no we don't feel the need to spend sixty two dollars on a dozen roses just because the florists say it's a rose day. It's one of those fun days when we can go a little beyond the call of duty and have some fun things to do. The kids woke up to a decked out table, which I learned the night before was, "The best part of Valentine's Day." (Whew! Good thing I had already planned the table!)

We also had a "do - over" for the girls' birthdays. Sky's was back in December, but an early December cast meant we weren't going to risk getting sick and then we DID get sick and missed Christmas as well. January was supposed to be the second attempt for Sky and an early birthday for Jameson, but then we all got the flu! So, we finally were able to bring out the party supplies this past weekend and had a very nice family gathering. It was great seeing those who could make it, and we hope we can catch up with the rest of you soon at Easter!

Let's see - what's new with Jack? Wild man insists on climbing up on EVERYTHING now. Last night he grabbed John by the finger and led him into the kitchen, pointed at the stove where I was plating up dinner, and then walked over into the dining room and pointed to his highchair! Not only is he EATING - he's enjoying it!! I wish I could say the same for clothing and coats. It was 18° outside today and this child is convinced that a jacket on his body will melt him, I think. Oh - speaking of clothes - he got his first pair of big boy shoes!!! We are firm believers in soft soled shoes for kids with developing legs and feet, but his Pedoodles boots just aren't quite up to wet ground in the backyard. Since that seems to be his favorite place, we decided it was time to get a pair of soft rubber soled shoes. The first pair were stride rites - a size 6.5!!!! But, he refused to walk in them at Laurie's, startled by the sound of the helium machine (which sounded exactly like the cast saw). So, we took them home and sure enough, he did a zombie walk and fell over, crying. The next day we took them back and got some lovely eccos and now he's super stylin' in his big boy shoes that he will even sleep in, if I let him. Yay! They're nice and flexible and still good on the concrete. This one is going to keep us on our toes this spring when the weather finally warms up!

Without further ado - the month in pictures (sorry for the yellow cast - low lighting inside and I'm not feeling up to photo editing for color right now - I suspect I have gallstones, so bear with me for a bit).

"I SEE YOU!"

2008-02-13T13:37:00.000-08:00

Any time I pull out my camera, I either get the super silly cheesy grin or a shy boy who won't look at me. So, very often I will say, "I SEE YOU!" From his profile, I immediately see his dimples deepen and he'll eventually turn his face to look at me. But, it's his little game - his way of asserting control.

He was just sitting up on the cube, clicking on the keyboard, and one of his sisters put their hat on him. He loves his sisters' hats, but will he wear any of the dozen darling BOY hats I have for him? No. Never. Rips them off immediately.

We were all giggling at him, in his plum newsboy cap with the embroidered flowers and I grabbed the camera. He turned and looked at the computer, pretending to be oblivious to me and the camera. Until I said, "I see you!" He smiled, still keeping his face forward, and said, "I SEE YOU!"

His very first sentence!!!

Literally, not a week ago I was considering a call to our primary care doc for a speech eval. He had missed so many of his speech milestones I was beginning to get concerned. Then, in the last week, it was, "Maaaaama," then "Dadda," then, "No," and "apple," and "Uh oh," and "choo choo," and something similar to "all gone."

And today - the little man busts out a three word sentence on me!

Here is his very pleased with himself response...

Superbad Silly

2008-02-06T18:15:00.001-08:00

Cast Four - A CURE

2008-02-06T08:22:00.001-08:00

We had an awesome, awesome experience in Birmingham.

First, we met with Dr. Khoury, his resident, and Kara in the clinic. He looked at our x-ray, but we only had one from June because Chicago STILL has not sent them our films. But, by Tuesday that was moot because Dr. K had his own.

We talked a lot about the prognosis. To recap, Jack's first (Miss Mehta applied) cast did not hold the correction. He started at 70° (right thoracic). In the first, by the time it was removed (same hour) it was back up. Dr. Sturm told us that casting doesn't work for every child and that we may be just using the casting as a brace until he could have surgery at age three. Cast two got him down to 28 in the cast and his out of cast x-rays were down to 47°. The third cast got him down to 22° and Dr. Khoury had us cut it off at home. He said that it can be off for up to a week without causing any problems, and that it gives time for the skin to heal.

I asked Dr. Khoury what happens from here. He said that starting with a 47° curve (presumed) at 18 months is very late. He mentioned that Jack had a slender build and that he may not have a very flexible spine (I forgot to ask after the casting). I said, "When Jack was diagnosed, we were told that a curve over 50 was a surgical curve. What happens if we have a relentless curve down the road? Does it then transition to a surgical curve?" He said no. He explained that one instance of no improvement doesn't phase him. He will do it three times before he considers it unrelenting. After the third time, he believes that it will no longer improve and then we move into a night brace. He said, in a case like that the curve will often very slowly continue to get worse in a brace and then we can go back to periods of casting if necessary. Then, at age 8 (which he said is best for this) again - IF he had a curve that deteriorated in a brace - they would just do a spinal fusion. But, he said that is if we get up to like 80 even in a brace. I wanted to hear worst possible case scenario. HOWEVER - this is working! We are SO thrilled. We know that this is nothing short of a miracle. Our son, whose curve was SEVENTY DEGREES six months ago - four months ago, even! Who we thought would have growth rods at *three* - we were told now will not EVER need growth rods!!!!!

Okay, so back to our days...
Dr. Khoury does x-rays under sedation to get better numbers, which we LOVED. Jack is completely traumatized by radiology now and has to be forced to stand, all while he's thrashing around. He said the numbers are far more accurate that way, and we totally agree. They were able to take him back 40 minutes early and we requested Versed, but Jack didn't seem to react to it. We carried him to the doors and the nurse took him at which time he screamed hysterically, reaching his arms up for us. I don't know what went wrong, but he didn't appear sedated or loopy like he usually is.

The casting didn't take long at all. Dr. Khoury came down to our room within 45 minutes and showed us his films...
Prior to this cast, he was down to 38°!!!!!! That is a ten degree improvement from out of cast 2! Dr. Khoury got his curve down to 22° - but, what really sent me reeling was not just the number, but the appearance! His shoulders were level, his pelvis was balanced. Instead of having that sharp C in his spine, where the apex is, he now just has a balanced and gently rounded curve!!!!!!! It is AMAZING - I almost cried looking at it! I can *see* now how this is going to go and I'm just in awe of his work. Every other time it was still a sharp turn in the spine, but more internal to his body. This looked like an entirely different child!!!!

The cast itself is very different. It goes under the arms - very high. Dr. Khoury said every inch is essential and he will put up with skin breakdown as long as there are no open sores. He said the arms can be up high under the arm, even causing them to "walk like a wrestler" - but that it helps that way. His cut outs are so different - and there is a tremendous amount cut out on the opposite side - which just seems logical to me looking at his curve. Jack came out of anesthesia the most alert he ever has, and the anesthesia team there is SO great! Everyone there was so great. We had some delays in trimming - we were told they would petal his cast in the OR and they didn't finish, so we had to walk down to Will's clinic and have him do it there (which took over an hour) but I hope that it will improve next time.

Jack seems so happy today. He's throwing balls around and playing with his sisters. He doesn't have any residual grumpiness and has total mobility in the cast.

The drive home sucked, though - we drove through tornadoes, I'm sure, and there were several times we had to stop on the side of the highway until the rain eased up. There were overturned tractor trailers in a few spots on the highway in Illinois and something that happened to a train near the highway, too. It was crazy! But, we made it home safe and sound after a veeerrry long drive.

Thank you all for your support and hugs!

Quick update from Birmingham

2008-02-04T14:36:00.000-08:00

I apologize in advance if you're on the board...I just copied my post there ;)

We just met with the doctor and he doesn't do out of cast x-rays until the babies are sedated. While that's great news - because radiology totally freaks out Jack and he doesn't stand still for the x-rays - it also means we don't have any numbers for you yet. But, when they put him under tomorrow we'll find out the out of cast x-rays and get a totally accurate number because he'll be sedated.

In Dr. K's experience, being out of a cast up to a week doesn't cause any real detriment, so that's good. He's been out since Friday and his skin looks SO much better already.

His process is this...

He will continue to cast until he gets three casts in a row that do not show improvement or we get down to 0. He said one is not discouraging, but three tells him the curve will no longer get any lower. I asked what happens when we have an "unrelenting curve" - do we then move on to surgery or bracing and he said, "Oh, I really don't see a need for growth rods. If we get him down to 30* and it stays at 30* after three casts, we would just put him in a brace. And, likely, over the years that curve would very gradually increase in the brace and then we could go back to a short period of casting even through later in childhood."

However, he would still have to have that "final fusion" - where they fuse his vertebrae together. (If we can't get down to zero - worst possible case scenario) He said the earliest they could possibly do that without majorly obvious influence to his growth is seven years. He said, ideally, it would be around age 8. At that time, his torso would stop growing entirely and he would only grow from the legs. But, that's still a GAZILLION times better than having growth rods.

Of course, then we'd have to continue coming down here regularly until Jack was eight - so another six years and possibly beyond.

His cast is being put on at noon tomorrow, so we have to be there at 9:30. They wanted us to spend the night but it's DD's birthday and no way I'm not going to be home for that. So, I think they're going to let us leave. They said if we have a local doc who will trim issues, we'll be okay. I'm very anxious to see what we're talking about here. It's hard for Dr. K to know how flexible his spine is and what kind of correction he can obtain. But, I know that Dr. S in Chicago got him down to 22, so that's GOOD, right? I mean, it has to be.

The worst part is that he can't nurse after 4AM and he isn't being casted until noon. That is going to SUCK. Suckity suckity suck.

But, we'll get through it. Dr. K was the type of guy you'd go sit down and have dinner with - just a totally down to earth, easy going, conversational guy. We're very happy.

The commute was long - we hit some awful fog for the first two hours, then torrential rain in Nashville, but we're here safe and sound and it's beautiful here today.

I'll try to update with some numbers tomorrow. I know some of you are as anxious as I am to get the details!

Thanks again

A turtle without his shell

2008-02-01T17:48:00.000-08:00

We're back from our home town Shriner's and all settled in. They cut off his cast this afternoon and thankfully the roads had pretty much cleared by then. Though, we did see lots of remnants of early morning accidents and mishaps on the highways.

Kelly was fast and confident with the saw and got his cast off in record time. Jack cried, but it went quickly. The girls were so thrilled to see him without his cast on for the first time in six months. Everyone is tickling his back and giving him big (but gentle) hugs.

After we got home, we gave him some time on his feet to figure out how to balance again. We played catch and he very quickly learned. His shoulders are looking great - one doesn't seem higher than the other anymore. His shoulder blades still seem very asymmetrical to me. But, all in all, we see some improvement and are really anxious to see what the x-rays show.

His first bath at home in six months was a disaster, since his fear of water has really gotten bad. He nursed in the tub and let me wash his hair very quickly, then wanted out. We put on lots of calendula and got him in his jammies for bed a little early. Now he's running around with his sisters, being a wild man as usual. I so badly wish I could say we were finished with all of this. I feel like I've teased him now - giving him a little taste of freedom, then cruelly yanking it away next week. But, our primary source of consolation right now is just knowing what capable, experienced hands he'll be in at the new hospital. I am excited to see what progress we have made and even more excited to see what progress the future holds for him. Six months down. There is a light at the end of the tunnel. It may be a speck right now - but it will grow, and with it so will Jack - straighter and straighter every day.

Check out these super cute custom photo cards

2008-02-01T14:54:00.001-08:00

Birth Announcements/

Rosemary does an amazing job, doesn't she? If you have super cute pics of your kiddos, she'll work with you to find the perfect layout - she does holiday cards for all occasions (check out those Valentine's Day cards!) and, of course, birth announcements!

With the fiasco of having Target print Jack's birthday collage SO poorly last year, we'll be sure to use Rosemary from now on.

Baby Buzz

2008-01-28T10:49:00.000-08:00

We were quite sure that the sound of the clippers would send Jack into a panic. The girls who came over to sew can attest to the fact that anything whirring or buzzing terrifies him. But, it's been months since Daddy had a haircut and since he's sick it was really aggravating him. So, I decided to give him a quick cut last night before bed. Since Jack was really interested and wasn't scared, I thought I'd give it a try. Despite a tiny bit of whining at the end, he did great - didn't even flinch. He loves being like Daddy. The girls came in and totally made him over, so he was quite pleased with himself by the end.

Today we're still sick and finding that the virus is settling nicely in various bacterial infections in our bodies - John's is in his throat and mine is in my right ear (running through my jaw, my cheekbone, and my teeth!). So, we've given up and called the doctor for drugs. Sometimes these things are just necessary, I suppose, but I hate when it comes to this.

The coughs are still very bad around here, and I am particularly concerned about Jack's lungs. Not only is he susceptible to pneumonia because of his curve, but we know the anesthesiologist will have a field day scaring us with tales of hyper-reactive airways and him being on a respirator. But, there's no way we can delay this cast change any longer - it's already SO tight, and we just can't risk him being out of the cast for that long.

So, hopefully in two weeks we'll see a huge increase in his health and wellness, and God willing we won't get yet another virus from the darn doctor's office. My sister-in-law had a great pediatrician when she lived out of town. They had a well-child waiting room and a sick-child waiting room. WHY do they not do this for every office? It seems so logical. We are typically diligent about not letting the kids play with the toys and holding him during the exam, but this last time resistance was futile and that is when we ended up with the stomach virus that ruined Christmas. I don't think we can handle another attack - clearly my efforts to stay away from people and crowds need to be more dedicated for the remainder of the winter. This virus is a nightmare and, apparently (from John's boss) we have heard it's going through all the schools in the area as well - and lasts about two weeks!!!!!! Maybe home grocery delivery isn't a bad idea after all.

And, to end with a smile - some new pictures of buzz boy. This haircut reminds me of the stories of my Grandpa - taking all five of his little guys down to the basement with the clippers. I have some old photos of my Dad and my Uncle Joe in particular that echo the look :)

(Scroll down past the slideshow for an old picture of my Dad)

Hello Birmingham

2008-01-23T17:45:00.001-08:00

A series of events this year have led us to a new path on this journey.

Despite dozens of attempts at contacting his surgeon and staff, calls were never returned and concerns were not addressed. With the assistance of the Infantile Scoliosis Outreach Program, and the amazing moms and dads on the CAST support group, we have transferred Jack's care to Birmingham. He will have cast #4 applied in Chicago in February, then the fifth one will begin our care in Alabama.

His new surgeon was one of the first trained in this method. He has the experience that we know will bring us through to the end of this process and we have heard from several parents what an ethical, supportive, caring physician he is. We feel excited and lucky to be in the ranks with his fellow patients and his support staff has already been prompt with communications and help with the logistics of transferring our care.

Although it will cost us a bit more, the travel being an additional 3 hours each way, the quality of care will be worthwhile. And most importantly, the cryptic message I posted months ago about an administrative issue was not going to be resolved. Rather than fight it with a lengthy legal battle (always wondering if the calls were not being returned or the quality of care was being compromised because of that) we have decided it is best to move forward in a facility where we are welcomed and our convictions are respected.

We will also have to go to insurance with this doctor, who is out of network. But, whatever we will have to pay out of pocket for this care will be worthwhile. No amount of debt will stand in the way of the best possible care for our son. So, we'll be on the road a little longer next time, but I know that the hands he will be in are some of the best in the business and that is worth more than words can explain.

And, some new pictures to show you our motivation...

Snug as a bug

2008-01-13T20:09:00.000-08:00

I'm afraid the cast is getting too small.

His food intake has been really low, no matter what it is. He's nursing a lot, which could be because he's not eating, or it could be because it's more comfortable to drink than eat.

The hips of his cast are very tight - and they should be, but even tigher than normal. And, we think the shoulder is touching his strap already, which means he's grown.

I'll update as soon as I have more answers - we have some calls to make.

Success!

2008-01-11T14:49:00.000-08:00

Follow-up x-rays will be taken at our local hospital and transferred up to Chicago. :)

We'll have some number next week on how this one is holding.

Yay!

Unseasonably warm

2008-01-07T08:49:00.000-08:00

Yesterday was a gorgeous, and at times balmy, 70-something degrees and we took advantage of our expiring Zoo membership. The kids had a great time, even though the trip was short-lived. After the Zoo we went to Great Grandma's, who seemed glad to be home. I haven't emptied my camera in a while, so here are pictures from January, in general.

HAPPY NEW YEAR

2008-01-01T08:22:00.001-08:00

Happy 2008 to all our favorite people!

We had a fantastic time last night, made some resolutions, set some goals, and are working toward a healthier 2008 for everyone. While some health issues are out of our control, we will continue to work toward a straighter back for Jackson this year and work on bringing Early Treatment to St. Louis Shriner's. We'd like to raise the $10,000 necessary to buy a pediatric AMIL table so that our local hospital can perform the necessary casting for other babies and toddlers with this condition. So, a lot of thoughts are swirling around right now about how we can do that.

If you have corporate connections, please consider asking them to make a donation to the Infantile Scoliois Outreach Program. We will do everything and anything within our power, but remember this is a non-profit organization, and donations are tax deductible!! Let's get a frame in St. Louis!!! Heather (the head of ISOP) has negotiated a $5,000 reduction in price for the frames (which put the baby's head and pelvis in traction and allow the surgeons to manipulate the spine back into a straight position) for our group. If we can get Dr. D here locally to start doing it, we will need a frame for his facility ASAP (and wouldn't it be fantastic to have one HERE?).

I.S.O.P.
801 Yosemite Street
Denver, CO.
80230
1-866-417-4873
Heather@infantilescoliosis.org

Still

2007-12-28T10:34:00.001-08:00

sick!

I'm getting concerned.

The rational side of my brain realizes that he's not dehydrated and is probably doing okay, vomiting aside, but the Mom in me wants it to be all better and I can't do it!

Last night we thought we'd cleared the night. That is, until 3:45 when he woke up vomiting again. That would be the sixth night in a row. Yesterday he threw up at lunch time - which he hasn't done since the beginning - and we called our primary care doc's office. You know what they said? They said, "Oh, yeah - he'll need to be seen, but the doctor is out of town until Monday and everyone else is booked solid through Monday." NICE HELP! No nurse practitioner to talk to, no backup doc to talk to. Nothing. He needs to be seen, but too bad because we're too busy! I was FURIOUS. But, furious enough to go to Urgent Care and risk exposing a weakened immune system already battling one virus? No chance of it. If he was dehydrated or lethargic, even feverish, I'd consider risking it. But, it's just the vomiting. (Every day!)

Today, he was clingy and crying again. We thought he was just tired, and being the baby who sleeps best in the car, we left to run one errand. One. And he threw up at a red light just after we left the store. (We all stayed in the car and John ran in for three minutes to pick up something).

He's sleeping on John right now, sprawled across his arm and one leg. We just called the doctor's office back and haven't gotten a return call yet. I'm so frustrated by this. I don't think the doctor will be too pleased to hear how his staff is handling things while he's gone.

Fifth Night

2007-12-27T10:13:00.001-08:00

No sleep
Puking baby
Two more girls down

Must

Stay

Awake

Send provisions. Last one standing. Avoiding all hot spots. Hands dry from washing constantly.

Over and out.

Twas the night before Christmas

2007-12-25T19:34:00.001-08:00

...And all through the house
Every creature was stirring, (I WISH it was a mouse!)

The stockings were hung by the chimney with care
In hopes that St. Nicholas soon would be there.

The children were puking all over their beds
No visions of sugar plums danced in these heads!

Maybe more tomorrow - with a lot less rhyme.
I have more bedding to wash, and I'm calling "BEDTIME!"

Hope your Christmas day was much better than ours!

Holiday preview (don't look if you want to be surprised)

2007-12-18T14:57:00.000-08:00

I finally got the Christmas pictures taken this morning. A dear friend embroidered the girls' shirts (she ran into some problems with the original design and ended up doing a beautiful trio of sugarplum fairies). She made four matching bows to go along with the shirts, just because she's that kind of person. :) Thanks, Heather!! She also made Jack's entire outfit - it's super smooshy soft velour/velvet and has three toy soldiers across the front for our Nutcracker themed holiday ensemble.

So, what do you get after 140+ rapid-fire pictures in the bedroom? Not one single good one of the boy! I did take a separate one this morning that I was fairly happy with, but decided to just go with the group shot anyway. I'll upload all of the finalists, to see if you can find the subtle differences. Kind of like the "what's different" pictures in Highlights Magazine, for those of you in my generation. What I hope is that only *I* can see the issues with them and all of you see them as perfectly nice holiday pictures. :)

Hope you enjoy them. (If you're nearby, you will likely get a hard copy - but the rest of you will have to be satisfied with the digital images). And, now that I look at them in larger copies, I'm regretting my choice in which to print. But, oh well - none of them are perfect, so it'll do!

Hiccup

2007-12-17T08:42:00.001-08:00

We've hit a bump in the road. It's purely administrative and John and I are certain we have grounds to dispute it, but things are a bit stressful right now. Suffice to say, I am growing really tired of people assuming they know what they're talking about regarding communicable diseases and ones that have not been present in this country for decades.

it's a fight I don't have the energy to fight right now. I just want it to go away. If you've ever birthed a baby in the hospital or had to take your child to urgent care or the emergency room, you know how it feels. The nurse or administrative staff comes up, wants your insurance card, wants to chat about when you first ate strained peas and which shade of yellow your urine was on your sixth birthday and you just want to scream "SHUT UP, GO AWAY, AND FIX THIS!" That is how I feel right now.

I'm done with talking about it, so I don't want to rehash everything at this time. It is far too emotionally exhausting for me and, truth be told, it doesn't matter what someone else's opinion is on the situation (much as I appreciate the commisserating and hugs). It only matters what the administrators think and demand.

Maybe in the future, maybe not.

I am, however, happy to report that Jackson is doing very well in his third cast. We had ZERO trimming issues and no hip bone problems. I spoke with the originator of ISOP (the infantile scoliosis outreach program) who plans these enormous training sessions with doctors. (The one we first attended in August in Chicago.) We are hoping that because this local physician does serial casting for club foot, he will also be open to early intervention serial casting for the spine. We will likely have him do the follow-up x-rays for Jack in January, and I will be armed with loads of studies, information, and data for him.

It would be tremendously hard to leave the connections we've made in Chicago. But, then again, maybe they're giving us no choice with this latest issue cropping up.

Hope this week finds you all well, and filled with the smell of baked goods and evergreen! Stop to look at the glistening snow and enjoy that crisp winter air. Since we aren't able to buy presents this year, it's really shifted our perspective regarding the holidays - and in a good way. I can't tell you how many times I ran out to get just one more thing for X or a gift bag for Y. And why? Sure, sometimes you come across that one thing that is just PERFECT. The thing they use all the time, that really personifies that individual. I can think of a few gifts like that in my lifetime (I hope). Giving presents is a love language for me. I enjoy doing it. I truly do. And, earlier this season I was so upset that we couldn't give gifts, I didn't even want to talk about it. I hated hearing about Christmas or the holidays because it pained me to not have two nickles to rub together. I felt like a failure - inadequate. But, you know what? Today I'm 100% at peace with it. I know that no matter what we have all the things in life that we need and that we are so blessed in so many ways. Not having one more *thing* to clutter up someone's home may end up being more of a gift to them this year than the opposite.

Cast Two - A Success!

2007-12-12T15:46:00.000-08:00

Monday morning we drove up, prepared for an extra day. A group of friends came together and helped us to have enough for another night in the hotel, if the weather didn't hold out. They were forecasting significant ice, and a good amount had come through on Sunday, so we knew the likelihood was high that we'd be up there for Tuesday night as well.

As we drove through the edge of Springfield the trees grew more and more grey. A closer look would show that every branch, every blade of grass, every power line framing the road was encapsulated in ice. The photog in me wanted to stop and document it, but the cautious parent in me wanted to keep moving and get past it. Luckily, by Bloomington the ice was gone from the trees and we saw nothing but white blankets of snow.

We always set out in the morning with a sense of dread. The commute is no longer a fun road trip, but one of duty - a burdensome commute that leads to sleeplessness, disappointment, and the stinging slap of reality. Jack slept for most of the trip, and when he was awake he was happy to play. The roads were bone dry, almost miraculously, and we made it up to the hospital in almost record time.

Once we got in, we sat and waited for most of the afternoon. It's always hard on them, not knowing when we'll be there, and there is often a slew of miscommunication. First we were sent to radiology for x-rays, then we saw the doctor in the hallway who said to have his cast taken off (as we did last time) THEN get x-rays. So, we headed over to the cast room and waited again while L (our favorite casting angel) completed an arm cast. At last - our turn. We got Jack ready with headphones and a movie, hoping that might help it to not be so scary. Let's just say we were wrong.

The first was a long cut down the side of the cast. L worked with the confidence of the experienced caster she is and we were grateful to have Jack in her loving hands during this process. She works so quickly and gently, and is one of our favorite people at the hospital. After the cast was cut, she used her special scissors to cut through the shirt that goes under his casts, then peeled it off like a shirt.

His back looked scary. I didn't look at first. She confirmed John's concern that it was skin breakdown. She quietly stepped aside and got a small tub full of warm water and a washcloth. While he sat on the bed, she gently washed his back and it immediately began to look better. The bruising went all the way around his pelvis and was particularly bad on his hip bones. We knew to expect this at some time during the process, and were not terribly alarmed. We were so anxious about getting x-rays, we didn't worry too much about his skin. Clearly, it's far more permanent to fix his spine - the skin will repair in time.

L chatted with us for a moment about the next day's cast and loaded us up with a baby wash, skin protectant, and powder for his skin as well as a roll of cotton padding to protect his shoulders. She was no longer going to be able to be in the operating room during the casting because it was too crowded and she was needed down in the cast room, so we were taught how to protect his neck from the sharp edges of the fiberglass. This way no matter how long it took her to trim up his cast, he would not be injured by the cast in the meantime.

The x-rays were terrible again. Jack screamed and thrashed and was hysterical, as always. Luckily they were able to stabilize him and got two good images on the first try. We lucked out this time. They sent us back to the cast room - where no one was left - and then we hunted down L2 (the doctor's right hand woman whom we ADORE). She said we were free to go, but let us use an exam room to get Jack dressed (he was still in a gown). I asked if I could see his x-rays and she put them up on the lightboard. The bottom one was from today - the top from last casting, just out of cast number 1 (70°). Although it looked significant still, it was obvious that the curve was closer to the center of his body and appeared smaller. L2 said, "IT HELD!" We were jubilant!

We drove to our hotel and checked in. The parking was ridiculously expensive and it wasn't even connected to the hotel. We had to take a random, dark elevator to the ground level, then walk to the doors of the hotel. I swear, if there is an ideal hotel it isn't in Chicago. We went up to our room and dropped off our bags, then went out to find some dinner and a grocery store. On the way, I stumbled upon the hotel we stayed in last trip and the grocery store we had been to. We got coffee for the next morning (at the grocery store) and some things to fill up Jack's belly.

After returning to our hotel, we immediately filled up the bath. For the first time, we set him down to walk. He fell. It was like his legs were Jello. He couldn't support his own body weight at all. It was scary, seeing him so helpless, and we wondered what he would be like after a year of this.

Jack was hysterical (yet again) and terrified of the water. I may as well have been pouring acid on him. I was sure security would be knocking on our door at any moment. I always cringe checking into a hotel, looking around for "neighbors" and realizing how poorly everyone nearby will sleep that night because of us. The bath ended quickly because of the shrieking, and John took him into the bedroom to get him dressed for bed. His skin was already looking so much better, and we slathered calendula cream on him again.

Once jammies were on and bedtime was approaching we started trying to get him to eat. I bought two bananans (it would be cruel to eat in front of him in the morning, so just enough for him to take one, drop it on the floor, and have another). Luckly he didn't drop one this time, but he didn't eat it either. He ate about half of a banana, then abandoned it. After a few bites of a cookie, he ate two bites of a second banana. Oatmeal cookies, usually a favorite, were a bust as well. It was as if he knew we wanted him to eat it and was not just to challenge us.

We set the alarm for 2AM, the last hour he could nurse, and went to bed. Since the cast was off, he was so hungry. And with the repeated trauma of the day he needed the comfort. So, he ate. Then rolled around. Then ate. Then laid on John's chest. Then ate. Finally he fell asleep after 10. I wish I could say the same for us. The room wasn't terrible - the bed was comfortable and the same size we have at home. But, John could not fall asleep and I slept very lightly, so every fifteen minutes (as soon as I'd fall asleep) I'd see flashes of light as he would flip channels. I was getting impatient, knowing how little sleep we'd get, and I barked to turn off the TV. Then I hear click, click, click-click-click. It's the Blackberry! "WHAT ARE YOU DOING?! GO TO SLEEP!" I think it was after 1 that he finally slept. Then, at 2 the alarm goes off. Of course, this is the night the boy sleeps. I had to wake him up to eat. At 5:14 we heard the familiar scream of a hungry boy who has just woken up. 16 minutes before the wakeup call.

I got up and got out of the room - knowing my presence would just aggravate the issue. John got up with him and walked around. He finally stopped crying by 5:30 but we had to keep our coffee cups and any remnants of food or packaging hidden. He doesn't understand all of that yet and asks for things now. It's so hard to say "no, you can't have that" when you know it's a basic need. I watched the weather, anxious to see if the ice had come in the middle of the night as predicted. The windows showed puddles and drips, not icicles and sheets, so we persevered.

As it was nearing 6, we headed out the door to the hotel. We were told even though we were going second, we'd have to arrive at 6 ("In case the other baby doesn't show up or isn't cleared for anesthesia"). It made no sense, but we've learned that our feelings about a policy won't change that policy. However, we knew that the other baby WAS going to be there so we took our time on the roads.

When we arrived we went up to the second floor where we were last time. Immediately, we were told that we had to go downstairs, to the inpatient wing! The nurses are different, the care is different - it just isn't the same down in the dungeon. I was disappointed, tired, frustrated, and knew we'd be sitting there for over three hours waiting to go into the pre-op room.

Do you know what babies who are tired and hungry love? They love having strangers come into the room - especially babies who HATE anyone and anything to do with the medical profession. If you have a stethescope or a white coat you may as well be a chainsaw weilding murderer. So, please, come in - spend as much time as you can with us - and comment how he doesn't need to be scared and that you aren't going to do anything that hurts. He totally understands that, being a rational and mature individual at the ripe old age of sixteen months. And when the blood pressure cuff doesn't work, come in and do it again - and again - and again. Oh, and while you're at it, have a resident and a nurses' aide, and an assistant nurse, and what the heck - the cleaning lady come in and do it again. The screaming is fun, isn't it?

Despite the drama, we deliver a huge tray of biscotti and a pound of locally-roasted coffee to the nursing hub in the inpatient area. I see nurses walking the hall, munching on biscotti and drinking coffee. Somehow we made a lot of friends that morning. The power of food.

Finally, it's time to go upstairs. We convince them that we are competent enough to carry our own son and that putting him in the tiny baby crib with bars and a huge glass hood over the top is going to add to his pleasant demeanor this morning. Ah, at last, the familiar faces of upstairs! We are so glad to be up there again with Jack's buddies. (Or maybe it's just the realization that the end is near and Versed is coming.)

We go through the typical paperwork and authorizations. The anesthesiologist explains to us that they normally want 6-8 weeks between a virus and a breathing tube. She does her job of terrifying us into thinking his airway may be hyper-reactive and that he may be left on a ventilator for a day. We smile and nod and sign while our gut reaction is to grab him and run away from this nonsense.

His surgeon came in, greeted us, and we chatted about Jack's skin, bruising, and a new bump we hadn't seen before. He was unusually optimistic when he announced that the second cast had gotten the curve down from 70° to 47° - even out of the cast! This was huge. The progress is usually much slower, and he had told us last time that he didn't think this would be the end for us. However, hearing this news a new light entered the room. We were thrilled.

Jack got the Versed this time, but didn't really settle down. I told John to lay him in the bed - like we always do - and then they wheel him out and he's none the wiser. But, this time someone offered to carry him - says she loves babies. We should have known. Bless her heart, she thought it would be best - that she was being nurturing and kind. But, remember - she's got a stethescope. So, about three feet from us he started crying. The Versed doesn't help this time, and we leave the room with the last image of our son screaming for us as he's being carried into the OR.

Once again, we make our way down to the cafeteria and they are closed for breakfast. This happens every time - you think we'd learn. We head back upstairs to the OR waiting room and see the other baby's mom and dad. It's so nice to sit and talk with parents who REALLY understand. We aired our grievances and shared in our triumphs and setbacks. Their beautiful baby came out first. Her improvement was HUGE! We were utterly thrilled for them. Sometimes it's hard to hear of another baby improving or being cured, but in light of our progress that morning we were ecstatic. It was working for both of us!!!

Then, it was our turn. Dr. S came out and said he had done very well - no respiratory issues whatsoever. And, drumroll please, it was down to 22° in this third cast!!!!! He was downright giddy - so obviously pleased with himself (I imagine it's hard not to be with two parents gushing and singing your praises in the hallway). His entire demeanor regarding Jack's spine has changed. Just as we were asking if we could stretch out visits, now that we're seeing improvement, he was suggesting the same. We always seem to be on the same page. We asked if there was any way to have a local doc do x-rays and send them up, and he mentioned he knew someone here (He went to Wash-U) and owed him an (unrelated) email anyway. So, he may be able to call in a favor and have us established here with a local doc as well. (AND - he said the underground rumblings are that perhaps this doctor may do casting in the future, and he wants to get him up to Chicago to see how it's done!) Fantastic.

We waited for a while and were surprised we hadn't heard any crying yet. I asked a nurse to check on him and she came out and said, "He's great. He's sleeping!" Sleeping?! MY son? Wow. When they brought him out, he was groggy, but mostly quiet. Then, as they turned the hall I saw John standing over him in the crib, trying to give him a binky. He was coughing. If you're a mom - you know this cough. I said "turn him on his side, he's going to puke." The nurse looked at me like I had three heads, John didn't react. I said, "TURN HIM ON HIS SIDE." She said, "no, he's fi...." BLAAAAAAGH!!!!!!!!! He threw up in the bed, coughing and choking. John picked him up and he threw up again. The nurse was alarmed, "What IS this? We didn't give him anything!" I said, 'It's orange, it's Versed." She said, "There's way too much here to be Versed," and he threw up again.

A few minutes later, we were carrying him back down to the inpatient wing and he was settling down. He had a 7 year old, very active, very loud, bipolar room mate by this time. Every time he'd close his eyes, the boy would scream that he wanted to move the bed, that he wanted music on, our would operate the bed himself with a loud clunk and hum. His mom wanted to chat and we just wanted silence so Jack could sleep off the nausea. No such luck.

I finally nursed him, despite his nurse downstairs saying to wait, and he was fine. He would fall asleep, then startle awake in a fit of screaming and crying, then fall asleep again. We had to take him to casting ourselves to get his cast trimmed up, but L did a fantastic (and super fast) job and we got out of there in record time. Back in the room, I hunted down Jack's nurse and got our discharge papers just as he drifted to sleep on John's lap so she said she wasn't worried about vitals. Hospital policy - you must be escorted out - so someone came to walk us out AND, why not, let's wake him up and take his vitals for the 9,473rd time of the day!!!! So much for that.

We get up to the car and the roads are wet and cold but no ice!! We cancel the hotel room, check out via phone, and hit the road. The drive was long, it got dark early and the last two hours were particularly hard after an emotionally exhausting day and very little sleep. We sort of operate on adrenaline all morning and then the fatigue hits when we're stuck in the car all those hours. It was a much longer drive home because of the rain, but what a blessing to JUST have rain! All the prayers, all the positive thoughts, were answered. We arrived safe and sound that evening to a warm house full of children and a pan of brownies! (And they were still hot)

OOOH - THAT!

2007-12-09T17:21:00.000-08:00

That's what Jack said when he woke up to quite a surprise in the car...

Happy St. Nick's Day!

2007-12-06T14:39:00.000-08:00

Today is the feast of St. Nicholas and he snuck into the house late last night and filled the stockings with treats - coins that represent the dowry he paid for the three poor girls and some small toys for the little ones. Jack got a set of Little Einsteins figurines and these little Jack's-hand sized trucks. SO cute!! He's sitting on the floor with them as I type, putting a Kelly shoe into the back of one. They're the farm equipment line of Tonka trucks with small faces on the front and the bright colors seem to keep his interest. I never imagined I'd love the whole John Deere thing nearly as much as I do - being born and raised quite the city girl - but this little set of farm trucks includes a couple classic gold and green that reminds me so much of the John Deere line.

Today is blustery and cold - and the snow has just begun to fall. I pray it's settled and melted by the time we leave for the next cast. Speaking of, if you haven't heard by now, we had to cancel the last casting. Jack suddenly spiked a fever in the middle of the night and it was over 104° - going down to 102° even with motrin on Friday night. All day Saturday he was fussy and miserable and feverish, and just wanted to sleep and nurse, so we thought we'd better call the hospital. Thank goodness the resident was there and spoke with us, as well as the Weekend Coordinator. They called Jack's doctor, who wasn't in town, and spoke with anesthesia when no one else could be reached. Because of his age, they said it was too risky to intubate and put him under general with a recent fever and cancelled our OR time. By Saturday night he was awake, feeling much better, and the fever had broken. Go breastmilk power!!!

Fast forward to Monday and we finally reach someone at the hospital. We now need to go to the doctor and get a statement of wellness from our local primary care physician in order to even get a time slot in the OR. So, we get an appointment, drive all the way over, and spend an hour at the doctor to get a piece of paper that says what we already know - Jack is fine. Faxed that over, and we are on the schedule for Tuesday morning. This works out so much better anyway because now we can have his cast cut off on Monday and get x-rays, then go in for our Tuesday morning slot.

Not much else is going on here. Today is our 11th anniversary and we're having a quiet (Ha!) dinner at home with our whole crew to celebrate our 11 years of being a family - and tomorrow is Skylar's 8th birthday. She's been really keeping her chin up about not having a party and completely lost it today after lunch. But, I think we have some special things planned for tomorrow that have lifted her spirits - even if it snows, we'll play Yahtzee (her favorite!), have family movie night, and hopefully the roads will be okay to go to Our Lady of Snows and see the Christmas light display like we had planned.

Maple Frosted Baby

2007-11-28T18:07:00.000-08:00

For dessert tonight I made a spice cake. Not just an ordinary spice cake, but one with homemade apple butter and a homemade non-dairy maple frosting on top for my boy. Jack still can't have dairy, and the rest of us are lactose intolerant anyway, so it's a good thing. :)

And, what's the best part of a cake with homemade frosting? Okay, the beaters - I wasn't going there. But the scraper is second best. That's what you get when you have a sibling (or an Aunt close in age!) who gets the beaters this time :)

I hope you enjoy this little slideshow - okay, enormous slideshow - of Jack's first frosting experience.

Thanksgiving Weekend

2007-11-26T08:37:00.001-08:00

We had a nice cozy relaxed Thanksgiving weekend. I hope yours was as well.

Jack was entranced by the Christmas tree - sorry the snapshots are so blurry - he's fast! Once it was lit, he was afraid to walk by it. When it was his turn to put on his ornament, I went to take a picture and he threw it on the floor. We'll have to see if we can order another one from the Downtown Disney shop. Silly boy. He had it in his hands for maybe three seconds. So, he's putting on the metal jingly gold one this year (totally indestructable). He'd hold it out, then pull it back, then put it on the tree, then pull it off again.

Six days until we leave for cast #3. This never gets easier. Thank goodness we had enough Marriott points for a free night this trip because we are barely squeaking by for this trip.

Some pictures to leave you with a smile, I hope.

Knocking out infantile scoliosis with early intervention

2007-11-13T07:46:00.000-08:00

This photo spread deserved the second post of the day status :)

Fall Photos

2007-11-13T07:16:00.000-08:00

We had a beautiful weekend here - warm temperatures (even borderline HOT inside because of the humidity) and a chance to do a test run of Heather's beautiful custom shirts for Jack. Check out the look on his face while walking around with his little push toy. He's so mischievous!

Have you seen this, have you heard about this?

2007-11-07T09:00:00.000-08:00

The Handmade Pledge - what a beautiful thing.

I honestly thing it was sprung forth from the post-Made In China -backlash, but it's a fantastic idea. I will pledge to do whatever I can by hand or purchase handmade. There is positively nothing like a handmade gift. To know that the person not only thought of you, but took the time to gather the materials (or purchase them) and created it for you speaks volumes.

Jack has some handmade clothing now that is, by far, our favorite items. He has a few more coming, too. Every time I put them on him, I know that someone out there loves him or cares about him enough to have taken their day, their fabric, their time to put it together for this little guy. Some of our kids' favorite things over the years have been handmade - QUILTS!, a name puzzle, a painted shelf, a cross stitch, birthday overalls, a name train, ornaments, photos, picture fames - you name it. They know who made it for them and consider it far more precious because of that.

So, this year especially, when money is tight for so many people, consider the gift of something made from the heart. I already have a special project planned for my family this holiday season. Check out sites like www.marthastewart.com and www.familyfun.com and www.craftster.org for ideas for the special people in your life.

Home again, home again, jiggity jog

2007-11-06T08:34:00.000-08:00

We are NOT going to Chicago tomorrow! Yahoo!

As much as we love to know how things are working (or, as is the case more recently NOT working), we are relieved to get this news. L called today and said that Dr. S would be out of town tomorrow. She said we could either still come and get x-rays or just skip it, it was up to me. Since this was to be a topic of conversation for our appointment anyway (our concern about repeated x-rays, and the cost and difficulty of traveling up every 3 weeks if we are re-casting every 6 weeks regardless) it was a perfect opportunity to bring it up.

So, tomorrow we are staying home and we will just return in 3 more weeks for a re-cast. Yay!

You might also notice some new elements to the blog here. Sorry - I know it's a bit cluttered and busy, but it brings in a little extra right now and it helps. So, if you get a chance, check out the new features!

You have no idea...

2007-11-04T07:30:00.000-08:00

I had a comment left on this blog by someone we don't know, who left it anonymous.

The person said, in part:
It worries me that you are still locked in the initial grief of your son’s diagnosis. You are victimizing him and your daughters. You need to get a grip and find the important things in life. Function as normally as humanly possible. I am praying that you are able to step back and rationally assess your situation and find a way to move forward in a way that is healthy for every single member of your family – including yourself and your marriage.

HOW DARE YOU!!!!!!!!!

You should be ashamed of yourself, projecting those assumptions into my life, into our family. You said your nephew had medical issues, not your SON - you have NO idea how I "should" respond to this or how YOU would. It has been FOUR MONTHS since Jack was diagnosed. Do you know how YOU would react? No. Do my personal thoughts, feelings, and emotions mean that I sit around the house crying all day?? NO. I am not "victimizing him and my daughters" - you don't know me, you don't know my daughters, you don't know my son. I DO function as normal as humanly possible. I write this blog to get my feelings out and share Jack's progress. GET A GRIP?? I'm disgusted by your comments, your generalizations, your lack of sensitivity, your lack of understanding. Knowing a relative who is in an entirely different situation does not give you the right to say ANYTHING about my family or how I handle things. My children are beautiful, well-adjusted children, but I don't have to tell the people who KNOW us that because they SEE it.

Please, don't waste your time or mine with this blog anymore.

Epidemiology

2007-11-01T10:22:00.000-07:00

Just as communicable diseases begin, so did our conversation today.

First, we were informed that the FluMist vaccine contains a live virus that sheds for up to 4 weeks. Although our children do not receive it, after speaking with other parents it has become obvious to us that it is commonplace for children to be brought right back to school and public places. I sent out an email to family, asking them to inform us if they've been exposed (or if their children have) and it evolved.

Kids get sick. It's seldom malicious. I'm sure our kids have gotten others sick over the years, too. Sometimes they aren't showing symptoms until after the gathering and, by then, the damage is done.

On the news today, they reported that we are expecting a pandemic flu this season. It's always extremist in the media, but it still raises concern. It is one thing if our kids got sick in the past. It is reasonable. You manage symptoms, treat the illness, rest, etc. An ounce of prevention being worth a pound of cure, we spent some time really evaluating our risks this year.

Children with scoliosis have an increased risk of developing pneumonia. What may seem like an innocent cold or cough, or even be chalked up to allergies, may end up being very serious for Jackson. Even if it doesn't develop into a serious illness, if he so much as has a cold, he cannot go under general anesthesia. The risk of a respiratory reaction is much higher and the hospital won't administer anesthesia to a sick child. (Nor would we ever want them to.)

If he cannot be properly anesthetized, we get bumped. The operating room at Shriner's is a busy place. They usually book it up at least 6 months in advance. Add to that the fact that the casting table has to be brought in and occupies a lot of space, there are very few days that they even cast. If we got bumped out due to illness, we would lose more ground on the curve progression, we wouldn't get him re-casted in the right time frame, and who knows what that would mean for Jack and the time frame of when he would be facing surgery.

So, we've come to the conclusion that we just need to hunker down for the winter months and continue to quarantine ourselves. We're going to stay away from groups, as well as stores, and do whatever we can to stay healthy. It will absolutely pain me to miss time with our families this holiday season, but not nearly as much as if Jack got sick, and he is always the bottom line and our first priority.

Trick~or~Treat Tuesday

2007-10-31T07:48:00.000-07:00

Edwardsville has a long running tradition of hosting a Halloween parade. So, instead of trick or treating on the 31st, they do two nights of trick or treating. Last night was our night, and we had a few friends over to share in the fun! We had SUCH a great time - the kids were so excited, and you should have heard the chorus of "Trick or Treat!" when a neighbor would open the door. They got great treats and almost every house had the light on in our cul-de-sac and the one that mirrors ours. Such a great time - I was as giddy as they were just watching their excitement. We are so blessed to be surrounded by great neighbors, in a perfect neighborhood, with good friends. Our girls especially had a blast having other kids to share in the fun.

And, what is a blog post without PICTURES? You know me better than that. ;)

One quick Jack-related aside - a sweet mom I know send him a pair of Hanna Andersson "zippers" - one piece pajamas that zip up the front. Guess what? THEY FIT! Perfectly. He has been crawling around, climbing the stairs, no slipping on hems, no rolled up cuffs - a dream!!! They're fantastic. (So, note to the CAST groupies - www.hannandersson.com - size 90 fits great over the cast!)

And, again - without further ado...

Boo at the Zoo Spooky Saturday

2007-10-27T13:48:00.000-07:00

Ten years, off and on, and it grows bigger every year. We arrived at the Zoo to find that the lot was full on our preferred side, but luckily I spied a line of cars leaving and patiently waited for them to re-open the lot. Just in time! We pulled into the 8th spot right by the walkway. Lucky us. And, because my mother-in-law got us a Zoo Friends membership for Christmas, parking in the lot was free!!!! (A $10 value - but there is always free parking in the park - it just depends on how far you want to walk).

Last year we missed Boo at the Zoo because Jack was too small, the weather was off, a multitude of reasons.

This year, we decided at the last minute to go. Around 9 this morning, the sun was out, the weather was mild, and it was PACKED because of it. The event is free, so you can imagine how many children are there - some without costumes, but most of them were dressed for the party. As we walked into the zoo from the Living World we were directed to our right. The line wound around (for those who live here, past the Children's Zoo, past the Insectarium, and all the way back by the Elephant Walk displays!). It was the longest line I have ever seen. However, it moved consistently and went quickly. Everyone was in good spirits, the sun was shining, we were all comfortable, and Daddy got some pretzels to pass the time.

Once we reached the hub of our "path" we realized why - it was the Target sponsored display. They were about to close - it was an hour and fifteen minutes from the car to the Target candy. Craziness. Because they were closing, the candy handlers were insanely generous - Piper walked up and one girl had two hands around this enormous ball of candies - and she dropped it all into Piper's bag! We turned the corner where two radio stations were and one insisted on taking a picture of the girls (maybe it will be on their website!). They all gave out goodies, we found Build A Bear Workshop (who is a local mom-owned company and really great to the community) - they had cute puffy sticker sheets and packs of, what else, Teddy Grahams! So cute. A hospital was giving out bags of pretzels, which we appreciated, and then we turned the corner and saw THE LINE. The event was divided up into several lines all with spooky or seasonally-appropriate names. Apparently, what we had just been through was one sponsored by four companies. The big line was sponsored by something like 9. There were people, five and size across, for as far as the eye could see. Because Target had been so generous (about to close up the hand-outs at noon, as scheduled) we were nearly full anyway, so we headed back out.

We got back into town in time for our downtown Trick-or-Treating here and drove by to see what was up. There were businesses sitting outside with bowls of candy, so we went and said hello for a bit. (We had decided a while ago that we'd skip it if they had to go IN to businesses - kids + little boutiques + costumes = no, thanks). The local precinct had officers at all the walkways helping the families across and we had a chance to chat with a few other families. It was a nice afternoon, and we're finally back home enjoying the quiet and resting our feet. What a day!

Without further ado...

The gift of good friends

2007-10-23T08:40:00.000-07:00

You remember Dannielle? Her blog is over there -------------->

You know, the Wild Things quilt? Yeah, THAT Dannielle!

Well, several days ago she made an offer that sort of took a bit of time to process. She offered to have a sewing day for Jack - and get some of the local girls together to make things that might actually fit! I was talking to another dear friend last night and she mentioned something similar - so tomorrow we're going to do what we can at my house while the kids play. Maybe Jack Jack will actually let us get something done! (ha :))

The truth is - this boy has so little he can wear. I thought zip-front hoodies would work, but no dice. Since the cast comes up over the shoulders so high, the top of the zippers hit him around mid-cheek. So, if it's unzipped, they fall off the cast entirely, and if it's zipped up it ends up right around his mouth (and IN the mouth). He freaks.

And, pants - Oh, don't get me started on pants! We have several pairs of elastic-waist knit pants that just slip RIGHT off - they're all about an inch too long, too, so he slips on them. The second he has an opportunity, he pulls them off. This boy!

It just seems like he's destined to be naked! I was able to get away with a tee shirt much better late summer, but today it is very chilly - downright cold. He's in his dia de los muertos hoodie from Allison (which is a modification of a pattern - having shorter sleeves and a larger body). It's genius!

I'm thinking when T is here tomorrow, I'll see if we can hem up some of the shirts that are way too long in the sleeves at least. She has a serger. (YAY!)

What I really covet is one piece outfits, but none fit. And, to do a one piece, you really need a snap press (which I sold years ago). Unless I made some crazy zippered-leg one piece! Oh, that would be a sight. My little Michael Jackson.

We looked for pajamas for him at the store the other day and nothing would have worked at all. He needs a 3T in body, but you know how those buttons slip back open on menswear style ones? Oh, he'd have a fit with those! And the pants were ENORMOUS. John suggested I swap pants with a smaller size (tsk tsk) but I didn't. I need to see if anyone has some Hanna zippers for sale so I can try those on him. With the cuffs at the bottom and on the arms, I think they may adjust enough that they'd work - but you never know. I do know that blanket sleepers don't work at all - and I do know that Target carries zero pairs of pajamas in a 3T that have no feet (except aforementioned menswear ones that would require me to buy two sets of them - creating a $40 pair of pajamas!).

So, today I am optimistic and excited about the possibility of handmade clothes, time with friends, and comfort and quality for my boy. It sounds so simplistic - clothing that fits - but it is indeed a gift, as are my friends. (Thanks, D&T) :)

Boo to you and you...

2007-10-22T10:37:00.001-07:00

For those of you familiar with the greatest Halloween party on Earth (also known as Mickey's Not So Scary Halloween Party) - that's the song they play over and over throughout the night. But, last night we were "Boo'd" - our third year of playing this little game with neighbors, where you leave a small gift on their front door with a little note and a ghost to hang on the door, so everyone in the neighborhood knows when you've been Boo'd and they can move on to an unmarked house.

The girls squealed and looked at each clicker, every straw, the candies, the trinkets and treats. It was fantastic! They had even more fun the night before delivering our Boos to the neighbor across the street and the one just two houses down. Quite stealth, those girls are!

In the process, Jack got his first taste of candy - a lollipop he ate while being held (and very closely supervised) by Daddy. He made a HUGE sloppy drooly mess of himself, so I thought I'd take that opportunity to document the answer to everyone's favorite question, "HOW do you give him a bath!?"

And, while on the subject of questions, after a long conversation with my amazing Aunt last night, I've added a list of wishes and wants to the side here. I know many people are not in a position to help, and I totally understand. We don't expect it. But, for those who want to know what they can do - there are some ideas. I know that this year has many families reeling, particularly with the holidays coming upon us. But, for what it's worth, the ideas are there. Your prayers and positive thoughts are the most appreciated of all!

I see skies of blue and clouds of white

2007-10-21T13:19:00.000-07:00

What a beautiful day!

It is 83° today. The sun is shining in a clear blue sky. All the windows are pulled open as far as they'll go - no air conditioning, no heat, just a perfect moderate. Through the dining room sheers, I can see the crimson leaves on the tree we inherited when we purchased this home. I saw the buds in the spring turn to tiny white flowers and now a beautiful autumn change. What luck!

The girls are enjoying one of the last warm days, and I can hear Piper squealing in the backyard, running from her sisters.

The blustery wind is pouring from our front windows to the back - so much so that I decided against lighting the beloved Yankee Candles (in "Harvest" and "Autumn Wreath"). But, there is the faint smell of apple cinnamon oatmeal muffins that I baked this afternoon for breakfasts this week.

We will finally get out the Halloween decorations in a moment - not for lack of wanting to, but for lack of motivation and time. The girls have been pestering us for weeks now, and there was always something more pressing.

Were it not for them, I'd skip it, even though Halloween is my favorite holiday of the year. It just seems like so much work with only 10 days left in the season. But, it matters. Sometimes normal matters more than the holiday itself.

So, we will put on a happy face and stick plastic spiders to our fireplace, hang the wooden witch that is as old as Skylar, and do so with a smile knowing what joy it will bring to them.

Angels Among Us

2007-10-20T14:30:00.001-07:00

They are there - in the least expected moments you will find them.

We found them yesterday all around us in a moment of panic with Jack's cast. The amazing woman in Chicago who not only makes magic happen, she does so quickly! The local resident who somehow, someway was convinced that it was okay for him to trim Jack's cast. Our Shriner's, who allowed it to happen. The lady who gently rubbed his arm, reassuring him with me, as the scary-sounding cast saw hummed nearby. And, above all, my Aunt and Uncle who met us at the hospital to watch the girls so that we could attend to Jack.

The cast is beautifully trimmed today and Jack woke up 100% back to his typical self.

I am overjoyed - and to celebrate we made the trip out to the pumpkin patch and had a great afternoon. It is a very sunny, beautiful 84° here and despite some silly faces in the pictures, I'm sure you can see that they had a fantastic time.

Freaking out

2007-10-19T11:21:00.001-07:00

Skin is raw on his pelvis

Cast is too tight and needs to be trimmed

John is at a meeting!!!!

The stupid phones are dead!

Jack is screaming when I touch his hip

Won't sleep - cries in the car - 4.5 hours from home - end of the day on Friday

COME ON!!!!!

Numbness subsides

2007-10-18T19:14:00.000-07:00

Adrenaline is gone, endorphins disappear, and all that is left is the sharp pain of reality.

You go into practical mode in the hospital. We get from home to Chicago to the hospital and through each step of the process. We function on autopilot, because it is easier to do so. We are pragmatic in our approach, and almost emotionless - just going through the motions and loving on Jack whenever we can. Why? Because we cannot bear to see our child going through it and cannot possibly comprehend or process what is taking place.

Once we get back to life, back to our routine, it hits. We talked about it tonight, on the way to get groceries - the utmost in mundane acts. We ask the questions, are rational and thoughtful and practical in the hospital. We absorb the information and accept it. It is when we get home that things are allowed through that exterior shell that protects us, and Jack, from being hysterical parents flooded with raw emotion.

While we are there, it is about Jack - entirely. Tears don't help him. We advocate, we act, we participate, but we do not feel. We cannot feel.

Tonight - it hurts like hell.

Cast #2

2007-10-17T17:38:00.000-07:00

Sorry it has taken me so long to update. Sometimes when things don't go as planned, it takes me some time just to process and compose my thoughts. John said on the way home, "I feel like I should send out an email, but I don't even want to. I'm sick of delivering bad news."

That night was fairly uneventful. Immediately after the cast was cut off, he couldn't walk. He would pull to the right side, where his curve ends, and couldn't seem to balance well. He felt so small, so frail in our arms. I was afraid of hurting him. There was a little stone embedded in the top left of his chest. It was from the girls' Superman shirts that they wore to the Relay For Life this summer. I don't know if it got in his cast through his own clothes in the washing machine or just something he picked up crawling around, but John squeezed it and it came out.

We walked to radiology (down the hall) and took the x-rays, and the resident let me come into the conference room to look at the lightboard with him. I pointed out how skewed his pelvis was, because he was thrashing, and questioned whether or not the numbers would be accurate based on that. He agreed that it could change things, but wasn't sure how much. At that point his curve was back up to 70° and the RVAD had increased to 50° from 45.

We drove along in the rain toward the hotel. I hadn't printed directions from the hospital to our hotel because I didn't think we were going to have his cast cut off the day before. So, we attempted to navigate the streets of Chicago based on reverse directions and miraculously found our hotel. We decided since Jack was wiped out from the trauma of the cast saw, it was best to let him sleep as long as we could and get some dinner. Then, we headed back to the hotel to check-in that evening.

There were few parking spots left, and a long line at check-in. After getting settled into our room, went to the grocery store nearby to pick up a few things. There was an underground parking garage where guests could park through closed doors, sbut it scared me down there - very isolated, very dark - unsafe. So, John dropped us off and went to park.

When we got back to the room, we gave Jack his first bath in 9 weeks. His skin was rough, and flaking through his clothing all over us. We made the mistake of both wearing black and we looked like we had been caught in a snowstorm. The hotel bathtub was shallow, and we thought he'd be okay taking a bath by himself. I unpacked his new pirate ducky and we filled up the tub. The second his feet touched water he shrieked - he was kicking his feet, terrified, thrashing around. We pulled him back out and I got in to hold him. He still wasn't happy about it, but he let me bathe him. I gently washed off what I could with warm water, being careful not to scrub his sensitive skin. After the bath, John put lots of calendula on his skin and got him dressed for bed.

That night he wasn't supposed to eat past 1AM in for the anesthesia. Of course, that night he slept until after 2, and missed that nursing. He cried, and didn't want to go back to sleep, but John finally got him to settle down. Unfortunately, at that point we were up and couldn't fall back asleep, so we tossed and turned for another hour. At 4:45 he was up again, and so were we.

We made the drive to the hotel, astounded by how many people were out in Chicago at that hour. Ours was one of three cars in the parking lot at the hospital. We got in around 5:30 and headed to the same day surgery ward. We had to wait for a bit in the surgery waiting room because the nurse wasn't there yet (we were early), but once she arrived she got us all settled in. Kathy was great with him, totally patient and understanding, and had a great disposition.

For the next three hours we sat - and waited - and waited. Although we were guaranteed we'd go first, something came up in the middle of the night and we got bumped. At least a dozen people came in to apologize. Jack finally fell asleep in John's arms and I noticed my shirt was soaking wet. Luckily it dried before long, but I don't think I've been that miserably and painfully engorged since he was a newborn. I was sure I'd end up with a plugged duct or mastitis after that!

Around 9, we were led over to the pre-op area. We got settled in with our good buddy Ruby, who is so great with the grumpy NPO kids. She gave Jack stickers, a teddy bear, played with him, read him books - just above and beyond what we could have hoped for. Anesthesia came out and chatted with us for a bit, then we got to talk to Jack's doctor and care team. They gave Jack Versed again, and he sang songs, laughed, and played until it was time to go back. We kissed him goodbye and they wheeled him back without a tear.

We hurried downstairs, with Ruby's insistance, to get breakfast but we were too late. They were closed by then. So, Jack wasn't the only one who hadn't eaten all day. We returned to our room and waited for his doctor to come and update us. Within the hour, he came in and talked to us about the results. He had gotten Jack's curve from 70° to 25°. He put it on a bit tighter, hoping that it might help the correction hold, but he reiterated that it wasn't likely going to be the end for him. We talked about his surgical options, and asked some questions. I asked if re-casting more frequently might help, and he said he thought it might. Since at his 7 week follow-up we still saw it down to 55°, I knew that we had to get another cast on him more frequently than 9-10 weeks. But, Dr. S feels that he'll likely end up having surgery either at age 2 or 3. He thinks the curve was just too far progressed (being past 50°) when this all started. He spoke with another doctor who has been doing the early intervention for several years and consulted with him regarding Jack's care. The other doctor agreed that it may just be too far advanced to see correction through casting. We also talked about the risks of a curve this bad and the effects on his lungs and heart. All of us are in agreement that casting is his best option at this age, and the surgical methods are just not made for babies this age/size.

So, now we wait. We return in 3 weeks for x-rays to see if this cast is holding him. Either way, we're going to keep doing this for at least another year or so. Even getting it down to 65° is better, surgically, than starting at 90° (which is where Dr. S. thinks he'd be if we hadn't casted this past time). His options include Growth Rods - which are inserted by scraping the outer layer of the spine off and inserting screws and rods into the vertebrae. The problem with this is, he's so small and Dr. S. says that there's only so much of that outer layer - eventually, the vertebrae start fusing together on their own (almost like as if they were healing) and then the spine stiffens. So, they don't know how many years that would buy Jack to grow - he may end up not growing any further once he hits a certain age, if we do rods. In essence, it stunts his growth signifcantly. They also telescope in the middle for expansion, but we would have the major spinal surgery (that lasts 3-4 hours) to insert them, then every 6 months they go back in and do a 1.5 hour surgery to expand them.

OR we could consider VEPTR - which is like a growth rod, but it attaches to the ribs and the bottom of the spine. It is better because it doesn't cause the spine to stiffen, but they just don't know what it will do to the chest wall. And, in a child like Jackson, who has no other health problems and doesn't have a chest wall deformity, we don't want to put that on him - they just don't know what the longterm effects of stiffening around the ribs and chest would mean for his lifespan.

Right now, Dr. S. said there just aren't a lot of good options. He said, within 8 years or so, I think there are going to be better things on the market, but right now - there just isn't much. He added, "We have to try to fit a treatment to the curve, not fit a curve to the treatment - every child is different, every curve is different." And, he's so right. It's reassuring to know that this care is Jackson's treatment. And, we'll continue to get that for him in whatever forms we can.

Numb

2007-10-15T20:08:00.000-07:00

After rushing up to Chicago, we met the resident at the hospital in the cast room. He cut off Jack's cast after several terrifying (to Jack) attempts with the saw. He screamed for over a half hour between the cast removal and the x-rays they insisted on.

The measurements are terrible. The day he was casted, the worst he has been, was 64° (official measurement). Today, after more than 9 weeks in the cast, the curve is 70° - it has gotten worse, based on today's measurements, after all we've gone through - all the tears - all the frustration and risks and misery.

It's late and we have an early operating room time, so I need to get off the computer and get to bed in this hotel room, but tonight I don't know what the future holds at all.

Tomorrow, Tomorrow

2007-10-14T14:29:00.000-07:00

Today the house is a flurry of cleaning and packing as we prepare for yet another trip to Chicago.

I no longer see the trips as mini-vacations. I dread the traffic, which is gridlock everywhere you go - so unlike our suburban roads of home. There is no "let's run over to this area" in Chicago - there is "let's try to get to the hotel in less than two hours." The novelty has worn off.

As I sit and update the iPod for our hours of driving, I hear the girls upstairs. My heart flips between aching for them, knowing that we will be so far away and terrified of the what ifs in life, and relief that there will be no fights to break up, no emergency potty breaks in the middle of nowhere or five miles past the last exit. A quiet night is a mixed blessing - missing them, unfamiliarity, loneliness - and yet, peace. There is a comforting familiarity, even miles from home, even in a strange hotel room, brushing teeth, getting jammies laid out, and tucking little girls into bed. It is the monotony that is tradition, that is life. Not having them with us will be something like not having a limb. They are so much a part of us.

In the past months we've come to realize, though, that sometimes having one less limb means having three full limbs to devote to Jackson - who needs that and more during these procedures. Sometimes I wish I didn't have to be the mom in this. I wish I could collapse and have someone else take this on - the fear, the stress, the pain, the uncertainty, the - everything. But, as John said today, "It just goes to show, the only people we can count on in life is us."

Want to vote again?

2007-10-12T13:31:00.000-07:00

http://evenfloadmin.donet.com/Homepage/2007BabyYoureaStar/tabid/260/photoType/ViewPhoto/PhotoID/18173/ContestID/10/Default.aspx

That's for their September baby contest. Apparently voting began on October 1st, but I'm hoping he still stands a chance ;)

Emotions run high

2007-10-12T11:24:00.000-07:00

I know, "What else is new?"

I was reading a message from someone on the CAST support group. Her daughter is appliance-free now. She started with a 50° curve in her spine and in that first cast they got her down to 21°. You can see her story and the progression here
http://www.infantilescoliosis.org/madisons_story.htm

A flood of emotions came over me. As I choked back tears, I couldn't figure out why - was I crying happy tears because Jack may be cured one day? Is it because Jack didn't see good results in his first cast? Is it because I hate going through this, and seeing someone else going through it breaks my heart? Because none of these sweet babies deserve to know so much pain and hurt? That little girl at Shriner's entered my mind - the one with the long, fresh, red scar running the length of her spine toddling in front of me as Jack cruised the hallways. Was this our inevitable future? What does our future hold?

Do you have any idea what it is like to be a massive control freak and have it all taken from you in one fell swoop? To not be able to take this from your child and put it upon yourself? To see them uncomfortable, even in pain, hungry, frustrated, and not be able to help?

And, then, I realize so many parents go through so much more than we do. A mom has been a very good friend to me this year whose son has/had Leukemia. I cannot FATHOM what she (and he) has gone through. My problems seem so minute in comparison. Or, I should say Jack's problems. But, you know what? Not one time has she ever uttered those words, or implied as such - she's never said, "yeah - well - at least your kid doesn't have cancer." She has been amazing, generous of spirit, comforting, loving. I am so grateful for her.

It's all perspective. Someone will always be worse off, and someone will always be better off. But, when it's my baby - the boy I dreamt of for over a decade - I cannot bear the pain. It gnaws at the pit of your stomach and makes your heart skip beats. It makes you throat hoarse from constantly choking back the tears and swallowing hard to not allow yourself to cry, to not let the kids see you cry.

I'm such a follower

2007-10-11T09:07:00.001-07:00

Take the 100 Acre Personality Quiz!

Hello? God?

2007-10-10T09:23:00.001-07:00

Can you hear me?