55°

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?

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

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

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

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!

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...

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

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

Lazy cut and paste

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

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

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

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!

Yes We Can

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...

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

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

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

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

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

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

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

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

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

Here we go again

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

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

And hello in Cadiz!!!!

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

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

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

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...

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

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...

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

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

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

Five

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

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

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."