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