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.
Monday, December 29, 2008
Tuesday, December 23, 2008
Too much Christmas shopping?
Mom: Do you have any kisses for me in there?
Jackson: No. I have anymore.
Mom: You don't have ANY left?
Jackson: No. Go Target and buy some.
Mom: You went to Target to buy more kisses for me? (Nods, quite pleased with himself) How many did you buy me?
Jackson: Two!
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!
Sunday, December 21, 2008
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!!!!
.jpg)
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.
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!!!!
.jpg)
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.
Monday, December 15, 2008
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. :)
Wednesday, December 10, 2008
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.
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.
Wednesday, December 03, 2008
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:
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:
Tuesday, December 02, 2008
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!
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!
Monday, December 01, 2008
Cast 9 - Cancelled
Good luck with the brace and I'll go ahead and cancel
> Jackson's casting appointment on the 11th.
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