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°.
Friday, May 30, 2008
Tuesday, May 27, 2008
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.
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.
Saturday, May 10, 2008
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."
Wednesday, May 07, 2008
Meeting Dr. D tomorrow
I've been pushing this out of my head time and time again, but it's really hit me this afternoon. We meet the new doctor (local) tomorrow at 9 AM to discuss bracing and, basically, Jack's future. This is a decision that will impact him for the rest of his life and I'm so nervous about making the wrong choice.
The head of the Infantile Scoliosis Outreach Program thinks Jack could still benefit from casting. The doctor doesn't. Hard to hear that and not know what to do and where to go, yk?
I have this nagging in the back of my mind that this has worked up until now and could continue to work. But, who am I to say?
As much as I want to chop this stupid cast off him and never look back, once we stop casting, that's it - no real chance of improvement and he'll have to live with this for as long as he's growing - until surgery/surgeries are an option. So, that weighs heavily on my mind. I want this to bring him down to a 0. I want a cure, damnit. We've done everything right - everything they said. We've driven miles and miles, dealt with no sleep, had countless NPO nights, and I'm just sick that it's the end of the road. Nine and a half months of this crap. I want to be finished - but I want him to be healed and whole and well.
Anyway - that's my state this afternoon. I'll update tomorrow as soon as I know what the new doctor thinks. He's doing an official training symposium here (like the one we attended when Jack was first casted) - and I should be thrilled that Jack's curve is not in vain - that we've done something good for our community by advocating for this and bringing it to St. Louis. But, really, I want to be selfish for Jack today and just say it's not fair.
The head of the Infantile Scoliosis Outreach Program thinks Jack could still benefit from casting. The doctor doesn't. Hard to hear that and not know what to do and where to go, yk?
I have this nagging in the back of my mind that this has worked up until now and could continue to work. But, who am I to say?
As much as I want to chop this stupid cast off him and never look back, once we stop casting, that's it - no real chance of improvement and he'll have to live with this for as long as he's growing - until surgery/surgeries are an option. So, that weighs heavily on my mind. I want this to bring him down to a 0. I want a cure, damnit. We've done everything right - everything they said. We've driven miles and miles, dealt with no sleep, had countless NPO nights, and I'm just sick that it's the end of the road. Nine and a half months of this crap. I want to be finished - but I want him to be healed and whole and well.
Anyway - that's my state this afternoon. I'll update tomorrow as soon as I know what the new doctor thinks. He's doing an official training symposium here (like the one we attended when Jack was first casted) - and I should be thrilled that Jack's curve is not in vain - that we've done something good for our community by advocating for this and bringing it to St. Louis. But, really, I want to be selfish for Jack today and just say it's not fair.
Thursday, April 03, 2008
Cast #5
Note: If you are on the board, please forgive me for restating what I posted in Sisters. I'm still just utterly exhausted and don't have the mental energy to re-hash all of this. I'm just going to cut and paste the post from there below.
Since we managed to talk them out of a clinic appointment first, we left around 8:30 on Tuesday. We took our time getting to Birmingham, and before we left, I GoogleMapped directions to the Irondale Cafe (the "Whistle Stop Cafe" that is the root of the movie Fried Green Tomatoes). We went there directly, and had a great dinner. Jack FLIPPED over the trains and kept signing "train" and saying "choo choo." It was the highlight of our trip, for sure.
We checked into the hotel and ran to SuperTarget for some provisions. I always try to get him to eat as much as humanly possible before he is NPO at midnight. He refused the apples, refused the banana, ate a handful of cereal - just nothing of substance. He nursed twice and went to sleep. I waited up until midnight (one trip in Chicago, I MISSED his last nursing and it was awful - engorged, leaking, you name it). We were pretty amped up and couldn't fall asleep in the hotel.
He woke up at 1:30 and screamed. And screamed. And screamed. He thrashed around, hitting his head against the headboard, and screamed louder. He signed "milk" and "please" and said, "pees?" over and over again. I wanted to cry. I quietly reminded him that we had a cast tomorrow and no milky, but he wasn't having it. He finally passed out again 45 minutes later, only to wake up and do the same thing at 3. I don't think we slept again. John finally got up with him at 4:30 - glad to know that once we were up, the night was over. I got up at 5 and got dressed and we headed out the door - running on nothing but adrenaline.
We got to the hospital and the check-in waiting room was already full. We were ten minutes late, but I could have cared less at that point. Jack did well once we got there, except for the times when someone would come into the room. The DVD player in the room was broken, so he couldn't watch his movies. I swear it was 90° in the hospital, too. We were sooo tired. Went through the anesthesia screening, then the history, yadda yadda. By 7 they gave him the versed and it seemed to work this time. In Chicago he almost falls asleep, but in Birmingham, we have to carry him down to the OR and pass him off. So, he's hysterical every time, no matter what. Dad took him this time.
One person has to remain in the room at all times, so when John got back he went to the cafeteria to get us some food (we don't eat when Jack can't eat). I scarfed a bagel and we waited about a half hour until Dr. K came in.
He showed us the out of cast x-rays from cast 4. This is the starting point. The last cast had only corrected 2°. He went from 38° out of cast to 22° in cast - and once that was removed, he was back up to 36°. Defeat.
He said the spine is very rigid. When he presses on the apex of the curve, he can usually straighten it. However, in Jack's case, he cannot. He presses on that C and the WHOLE spine shifts over. Obviously, this could create a compensatory curve above and below it and royally screw up his back. So, he did what he could, but isn't very optimistic. I still don't have Cast #5's in-cast numbers.
After this cast, he will do x-rays and see where we are. If he hasn't gotten much correction (below that 36° number) we will move into a brace - that means it is all he can correct by casting and his spine is too rigid and his growth has slowed too much to achieve any more correction.
We've know this was a possibility. But, hearing that it's here already is a bit of a shock. We thought we'd get down to the 20s at most. However, we are looking at a 50% correction. That's huge. He is no longer a "surgical curve" - that's huge. But, 36° is huge, too.
Next appointment is at the end of May. We will go down for a clinic visit and get x-rays and the brace guy will be there, too, just in case. If we HAVE seen correction, we will do another cast at 6AM the next morning. If there isn't any correction (or not significant) we will move into a brace.
His surgeon uses Providence braces, which are more aggressive and push against the curve in the opposite direction. They cannot be worn during the day because you can't stand in them, we were told, but they work much better. And, he would have the chance to strengthen those trunk muscles during the day, which would be fantastic. However, he also has a chance of relapse. The rapid period of growth slows significantly between 2-5, and virtually stops from 5-10. He said you can breathe easier between 5-10. However, DH is 6'10" and grew steadily from like 3rd grade until college. We are going to have to watch Jack closely.
So, lots of mixed feelings right now - we would be thrilled to not see another cast. We would only have to go to Birmingham once a year for brace checks. That's good. But, no monitoring scares me. Not getting below 36° concerns me.
UPDATE:
While I was uploading pictures from our trip, I got an email from T in Dr. K's office. The in-cast number was only 30°. Clearly his spine has become significantly more rigid since the last cast went down to 22°. She gave us the name and number of a local orthotist who does Providence Braces here in Webster. We are still welcome to go down there for bracing, but she suggested that since we will have a lifetime of commitment with brace checks and growth adjustments, she suggested we may want to stay with someone local. We are going to take some time to process all of that and try to make a decision.
Some happy things to end this with - pictures.
Since we managed to talk them out of a clinic appointment first, we left around 8:30 on Tuesday. We took our time getting to Birmingham, and before we left, I GoogleMapped directions to the Irondale Cafe (the "Whistle Stop Cafe" that is the root of the movie Fried Green Tomatoes). We went there directly, and had a great dinner. Jack FLIPPED over the trains and kept signing "train" and saying "choo choo." It was the highlight of our trip, for sure.
We checked into the hotel and ran to SuperTarget for some provisions. I always try to get him to eat as much as humanly possible before he is NPO at midnight. He refused the apples, refused the banana, ate a handful of cereal - just nothing of substance. He nursed twice and went to sleep. I waited up until midnight (one trip in Chicago, I MISSED his last nursing and it was awful - engorged, leaking, you name it). We were pretty amped up and couldn't fall asleep in the hotel.
He woke up at 1:30 and screamed. And screamed. And screamed. He thrashed around, hitting his head against the headboard, and screamed louder. He signed "milk" and "please" and said, "pees?" over and over again. I wanted to cry. I quietly reminded him that we had a cast tomorrow and no milky, but he wasn't having it. He finally passed out again 45 minutes later, only to wake up and do the same thing at 3. I don't think we slept again. John finally got up with him at 4:30 - glad to know that once we were up, the night was over. I got up at 5 and got dressed and we headed out the door - running on nothing but adrenaline.
We got to the hospital and the check-in waiting room was already full. We were ten minutes late, but I could have cared less at that point. Jack did well once we got there, except for the times when someone would come into the room. The DVD player in the room was broken, so he couldn't watch his movies. I swear it was 90° in the hospital, too. We were sooo tired. Went through the anesthesia screening, then the history, yadda yadda. By 7 they gave him the versed and it seemed to work this time. In Chicago he almost falls asleep, but in Birmingham, we have to carry him down to the OR and pass him off. So, he's hysterical every time, no matter what. Dad took him this time.
One person has to remain in the room at all times, so when John got back he went to the cafeteria to get us some food (we don't eat when Jack can't eat). I scarfed a bagel and we waited about a half hour until Dr. K came in.
He showed us the out of cast x-rays from cast 4. This is the starting point. The last cast had only corrected 2°. He went from 38° out of cast to 22° in cast - and once that was removed, he was back up to 36°. Defeat.
He said the spine is very rigid. When he presses on the apex of the curve, he can usually straighten it. However, in Jack's case, he cannot. He presses on that C and the WHOLE spine shifts over. Obviously, this could create a compensatory curve above and below it and royally screw up his back. So, he did what he could, but isn't very optimistic. I still don't have Cast #5's in-cast numbers.
After this cast, he will do x-rays and see where we are. If he hasn't gotten much correction (below that 36° number) we will move into a brace - that means it is all he can correct by casting and his spine is too rigid and his growth has slowed too much to achieve any more correction.
We've know this was a possibility. But, hearing that it's here already is a bit of a shock. We thought we'd get down to the 20s at most. However, we are looking at a 50% correction. That's huge. He is no longer a "surgical curve" - that's huge. But, 36° is huge, too.
Next appointment is at the end of May. We will go down for a clinic visit and get x-rays and the brace guy will be there, too, just in case. If we HAVE seen correction, we will do another cast at 6AM the next morning. If there isn't any correction (or not significant) we will move into a brace.
His surgeon uses Providence braces, which are more aggressive and push against the curve in the opposite direction. They cannot be worn during the day because you can't stand in them, we were told, but they work much better. And, he would have the chance to strengthen those trunk muscles during the day, which would be fantastic. However, he also has a chance of relapse. The rapid period of growth slows significantly between 2-5, and virtually stops from 5-10. He said you can breathe easier between 5-10. However, DH is 6'10" and grew steadily from like 3rd grade until college. We are going to have to watch Jack closely.
So, lots of mixed feelings right now - we would be thrilled to not see another cast. We would only have to go to Birmingham once a year for brace checks. That's good. But, no monitoring scares me. Not getting below 36° concerns me.
UPDATE:
While I was uploading pictures from our trip, I got an email from T in Dr. K's office. The in-cast number was only 30°. Clearly his spine has become significantly more rigid since the last cast went down to 22°. She gave us the name and number of a local orthotist who does Providence Braces here in Webster. We are still welcome to go down there for bracing, but she suggested that since we will have a lifetime of commitment with brace checks and growth adjustments, she suggested we may want to stay with someone local. We are going to take some time to process all of that and try to make a decision.
Some happy things to end this with - pictures.
Wednesday, March 26, 2008
A Castastrophe
This morning was a leaky diaper blowout once again. If you recall, this happened early in Cast #4 during the plague of stomach virus and flu. At that time, I used my mad casting diaper skillz to pull the shirt down, cut out the offended tee, and re-tape.
Fast forward to this morning - not only has all the excess tee been used, I cannot get so much as a pinky up the back of his cast because it is so tight. Every time we try to use a wipe to clean it up, he screams. By mid-morning, it was obvious that this was not going to do - if the - um - waste product remained on his skin, he would have an open sore in no time. We called T at Dr. K's office and left a message, then emailed her photos of the tightness of the cast in addition.
Then, I made the executive decision that this cast was coming off NOW. If we had to deal with bounceback from him being out of the cast, we'd deal. We had no other options at this point. So, we called the hospital and they cut it off at 1:30 for us. WHEW - good thing, too! It was baaad under there - far worse than we could see.
And, now, without further ado, the unwrapped present that is my son's spine...
Fast forward to this morning - not only has all the excess tee been used, I cannot get so much as a pinky up the back of his cast because it is so tight. Every time we try to use a wipe to clean it up, he screams. By mid-morning, it was obvious that this was not going to do - if the - um - waste product remained on his skin, he would have an open sore in no time. We called T at Dr. K's office and left a message, then emailed her photos of the tightness of the cast in addition.
Then, I made the executive decision that this cast was coming off NOW. If we had to deal with bounceback from him being out of the cast, we'd deal. We had no other options at this point. So, we called the hospital and they cut it off at 1:30 for us. WHEW - good thing, too! It was baaad under there - far worse than we could see.
And, now, without further ado, the unwrapped present that is my son's spine...
Sunday, March 23, 2008
A Beautiful (albeit Bizarre!) Easter
We had an awesome time with a small family gathering today - lots of yummy food, too many of my Grandma's best-in-the-world deviled eggs, and the most heavenly dessert from my Aunt. And, would you believe - SNOW?!
It was great just sitting around, talking, and listening to stories. That's a past time that we don't make time for often enough in this day and age. It reminds me of backyard barbecues, with the boisterous laughter of generations gone by.
Today was a sign that the tide is turning. Nothing went wrong, nothing was in crisis, no major problems, just good food, and good friends. We are blessed to be surrounded by loved ones and are so grateful for their time with us. Not only did they come and spend their afternoon and evening with us, they spent time hiding eggs, collecting eggs, making desserts and side dishes, driving a long way to sit and chat, and entertaining our kids. They brought laughter and joy (and a carpet cleaner!!!!) to a home that has been rather tumultuous this past week, and for that, I am grateful. The memories, and house, are fresh and life is good.
Happy Easter.
It was great just sitting around, talking, and listening to stories. That's a past time that we don't make time for often enough in this day and age. It reminds me of backyard barbecues, with the boisterous laughter of generations gone by.
Today was a sign that the tide is turning. Nothing went wrong, nothing was in crisis, no major problems, just good food, and good friends. We are blessed to be surrounded by loved ones and are so grateful for their time with us. Not only did they come and spend their afternoon and evening with us, they spent time hiding eggs, collecting eggs, making desserts and side dishes, driving a long way to sit and chat, and entertaining our kids. They brought laughter and joy (and a carpet cleaner!!!!) to a home that has been rather tumultuous this past week, and for that, I am grateful. The memories, and house, are fresh and life is good.
Happy Easter.
Wednesday, March 19, 2008
Should've built an ark...
Torrential rain
Rain. Lots and lots of rain.
Sump pump malfunctions.
Sump pump back up malfunctions.
Sump pump alarm malfunctions.
8 hours to fix with remote pump.
Basement play room.
Basement family room.
Basement office.
Basement full bath.
Basement utility room.
Carpet, pad - soaked. Entire room. Water pooled behind baseboards.
Bad. Very, very bad.
Not covered by insurance - priceless.
Rain. Lots and lots of rain.
Sump pump malfunctions.
Sump pump back up malfunctions.
Sump pump alarm malfunctions.
8 hours to fix with remote pump.
Basement play room.
Basement family room.
Basement office.
Basement full bath.
Basement utility room.
Carpet, pad - soaked. Entire room. Water pooled behind baseboards.
Bad. Very, very bad.
Not covered by insurance - priceless.
Thursday, March 13, 2008
A Foodie's Baby
Who would have thought that a foodie would have a child who didn't eat. Do you know how difficult that is?
Jack's solid efforts have backslid yet again. Sometimes we don't see it immediately. I think the stomach virus last month is the original culprit, but we know that solids are just not something he enjoys eating. A bite of banana here, a piece of cereal there - but no real meals, no real food.
He's been nightwaking terribly lately, and while I know that the second molars are part of the problem, a friend suggested that perhaps he's just genuinely hungry. So, we set out last night to find some kind of beverage to boost his calories during the day. There are so many issues tied to his eating. For the last 9 months, he has been denied the opportunity to eat with some regularity. I think the impact of that, psychologically, has played a huge role in his feeding issues. In addition, the cast is against his belly at all times. Surely drinking the most readily digested thing on earth is far more comfortable than eating, and perhaps he's just learned that at an early age.
So, we are continuing to offer a variety of foods, and I will continue to make him plates of food (just to throw them away a half hour later), and I will continue to stay neutral on the issue when inside I am pleading and begging.
Jack's solid efforts have backslid yet again. Sometimes we don't see it immediately. I think the stomach virus last month is the original culprit, but we know that solids are just not something he enjoys eating. A bite of banana here, a piece of cereal there - but no real meals, no real food.
He's been nightwaking terribly lately, and while I know that the second molars are part of the problem, a friend suggested that perhaps he's just genuinely hungry. So, we set out last night to find some kind of beverage to boost his calories during the day. There are so many issues tied to his eating. For the last 9 months, he has been denied the opportunity to eat with some regularity. I think the impact of that, psychologically, has played a huge role in his feeding issues. In addition, the cast is against his belly at all times. Surely drinking the most readily digested thing on earth is far more comfortable than eating, and perhaps he's just learned that at an early age.
So, we are continuing to offer a variety of foods, and I will continue to make him plates of food (just to throw them away a half hour later), and I will continue to stay neutral on the issue when inside I am pleading and begging.
Thursday, March 06, 2008
Groundbreaking case in autism/vaccine link
http://www.cnn.com/2008/HEALTH/03/05/autism.vaccines.ap/index.html
Although some slight misinformation was given (the thimerosol link isn't the only one - there are still heavy metals in vaccines that react in the body the same way and even though it's not allowed as an ingredient anymore in pediatric vaccines - yet - there is no link???? How does that make sense? We're not allowing it, but it's perfectly safe? Huh. Reaaally. It IS still in stockpiled vaccines and is still regularly distributed to our children.) It is STILL a fantastic advance on the vaccine/autism front. As I've said time and time again, I believe there is something far more complex than just this one particular ingredient, but that it plays a huge role. We don't know if it's toxicity, assault on an immature immune system, ingredients, dosages, or what - but we DO know there is a link between autism rates and vaccines and we're glad to hear that the courts are beginning to agree.
Although some slight misinformation was given (the thimerosol link isn't the only one - there are still heavy metals in vaccines that react in the body the same way and even though it's not allowed as an ingredient anymore in pediatric vaccines - yet - there is no link???? How does that make sense? We're not allowing it, but it's perfectly safe? Huh. Reaaally. It IS still in stockpiled vaccines and is still regularly distributed to our children.) It is STILL a fantastic advance on the vaccine/autism front. As I've said time and time again, I believe there is something far more complex than just this one particular ingredient, but that it plays a huge role. We don't know if it's toxicity, assault on an immature immune system, ingredients, dosages, or what - but we DO know there is a link between autism rates and vaccines and we're glad to hear that the courts are beginning to agree.
Wednesday, March 05, 2008
Does anyone have a rental house at Gulf Shores?
Condo?
Time share?
Bueller??
Thought I'd ask here first :)
Time share?
Bueller??
Thought I'd ask here first :)
Jack Sign
Jack has started watching Signing Time movies and really picking up on the signs in them. Here are just a few that he's learned this week, and his new word!!!
Tuesday, March 04, 2008
Cast Redo
Once again, the tummy bug has landed in our house.
Jack threw up for two days and now has the second phase of this virus, apparently. Yesterday we woke up to a horrific leaking diaper, having already been soaked from sleeping at night, it went out the front, back, and legs. His cast tee was soaked - under the tape and everything!!! Panic ensued. John changed him and then we went to work trying to clean it. We thought we'd been successful until the afternoon when I kept noticing he smelled sour. Having the most sensitive nose in the group, I thought maybe it was just me. But, I finally went to change him and decided something was off and I needed to investigate.
I started un-taping the cast and could not believe how bad it was. Soaked through the tee shirt, into the cotton padding, and UNDER the tape from the inside! I had to remove the entire bottom part of the cast's taping, the cotton underneath, and CUT OFF the shirt! It was that bad. Luckily, after four casts being padded and taped, I kind of knew what I was doing. This new hy-tape that they use in Birmingham is awful. It's SUPER sticky, but rolls at the edges. The colored duct tape we were using, per Chicago's cast tech's recommendation, worked so much better. But, I didn't want Jack to be mis-matched, so I went to work with the salmon colored hy-tape. I used the whole roll to re-do just the bottom. The new shirts are grey and supposedly anti-microbial, but the fibers are so much more rough and abrasive. I'm going to ask if we can get the old kind. It doesn't really make a difference in "odor" that I've found. But, the weave is much further apart and it makes for a less-soft interior. I noticed a spot at the top didn't look right, took it off and it was a HUGE JUMBLED MESS! The tape had, apparently, gotten stuck to itself, so they just taped right over it. No wonder this cast looked so wonky to me. So, I taped over that and tried to get it smoothed out.
Then, I did the underarms again. Poor baby! They were SO red and raw under his arms, and that's such a sensitive place. I pulled the shirt out and it was totally discolored - I assume from the raw skin weeping underneath! :( Poor boy!!! I pulled that part out, cut it off, and saw that this hy-tape had left adhesive and must've been repositioned underneath there when it was too close to the skin - so there was white sticky stuff against his skin this whole time!!!! No wonder it was irritated. Much to his dismay, I stuck a piece of moleskin underneath by carefully shifting his body to one side and laying him on his side. It hurt for a bit, but I think now he'll be much more comfortable.
I'm just so frustrated with this cast taping and SO SICK of stomach bugs. I was ready to go get the whole thing cut off last night and just move to a brace with a local doctor. But, I know this is important and we'll keep it up. I just hate that he (and we) have to go through this some days. It's just not fair! He shouldn't have to deal with a tummy bug AND a cast. :( Yuck!
Jack threw up for two days and now has the second phase of this virus, apparently. Yesterday we woke up to a horrific leaking diaper, having already been soaked from sleeping at night, it went out the front, back, and legs. His cast tee was soaked - under the tape and everything!!! Panic ensued. John changed him and then we went to work trying to clean it. We thought we'd been successful until the afternoon when I kept noticing he smelled sour. Having the most sensitive nose in the group, I thought maybe it was just me. But, I finally went to change him and decided something was off and I needed to investigate.
I started un-taping the cast and could not believe how bad it was. Soaked through the tee shirt, into the cotton padding, and UNDER the tape from the inside! I had to remove the entire bottom part of the cast's taping, the cotton underneath, and CUT OFF the shirt! It was that bad. Luckily, after four casts being padded and taped, I kind of knew what I was doing. This new hy-tape that they use in Birmingham is awful. It's SUPER sticky, but rolls at the edges. The colored duct tape we were using, per Chicago's cast tech's recommendation, worked so much better. But, I didn't want Jack to be mis-matched, so I went to work with the salmon colored hy-tape. I used the whole roll to re-do just the bottom. The new shirts are grey and supposedly anti-microbial, but the fibers are so much more rough and abrasive. I'm going to ask if we can get the old kind. It doesn't really make a difference in "odor" that I've found. But, the weave is much further apart and it makes for a less-soft interior. I noticed a spot at the top didn't look right, took it off and it was a HUGE JUMBLED MESS! The tape had, apparently, gotten stuck to itself, so they just taped right over it. No wonder this cast looked so wonky to me. So, I taped over that and tried to get it smoothed out.
Then, I did the underarms again. Poor baby! They were SO red and raw under his arms, and that's such a sensitive place. I pulled the shirt out and it was totally discolored - I assume from the raw skin weeping underneath! :( Poor boy!!! I pulled that part out, cut it off, and saw that this hy-tape had left adhesive and must've been repositioned underneath there when it was too close to the skin - so there was white sticky stuff against his skin this whole time!!!! No wonder it was irritated. Much to his dismay, I stuck a piece of moleskin underneath by carefully shifting his body to one side and laying him on his side. It hurt for a bit, but I think now he'll be much more comfortable.
I'm just so frustrated with this cast taping and SO SICK of stomach bugs. I was ready to go get the whole thing cut off last night and just move to a brace with a local doctor. But, I know this is important and we'll keep it up. I just hate that he (and we) have to go through this some days. It's just not fair! He shouldn't have to deal with a tummy bug AND a cast. :( Yuck!
Wednesday, February 27, 2008
An important note about car seat safety...
If you know me, you know I'm passionate about a few things. Okay, more than a few. Maybe you've noticed that even my 8 year old is in a booster. Maybe you've wondered why Jae is in a harnessed carseat at 6. And maybe you've chalked Jack rear-facing up to the fact that we're just too exhausted with five kids to find the time to turn him around.
Maybe not.
Maybe you know this information already, and if so, bravo! It's definitely not common knowledge and most organizations are on a crusade just to get kids in carseats during the bare minimum amount of time. I can't say I blame them. Very few things make my blood boil like seeing an unrestrained child in a car. I think it should be punishable, by law, as parental negligence or endangering the life of a child.
Several years ago my Mother-in-Law lost slid at a slick highway exit ramp while approaching a red light. My daughter was a toddler and rear-facing at the time, but I still cradled around her body in an attempt to absorb the impact. I was so concerned with her safety, and so relieved when she didn't even seem to wake up after the accident, that it took a moment to process what I was seeing ahead of us. I watched as no less than seven people - four of whom were infants or toddlers - piled out of the back seat of the vehicle we had just hit. Not only were none of them in seat belts, not one was in a car seat! They ran off through the trees to get away before the police arrived on the scene, to avoid being ticketed. They were so lucky that night!! I hope that was enough to scare them into using child safety restraints, but something tells me it didn't change a thing.
In our state, the law is 8 and 80 - eight years, 80 pounds. In other states, it's less. To me, the fact that ANY state things 8 and 80 is the bare minimum is enough. It tells me that I had better look into the why.
Over the last few years, more data has come out on child seat safety. I KNOW this information is new to plenty of people. I do not hold it against you for not knowing. I'm here to give you the information, and let you make your own decision based on the statistics, the facts, the videos.
I know that car seats were hardly even used when I was a child. I have a picture of me, sitting next to some huge black vinyl contraption - and pictures of me in a pumpkin seat, ready to go out into the car. Today's roads are different. Cars go faster. Highways are more plentiful. Drivers are under the influence more. Sadly, it is often trial and fatal error that changes things like the aforementioned age and weight minimums. While some accidents are unpreventable, and no safety seat will prevent all injury, all the time, I thought I'd take this time to explain why we feel so strongly about having our little girls in harnessed, latched seats and having our little guy in a rear-facing seat still at 19 months.
When Jack's torso height exceeded the space that was considered safe in his Britax Boulevard seat (due to being casted over the shoulders) we were very limited in our options. Even the hospital couldn't find a seat that would work for us. However, an angel of a friend (thank you, sweet H) helped us purchase a new seat for Jackson that would safely allow him to be harnessed at the proper height, while remaining rear facing. Every time we drive, much less take an 8 hour road trip to his doctor appointments, I am so touched by her kindness and generosity during a difficult time. Someday, when all this is a memory, we will pay it forward tenfold.
Here is Jack in his Radian80 car seat with plenty of leg room, even though he is off the charts for height. (Hmm. Where'd he get that?) The outfit he is wearing is a 3T, for reference.
Watch the videos. Even if you don't have a child, you may one day - or you may have someone else's child in your car. The crash test footage speaks for itself.
It is also very common that people put small children in a seatbelt - or even a low-back belt positioning booster. Why is Jae in a five point harnessed seat? Because of Kyle. Literally, because of Kyle. I saw this video and we ordered a seat for her the same day. I promised to do all I could to help Kyle's Mom find some comfort, to know that her son's tragic death was not in vain. I had no idea. No clue whatsoever that seat belts fail this way. I had Jae in a high back Britax booster with side impact protection - the best! So did she. It wasn't the best. There are safer ways.
http://www.car-safety.org/rearface.html
Rear-facing is safest for both adults and children, but especially for babies, who would face a greater risk of spinal cord injury in a front-facing carseat during a frontal crash.
Rear-facing car seats spread frontal crash forces over the whole area of a baby's back, head and neck; they also prevent the head from snapping relative to the body in a frontal crash.
Rear-facing carseats may not be quite as effective in a rear end crash, but severe frontal and frontal offset crashes are far more frequent and far more severe than severe rear end crashes.
Rear-facing carseats are NOT a safety risk just because a baby's legs are bent at the knees or because they can touch/kick the vehicle seat.
Rear-facing as long as possible is the recommendation of the American Academy of Pediatricians, and can reduce injuries and deaths. Motor Vehicle Crashes are the #1 overall cause of death for children 14 and under.
MSNBC article
http://www.msnbc.msn.com/id/9916868
His study, presented at a recent meeting of the American Academy of Pediatrics, involved 870 children under age 2 who had been in either rear-facing or forward-facing car seats at the time of an automobile accident. He found that the children in forward-facing seats were more than four times as likely to be injured in side crashes as opposed to the children in rear-facing seats. The study also found a small but not statistically significant benefit for facing rear in frontal crashes.
http://www.cpsafety.com/articles/StayRearFacing.aspx
American Academy of Pediatrics states: If a car safety seat accommodates children rear facing to higher weights, for optimal protection, the child should remain rear facing until reaching the maximum weight for the car safety seat, as long as the top of the head is below the top of the seat back.3
http://www.carseatsite.com/rear-face_article.htm
WARNING: GRAPHIC....but necessary
Rather it is the rigidity of the BONES in the neck, in combination with the connecting ligaments, that determines whether the spine will hold together and the spinal cord will remain intact within the confines of the vertebral column. This works for adults, but very young children have immature and incompletely ossified bones that are soft and will deform and/or
separate under tension, leaving the spinal cord as the last link between the head and the torso. Have you ever pulled an electric cord from the socket by the cord instead of the plug and broken the wires? Same problem. This scenario is based on actual physiological measures. According to Huelke et al,1 "In autopsy specimens the elastic infantile vertebral bodies and ligaments allow for column elongation of up to two inches, but the spinal cord ruptures if stretched more than 1/4 inch." Real accident experience has also shown that a young child's skull can be literally ripped from its spine by the force of a crash. Yes, the body is being held in place, but the head is not. When a child is facing rearward, the head is cradled and moves in unison with the body, so that there is little or no relative motion that might pull on the connecting neck.
Keep your babies safe. We love them, too!
Maybe not.
Maybe you know this information already, and if so, bravo! It's definitely not common knowledge and most organizations are on a crusade just to get kids in carseats during the bare minimum amount of time. I can't say I blame them. Very few things make my blood boil like seeing an unrestrained child in a car. I think it should be punishable, by law, as parental negligence or endangering the life of a child.
Several years ago my Mother-in-Law lost slid at a slick highway exit ramp while approaching a red light. My daughter was a toddler and rear-facing at the time, but I still cradled around her body in an attempt to absorb the impact. I was so concerned with her safety, and so relieved when she didn't even seem to wake up after the accident, that it took a moment to process what I was seeing ahead of us. I watched as no less than seven people - four of whom were infants or toddlers - piled out of the back seat of the vehicle we had just hit. Not only were none of them in seat belts, not one was in a car seat! They ran off through the trees to get away before the police arrived on the scene, to avoid being ticketed. They were so lucky that night!! I hope that was enough to scare them into using child safety restraints, but something tells me it didn't change a thing.
In our state, the law is 8 and 80 - eight years, 80 pounds. In other states, it's less. To me, the fact that ANY state things 8 and 80 is the bare minimum is enough. It tells me that I had better look into the why.
Over the last few years, more data has come out on child seat safety. I KNOW this information is new to plenty of people. I do not hold it against you for not knowing. I'm here to give you the information, and let you make your own decision based on the statistics, the facts, the videos.
I know that car seats were hardly even used when I was a child. I have a picture of me, sitting next to some huge black vinyl contraption - and pictures of me in a pumpkin seat, ready to go out into the car. Today's roads are different. Cars go faster. Highways are more plentiful. Drivers are under the influence more. Sadly, it is often trial and fatal error that changes things like the aforementioned age and weight minimums. While some accidents are unpreventable, and no safety seat will prevent all injury, all the time, I thought I'd take this time to explain why we feel so strongly about having our little girls in harnessed, latched seats and having our little guy in a rear-facing seat still at 19 months.
When Jack's torso height exceeded the space that was considered safe in his Britax Boulevard seat (due to being casted over the shoulders) we were very limited in our options. Even the hospital couldn't find a seat that would work for us. However, an angel of a friend (thank you, sweet H) helped us purchase a new seat for Jackson that would safely allow him to be harnessed at the proper height, while remaining rear facing. Every time we drive, much less take an 8 hour road trip to his doctor appointments, I am so touched by her kindness and generosity during a difficult time. Someday, when all this is a memory, we will pay it forward tenfold.
Here is Jack in his Radian80 car seat with plenty of leg room, even though he is off the charts for height. (Hmm. Where'd he get that?) The outfit he is wearing is a 3T, for reference.
Watch the videos. Even if you don't have a child, you may one day - or you may have someone else's child in your car. The crash test footage speaks for itself.
It is also very common that people put small children in a seatbelt - or even a low-back belt positioning booster. Why is Jae in a five point harnessed seat? Because of Kyle. Literally, because of Kyle. I saw this video and we ordered a seat for her the same day. I promised to do all I could to help Kyle's Mom find some comfort, to know that her son's tragic death was not in vain. I had no idea. No clue whatsoever that seat belts fail this way. I had Jae in a high back Britax booster with side impact protection - the best! So did she. It wasn't the best. There are safer ways.
http://www.car-safety.org/rearface.html
Rear-facing is safest for both adults and children, but especially for babies, who would face a greater risk of spinal cord injury in a front-facing carseat during a frontal crash.
Rear-facing car seats spread frontal crash forces over the whole area of a baby's back, head and neck; they also prevent the head from snapping relative to the body in a frontal crash.
Rear-facing carseats may not be quite as effective in a rear end crash, but severe frontal and frontal offset crashes are far more frequent and far more severe than severe rear end crashes.
Rear-facing carseats are NOT a safety risk just because a baby's legs are bent at the knees or because they can touch/kick the vehicle seat.
Rear-facing as long as possible is the recommendation of the American Academy of Pediatricians, and can reduce injuries and deaths. Motor Vehicle Crashes are the #1 overall cause of death for children 14 and under.
MSNBC article
http://www.msnbc.msn.com/id/9916868
His study, presented at a recent meeting of the American Academy of Pediatrics, involved 870 children under age 2 who had been in either rear-facing or forward-facing car seats at the time of an automobile accident. He found that the children in forward-facing seats were more than four times as likely to be injured in side crashes as opposed to the children in rear-facing seats. The study also found a small but not statistically significant benefit for facing rear in frontal crashes.
http://www.cpsafety.com/articles/StayRearFacing.aspx
American Academy of Pediatrics states: If a car safety seat accommodates children rear facing to higher weights, for optimal protection, the child should remain rear facing until reaching the maximum weight for the car safety seat, as long as the top of the head is below the top of the seat back.3
http://www.carseatsite.com/rear-face_article.htm
WARNING: GRAPHIC....but necessary
Rather it is the rigidity of the BONES in the neck, in combination with the connecting ligaments, that determines whether the spine will hold together and the spinal cord will remain intact within the confines of the vertebral column. This works for adults, but very young children have immature and incompletely ossified bones that are soft and will deform and/or
separate under tension, leaving the spinal cord as the last link between the head and the torso. Have you ever pulled an electric cord from the socket by the cord instead of the plug and broken the wires? Same problem. This scenario is based on actual physiological measures. According to Huelke et al,1 "In autopsy specimens the elastic infantile vertebral bodies and ligaments allow for column elongation of up to two inches, but the spinal cord ruptures if stretched more than 1/4 inch." Real accident experience has also shown that a young child's skull can be literally ripped from its spine by the force of a crash. Yes, the body is being held in place, but the head is not. When a child is facing rearward, the head is cradled and moves in unison with the body, so that there is little or no relative motion that might pull on the connecting neck.
Keep your babies safe. We love them, too!
Wednesday, February 20, 2008
Busy Bee
It's been a busy month here at our hive - John will no doubt hate that analogy, what with his fear of bees and all.
Because we homeschool (or maybe that's just an excuse) I try to really go all out for the little holidays, too. Valentine's Day is, contrary to popular belief, NOT just a "Hallmark Holiday." It is the feast of St. Valentine! No, we don't reserve that day for the only expression of love year round, and no we don't feel the need to spend sixty two dollars on a dozen roses just because the florists say it's a rose day. It's one of those fun days when we can go a little beyond the call of duty and have some fun things to do. The kids woke up to a decked out table, which I learned the night before was, "The best part of Valentine's Day." (Whew! Good thing I had already planned the table!)
We also had a "do - over" for the girls' birthdays. Sky's was back in December, but an early December cast meant we weren't going to risk getting sick and then we DID get sick and missed Christmas as well. January was supposed to be the second attempt for Sky and an early birthday for Jameson, but then we all got the flu! So, we finally were able to bring out the party supplies this past weekend and had a very nice family gathering. It was great seeing those who could make it, and we hope we can catch up with the rest of you soon at Easter!
Let's see - what's new with Jack? Wild man insists on climbing up on EVERYTHING now. Last night he grabbed John by the finger and led him into the kitchen, pointed at the stove where I was plating up dinner, and then walked over into the dining room and pointed to his highchair! Not only is he EATING - he's enjoying it!! I wish I could say the same for clothing and coats. It was 18° outside today and this child is convinced that a jacket on his body will melt him, I think. Oh - speaking of clothes - he got his first pair of big boy shoes!!! We are firm believers in soft soled shoes for kids with developing legs and feet, but his Pedoodles boots just aren't quite up to wet ground in the backyard. Since that seems to be his favorite place, we decided it was time to get a pair of soft rubber soled shoes. The first pair were stride rites - a size 6.5!!!! But, he refused to walk in them at Laurie's, startled by the sound of the helium machine (which sounded exactly like the cast saw). So, we took them home and sure enough, he did a zombie walk and fell over, crying. The next day we took them back and got some lovely eccos and now he's super stylin' in his big boy shoes that he will even sleep in, if I let him. Yay! They're nice and flexible and still good on the concrete. This one is going to keep us on our toes this spring when the weather finally warms up!
Without further ado - the month in pictures (sorry for the yellow cast - low lighting inside and I'm not feeling up to photo editing for color right now - I suspect I have gallstones, so bear with me for a bit).
Because we homeschool (or maybe that's just an excuse) I try to really go all out for the little holidays, too. Valentine's Day is, contrary to popular belief, NOT just a "Hallmark Holiday." It is the feast of St. Valentine! No, we don't reserve that day for the only expression of love year round, and no we don't feel the need to spend sixty two dollars on a dozen roses just because the florists say it's a rose day. It's one of those fun days when we can go a little beyond the call of duty and have some fun things to do. The kids woke up to a decked out table, which I learned the night before was, "The best part of Valentine's Day." (Whew! Good thing I had already planned the table!)
We also had a "do - over" for the girls' birthdays. Sky's was back in December, but an early December cast meant we weren't going to risk getting sick and then we DID get sick and missed Christmas as well. January was supposed to be the second attempt for Sky and an early birthday for Jameson, but then we all got the flu! So, we finally were able to bring out the party supplies this past weekend and had a very nice family gathering. It was great seeing those who could make it, and we hope we can catch up with the rest of you soon at Easter!
Let's see - what's new with Jack? Wild man insists on climbing up on EVERYTHING now. Last night he grabbed John by the finger and led him into the kitchen, pointed at the stove where I was plating up dinner, and then walked over into the dining room and pointed to his highchair! Not only is he EATING - he's enjoying it!! I wish I could say the same for clothing and coats. It was 18° outside today and this child is convinced that a jacket on his body will melt him, I think. Oh - speaking of clothes - he got his first pair of big boy shoes!!! We are firm believers in soft soled shoes for kids with developing legs and feet, but his Pedoodles boots just aren't quite up to wet ground in the backyard. Since that seems to be his favorite place, we decided it was time to get a pair of soft rubber soled shoes. The first pair were stride rites - a size 6.5!!!! But, he refused to walk in them at Laurie's, startled by the sound of the helium machine (which sounded exactly like the cast saw). So, we took them home and sure enough, he did a zombie walk and fell over, crying. The next day we took them back and got some lovely eccos and now he's super stylin' in his big boy shoes that he will even sleep in, if I let him. Yay! They're nice and flexible and still good on the concrete. This one is going to keep us on our toes this spring when the weather finally warms up!
Without further ado - the month in pictures (sorry for the yellow cast - low lighting inside and I'm not feeling up to photo editing for color right now - I suspect I have gallstones, so bear with me for a bit).
Wednesday, February 13, 2008
"I SEE YOU!"
Any time I pull out my camera, I either get the super silly cheesy grin or a shy boy who won't look at me. So, very often I will say, "I SEE YOU!" From his profile, I immediately see his dimples deepen and he'll eventually turn his face to look at me. But, it's his little game - his way of asserting control.
He was just sitting up on the cube, clicking on the keyboard, and one of his sisters put their hat on him. He loves his sisters' hats, but will he wear any of the dozen darling BOY hats I have for him? No. Never. Rips them off immediately.
We were all giggling at him, in his plum newsboy cap with the embroidered flowers and I grabbed the camera. He turned and looked at the computer, pretending to be oblivious to me and the camera. Until I said, "I see you!" He smiled, still keeping his face forward, and said, "I SEE YOU!"
His very first sentence!!!
Literally, not a week ago I was considering a call to our primary care doc for a speech eval. He had missed so many of his speech milestones I was beginning to get concerned. Then, in the last week, it was, "Maaaaama," then "Dadda," then, "No," and "apple," and "Uh oh," and "choo choo," and something similar to "all gone."
And today - the little man busts out a three word sentence on me!
Here is his very pleased with himself response...
He was just sitting up on the cube, clicking on the keyboard, and one of his sisters put their hat on him. He loves his sisters' hats, but will he wear any of the dozen darling BOY hats I have for him? No. Never. Rips them off immediately.
We were all giggling at him, in his plum newsboy cap with the embroidered flowers and I grabbed the camera. He turned and looked at the computer, pretending to be oblivious to me and the camera. Until I said, "I see you!" He smiled, still keeping his face forward, and said, "I SEE YOU!"
His very first sentence!!!
Literally, not a week ago I was considering a call to our primary care doc for a speech eval. He had missed so many of his speech milestones I was beginning to get concerned. Then, in the last week, it was, "Maaaaama," then "Dadda," then, "No," and "apple," and "Uh oh," and "choo choo," and something similar to "all gone."
And today - the little man busts out a three word sentence on me!
Here is his very pleased with himself response...
Wednesday, February 06, 2008
Cast Four - A CURE
We had an awesome, awesome experience in Birmingham.
First, we met with Dr. Khoury, his resident, and Kara in the clinic. He looked at our x-ray, but we only had one from June because Chicago STILL has not sent them our films. But, by Tuesday that was moot because Dr. K had his own.
We talked a lot about the prognosis. To recap, Jack's first (Miss Mehta applied) cast did not hold the correction. He started at 70° (right thoracic). In the first, by the time it was removed (same hour) it was back up. Dr. Sturm told us that casting doesn't work for every child and that we may be just using the casting as a brace until he could have surgery at age three. Cast two got him down to 28 in the cast and his out of cast x-rays were down to 47°. The third cast got him down to 22° and Dr. Khoury had us cut it off at home. He said that it can be off for up to a week without causing any problems, and that it gives time for the skin to heal.
I asked Dr. Khoury what happens from here. He said that starting with a 47° curve (presumed) at 18 months is very late. He mentioned that Jack had a slender build and that he may not have a very flexible spine (I forgot to ask after the casting). I said, "When Jack was diagnosed, we were told that a curve over 50 was a surgical curve. What happens if we have a relentless curve down the road? Does it then transition to a surgical curve?" He said no. He explained that one instance of no improvement doesn't phase him. He will do it three times before he considers it unrelenting. After the third time, he believes that it will no longer improve and then we move into a night brace. He said, in a case like that the curve will often very slowly continue to get worse in a brace and then we can go back to periods of casting if necessary. Then, at age 8 (which he said is best for this) again - IF he had a curve that deteriorated in a brace - they would just do a spinal fusion. But, he said that is if we get up to like 80 even in a brace. I wanted to hear worst possible case scenario. HOWEVER - this is working! We are SO thrilled. We know that this is nothing short of a miracle. Our son, whose curve was SEVENTY DEGREES six months ago - four months ago, even! Who we thought would have growth rods at *three* - we were told now will not EVER need growth rods!!!!!
Okay, so back to our days...
Dr. Khoury does x-rays under sedation to get better numbers, which we LOVED. Jack is completely traumatized by radiology now and has to be forced to stand, all while he's thrashing around. He said the numbers are far more accurate that way, and we totally agree. They were able to take him back 40 minutes early and we requested Versed, but Jack didn't seem to react to it. We carried him to the doors and the nurse took him at which time he screamed hysterically, reaching his arms up for us. I don't know what went wrong, but he didn't appear sedated or loopy like he usually is.
The casting didn't take long at all. Dr. Khoury came down to our room within 45 minutes and showed us his films...
Prior to this cast, he was down to 38°!!!!!! That is a ten degree improvement from out of cast 2! Dr. Khoury got his curve down to 22° - but, what really sent me reeling was not just the number, but the appearance! His shoulders were level, his pelvis was balanced. Instead of having that sharp C in his spine, where the apex is, he now just has a balanced and gently rounded curve!!!!!!! It is AMAZING - I almost cried looking at it! I can *see* now how this is going to go and I'm just in awe of his work. Every other time it was still a sharp turn in the spine, but more internal to his body. This looked like an entirely different child!!!!
The cast itself is very different. It goes under the arms - very high. Dr. Khoury said every inch is essential and he will put up with skin breakdown as long as there are no open sores. He said the arms can be up high under the arm, even causing them to "walk like a wrestler" - but that it helps that way. His cut outs are so different - and there is a tremendous amount cut out on the opposite side - which just seems logical to me looking at his curve. Jack came out of anesthesia the most alert he ever has, and the anesthesia team there is SO great! Everyone there was so great. We had some delays in trimming - we were told they would petal his cast in the OR and they didn't finish, so we had to walk down to Will's clinic and have him do it there (which took over an hour) but I hope that it will improve next time.
Jack seems so happy today. He's throwing balls around and playing with his sisters. He doesn't have any residual grumpiness and has total mobility in the cast.
The drive home sucked, though - we drove through tornadoes, I'm sure, and there were several times we had to stop on the side of the highway until the rain eased up. There were overturned tractor trailers in a few spots on the highway in Illinois and something that happened to a train near the highway, too. It was crazy! But, we made it home safe and sound after a veeerrry long drive.
Thank you all for your support and hugs!
First, we met with Dr. Khoury, his resident, and Kara in the clinic. He looked at our x-ray, but we only had one from June because Chicago STILL has not sent them our films. But, by Tuesday that was moot because Dr. K had his own.
We talked a lot about the prognosis. To recap, Jack's first (Miss Mehta applied) cast did not hold the correction. He started at 70° (right thoracic). In the first, by the time it was removed (same hour) it was back up. Dr. Sturm told us that casting doesn't work for every child and that we may be just using the casting as a brace until he could have surgery at age three. Cast two got him down to 28 in the cast and his out of cast x-rays were down to 47°. The third cast got him down to 22° and Dr. Khoury had us cut it off at home. He said that it can be off for up to a week without causing any problems, and that it gives time for the skin to heal.
I asked Dr. Khoury what happens from here. He said that starting with a 47° curve (presumed) at 18 months is very late. He mentioned that Jack had a slender build and that he may not have a very flexible spine (I forgot to ask after the casting). I said, "When Jack was diagnosed, we were told that a curve over 50 was a surgical curve. What happens if we have a relentless curve down the road? Does it then transition to a surgical curve?" He said no. He explained that one instance of no improvement doesn't phase him. He will do it three times before he considers it unrelenting. After the third time, he believes that it will no longer improve and then we move into a night brace. He said, in a case like that the curve will often very slowly continue to get worse in a brace and then we can go back to periods of casting if necessary. Then, at age 8 (which he said is best for this) again - IF he had a curve that deteriorated in a brace - they would just do a spinal fusion. But, he said that is if we get up to like 80 even in a brace. I wanted to hear worst possible case scenario. HOWEVER - this is working! We are SO thrilled. We know that this is nothing short of a miracle. Our son, whose curve was SEVENTY DEGREES six months ago - four months ago, even! Who we thought would have growth rods at *three* - we were told now will not EVER need growth rods!!!!!
Okay, so back to our days...
Dr. Khoury does x-rays under sedation to get better numbers, which we LOVED. Jack is completely traumatized by radiology now and has to be forced to stand, all while he's thrashing around. He said the numbers are far more accurate that way, and we totally agree. They were able to take him back 40 minutes early and we requested Versed, but Jack didn't seem to react to it. We carried him to the doors and the nurse took him at which time he screamed hysterically, reaching his arms up for us. I don't know what went wrong, but he didn't appear sedated or loopy like he usually is.
The casting didn't take long at all. Dr. Khoury came down to our room within 45 minutes and showed us his films...
Prior to this cast, he was down to 38°!!!!!! That is a ten degree improvement from out of cast 2! Dr. Khoury got his curve down to 22° - but, what really sent me reeling was not just the number, but the appearance! His shoulders were level, his pelvis was balanced. Instead of having that sharp C in his spine, where the apex is, he now just has a balanced and gently rounded curve!!!!!!! It is AMAZING - I almost cried looking at it! I can *see* now how this is going to go and I'm just in awe of his work. Every other time it was still a sharp turn in the spine, but more internal to his body. This looked like an entirely different child!!!!
The cast itself is very different. It goes under the arms - very high. Dr. Khoury said every inch is essential and he will put up with skin breakdown as long as there are no open sores. He said the arms can be up high under the arm, even causing them to "walk like a wrestler" - but that it helps that way. His cut outs are so different - and there is a tremendous amount cut out on the opposite side - which just seems logical to me looking at his curve. Jack came out of anesthesia the most alert he ever has, and the anesthesia team there is SO great! Everyone there was so great. We had some delays in trimming - we were told they would petal his cast in the OR and they didn't finish, so we had to walk down to Will's clinic and have him do it there (which took over an hour) but I hope that it will improve next time.
Jack seems so happy today. He's throwing balls around and playing with his sisters. He doesn't have any residual grumpiness and has total mobility in the cast.
The drive home sucked, though - we drove through tornadoes, I'm sure, and there were several times we had to stop on the side of the highway until the rain eased up. There were overturned tractor trailers in a few spots on the highway in Illinois and something that happened to a train near the highway, too. It was crazy! But, we made it home safe and sound after a veeerrry long drive.
Thank you all for your support and hugs!
Monday, February 04, 2008
Quick update from Birmingham
I apologize in advance if you're on the board...I just copied my post there ;)
We just met with the doctor and he doesn't do out of cast x-rays until the babies are sedated. While that's great news - because radiology totally freaks out Jack and he doesn't stand still for the x-rays - it also means we don't have any numbers for you yet. But, when they put him under tomorrow we'll find out the out of cast x-rays and get a totally accurate number because he'll be sedated.
In Dr. K's experience, being out of a cast up to a week doesn't cause any real detriment, so that's good. He's been out since Friday and his skin looks SO much better already.
His process is this...
He will continue to cast until he gets three casts in a row that do not show improvement or we get down to 0. He said one is not discouraging, but three tells him the curve will no longer get any lower. I asked what happens when we have an "unrelenting curve" - do we then move on to surgery or bracing and he said, "Oh, I really don't see a need for growth rods. If we get him down to 30* and it stays at 30* after three casts, we would just put him in a brace. And, likely, over the years that curve would very gradually increase in the brace and then we could go back to a short period of casting even through later in childhood."
However, he would still have to have that "final fusion" - where they fuse his vertebrae together. (If we can't get down to zero - worst possible case scenario) He said the earliest they could possibly do that without majorly obvious influence to his growth is seven years. He said, ideally, it would be around age 8. At that time, his torso would stop growing entirely and he would only grow from the legs. But, that's still a GAZILLION times better than having growth rods.
Of course, then we'd have to continue coming down here regularly until Jack was eight - so another six years and possibly beyond.
His cast is being put on at noon tomorrow, so we have to be there at 9:30. They wanted us to spend the night but it's DD's birthday and no way I'm not going to be home for that. So, I think they're going to let us leave. They said if we have a local doc who will trim issues, we'll be okay. I'm very anxious to see what we're talking about here. It's hard for Dr. K to know how flexible his spine is and what kind of correction he can obtain. But, I know that Dr. S in Chicago got him down to 22, so that's GOOD, right? I mean, it has to be.
The worst part is that he can't nurse after 4AM and he isn't being casted until noon. That is going to SUCK. Suckity suckity suck.
But, we'll get through it. Dr. K was the type of guy you'd go sit down and have dinner with - just a totally down to earth, easy going, conversational guy. We're very happy.
The commute was long - we hit some awful fog for the first two hours, then torrential rain in Nashville, but we're here safe and sound and it's beautiful here today.
I'll try to update with some numbers tomorrow. I know some of you are as anxious as I am to get the details!
Thanks again
We just met with the doctor and he doesn't do out of cast x-rays until the babies are sedated. While that's great news - because radiology totally freaks out Jack and he doesn't stand still for the x-rays - it also means we don't have any numbers for you yet. But, when they put him under tomorrow we'll find out the out of cast x-rays and get a totally accurate number because he'll be sedated.
In Dr. K's experience, being out of a cast up to a week doesn't cause any real detriment, so that's good. He's been out since Friday and his skin looks SO much better already.
His process is this...
He will continue to cast until he gets three casts in a row that do not show improvement or we get down to 0. He said one is not discouraging, but three tells him the curve will no longer get any lower. I asked what happens when we have an "unrelenting curve" - do we then move on to surgery or bracing and he said, "Oh, I really don't see a need for growth rods. If we get him down to 30* and it stays at 30* after three casts, we would just put him in a brace. And, likely, over the years that curve would very gradually increase in the brace and then we could go back to a short period of casting even through later in childhood."
However, he would still have to have that "final fusion" - where they fuse his vertebrae together. (If we can't get down to zero - worst possible case scenario) He said the earliest they could possibly do that without majorly obvious influence to his growth is seven years. He said, ideally, it would be around age 8. At that time, his torso would stop growing entirely and he would only grow from the legs. But, that's still a GAZILLION times better than having growth rods.
Of course, then we'd have to continue coming down here regularly until Jack was eight - so another six years and possibly beyond.
His cast is being put on at noon tomorrow, so we have to be there at 9:30. They wanted us to spend the night but it's DD's birthday and no way I'm not going to be home for that. So, I think they're going to let us leave. They said if we have a local doc who will trim issues, we'll be okay. I'm very anxious to see what we're talking about here. It's hard for Dr. K to know how flexible his spine is and what kind of correction he can obtain. But, I know that Dr. S in Chicago got him down to 22, so that's GOOD, right? I mean, it has to be.
The worst part is that he can't nurse after 4AM and he isn't being casted until noon. That is going to SUCK. Suckity suckity suck.
But, we'll get through it. Dr. K was the type of guy you'd go sit down and have dinner with - just a totally down to earth, easy going, conversational guy. We're very happy.
The commute was long - we hit some awful fog for the first two hours, then torrential rain in Nashville, but we're here safe and sound and it's beautiful here today.
I'll try to update with some numbers tomorrow. I know some of you are as anxious as I am to get the details!
Thanks again
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