Monday, July 21, 2008
Saturday, July 19, 2008
And hello in Cadiz!!!!
Just a little side note to whomever reads from Cadiz.
A few months ago I installed a sitemeter that lets me know the general region of who is reading and when. It doesn't give me much beyond location, time of visit, and length of visit - but it's always interesting.
I also want to give a shout out to whomever is accessing the blog at Harvard. Maybe it is a friend of a friend. Maybe it's a medical professional who stumbled onto the blog - but it's still intriguing to me to see that on there. :)
There's someone whose server is linked through Cadiz, Kentucky and the first time it popped up we were pleasantly surprised. Every time we drive to Birmingham, we stop in Cadiz. We stumbled upon this little gas station and gift shop our first time down South for casting, and it has become an important part of our commute. We stop, fill up the tank, and I get to go walk around in the gift shop - eyeing the Vera Bradleys and occasionally buying a lil' kinz for the girls (the have the best prices!).
So, hello in Cadiz! :)
A few months ago I installed a sitemeter that lets me know the general region of who is reading and when. It doesn't give me much beyond location, time of visit, and length of visit - but it's always interesting.
I also want to give a shout out to whomever is accessing the blog at Harvard. Maybe it is a friend of a friend. Maybe it's a medical professional who stumbled onto the blog - but it's still intriguing to me to see that on there. :)
There's someone whose server is linked through Cadiz, Kentucky and the first time it popped up we were pleasantly surprised. Every time we drive to Birmingham, we stop in Cadiz. We stumbled upon this little gas station and gift shop our first time down South for casting, and it has become an important part of our commute. We stop, fill up the tank, and I get to go walk around in the gift shop - eyeing the Vera Bradleys and occasionally buying a lil' kinz for the girls (the have the best prices!).
So, hello in Cadiz! :)
Here we go, again
Remember all the antibiotics this summer? And the subsequent tummy upset that left us cleaning and re-taping, again and again.
This time, our luck ran out and we had no more tricks up our sleeve. Apparently, early in the morning, when a diaper is really good and wet, there is no place for, ahem, solid matter to go but up and out. Snug as a 7 week cast is, there was little room for navigation. We attempted to use rounded/soft/small handles to guide a wipe into the area, but it was clear that there was more - and we weren't getting it out.
After an hour of calls, pleading, more calls, more pleading, finally our saga fell on sympathetic ears at Shriner's St. L (thank you, Dr. R). We headed over immediately, and once again, we have a turtle without a shell.
The good news is, it looks good. Remember last time, as soon as it was off John knew it was worse? This doesn't have that feel at all. It looks better! Perfect? Not by a long shot. In fact, I am beginning to think his torso will always be deformed. His rotation is still significant. If there was some way to de-rotate the spine and get it to stay in position, we'd be set. But, not unlike a Slinky's coil, his spine just seems to pop right back despite best efforts of all involved.
John is particularly concerned about his ribs. He doesn't like being touched and he's still wobbly when walking, so I don't want to mess with him too much - poking and prodding. I'll investigate more this evening when he soaks off all this dead skin in the tub. Speaking of, his skin is horrendous this time. There is about a half-dollar sized spot where the trapped matter had already started deteriorating his skin. But, that aside, John said when they cracked off the cast a large spot high up on his hip (not visible from the outside and not the spot that was looking so bad in June). It was a large leathery piece of skin that was attached like a scab, all of which pulled off with the cast. Poor buddy. It's astonishing to me how much they go through that we don't even know about, and really saddening. He can't possibly articulate what that is and what it feels like, except perhaps the tears in the car from sitting too long or the tugging on the side or hips.
Hopefully T will return our call before Monday. If not, we'll follow-up with her in the office and hope and pray they can get him in for an appointment this week. Seeing this improvement reiterates to me that 7 weeks is good. 9 is bad. 6-7 = improvement. 9-10 = deteriorating in the end.
This time, our luck ran out and we had no more tricks up our sleeve. Apparently, early in the morning, when a diaper is really good and wet, there is no place for, ahem, solid matter to go but up and out. Snug as a 7 week cast is, there was little room for navigation. We attempted to use rounded/soft/small handles to guide a wipe into the area, but it was clear that there was more - and we weren't getting it out.
After an hour of calls, pleading, more calls, more pleading, finally our saga fell on sympathetic ears at Shriner's St. L (thank you, Dr. R). We headed over immediately, and once again, we have a turtle without a shell.
The good news is, it looks good. Remember last time, as soon as it was off John knew it was worse? This doesn't have that feel at all. It looks better! Perfect? Not by a long shot. In fact, I am beginning to think his torso will always be deformed. His rotation is still significant. If there was some way to de-rotate the spine and get it to stay in position, we'd be set. But, not unlike a Slinky's coil, his spine just seems to pop right back despite best efforts of all involved.
John is particularly concerned about his ribs. He doesn't like being touched and he's still wobbly when walking, so I don't want to mess with him too much - poking and prodding. I'll investigate more this evening when he soaks off all this dead skin in the tub. Speaking of, his skin is horrendous this time. There is about a half-dollar sized spot where the trapped matter had already started deteriorating his skin. But, that aside, John said when they cracked off the cast a large spot high up on his hip (not visible from the outside and not the spot that was looking so bad in June). It was a large leathery piece of skin that was attached like a scab, all of which pulled off with the cast. Poor buddy. It's astonishing to me how much they go through that we don't even know about, and really saddening. He can't possibly articulate what that is and what it feels like, except perhaps the tears in the car from sitting too long or the tugging on the side or hips.
Hopefully T will return our call before Monday. If not, we'll follow-up with her in the office and hope and pray they can get him in for an appointment this week. Seeing this improvement reiterates to me that 7 weeks is good. 9 is bad. 6-7 = improvement. 9-10 = deteriorating in the end.
Wednesday, July 16, 2008
Riding this one out
3 more weeks and we're getting to the point where the cast is snug as a bug and the tummy seems to just stick waaaay out. But, he's in good spirits, sleeping well, and about five times a day he says, "hungee. 'nack?"
His favorite food is a circle-cut peanut butter sandwich. If you are a mom, and you haven't discovered the Pampered Chef circle cutter, as it is affectionately known in my house, look it up. It's worth it. We have two! I'm sure if you have deal with peanut allergies you are cringing at this point. But, we are fortunate to be okay in that department. Dairy, however, is always at least somewhat of an issue. But, his beloved "butter" is good and we are happy campers.
Jack eats at least two peanut butter sandwiches a day - most often for breakfast and before bed. Who am I to fight? I'm just glad the kid is EATING. He is still eating popsicles daily. Luckily we found a brand that isn't so awful for him. I don't fight that one, either. Again, it's liquid - albeit in a frozen state, but hydration nonetheless. And, the nice thing is, he can have either a drink of juice, soda, or a popsicle post-anesthesia as a liquid, so it's pretty much a guarantee that he'll go for a popsicle there. Last time there wasn't much he would take. I think we ended up with an orange popsicle, melting in the trash, and a cup of sierra mist from the little hospitality room.
When my oldest was young, I wouldn't dream of feeding her some of these things. But, when you mix reflux with sensory issues, feeding problems, and all the lovely digestive issues that can go along with curvy boys (and girls) - you take what you can get. A wise mom mentioned she gives her son high calorie foods when the cast comes off to plump him up a bit, which serves a dual purpose, really. If they get a little weight on them the week before, maybe the cast won't be outgrown so quickly and be a little more loose. Brilliant, if I do say so myself. Thanks for that gem, wise owl!
We're considering renting a Prius for this next trip. It's $45 a day through our dealer (where we got our van) and includes unlimited mileage. When I calculated the mpg for our car and took into account the cost of fuel, even after paying for the rental fee we'd still come out $50 ahead (minus any applicable insurance and or fees the dealer took out for the rental). But, I hear they're quite - um - cozy! And, if you haven't met us, Jack's Daddy is 6'10". Cozy = clown car for him.
Not much else is new around our parts. We acquired an old (not quite antique) oak dresser this week that was posted on Freecycle. And, if you don't know what Freecycle is, I feel sorry for you! It's a yahoo group where you can post things you want and things you no longer want, the one caveat being that the item is free for the taking, no sales allowed. It's a great idea to keep unwanted goods out of the landfills, something we strive to do in our home with having such a large family (and corresponding carbon footprint). It's rare that I am on the receiving end of a Freecycle. Usually it's my fast and easy way of getting rid of stuff we no longer need, use, or want. But, this time I stumbled upon a post in time to actually get the item and it was a great piece. A little TLC and hopefully it will go in Jack's room by the time he's ready to sleep alone.
His favorite food is a circle-cut peanut butter sandwich. If you are a mom, and you haven't discovered the Pampered Chef circle cutter, as it is affectionately known in my house, look it up. It's worth it. We have two! I'm sure if you have deal with peanut allergies you are cringing at this point. But, we are fortunate to be okay in that department. Dairy, however, is always at least somewhat of an issue. But, his beloved "butter" is good and we are happy campers.
Jack eats at least two peanut butter sandwiches a day - most often for breakfast and before bed. Who am I to fight? I'm just glad the kid is EATING. He is still eating popsicles daily. Luckily we found a brand that isn't so awful for him. I don't fight that one, either. Again, it's liquid - albeit in a frozen state, but hydration nonetheless. And, the nice thing is, he can have either a drink of juice, soda, or a popsicle post-anesthesia as a liquid, so it's pretty much a guarantee that he'll go for a popsicle there. Last time there wasn't much he would take. I think we ended up with an orange popsicle, melting in the trash, and a cup of sierra mist from the little hospitality room.
When my oldest was young, I wouldn't dream of feeding her some of these things. But, when you mix reflux with sensory issues, feeding problems, and all the lovely digestive issues that can go along with curvy boys (and girls) - you take what you can get. A wise mom mentioned she gives her son high calorie foods when the cast comes off to plump him up a bit, which serves a dual purpose, really. If they get a little weight on them the week before, maybe the cast won't be outgrown so quickly and be a little more loose. Brilliant, if I do say so myself. Thanks for that gem, wise owl!
We're considering renting a Prius for this next trip. It's $45 a day through our dealer (where we got our van) and includes unlimited mileage. When I calculated the mpg for our car and took into account the cost of fuel, even after paying for the rental fee we'd still come out $50 ahead (minus any applicable insurance and or fees the dealer took out for the rental). But, I hear they're quite - um - cozy! And, if you haven't met us, Jack's Daddy is 6'10". Cozy = clown car for him.
Not much else is new around our parts. We acquired an old (not quite antique) oak dresser this week that was posted on Freecycle. And, if you don't know what Freecycle is, I feel sorry for you! It's a yahoo group where you can post things you want and things you no longer want, the one caveat being that the item is free for the taking, no sales allowed. It's a great idea to keep unwanted goods out of the landfills, something we strive to do in our home with having such a large family (and corresponding carbon footprint). It's rare that I am on the receiving end of a Freecycle. Usually it's my fast and easy way of getting rid of stuff we no longer need, use, or want. But, this time I stumbled upon a post in time to actually get the item and it was a great piece. A little TLC and hopefully it will go in Jack's room by the time he's ready to sleep alone.
Friday, July 11, 2008
Early Intervention
EI was here this morning to fill out paperwork. We have a physical therapist and - now I can't remember - someone who does a global assessment. That's happening in a couple weeks.
I'm so frustrated with this process. Apparently, our EI is on a sliding scale. So, in order for Jack to receive therapy through them, we would pay $180 a month. The won't be able to determine how many visits per month until after the formal evaluation. Our co-pay with insurance is $20 a visit and we have some annual limit that basically doesn't amount to anything.
And, while checking on the coverage for PT, I looked at our orthotics coverage again. The brace that our doctor uses, when we are finally finished with casting, is about $2800. Our max benefit per year is $2500, leaving us with $300 out of pocket for every brace he has made, plus our copay of 10%, which would be another $280. So, $580 for the first brace each year and another $2800 out of pocket if he should need another one.
While they were here, the EI specialist mentioned that our state insurance can help us with things, even if we have medical insurance. Great! Where do we sign up?
Oh - wait - it's on a sliding scale, too. And, you don't have enough in medical bills each month to qualify.
Here's the carrot - run, run, run - psych! Nevermind.
Which reminds me...
The NF Center at Children's will not schedule our appointment and it's getting ridiculous. They want a letter and office notes from his doctor. We had it faxed the same day. No one seems to be able to find anything, and cannot schedule until they have the letter. Um. It's a DIAGNOSTIC EVALUATION. Why do you need his office visit notes? Do you not take a history when we get there, regardless???
The insurance system in this country is a joke - both private and public. The medical community is freaking impossible to navigate. And, God forbid someone who works as a receptionist and schedules appointments for a living can ever do their job.
I'm so frustrated with this process. Apparently, our EI is on a sliding scale. So, in order for Jack to receive therapy through them, we would pay $180 a month. The won't be able to determine how many visits per month until after the formal evaluation. Our co-pay with insurance is $20 a visit and we have some annual limit that basically doesn't amount to anything.
And, while checking on the coverage for PT, I looked at our orthotics coverage again. The brace that our doctor uses, when we are finally finished with casting, is about $2800. Our max benefit per year is $2500, leaving us with $300 out of pocket for every brace he has made, plus our copay of 10%, which would be another $280. So, $580 for the first brace each year and another $2800 out of pocket if he should need another one.
While they were here, the EI specialist mentioned that our state insurance can help us with things, even if we have medical insurance. Great! Where do we sign up?
Oh - wait - it's on a sliding scale, too. And, you don't have enough in medical bills each month to qualify.
Here's the carrot - run, run, run - psych! Nevermind.
Which reminds me...
The NF Center at Children's will not schedule our appointment and it's getting ridiculous. They want a letter and office notes from his doctor. We had it faxed the same day. No one seems to be able to find anything, and cannot schedule until they have the letter. Um. It's a DIAGNOSTIC EVALUATION. Why do you need his office visit notes? Do you not take a history when we get there, regardless???
The insurance system in this country is a joke - both private and public. The medical community is freaking impossible to navigate. And, God forbid someone who works as a receptionist and schedules appointments for a living can ever do their job.
Thursday, July 10, 2008
Heeeere we go...
Tomorrow morning someone from the school district is coming to evaluate Jack for therapy/therapies. I've avoided this for a year now. I think scheduling the appointment somehow validates his condition as a longterm, chronic issue and I wasn't ready to admit to that. We had all our eggs in the casting basket, it was the only way to get through the financial and emotional stress of it, I imagine. But, now I'm ready. I think.
I'm nervous and anxious and a little nauseous thinking about it. There's a whole plethora of changes and upheaval around here these days and I need some grounding. I feel like I'm floating and nothing is certain, so I have to pull the reigns and get control back. Hopefully therapy will do that - being proactive is always good.
We're on the look out for a Thomas toddler bed, if anyone knows where we can find one at a good price. There's one in Lake St. Louis, but that's a heck of a drive. We are selling some things on Craiglist right now in preparation for the next casting and his birthday and drove to South City last night. Just that hour or so in the car has rubbed his hips raw again. So, LSL is definitely out. (It's the shaped train toddler bed, not the cheapy plastic one - it's a big thing with a built-in toybox). We're also on the lookout for a train table - would love Brio or an activity table from PBK. We've come to realize that these tables are perfect for kids in casts. Their mobility is challenged as far as balance and bending at the waist, so anything that brings toys up to his level is perfect. I was lamenting the fact that my Grandpa isn't here with us, recently at my Aunt's house. He would have built Jack *the best* train table. :(
Miss you, Grandpa. Every day.
I'm nervous and anxious and a little nauseous thinking about it. There's a whole plethora of changes and upheaval around here these days and I need some grounding. I feel like I'm floating and nothing is certain, so I have to pull the reigns and get control back. Hopefully therapy will do that - being proactive is always good.
We're on the look out for a Thomas toddler bed, if anyone knows where we can find one at a good price. There's one in Lake St. Louis, but that's a heck of a drive. We are selling some things on Craiglist right now in preparation for the next casting and his birthday and drove to South City last night. Just that hour or so in the car has rubbed his hips raw again. So, LSL is definitely out. (It's the shaped train toddler bed, not the cheapy plastic one - it's a big thing with a built-in toybox). We're also on the lookout for a train table - would love Brio or an activity table from PBK. We've come to realize that these tables are perfect for kids in casts. Their mobility is challenged as far as balance and bending at the waist, so anything that brings toys up to his level is perfect. I was lamenting the fact that my Grandpa isn't here with us, recently at my Aunt's house. He would have built Jack *the best* train table. :(
Miss you, Grandpa. Every day.
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