Halloween. Okay, I'm not really thinking Christmas just yet. Yesterday I went to Michael's in search of Halloween embellishments for our trick-or-treaters' treats and had to scour the aisles to find them on clearance! It's not even the holiday yet and they've moved it all away, clearancing out even Thanksgiving items, in lieu of the massive onslaught of Christmas.
So, with that fresh in my mind, when a friend shared this YouTube video with me, it really hit hard. It's profound, truly. Over the years, we've started moving away from the materialism of Christmas and more toward the time together and handmade gifts. The kids get a special gift from Santa, but long gone are the days of commercialism and crap piled all over our floor with bags and bags of wrapping (talk about waste!) and the tedious boxes upon boxes of packaging. We no longer put out seven or eight bags of trash (have you ever paid attention to how much goes out that first trash day after Christmas?) and enjoy spending time together, making gifts for those we love.
We still have a long way to go, don't get me wrong. But, we're working on it. One year at a time.
What can you do this Christmas?
Okay, I cannot for the life of me figure out how to upload videos to blogger anymore. Gah.
Try that.
Wednesday, October 29, 2008
Friday, October 24, 2008
Picture Pages
Just some pictures I wanted to share without the hassle of picasa.
Aaaand - blogger has other plans for the evening, mostly involving raised voices and selective keyboard banging on my part. I shall try again later.
Aaaand - blogger has other plans for the evening, mostly involving raised voices and selective keyboard banging on my part. I shall try again later.
Monday, October 13, 2008
Sorry for the long wait
I've gotten a couple emails and realized I hadn't updated on the blog here! Sorry!
The x-rays came back showing decreased bone density and she recommended we meet with "the endocrine guy" to follow-up with that. In the meantime, we are supplementing vitamin D and looking into other supplements that might help.
After some googling and the help of a dear friend, we managed to measure the Cobb angle of the last x-ray. I calculated 29° and John calculated 33°. We heard from Dr. K on Monday and he got 33° as well, so we were on for cast 8. We left on Wednesday morning and the girls stayed with my mother-in-law and her sister, who so kindly stayed at our home. Jae went to give Jack a hug goodbye and broke down sobbing. Not being the child with emotional tendencies, we invited her to come with us. It was a nice, easy trip with zero hiccups (okay, one hiccup - a yucky hotel room, but nothing other than that).
The casting day was fantastic. We woke up, drove to the hospital, got checked in, and finally were able to meet another casting family that we have been in contact with for a good part of this journey. It was so nice to have them there, especially since Jack tends to be a Daddy's boy on these trips. It certainly helped to have such a great friend across the hall. Dr. K joked that it was the Mehta Wing of the hospital and we talked a bit about measurements. I said that my calculation was lower than John's, but that his was validated by the doctor's. We spoke to him about the progress Jackson has made, and whether or not casting was going to continue to work, when he returned from the OR. He said he got Jack down to 24° (which he chalked up to being "the same" as last time - around 20). And, we discussed bracing extensively - and I'm on the hunt for a Providence Brace specialist now. Not much luck.
I'll try to add more later - the DSL went out, Blogger froze, and I lost the other 2/3rds of this post. So, I'm going to step away from the computer for a while and avoid throwing it across the room. Because, you know, that's not supposed to be good for it and all that.
The x-rays came back showing decreased bone density and she recommended we meet with "the endocrine guy" to follow-up with that. In the meantime, we are supplementing vitamin D and looking into other supplements that might help.
After some googling and the help of a dear friend, we managed to measure the Cobb angle of the last x-ray. I calculated 29° and John calculated 33°. We heard from Dr. K on Monday and he got 33° as well, so we were on for cast 8. We left on Wednesday morning and the girls stayed with my mother-in-law and her sister, who so kindly stayed at our home. Jae went to give Jack a hug goodbye and broke down sobbing. Not being the child with emotional tendencies, we invited her to come with us. It was a nice, easy trip with zero hiccups (okay, one hiccup - a yucky hotel room, but nothing other than that).
The casting day was fantastic. We woke up, drove to the hospital, got checked in, and finally were able to meet another casting family that we have been in contact with for a good part of this journey. It was so nice to have them there, especially since Jack tends to be a Daddy's boy on these trips. It certainly helped to have such a great friend across the hall. Dr. K joked that it was the Mehta Wing of the hospital and we talked a bit about measurements. I said that my calculation was lower than John's, but that his was validated by the doctor's. We spoke to him about the progress Jackson has made, and whether or not casting was going to continue to work, when he returned from the OR. He said he got Jack down to 24° (which he chalked up to being "the same" as last time - around 20). And, we discussed bracing extensively - and I'm on the hunt for a Providence Brace specialist now. Not much luck.
I'll try to add more later - the DSL went out, Blogger froze, and I lost the other 2/3rds of this post. So, I'm going to step away from the computer for a while and avoid throwing it across the room. Because, you know, that's not supposed to be good for it and all that.
Friday, October 03, 2008
Waiting
This afternoon we got a call from Jack's surgeon in Birmingham. He was looking at our chart and noticed that the numbers were not very good out of cast. As you may recall, this last (the 7th) cast was the best one we've ever had. Despite our frustrations, we were optimistic that this was finally the beginning of the end. We could see that his rotation had resolved, which is a huge aspect of his condition, and the angle had gotten lower than ever before. To hear that he was discouraged was totally unexpected and we were devastated that we might, yet again, be facing a battle to keep going.
We suggested an out of cast x-ray here, to be sent down to him. I then asked about whether or not we should keep our appointment and just plan on meeting with the brace guy, and whether or not he still recommended a providence (night time) brace. He said he had given up on long-distance bracing and is no longer doing that for his patients. He wants us to stay here. (Opening a whole Pandora's box of problems for us, but that's for another time.) However, he said, if the out of cast number was not below 35° we were done. No cast next week, no brace down there, that was all he could, rather would, do for Jack.
Crushing.
It was about that time that we headed out the door for his neurofibromatosis clinic appointment (great timing, huh?). We went to the ortho clinic first and had his cast removed and, of course, no one had called in the last two hours to actually order the x-rays. So, we called down there, spoke with the ortho clinic here, and tried to coordinate it the best we could - no luck.
Finally, in a last-ditch effort, I suggested calling our primary care doc. (There were no doctors in the clinic who could write an x-ray order and our surgeon didn't have rights at the hospital). Sure enough, Dr. H came to the rescue, faxed the order over immediately, and saved the day! They heard us in the ortho clinic and said not to bother going to radiology, that they could do the x-ray right there after his cast was removed. Done and done.
We then rushed up a floor to the NF clinic, went to the wrong desk per the information girl who had no idea what we were talking about, and finally found the check-in. We met with the nurse practitioner in neurology. She was incredibly nice, great bedside manner, but I had to suggest things like using the UV light to check for spots.
We discussed the fact that there is no medical history for DH's family, except that it was noted that the men seemed to have a problem with kyphosis. She examined his tibial bowing, felt for his bumps under his skin on the neck/skull area (she thinks she found one, but said sometimes they hide and then come back, that it's not uncommon).
We also discussed the possibility of rickets causing his leg issues and she offered to do a wrist and ankle x-ray to be sure, since that is fairly non-invasive and we were doing leg x-rays anyway. She ordered a vision test for him, to check for the lisch nodules and optic glioma, and said the standard protocol is to see him once a year unless something comes up. She said, we're pretty sure he has it - he has six spots, so he's right on the edge. I don't want to make any definitive calls without talking to the doctor about his spine because while it's well-documented in NF, it looks like there is some family history there that may explain it. (Not at ALL what I meant by bringing up the kyphosis in DH's family - I meant to imply that perhaps it was undiagnosed NF1. Apparently she got the wrong idea there.)
So, we are waiting for the x-rays to check on his tibia, and I imagine, to see what the neurologist says - but it looks like, for the time being, he has NF1.
I also have the x-ray pictures in a jpeg and just cannot tell what the numbers are. It's going to kill me to wait until Monday to get numbers. I have a hotel to book and plans to make for Wednesday - and if he isn't going down there, I need to call and get in to our local doctor and figure out where the heck we're going to get a decent brace in this city.
And, so, here I am - waiting, once again.
We suggested an out of cast x-ray here, to be sent down to him. I then asked about whether or not we should keep our appointment and just plan on meeting with the brace guy, and whether or not he still recommended a providence (night time) brace. He said he had given up on long-distance bracing and is no longer doing that for his patients. He wants us to stay here. (Opening a whole Pandora's box of problems for us, but that's for another time.) However, he said, if the out of cast number was not below 35° we were done. No cast next week, no brace down there, that was all he could, rather would, do for Jack.
Crushing.
It was about that time that we headed out the door for his neurofibromatosis clinic appointment (great timing, huh?). We went to the ortho clinic first and had his cast removed and, of course, no one had called in the last two hours to actually order the x-rays. So, we called down there, spoke with the ortho clinic here, and tried to coordinate it the best we could - no luck.
Finally, in a last-ditch effort, I suggested calling our primary care doc. (There were no doctors in the clinic who could write an x-ray order and our surgeon didn't have rights at the hospital). Sure enough, Dr. H came to the rescue, faxed the order over immediately, and saved the day! They heard us in the ortho clinic and said not to bother going to radiology, that they could do the x-ray right there after his cast was removed. Done and done.
We then rushed up a floor to the NF clinic, went to the wrong desk per the information girl who had no idea what we were talking about, and finally found the check-in. We met with the nurse practitioner in neurology. She was incredibly nice, great bedside manner, but I had to suggest things like using the UV light to check for spots.
We discussed the fact that there is no medical history for DH's family, except that it was noted that the men seemed to have a problem with kyphosis. She examined his tibial bowing, felt for his bumps under his skin on the neck/skull area (she thinks she found one, but said sometimes they hide and then come back, that it's not uncommon).
We also discussed the possibility of rickets causing his leg issues and she offered to do a wrist and ankle x-ray to be sure, since that is fairly non-invasive and we were doing leg x-rays anyway. She ordered a vision test for him, to check for the lisch nodules and optic glioma, and said the standard protocol is to see him once a year unless something comes up. She said, we're pretty sure he has it - he has six spots, so he's right on the edge. I don't want to make any definitive calls without talking to the doctor about his spine because while it's well-documented in NF, it looks like there is some family history there that may explain it. (Not at ALL what I meant by bringing up the kyphosis in DH's family - I meant to imply that perhaps it was undiagnosed NF1. Apparently she got the wrong idea there.)
So, we are waiting for the x-rays to check on his tibia, and I imagine, to see what the neurologist says - but it looks like, for the time being, he has NF1.
I also have the x-ray pictures in a jpeg and just cannot tell what the numbers are. It's going to kill me to wait until Monday to get numbers. I have a hotel to book and plans to make for Wednesday - and if he isn't going down there, I need to call and get in to our local doctor and figure out where the heck we're going to get a decent brace in this city.
And, so, here I am - waiting, once again.
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