After a totally uneventful trip, we're home!
William is doing really well...walking with a limp, but walking nonetheless. Chelsea totally held down the fort in our absence. She and Chloe fed all the animals, watered all the animals, and hopefully enjoyed their time here. We will return the rental, pick up what we hope is a fixed van, and then pick up our other five children tomorrow morning...all before 11:30! :)
Results of the biopsy should be available in six to eight weeks. Dr Shoffner stated that sometimes it takes as long as 12 weeks...
As our life returns to our normal craziness, we remain grateful for our amazing friends who helped us through this trip, who helped provide some really cool experiences for William, who prayed for us, and who sat with us as we laugh and/or cry... In the midst of this storm, the Lord continues to shelter us in very real ways...
Friday, February 20, 2009
Thursday, February 19, 2009
Oops
Apparently, I did not enable that little box that allows the blog to be emailed to those of you who clicked on the "Follow this blog", but I have fixed it. I'm sorry!
Children's Hospital of Atlanta at the Scottish Rite
Children's Hospital of Atlanta at the Scottish Rite is truly an amazing hospital. It makes all of the other hospitals we've visited pale in comparison... Not only was the hospital beautiful, but it was thoughtfully designed with families in mind. Even their day surgery suite had rooms instead of curtains...and that room was yours for the day. It lacked the cattle drive mentality that is so prevalent in most of the facilities we've seen to date.
The staff was outstanding. Each floor has its own child life specialist...Allison was ours and she obviously loves her job. Will wasn't talking about his anxiety, but she got him talking and showed him pictures of the OR, got him a movie to watch, and simply played with him and seemed to enjoy his particular sense of humor. When it was time to leave, she actually (apparently unusually) walked us out.
Rick, a friend and one of our elders from church, works in Atlanta and left work to be with us. I'm not sure he realizes how much it helped, but having someone else to chat with and pray with is a real blessing. When I burst into tears, he didn't blink an eye... :)
The real glitch in the day... is that the first words that Will uttered upon his return to his room were, "I remember the whole thing." After asking him what exactly he remembered, he was able to recount enough to convince us all that he was indeed partially conscious throughout at least parts of the surgery. Given the medications adminstered to William, this should never have happened. After meeting with the anesthesiologist, he was amazed and concerned...he stated that in 15 years, he had never had a patient experience this. Needless to say, we're concerned. William was obviously distraught when he initially related the story, but he appears to be processing it fairly well... We are concerned about the long-term effects of this experience. To have a tube down your throat and not be able to speak, and to have meds on board that partially paralyze you such that you can't move to let someone know you're awake must be incredibly frightening.
William is in a moderate amount of pain. He's propped up on the sofa in our room and is watching the History Channel and enjoying cable while he has it. :)
We plan to head toward home tomorrow...Lord willing it will be less eventful than the trip down was! :)
The staff was outstanding. Each floor has its own child life specialist...Allison was ours and she obviously loves her job. Will wasn't talking about his anxiety, but she got him talking and showed him pictures of the OR, got him a movie to watch, and simply played with him and seemed to enjoy his particular sense of humor. When it was time to leave, she actually (apparently unusually) walked us out.
Rick, a friend and one of our elders from church, works in Atlanta and left work to be with us. I'm not sure he realizes how much it helped, but having someone else to chat with and pray with is a real blessing. When I burst into tears, he didn't blink an eye... :)
The real glitch in the day...
William is in a moderate amount of pain. He's propped up on the sofa in our room and is watching the History Channel and enjoying cable while he has it. :)
We plan to head toward home tomorrow...Lord willing it will be less eventful than the trip down was! :)
Wednesday, February 18, 2009
Uneventful Days are Highly Underappreciated!
Billy was feeling better but still unsettled, so William and I headed to the Guest House for breakfast and let Billy sleep. Unfortunately, Will couldn't eat breakfast due to his impending metabolic study, but he was a good sport and went with me; we played Farkle while I ate. :) As has been their habit, the managers of the hotel wrapped food for William to eat later. This particular hotel management has been amazing!
The metabolic test was much simpler than what we had read. Will basically got to sit in a recliner with a bee-keeper-like hood (only much bigger!) that measured oxygen and carbon dioxide...basically, how many calories does Will burn a day? The quick read is that Will's metabolic rate is on the high side of normal...not bad.
The doctor was quite pleasant...very professorial. :) He was willing to explain in depth what he knew of Will's case and asked if his presumptions of what he read were accurate. When I asked what exactly he was looking for in his tests, he responded that he wasn't looking for anything catastrophic. That was a relief! He stated that William obviously was growing taller but was struggling to put on any muscle weight. While his weight gain has always been slow, the fact that it is specifically muscle weight that is lacking is a great point. I never even thought to pinpoint it as such. Combined with all of William's other diagnosis, he was looking for commonalities as well as genetic links. Dr Shoffner is truly a researcher, but he is very...human. While the visit didn't produce any new revelations, it did allow us a slightly better understanding of where he's heading. It also was wonderful to be told that William would NOT need a spinal tap tomorrow morning. Dr Shoffner stated that the information gleaned from the spinal fluid seldom yielded anything beneficial, so he saw no need for it.
After the doctor, we changed into jeans and headed to The World of Coke. It's a really cool Coke museum right beside the aquarium. We spent about two hours learning about the history of Coke, watched a 4-D movie, and then got to taste as many as 64 different products that Coke creates and ships throughout the world. There's even a section where Coke is bottled... It was a lot of fun...and it was really relaxing to just play for a couple of hours...something we just don't generally have the opportunity to do. While tasting 64 differently flavored beverages was entertaining, I'm perfectly happy to stick with my Diet Coke. Some of those flavors were...awful! :) But it was very cool to taste what other countries around the world enjoy...
We left the Coke museum just prior to a string of massive thunderstorms moved through the Atlanta region. Apparently, three miles south of Atlanta actually experienced softball sized hail. The news tonight is full of the severe weather.
We met Rick, one of our elders who works in Atlanta, for dinner at Fuddruckers. It was a lovely couple of hours of simply sitting still and chatting with a friend. William had only had one meal to that point and was also anxious over tomorrow's procedure, so by the time we left the restaurant, he was a bit...entertaining. :) By ten he was showered and in bed...which is where I need to head. We're supposed to be at the hospital by 730 in the morning and I'm traveling with two non-morning people. :) Other than the severe weather, including tornado warnings, the day was not only uneventful, it was actually almost calm. It was a lovely change over the last couple of days!
The metabolic test was much simpler than what we had read. Will basically got to sit in a recliner with a bee-keeper-like hood (only much bigger!) that measured oxygen and carbon dioxide...basically, how many calories does Will burn a day? The quick read is that Will's metabolic rate is on the high side of normal...not bad.
The doctor was quite pleasant...very professorial. :) He was willing to explain in depth what he knew of Will's case and asked if his presumptions of what he read were accurate. When I asked what exactly he was looking for in his tests, he responded that he wasn't looking for anything catastrophic. That was a relief! He stated that William obviously was growing taller but was struggling to put on any muscle weight. While his weight gain has always been slow, the fact that it is specifically muscle weight that is lacking is a great point. I never even thought to pinpoint it as such. Combined with all of William's other diagnosis, he was looking for commonalities as well as genetic links. Dr Shoffner is truly a researcher, but he is very...human. While the visit didn't produce any new revelations, it did allow us a slightly better understanding of where he's heading. It also was wonderful to be told that William would NOT need a spinal tap tomorrow morning. Dr Shoffner stated that the information gleaned from the spinal fluid seldom yielded anything beneficial, so he saw no need for it.
After the doctor, we changed into jeans and headed to The World of Coke. It's a really cool Coke museum right beside the aquarium. We spent about two hours learning about the history of Coke, watched a 4-D movie, and then got to taste as many as 64 different products that Coke creates and ships throughout the world. There's even a section where Coke is bottled... It was a lot of fun...and it was really relaxing to just play for a couple of hours...something we just don't generally have the opportunity to do. While tasting 64 differently flavored beverages was entertaining, I'm perfectly happy to stick with my Diet Coke.
We left the Coke museum just prior to a string of massive thunderstorms moved through the Atlanta region. Apparently, three miles south of Atlanta actually experienced softball sized hail. The news tonight is full of the severe weather.
We met Rick, one of our elders who works in Atlanta, for dinner at Fuddruckers. It was a lovely couple of hours of simply sitting still and chatting with a friend. William had only had one meal to that point and was also anxious over tomorrow's procedure, so by the time we left the restaurant, he was a bit...entertaining. :) By ten he was showered and in bed...which is where I need to head. We're supposed to be at the hospital by 730 in the morning and I'm traveling with two non-morning people. :) Other than the severe weather, including tornado warnings, the day was not only uneventful, it was actually almost calm. It was a lovely change over the last couple of days!
Tuesday, February 17, 2009
Aquarium, Adventures, Atlanta...oh my!
We had to be at the hospital at 9:30 this morning, so we grabbed breakfast at the hotel (they actually had a healthy breakfast available!), and acquainted ourselves with Atlanta drivers. Oh my! It was just at the end of rush hour, and people were not ready to exhibit their southern hospitality. :) Needless to say, I was very glad to not be driving!
With only one u-turn, we made it to the hospital in one piece. The parking deck elevator actually takes you right to the surgical floor, so we found reception incredibly easily. Here, southern hospitality was once again evident, despite the cold temps outside. We filled in the paperwork ("My, he takes a lot of medications!"), registered with patient access, and met with the nurse practitioner. She was a great sport. Will was in rare form (he actually did a head stand on the bed!!!), showing that he is anxious about the impending procedures, but she hardly blinked an eye. She explained that they might take further precautions since they are looking for mitochondria disorders...Will might have to remain in recovery for additional time, or they might use different gases for the anesthesia, but she didn't appear to be overly concerned.
We left the hospital and headed for the Atlanta Aquarium. They were sealing a sidewalk outside of the museum with something incredibly foul smelling. Unfortunately, my lungs were still twitchy from last night's event, so I pulled out my handy dandy inhaler. Billy asked about the epi pen, but it was safely tucked away in my bag...which was in the car. :) My lungs did respond to the medication, so we were able to finally make it into the aquarium.
It was amazing! William ooh'ed and ah'd his way through the entire aquarium as he took pictures of almost everything. We sat and watched the tank with the whale sharks for a while...did you know that a saw-tooth shark is actually a ray? William does now. :) He was totally enthralled the entire time. We even watched Beluga whales being fed. One of the really cool aspects of this aquarium is how visible the fish are. There are tanks overhead where you can actually watch the fish swimming in their natural environment. It's pretty impressive to see a 20 foot whale shark swimming over your head! The manta ray is huge...and you can watch their gills open and close as they meander over you. This particular tank holds 6.3 million gallons of water! It's as large as a football field. Oh! And a cuttlefish released ink while we were standing there! That was very cool...
While we were meandering through the aquarium, Billy was beginning to feel rather unwell. As the afternoon wore on, he deteriorated. Finally, he sat in a chair while Will and I finished the last section and ate lunch. We were planning to head to the Coke museum, but Billy was feeling downright awful and needed to lay down. We decided to rearrange our schedule, and we're hoping to visit it tomorrow after the doctor's appointment.
We survived rush hour in Atlanta (these drivers are in a class by themselves!), and made it back to the hotel safely. Billy ensconced himself in our room while William and I chatted about what we were going to do... We chatted with the front desk (Have I mentioned how amazing these people are??? They sent a bowl of soup to Billy and are going to bake chocolate cookies sans nuts for William tomorrow!) and discovered a bowling alley just a couple of miles away. So, Will and I killed a couple of hours bowling really poorly but enjoying ourselves and then picked up a Chinese dinner to share. We played Farkle and ate, then William headed to bed....
William is obviously uncertain about the metabolic study tomorrow. He's really anxious about Thursday, but the day today was thoroughly enjoyable! It was such a welcome reprieve for him... It was truly a respite. We have obviously had one little adventure after another (a huge allergic reaction, an asthma attack, and a stomach virus), but the Lord has still provided a huge respite for William. He was so thankful today for the gift of the aquarium, something he would not normally be able to do. It was, simply put, a huge gift in the middle of the storm.
With only one u-turn, we made it to the hospital in one piece. The parking deck elevator actually takes you right to the surgical floor, so we found reception incredibly easily. Here, southern hospitality was once again evident, despite the cold temps outside. We filled in the paperwork ("My, he takes a lot of medications!"), registered with patient access, and met with the nurse practitioner. She was a great sport. Will was in rare form (he actually did a head stand on the bed!!!), showing that he is anxious about the impending procedures, but she hardly blinked an eye. She explained that they might take further precautions since they are looking for mitochondria disorders...Will might have to remain in recovery for additional time, or they might use different gases for the anesthesia, but she didn't appear to be overly concerned.
We left the hospital and headed for the Atlanta Aquarium. They were sealing a sidewalk outside of the museum with something incredibly foul smelling. Unfortunately, my lungs were still twitchy from last night's event, so I pulled out my handy dandy inhaler. Billy asked about the epi pen, but it was safely tucked away in my bag...which was in the car. :) My lungs did respond to the medication, so we were able to finally make it into the aquarium.
It was amazing! William ooh'ed and ah'd his way through the entire aquarium as he took pictures of almost everything. We sat and watched the tank with the whale sharks for a while...did you know that a saw-tooth shark is actually a ray? William does now. :) He was totally enthralled the entire time. We even watched Beluga whales being fed. One of the really cool aspects of this aquarium is how visible the fish are. There are tanks overhead where you can actually watch the fish swimming in their natural environment. It's pretty impressive to see a 20 foot whale shark swimming over your head! The manta ray is huge...and you can watch their gills open and close as they meander over you. This particular tank holds 6.3 million gallons of water! It's as large as a football field. Oh! And a cuttlefish released ink while we were standing there! That was very cool...
While we were meandering through the aquarium, Billy was beginning to feel rather unwell. As the afternoon wore on, he deteriorated. Finally, he sat in a chair while Will and I finished the last section and ate lunch. We were planning to head to the Coke museum, but Billy was feeling downright awful and needed to lay down. We decided to rearrange our schedule, and we're hoping to visit it tomorrow after the doctor's appointment.
We survived rush hour in Atlanta (these drivers are in a class by themselves!), and made it back to the hotel safely. Billy ensconced himself in our room while William and I chatted about what we were going to do... We chatted with the front desk (Have I mentioned how amazing these people are??? They sent a bowl of soup to Billy and are going to bake chocolate cookies sans nuts for William tomorrow!) and discovered a bowling alley just a couple of miles away. So, Will and I killed a couple of hours bowling really poorly but enjoying ourselves and then picked up a Chinese dinner to share. We played Farkle and ate, then William headed to bed....
William is obviously uncertain about the metabolic study tomorrow. He's really anxious about Thursday, but the day today was thoroughly enjoyable! It was such a welcome reprieve for him... It was truly a respite. We have obviously had one little adventure after another (a huge allergic reaction, an asthma attack, and a stomach virus), but the Lord has still provided a huge respite for William. He was so thankful today for the gift of the aquarium, something he would not normally be able to do. It was, simply put, a huge gift in the middle of the storm.
Atlanta!
The day received a late start. We didn't actually get out of Dodge until 11, but it was clear sailing...well, sort of. Being that it was a federal holiday, traffic was light almost the whole way. Charlotte got a little more congested, but not nearly as bad as we thought.
We stopped for gas around 5 and decided to eat dinner. Billy asked where I wanted to go. I really love Italian food so I suggested Olive Garden. There was one less than half a mile away...gotta love Blackberries! We were seated quickly, ordered. Will loves their pizza (sans cheese, of course!) Unfortunately, our server told us, they had put cheese on Will's pizza... Do we wait? Sure. Then the manager came to our table and explained that the pizza dough was frozen. He told Will he could have whatever he wanted...Will chose spaghetti and meatballs and was perfectly content. (they did offer cheese when they brought it to the table, but we quickly said, no, thank you!) We all shared their black tie chocolate mousse cake for dessert. It is my birthday! ;)
Our and the Garbee children called and sang Happy Birthday to me while we were waiting for our dinner. That was so cool!
We headed out. My turn to drive.... But, no! About 40 minutes down the road I started to itch, then cough. Not good. We pulled off I85 at the Anderson exit and headed left toward the big blue H sign. We found a Bloom and pulled in for some Benadryl. I was feeling pretty rotten, so Billy hung out in the hospital parking lot until we were certain that the Benadryl would be sufficient. The epi pen sat on the dash for the last two hours while I took a drug induced nap. Fortunately, all is well. I'm still itchy and hacking, but the danger appears to have passed. Another round of Benadryl and i'm heading to bed.
We are in the Residence Inn and have a little apartment with a loft. We unpacked (before the second round of Benadryl!) and have gotten directions for tomorrow's appointment. Welcome to Atlanta!
Sent from my Verizon Wireless BlackBerry
We stopped for gas around 5 and decided to eat dinner. Billy asked where I wanted to go. I really love Italian food so I suggested Olive Garden. There was one less than half a mile away...gotta love Blackberries! We were seated quickly, ordered. Will loves their pizza (sans cheese, of course!) Unfortunately, our server told us, they had put cheese on Will's pizza... Do we wait? Sure. Then the manager came to our table and explained that the pizza dough was frozen. He told Will he could have whatever he wanted...Will chose spaghetti and meatballs and was perfectly content. (they did offer cheese when they brought it to the table, but we quickly said, no, thank you!) We all shared their black tie chocolate mousse cake for dessert. It is my birthday! ;)
Our and the Garbee children called and sang Happy Birthday to me while we were waiting for our dinner. That was so cool!
We headed out. My turn to drive.... But, no! About 40 minutes down the road I started to itch, then cough. Not good. We pulled off I85 at the Anderson exit and headed left toward the big blue H sign. We found a Bloom and pulled in for some Benadryl. I was feeling pretty rotten, so Billy hung out in the hospital parking lot until we were certain that the Benadryl would be sufficient. The epi pen sat on the dash for the last two hours while I took a drug induced nap. Fortunately, all is well. I'm still itchy and hacking, but the danger appears to have passed. Another round of Benadryl and i'm heading to bed.
We are in the Residence Inn and have a little apartment with a loft. We unpacked (before the second round of Benadryl!) and have gotten directions for tomorrow's appointment. Welcome to Atlanta!
Sent from my Verizon Wireless BlackBerry
Sunday, February 8, 2009
Beautiful Days & Jeeps Just Go Together
Having gotten my Jeep in November, I hadn't had the opportunity to drive without the top. Something about 30 degrees and no top just didn't sound like much fun. However, today was gorgeous and 69 degrees! Billy took the top off for me, and off we went! Yay! Billy still isn't a fan of the Jeep, but I had a blast. :)
Introductions
My husband, the IT guru, set up this blog for me ages ago. I, the computer illiterate, have taken months to gather my courage and actually thrust myself into the blogging world. So, here goes....
I have 8 children. Yes, they are all ours. No, we are not Catholic or Mormon. We're Presbyterian. As in so much of my life, I just don't fit that typical mold. I'm always amused when someone says, "You don't look like you have 8 children." What exactly does that mean? Am I too short? Too blonde (you can never be too blonde!)? Too slender? Too heavy? Am I not supposed walk under my own power without the need of mechanical assistance?
I'm also a wife to Billy, the local IT guru mentioned above. The concept that opposites attract holds true here. I love writing, he despises reports. He has zero fear of heights while the park ranger had to peel me off the wall at the Grand Canyon's Bright Angel Trail. I love running, he does not understand why I willingly endure pain for the sake of conquering another mile. I love salads; he adores a good cookie. He's an incredibly good sport to my competitive nature.
Life with a large family is a whole new ball game. People who come for dinner get more than they bargained for... Do you have any idea how long it takes to pas food around the table? Well, the perfect solution, at least for bread, is to toss it. It's amazing how accurate my arm has gotten. :) Occasionally I miss...there's a reason we don't throw the mashed potatoes! There are also very large bowls on our table. Need some mashed potatoes? No problem, the kids get to peel 5 lb. My meatloaf also requires 5 lb of meat. I have totally forgotten how to cook for just 2 people. When the kids all leave home, I'm going to have to invite everyone home for dinner or we're going to be stuck eating the same thing for a month, which Billy really doesn't mind, but, back to that opposites thing, I hate!
Did I mention that we have 3 dogs? Labs are great family dogs. We have 2, a black and a chocolate. If you can survive their first 3 years, you're home free. Ever seen "Marley and Me"? We wondered if they wrote that book while surruptitiously watching our family. Did I mention that labs are great if you can survive their first 3 years? Last year, William, our fifth child, was given a beagle. Beagles are not good family dogs. They need a job. Their version of a job is figuring out how to escape from the fence or keeping their nose to the ground until they're four miles from home and their "master" is wondering if they'll ever come home. They also take great glee in chasing the family chickens. Catching them isn't part of the job description...just chasing them is. None of these is terribly conducive to the harmony of our home, but it does seem to fit well with the chaos that seems to simply breed in our home.
Chaos is a natural for us. We have perfected the art of lost shoes, lost school books, lost games, and lost socks. I'm convinced that there's a black hole in our house that sucks in socks and pencils. Homeschooling families always have pencils. At least we're always buying pencils because they simply vanish on a regular basis. And socks. I think we should have a budget line just for socks.
I have 8 children. Yes, they are all ours. No, we are not Catholic or Mormon. We're Presbyterian. As in so much of my life, I just don't fit that typical mold. I'm always amused when someone says, "You don't look like you have 8 children." What exactly does that mean? Am I too short? Too blonde (you can never be too blonde!)? Too slender? Too heavy? Am I not supposed walk under my own power without the need of mechanical assistance?
I'm also a wife to Billy, the local IT guru mentioned above. The concept that opposites attract holds true here. I love writing, he despises reports. He has zero fear of heights while the park ranger had to peel me off the wall at the Grand Canyon's Bright Angel Trail. I love running, he does not understand why I willingly endure pain for the sake of conquering another mile. I love salads; he adores a good cookie. He's an incredibly good sport to my competitive nature.
Life with a large family is a whole new ball game. People who come for dinner get more than they bargained for... Do you have any idea how long it takes to pas food around the table? Well, the perfect solution, at least for bread, is to toss it. It's amazing how accurate my arm has gotten. :) Occasionally I miss...there's a reason we don't throw the mashed potatoes! There are also very large bowls on our table. Need some mashed potatoes? No problem, the kids get to peel 5 lb. My meatloaf also requires 5 lb of meat. I have totally forgotten how to cook for just 2 people. When the kids all leave home, I'm going to have to invite everyone home for dinner or we're going to be stuck eating the same thing for a month, which Billy really doesn't mind, but, back to that opposites thing, I hate!
Did I mention that we have 3 dogs? Labs are great family dogs. We have 2, a black and a chocolate. If you can survive their first 3 years, you're home free. Ever seen "Marley and Me"? We wondered if they wrote that book while surruptitiously watching our family. Did I mention that labs are great if you can survive their first 3 years? Last year, William, our fifth child, was given a beagle. Beagles are not good family dogs. They need a job. Their version of a job is figuring out how to escape from the fence or keeping their nose to the ground until they're four miles from home and their "master" is wondering if they'll ever come home. They also take great glee in chasing the family chickens. Catching them isn't part of the job description...just chasing them is. None of these is terribly conducive to the harmony of our home, but it does seem to fit well with the chaos that seems to simply breed in our home.
Chaos is a natural for us. We have perfected the art of lost shoes, lost school books, lost games, and lost socks. I'm convinced that there's a black hole in our house that sucks in socks and pencils. Homeschooling families always have pencils. At least we're always buying pencils because they simply vanish on a regular basis. And socks. I think we should have a budget line just for socks.
Subscribe to:
Posts (Atom)