I'm sure everyone on the planet knows about the website Damn You, AutoCorrect! by now. I find it outrageously hilarious, like laugh-until-I-cry-every-time-I-read-it-hilarious and once-it-made-me-laugh-so-hard-that-I-had-an-asthma-attack-hilarious. If you haven't seen it before, you are missing out.
The reason I bring this up is that I had my very own auto-correct incident a couple of weeks ago. When KayTar was having those issues with hypoglycemia during her last illness, I sent the pediatrician an email and ended it by saying, "I just wanted to touch base with you..." However, my iPod thought better of it and decided that what I actually wanted to say was "I just wanted to touch ass with you." and promptly changed my wording. Luckily, I gave my email a quick once over before sending it and I caught the errant auto-correction before I inadvertently and inappropriately hit on our pediatrician, because as much as I like her...I don't really like her in THAT way. ;)
Tuesday, November 30, 2010
Saturday, November 27, 2010
Pictures from Thanksgiving
Friday, November 19, 2010
Outed!
Well, it finally happened. After roughly 4.5 years of secretly blogging, I have been outed...by a DOLL, no less. I always thought it would be medical information that finally did it, because whenever I toss a few of KayTar's medical issues into a search bar, my blog is always on the first page of results. But no...it was not medical information, it was a Jewel Sparkle Lalaloopsy doll that did it in the end.
My mom (hi, MOM!) was searching the internet for the doll that KayTar really wants for Christmas and guess what she found instead? THIS BLOG. I was quite surprised when she called me and said, "I was looking for that Lalaloopsy doll KayTar wants and guess what I found?! YOUR BLOG!" It was bound to happen sometime, in fact there were times I had wondered if people secretly knew about my blog and were secretly reading it as I was secretly writing it. Josh was just thrilled that HE wasn't the one to spill the beans. He is a terrible secret keeper and it is impressive that although he's known abut the blog all this time, he's never accidentally mentioned it.
I don't have any real reason for keeping the blog a secret, I just liked the privacy it afforded me. I tend to be a bit self-conscious, in fact if Josh comes into a room when I'm writing a post I close it down and finish it later. In the past, I've told him he is welcome to read the blog (he doesn't) but not to discuss it with me later. In the early days of the blog, I was very worried about KayTar...everything felt so serious all the time...I needed the privacy to work through the weight of it on my own. Now, I don't really need it anymore, I just kept it a secret out of habit. I guess now I'll have to decide if I want to tell everyone, as I'm sure there are people (friends and family) who would like to keep up with us this way, or keep it a pseudo-secret until they stumble across us on an errant Google search of their own!
All I can say is KayTar better be getting that doll for Christmas (Yes, I'm talking to YOU, Mom)! ;)
My mom (hi, MOM!) was searching the internet for the doll that KayTar really wants for Christmas and guess what she found instead? THIS BLOG. I was quite surprised when she called me and said, "I was looking for that Lalaloopsy doll KayTar wants and guess what I found?! YOUR BLOG!" It was bound to happen sometime, in fact there were times I had wondered if people secretly knew about my blog and were secretly reading it as I was secretly writing it. Josh was just thrilled that HE wasn't the one to spill the beans. He is a terrible secret keeper and it is impressive that although he's known abut the blog all this time, he's never accidentally mentioned it.
I don't have any real reason for keeping the blog a secret, I just liked the privacy it afforded me. I tend to be a bit self-conscious, in fact if Josh comes into a room when I'm writing a post I close it down and finish it later. In the past, I've told him he is welcome to read the blog (he doesn't) but not to discuss it with me later. In the early days of the blog, I was very worried about KayTar...everything felt so serious all the time...I needed the privacy to work through the weight of it on my own. Now, I don't really need it anymore, I just kept it a secret out of habit. I guess now I'll have to decide if I want to tell everyone, as I'm sure there are people (friends and family) who would like to keep up with us this way, or keep it a pseudo-secret until they stumble across us on an errant Google search of their own!
All I can say is KayTar better be getting that doll for Christmas (Yes, I'm talking to YOU, Mom)! ;)
Sunday, November 14, 2010
Better/Worse.
I woke up at about 5:30 this morning to KayTar calling me from her room. She wanted me to take her temperature, so I did, along with checking her glucose. Her temperature was just 100.6 and her glucose was 52. I think she was a little diaphoretic from the hypoglycemia, which she related to a feverish feeling. I set up a 4 ounce Pedialyte feed and told her to go back to sleep, 5:30 is too early on a Sunday. I went back to sleep for a bit, too. I assumed that the Pedialyte would fix things rather easily, as it had yesterday. When we woke up, her glucose was still 52 (or perhaps it had risen a small amount and then fallen again)! I gave her another 4 ounces of Pedialyte, this time with her tablespoon of cornstarch, but her response was very sluggish. As a point of reference, yesterday her glucose levels were rising by about 10 points at every 15 minute check. This morning, it took 30 minutes to go from 52 to 54. She was feeling hungry, so we gave her a jar of corn and sweet potatoes since it has the biggest carbohydrate punch of any of the baby foods she will eat. She tolerated it well and about 30 minutes after, she numbers finally got up into the 60s. Yesterday, we went from 47 to 90 in an hour, today it took about 4 hours to get from the 50s to the 60s. She's back in her normal range now, but it took a long time to get there. Tonight we're going to do an intermittent Pedialyte feed to see if that will prevent the overnight hypoglycemia.
For some reason, this virus is having a particularly nasty effect on her glucose levels. She's been sick loads of times recently and none of those viruses have caused her numbers to bottom out like this one has. The last time we dealt with this was April, I think! I suppose certain viruses cause more of a metabolic strain, causing everything to get a bit wonky for her. Even though this virus has been little more than a fever, symptom-wise, I'll be glad to see it go!
For some reason, this virus is having a particularly nasty effect on her glucose levels. She's been sick loads of times recently and none of those viruses have caused her numbers to bottom out like this one has. The last time we dealt with this was April, I think! I suppose certain viruses cause more of a metabolic strain, causing everything to get a bit wonky for her. Even though this virus has been little more than a fever, symptom-wise, I'll be glad to see it go!
Saturday, November 13, 2010
More effective than coffee!
This morning was the first Saturday morning in quite a while that we didn't have to be up, ready, and out the door by 8:45am because of baseball. Regardless, BubTar was up at 6:30am because he wanted to start reading the new Wimpy Kid book he picked up last night. KayTar woke up about 7am and called down to us, still snug in our bed, and we directed her to go read in her brother's room with him. She did and we stayed cozy in bed, though not quite asleep anymore. About thirty minutes later, KayTar started calling me. She had come down to the living room, asking me to get her chicken nuggets from the kitchen...which is NOT that far from the living room. I said, "Can't you just get them?" She said, "I'm trying, but my legs are too wobbly!" I was up in a FLASH. Wobbly legs is one of her chief complaints when she is hypoglycemic, and she has been feverish since yesterday morning...making hypoglycemia a definite possibility.
I checked her glucose and it was 47. Then I felt like a real jerk for lazing around in bed like I had, especially when she said, "Well, I slid myself down the stairs because my legs wouldn't work and I was trying to drag myself to the kitchen, but I just couldn't." We ran in 2 ounces of Pedialyte and rechecked her glucose in 15 minutes (in the interim, I rushed to get ready in case we were going to have to go to the hospital), it went up to 60. We repeated the Pedialyte and glucose checks every 15 minutes until she'd had a whole 8 ounces plus a tablespoon of cornstarch. Luckily, she tolerated it well without any vomiting. After that, her glucose was back up to the 90's. Whew. There are few things that can instantly shake me from a sleepy stupor without the aid of caffeine, but this is definitely one of them. I don't recommend it, though, just stick to coffee.
The rest of the day has gone pretty well with 4 ounce feeds of Pediasure, but she vomited up her most recent feed which was a 6 ouncer. I'm not sure what we will be able to get in her before bed...and I don't know how her numbers will be in the morning. Wish us luck!
I checked her glucose and it was 47. Then I felt like a real jerk for lazing around in bed like I had, especially when she said, "Well, I slid myself down the stairs because my legs wouldn't work and I was trying to drag myself to the kitchen, but I just couldn't." We ran in 2 ounces of Pedialyte and rechecked her glucose in 15 minutes (in the interim, I rushed to get ready in case we were going to have to go to the hospital), it went up to 60. We repeated the Pedialyte and glucose checks every 15 minutes until she'd had a whole 8 ounces plus a tablespoon of cornstarch. Luckily, she tolerated it well without any vomiting. After that, her glucose was back up to the 90's. Whew. There are few things that can instantly shake me from a sleepy stupor without the aid of caffeine, but this is definitely one of them. I don't recommend it, though, just stick to coffee.
The rest of the day has gone pretty well with 4 ounce feeds of Pediasure, but she vomited up her most recent feed which was a 6 ouncer. I'm not sure what we will be able to get in her before bed...and I don't know how her numbers will be in the morning. Wish us luck!
Thursday, November 11, 2010
Leftovers.
I had several leftover photos from September and October, so I figured it was about time to post them, as it is now November! I went through and posted captions for all of them and then Blogger decided to ignore my save and I'm not rewriting them...so now you're on your own. The photos are pretty self-explanatory.
Monday, November 08, 2010
All better!
KayTar's swallowing issues got progressively better over the weekend and I daresay we're back to normal now! I think that she had either inflammation in her esophagus from the vomiting last weekend or perhaps some anxiety triggered by all of that, but whatever the cause, it seems like things are functioning properly again and I am so glad.
The whole thing really took me by surprise. Things have been steadily improving for KayTar for so long now that the thought of something deteriorating without warning was really frightening. It reminded me that although we know so much more about KayTar than we used to, we still don't really know the underlying condition that has triggered any of her symptoms or what the long term prognosis is. I have faith that the amazing improvements we've seen will continue, but when things like this happen it reminds me that there are no guarantees. Honestly, there are no guarantees in parenting of any kind, but it is especially true when dealing with a child who has special medical or developmental needs. The moment you discover that something is "wrong" with your child, you lose the ability to envision the future the way you always have. As things with KayTar have changed so much over the past couple of years, I've begun to take things for granted again and believe that this steady uphill climb will continue to be an uphill climb. When she started to have trouble swallowing, I suddenly felt the ground shift between my feet and somehow we were suddenly going downhill without warning. It is a relief to know that it was simply a small dip in the terrain rather than a permanent change in direction, but it reminded me that out here on the road less traveled, there isn't a road map and we've just got to take each step as it comes.
The whole thing really took me by surprise. Things have been steadily improving for KayTar for so long now that the thought of something deteriorating without warning was really frightening. It reminded me that although we know so much more about KayTar than we used to, we still don't really know the underlying condition that has triggered any of her symptoms or what the long term prognosis is. I have faith that the amazing improvements we've seen will continue, but when things like this happen it reminds me that there are no guarantees. Honestly, there are no guarantees in parenting of any kind, but it is especially true when dealing with a child who has special medical or developmental needs. The moment you discover that something is "wrong" with your child, you lose the ability to envision the future the way you always have. As things with KayTar have changed so much over the past couple of years, I've begun to take things for granted again and believe that this steady uphill climb will continue to be an uphill climb. When she started to have trouble swallowing, I suddenly felt the ground shift between my feet and somehow we were suddenly going downhill without warning. It is a relief to know that it was simply a small dip in the terrain rather than a permanent change in direction, but it reminded me that out here on the road less traveled, there isn't a road map and we've just got to take each step as it comes.
Thursday, November 04, 2010
Dysphagia.
That is the fancy word for difficulty swallowing...it is also happens to be KayTar's brand new issue, apparently.
Yesterday, I noticed that she was chewing up a bite of her solid food, then spitting it back out. She did it at snack and at dinner, and both times she stopped eating afterward. She said the food was getting stuck in her mouth. I asked her what she meant and she said she was spitting it out because it wouldn't go down her throat. I asked her about her meals at school (breakfast and lunch) for the past couple of days and she told me the same thing about each of them, she tried her food, chewed it, but spit it out because it wouldn't go down. She was with my mom during the day on Monday, so I called and asked if she had seen KayTar eat any solids. She said she had given KayTar chips and guacamole, but she couldn't say whether she ate any chips or just the guacamole (which is a pureed consistency). I also talked to the pediatrician, who said that if it continues to be an issue, we'll need to see the ENT/get an upper GI with a swallow study done.
I emailed KayTar's teacher and school nurse, so they could keep an eye on her at meals. Although I think it is very unlikely because of how cautious KayTar is with food, I'd hate for her to choke and not have mentioned this issue to anyone in advance. At breakfast, the teacher sat with her and encouraged her to try her pepperoni, which she did...but she picked it back out of her mouth because it wouldn't go down. At lunch, she successfully ate a few bites of garlic bread and a pepperoni. At snack, she tried pepperoni again, but it got stuck and she spit it out. After school, she wanted to try bacon bits, so I gave her one and it went down fine...but the subsequent ones got stuck and then she was done. Trying to get some more information about what exactly is happening, I gave her some options to explain what might be happening:
Yesterday, I noticed that she was chewing up a bite of her solid food, then spitting it back out. She did it at snack and at dinner, and both times she stopped eating afterward. She said the food was getting stuck in her mouth. I asked her what she meant and she said she was spitting it out because it wouldn't go down her throat. I asked her about her meals at school (breakfast and lunch) for the past couple of days and she told me the same thing about each of them, she tried her food, chewed it, but spit it out because it wouldn't go down. She was with my mom during the day on Monday, so I called and asked if she had seen KayTar eat any solids. She said she had given KayTar chips and guacamole, but she couldn't say whether she ate any chips or just the guacamole (which is a pureed consistency). I also talked to the pediatrician, who said that if it continues to be an issue, we'll need to see the ENT/get an upper GI with a swallow study done.
I emailed KayTar's teacher and school nurse, so they could keep an eye on her at meals. Although I think it is very unlikely because of how cautious KayTar is with food, I'd hate for her to choke and not have mentioned this issue to anyone in advance. At breakfast, the teacher sat with her and encouraged her to try her pepperoni, which she did...but she picked it back out of her mouth because it wouldn't go down. At lunch, she successfully ate a few bites of garlic bread and a pepperoni. At snack, she tried pepperoni again, but it got stuck and she spit it out. After school, she wanted to try bacon bits, so I gave her one and it went down fine...but the subsequent ones got stuck and then she was done. Trying to get some more information about what exactly is happening, I gave her some options to explain what might be happening:
1. Was she trying to swallow, but the food was getting stuck?She maintained that she was TRYING to swallow, but the food was getting stuck. I'm perplexed. I don't think it is behavioral, because these are foods she likes. She could simply says she was done and no one would make her eat another bite. She's never mentioned anything of this sort before. She is fine with liquids and she ate a stage 2 jar of peas this evening without issue. I'm hoping it resolves itself soon, but I don't know how likely that is...probably about as likely as her participating in a swallow study. (Seriously, how do they do swallow studies on kids like her? I think there is about zero chance she'll willingly drink the barium and we can't put it in her g-button because that defeats the purpose of a SWALLOW study.)
2. Was she swallowing, but then the food was returning to her mouth? (she has reflux)
3. Was she chewing her food, but losing track of where it was in her mouth, causing her to spit out her food? (she seems to only eat with one side of her mouth, which made me wonder about this)
4. None of these...something different that I didn't mention.
Wednesday, November 03, 2010
Best Laid Plans...
This weekend didn't *quite* go as planned. Let's take it one day at a time...
Friday:
I did enjoy a lunch date with Josh, but I did not finish that paper. Literature reviews are like 200% more painful to write than a regular research paper. It definitely didn't get done on Friday. We did go to physical therapy and the pediatrician's appointment (and get a script for oral steroids and a switch from Qvar to Advair in an attempt to curtail all the wheezing), but because of that KayTar missed out on trick or treating with her class. She was a little bummed. However, when we were at PT I got a call from the metabolic clinic saying that they were going to test her for VLCAD (she had considerable elevations of C14, C16, and C18 in the acylcarnitine profile in her critical labs) and they needed my signature so they could round up some of her DNA (which I assume they have lying around the lab at this point; blood, CSF, muscle tissue, you name it!) and run the test without having to traumatize her yet again. So between PT and the pediatrician's appointment we went by the hospital to sign the forms. KayTar was in her costume from school and it just so happens the hospital was having a fall festival on the main bridge! KayTar had time to play a few games and it totally made up for missing trick or treating with her class. YAY! After the pediatrician's visit, we spent two hours at Walmart waiting for her prescriptions to be ready. Ugh. I was fighting a cold and by the time we were home for the day, everyone kind of collapsed into bed.
Saturday:
BubTar won his last baseball game of the season, so we blew off martial arts and went to get ice cream with a teammate instead. KayTar skipped dance because of her "uncontrollable coughing" as she said. After that we came home to do a little party prep and give KayTar her feed, while the boys ran to get party supplies from the store. Then we went to a birthday party at Chuck E. Cheese. After that we came home so the kids could put on their costumes and we went to the fall festival. It was fun at first, then KayTar started acting a little off her game. She wanted to lay down on the bleachers instead of play. Then she told me she was going to vomit, so we rushed to find a bathroom. She didn't throw up, but she was fading fast...so I called Josh to meet us at the entrance/exit. He carried her to the car and she started to get limp...EPISODE limp. Uh-oh. On the way to the car, BubTar was so upset about missing the helicopter candy drop. He was all, "This is the worst day of my life." Then we heard the drop was in 5 minutes over the loudspeaker, so I told the boys that KayTar and I would hang out in the car so they could go back for the candy. KayTar was very lethargic and she started vomiting at this point. Good thing we keep one of those blue plastic emesis bags in the car...and an extra bucket. The boys came back 45 minutes later and then we headed home. Once we got home, KayTar perked up...just like she does after an episode...and we dosed her with Zofran and assumed the rest of the night would be business as usual, except she wouldn't be sleeping over at my mom's house like we had planned. We still had a few friends come over for game night, but it did NOT go as planned. KayTar continued to vomit in spite of the Zofran. She spiked a fever. She had a headache. We incorporated a game of KayTar Ping Pong into the festivities for game night, which meant Josh and I took turns dashing upstairs when she needed us. We put her in our bed and I spent most of the night up with her. It was rough.
Sunday:
Nothing went to plan on Sunday. KayTar was still sick and I had my paper to work on. While Josh did party prep, I worked on my paper. When it was party time, KayTar and I went to my mom's so she didn't get the guests sick. While there I worked through a chapter of biopsych in the textbook. When we got home, the boys went out to sell popcorn and I took my quiz...which was over a different chapter than the one I studied! Ack! I still did okay on it, but really hated that I wasted that time studying the wrong material. The boys went to a fall festival and trick or treating while KayTar and I stayed home. She was resting, I was working on my paper and doing laundry. It was kind of a bummer of a Halloween for the girls this year. Though, I did finish my paper!
Over the course of the night, my cold morphed into bronchitis and I woke up to an asthma attack at 4am on Monday. The kids had the day off on Monday, but I still had school (bummer!) so they spent the day with my mom. KayTar seemed to be back to herself, but yesterday she vomited up two of her feeds and I'm not exactly sure why. I think her system isn't quite back to normal from Saturday, but she made it through the school day Tuesday. So did I for that matter, but I'm sure feeling rough. BubTar started vomiting last night, poor kid. Vomiting is such a non-event for KayTar, because it happens so often for her, that I forget what it is like for kids that aren't used to it. Poor BubTar is pretty miserable. Last night, KayTar exclaimed, "It is a rare occasion! I'm not the sick one!" She was a little excited about that, actually. The 'Tars are a bit of a mess at the moment, but hopefully we'll all be over our respective illnesses soon and things will be back to normal around here!
Friday:
I did enjoy a lunch date with Josh, but I did not finish that paper. Literature reviews are like 200% more painful to write than a regular research paper. It definitely didn't get done on Friday. We did go to physical therapy and the pediatrician's appointment (and get a script for oral steroids and a switch from Qvar to Advair in an attempt to curtail all the wheezing), but because of that KayTar missed out on trick or treating with her class. She was a little bummed. However, when we were at PT I got a call from the metabolic clinic saying that they were going to test her for VLCAD (she had considerable elevations of C14, C16, and C18 in the acylcarnitine profile in her critical labs) and they needed my signature so they could round up some of her DNA (which I assume they have lying around the lab at this point; blood, CSF, muscle tissue, you name it!) and run the test without having to traumatize her yet again. So between PT and the pediatrician's appointment we went by the hospital to sign the forms. KayTar was in her costume from school and it just so happens the hospital was having a fall festival on the main bridge! KayTar had time to play a few games and it totally made up for missing trick or treating with her class. YAY! After the pediatrician's visit, we spent two hours at Walmart waiting for her prescriptions to be ready. Ugh. I was fighting a cold and by the time we were home for the day, everyone kind of collapsed into bed.
Saturday:
BubTar won his last baseball game of the season, so we blew off martial arts and went to get ice cream with a teammate instead. KayTar skipped dance because of her "uncontrollable coughing" as she said. After that we came home to do a little party prep and give KayTar her feed, while the boys ran to get party supplies from the store. Then we went to a birthday party at Chuck E. Cheese. After that we came home so the kids could put on their costumes and we went to the fall festival. It was fun at first, then KayTar started acting a little off her game. She wanted to lay down on the bleachers instead of play. Then she told me she was going to vomit, so we rushed to find a bathroom. She didn't throw up, but she was fading fast...so I called Josh to meet us at the entrance/exit. He carried her to the car and she started to get limp...EPISODE limp. Uh-oh. On the way to the car, BubTar was so upset about missing the helicopter candy drop. He was all, "This is the worst day of my life." Then we heard the drop was in 5 minutes over the loudspeaker, so I told the boys that KayTar and I would hang out in the car so they could go back for the candy. KayTar was very lethargic and she started vomiting at this point. Good thing we keep one of those blue plastic emesis bags in the car...and an extra bucket. The boys came back 45 minutes later and then we headed home. Once we got home, KayTar perked up...just like she does after an episode...and we dosed her with Zofran and assumed the rest of the night would be business as usual, except she wouldn't be sleeping over at my mom's house like we had planned. We still had a few friends come over for game night, but it did NOT go as planned. KayTar continued to vomit in spite of the Zofran. She spiked a fever. She had a headache. We incorporated a game of KayTar Ping Pong into the festivities for game night, which meant Josh and I took turns dashing upstairs when she needed us. We put her in our bed and I spent most of the night up with her. It was rough.
Sunday:
Nothing went to plan on Sunday. KayTar was still sick and I had my paper to work on. While Josh did party prep, I worked on my paper. When it was party time, KayTar and I went to my mom's so she didn't get the guests sick. While there I worked through a chapter of biopsych in the textbook. When we got home, the boys went out to sell popcorn and I took my quiz...which was over a different chapter than the one I studied! Ack! I still did okay on it, but really hated that I wasted that time studying the wrong material. The boys went to a fall festival and trick or treating while KayTar and I stayed home. She was resting, I was working on my paper and doing laundry. It was kind of a bummer of a Halloween for the girls this year. Though, I did finish my paper!
Over the course of the night, my cold morphed into bronchitis and I woke up to an asthma attack at 4am on Monday. The kids had the day off on Monday, but I still had school (bummer!) so they spent the day with my mom. KayTar seemed to be back to herself, but yesterday she vomited up two of her feeds and I'm not exactly sure why. I think her system isn't quite back to normal from Saturday, but she made it through the school day Tuesday. So did I for that matter, but I'm sure feeling rough. BubTar started vomiting last night, poor kid. Vomiting is such a non-event for KayTar, because it happens so often for her, that I forget what it is like for kids that aren't used to it. Poor BubTar is pretty miserable. Last night, KayTar exclaimed, "It is a rare occasion! I'm not the sick one!" She was a little excited about that, actually. The 'Tars are a bit of a mess at the moment, but hopefully we'll all be over our respective illnesses soon and things will be back to normal around here!
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