Yesterday, we trudged back to Children's Hospital for Jack's Arginine/Insuline Tolerance test designed to check growth hormone levels. This test stimulates the pituitary gland to produce growth hormones, and if the test proves that Jack does indeed have a growth hormone deficiency, this might be what's impacting his occasional bouts of hypoglycemia. Somehow, it's all connected. If I had an hour and a strong margarita in me, I might be able to make more sense of it all for you. Alas, it's 7:30am, and I'm delirious and barely through my first cuppa joe. So, bear with me, friends.
The test itself is about two and half hours long, during which they take 10 blood samples. They hooked Jack up to an IV to make the dispensing of medicine and blood work go much easier. Jack, who before this point was his happy-go-lucky self, saw the various IV gear and, I think, recognized it from an earlier hospital visit. The incredulous look he threw at the nurse was classic. He's a trooper though and managed to stay seated for the first hour of the test, happily playing with the iPad.
Side note: I would like to personally thank the creative team at Apple for inventing this marvelous piece of technology. Not only is watching our little Jack navigate the iPad faster than an any savvy adult completely fascinating, but also it saves our tired butts during these grueling hospital visits. From the bottom of my heart, I love you, Apple. You rock.
At the top of the second hour, the nurse administered the insulin, which would dramatically drop his blood sugar level. This is the scary bit. Another nurse needed to be in the room to help monitor his behavior, just in case his levels dropped to life-threatening levels. They had a charge of sugar water to surge into his IV, if that happened. His blood sugar dropped to 16 (remember, anything below 70 is low), and the effects of hypoglycemia are sleepiness and irritability, among other things. We needed to keep Jack awake for 7 minutes to get the next blood sample, which was horribly difficult. He made this constant part-whine/part-scream that gutted me, and he desperately wanted to pass out - more than a lush after an all-night bender. So, the nurse gave us ice chips to rub on his body to keep him alert. He started shaking slightly and would fall asleep within seconds until the next ice cube hit his skin. To say Jack hated us at this moment is an understatement.
Needless to say, we survived the ordeal. Fifteen minutes later, Jack's blood sugar rose to normal levels after a cup of juice. And, thank the dear lord, after falling asleep at 6:45pm, he slept through the night last night. Yeah, we were up at 6am, but having a night of uninterrupted sleep is a gift!
We'll have the test results in about two weeks. If he is growth hormone deficient, he'll need hormone injections several times/month, probably through puberty, that we'll learn how to administer here at home. Those will help him physically develop at a typical pace. I'll keep you posted when we get the news!
Showing posts with label parenting. Show all posts
Showing posts with label parenting. Show all posts
Thursday, August 4, 2011
Thursday, July 21, 2011
Autism Party at the Mall
With a high temperature today of 95 and a heat index of 105, even with our a/c quickly working itself into a sweat, our house reached a balmy 87. Jack was whining. Parents were whining. What's a miserable family to do? Why, go to the mall!
We headed up McKnight Road to Ross Park Mall. There is a kid's play area with slides and a carpet representing the Pittsburgh rivers that Jack likes to explore. On a typical visit, he obsessively goes up and down, up and down, up and down one slide or crouches down to examine the large carpeted letters spelling out the three rivers.
It was 7:30pm when we arrived, and it was hopping. There must have been 30 kids running amok and hanging off the play equipment while parents chilled on the sidelines, texting or deciding which store to hit up next. Jack, recognizing the joint, immediately gave us that gold medal smile and started excitedly babbling and gesturing emphatically with his arms.
After removing his sandals (mall policy), we put him on the Ohio River portion of the carpet, and he was off. While screeching and squealing, he managed to run the perimeter of the play area, successfully avoiding contact with any other child's body, or eyes for that matter. It always amazes me to watch him navigate a crowded space, whether crowded with people or toys. I never see him LOOK at what he so expertly avoids. He just knows that there is something to evade. Every once in a while, he'll approach one of the other parents and smile, which we always like to see.
Ten minutes later, Jack realized that there are too many bodies on the slides, making it difficult to do his typical up/down, up/down, up/down routine. So, he started escaping the play area, barefoot, and running toward the outside doors. Bob's after him, and Jack quickly cuts to the right and races, still barefoot, through the mall thoroughfare. And let me tell you something, Jack is quick. I'm hobbling after them, and finally catch Bob stuffing Jack's feet into his shoes near the escalators. A mall cop, riding a Segway, chuckles and says to me, "It looks like you've got your hands full." Yeah, buddy. Sure.
Jack wanders around this area and discovers two leather benches pushed side-by-side with a grooved horizontal pattern that feels much like a gymnastics mat. He shimmies his body up on the couch and starts commando crawling to the opposite end, peering over the side onto the floor. Back and forth, back and forth, back and forth. Once satisfied with that experience, he rubs his hands and arms across the grooves, smiling and babbling to himself. Then, he log rolls across the couch, stopping only to examine the sky lights and beams above. This full-out, unexpected sensory experience happily occupies about 15 minutes of our mall visit.
All of a sudden, he's off and running again. He noticed an Abercrombie and Fitch sign outside the store and examined the letters closely, rubbing the back of his hand on the words to gather more information. The boy loves his alphabet, and the mall is an excellent place to view letters of all sorts.
Then, it was off to the escalators. I needed to run and pick up a few things for a bachelorette party that I'm throwing tomorrow night for two lovely brides-to-be. So, I left the boys to their escalator fun. Bob told me that they must have ridden up/down, up/down, up/down about fifteen times. When I returned, they were on a downward returning trip, Jack smiling ear-to-ear with Dada talking him through the "step off" portion of the experience.
Who knew the mall was this interesting? Capital letters entice the eye! Furniture built for a tumbling routine abounds! Moving stairways to paradise (or the food court) take us to new heights! Kid's playground? Bah! Who needs it? Jack knows where the party truly is.
We headed up McKnight Road to Ross Park Mall. There is a kid's play area with slides and a carpet representing the Pittsburgh rivers that Jack likes to explore. On a typical visit, he obsessively goes up and down, up and down, up and down one slide or crouches down to examine the large carpeted letters spelling out the three rivers.
It was 7:30pm when we arrived, and it was hopping. There must have been 30 kids running amok and hanging off the play equipment while parents chilled on the sidelines, texting or deciding which store to hit up next. Jack, recognizing the joint, immediately gave us that gold medal smile and started excitedly babbling and gesturing emphatically with his arms.
After removing his sandals (mall policy), we put him on the Ohio River portion of the carpet, and he was off. While screeching and squealing, he managed to run the perimeter of the play area, successfully avoiding contact with any other child's body, or eyes for that matter. It always amazes me to watch him navigate a crowded space, whether crowded with people or toys. I never see him LOOK at what he so expertly avoids. He just knows that there is something to evade. Every once in a while, he'll approach one of the other parents and smile, which we always like to see.
Ten minutes later, Jack realized that there are too many bodies on the slides, making it difficult to do his typical up/down, up/down, up/down routine. So, he started escaping the play area, barefoot, and running toward the outside doors. Bob's after him, and Jack quickly cuts to the right and races, still barefoot, through the mall thoroughfare. And let me tell you something, Jack is quick. I'm hobbling after them, and finally catch Bob stuffing Jack's feet into his shoes near the escalators. A mall cop, riding a Segway, chuckles and says to me, "It looks like you've got your hands full." Yeah, buddy. Sure.
Jack wanders around this area and discovers two leather benches pushed side-by-side with a grooved horizontal pattern that feels much like a gymnastics mat. He shimmies his body up on the couch and starts commando crawling to the opposite end, peering over the side onto the floor. Back and forth, back and forth, back and forth. Once satisfied with that experience, he rubs his hands and arms across the grooves, smiling and babbling to himself. Then, he log rolls across the couch, stopping only to examine the sky lights and beams above. This full-out, unexpected sensory experience happily occupies about 15 minutes of our mall visit.
All of a sudden, he's off and running again. He noticed an Abercrombie and Fitch sign outside the store and examined the letters closely, rubbing the back of his hand on the words to gather more information. The boy loves his alphabet, and the mall is an excellent place to view letters of all sorts.
Then, it was off to the escalators. I needed to run and pick up a few things for a bachelorette party that I'm throwing tomorrow night for two lovely brides-to-be. So, I left the boys to their escalator fun. Bob told me that they must have ridden up/down, up/down, up/down about fifteen times. When I returned, they were on a downward returning trip, Jack smiling ear-to-ear with Dada talking him through the "step off" portion of the experience.
Who knew the mall was this interesting? Capital letters entice the eye! Furniture built for a tumbling routine abounds! Moving stairways to paradise (or the food court) take us to new heights! Kid's playground? Bah! Who needs it? Jack knows where the party truly is.
Tuesday, July 19, 2011
Time to Face the Music
Yeah, yeah, yeah...it's been some time.
We're on another whirlwind: summer school, singing, motherdom, weddings, etc.
I guess I'll start with summer school. For monetary reasons alone, I opted to teach an arts curriculum for Pittsburgh Public School's Summer Dreamers Academy, a fancy title for summer school. Aren't they clever? Alison Zapata and I are co-teaching (thank the dear Lord) inner city first and second graders in an unairconditioned building, and it has been an eye-opening, completely draining experience. First of all, the lack of communication between administration and teaching staff is mind-boggling, and secondly, I cannot believe how many 7-year-old gangsta thugs we have in the room. Like father, like son? I don't know...these are the kids that need us the most, and their need for attention manifests in MANY different ways. I'm trying to hone my empathy as a calming tool when things go awry, but it's difficult. I don't think the 95 degree and up temperatures in the school help much either. Oh well...14 more days.
Singing. WOO! Well, Bob asked Dan and I to play a gig at Caribou next Wednesday, the 27th. C'mon down! I think we start around 6:30pm. We're doing our blues/soul set. We're simultaneously prepping for a wedding gig and the cabaret I'm apparently debuting in Westmoreland county in late August. Add to that some soloist work with the Eclectic Laboratory Chamber Orchestra on August 5th, and I suddenly feel like a honest-to-goodness working singer again. And it feels great! It's time for Dan and I to make some dough wailing on voice/guitar because dang, we rock, yo. We just dilly-dally in the marketing, go-get-'em department. The cabaret is coming together s-l-o-w-l-y (I still need to write it), but I'm stoked to have something under my belt that's completely mine. It will all come together because it has to. Yesterday, I mailed my application and dvd audition for the second season of "The Voice," too. Why the heck not? If I've got it, might as well flaunt it. If nothing happens, then it's no skin off our backs - business as usual. But if something does happen...well...let's just say karma owes us big time.
In Jack news, we decided to take him off the gluten/casein free diet for a spell. After eight months, we have not seen any major benefits from this diet. He had sleep issues both on/off the diet, never had any major gastrointestinal problems to begin with and some of his focus improvement might have more to do with age and behavioral therapy. With his hypoglycemia issues, we feel that a healthy, well-fed boy is more important right now. The diet is so restrictive and SO expensive, and it's benefits are still conjecture. Many parents/doctors feel strongly about the benefits or lack there of for children with autism, and most research is inconclusive. So far, it's hard to tell whether there's been any major change by adding gluten and dairy back in the mix. He's thrilled to have goldfish, ice cream and mac-n-cheese again. He's been stimming a little bit more, but he's also going through another waking-up-in-the-middle-of-the-night phase, something that happened regularly even on the diet. When he's exhausted, he tends to stim more, and yesterday, he konked out at 7:15pm. He has two weeks to give his body a chance to adjust, and then, we'll decide. I've read several autism websites that talk about adding digestive enzymes to the child's diet to help them process troublesome foods. Many parents have had much success with their children on the spectrum taking these enzymes while keeping a regular diet. That might be our next step. If there are naysayers out there, disapproving of our decision...bite me. We're doing the best we can. AND he can go back on the GFCF diet at any time.
Other than that, it's wedding and shower time a-go-go. We have five weddings to attend this summer and one friend having a baby. So, every weekend from last week onward holds a new bridal/baby shower, bachelorette party or ceremony. We're a little stressed about money and wanting to represent ourselves gift-wise, but you know, we'll do what we can. Luckily, our friends mostly understand where we're at and what we can handle, but I still want to do something nice for them. I have a few tricks up my sleeve yet.
Well, time to do the dishes and prepare for another sweaty afternoon in the classroom....
We're on another whirlwind: summer school, singing, motherdom, weddings, etc.
I guess I'll start with summer school. For monetary reasons alone, I opted to teach an arts curriculum for Pittsburgh Public School's Summer Dreamers Academy, a fancy title for summer school. Aren't they clever? Alison Zapata and I are co-teaching (thank the dear Lord) inner city first and second graders in an unairconditioned building, and it has been an eye-opening, completely draining experience. First of all, the lack of communication between administration and teaching staff is mind-boggling, and secondly, I cannot believe how many 7-year-old gangsta thugs we have in the room. Like father, like son? I don't know...these are the kids that need us the most, and their need for attention manifests in MANY different ways. I'm trying to hone my empathy as a calming tool when things go awry, but it's difficult. I don't think the 95 degree and up temperatures in the school help much either. Oh well...14 more days.
Singing. WOO! Well, Bob asked Dan and I to play a gig at Caribou next Wednesday, the 27th. C'mon down! I think we start around 6:30pm. We're doing our blues/soul set. We're simultaneously prepping for a wedding gig and the cabaret I'm apparently debuting in Westmoreland county in late August. Add to that some soloist work with the Eclectic Laboratory Chamber Orchestra on August 5th, and I suddenly feel like a honest-to-goodness working singer again. And it feels great! It's time for Dan and I to make some dough wailing on voice/guitar because dang, we rock, yo. We just dilly-dally in the marketing, go-get-'em department. The cabaret is coming together s-l-o-w-l-y (I still need to write it), but I'm stoked to have something under my belt that's completely mine. It will all come together because it has to. Yesterday, I mailed my application and dvd audition for the second season of "The Voice," too. Why the heck not? If I've got it, might as well flaunt it. If nothing happens, then it's no skin off our backs - business as usual. But if something does happen...well...let's just say karma owes us big time.
In Jack news, we decided to take him off the gluten/casein free diet for a spell. After eight months, we have not seen any major benefits from this diet. He had sleep issues both on/off the diet, never had any major gastrointestinal problems to begin with and some of his focus improvement might have more to do with age and behavioral therapy. With his hypoglycemia issues, we feel that a healthy, well-fed boy is more important right now. The diet is so restrictive and SO expensive, and it's benefits are still conjecture. Many parents/doctors feel strongly about the benefits or lack there of for children with autism, and most research is inconclusive. So far, it's hard to tell whether there's been any major change by adding gluten and dairy back in the mix. He's thrilled to have goldfish, ice cream and mac-n-cheese again. He's been stimming a little bit more, but he's also going through another waking-up-in-the-middle-of-the-night phase, something that happened regularly even on the diet. When he's exhausted, he tends to stim more, and yesterday, he konked out at 7:15pm. He has two weeks to give his body a chance to adjust, and then, we'll decide. I've read several autism websites that talk about adding digestive enzymes to the child's diet to help them process troublesome foods. Many parents have had much success with their children on the spectrum taking these enzymes while keeping a regular diet. That might be our next step. If there are naysayers out there, disapproving of our decision...bite me. We're doing the best we can. AND he can go back on the GFCF diet at any time.
Other than that, it's wedding and shower time a-go-go. We have five weddings to attend this summer and one friend having a baby. So, every weekend from last week onward holds a new bridal/baby shower, bachelorette party or ceremony. We're a little stressed about money and wanting to represent ourselves gift-wise, but you know, we'll do what we can. Luckily, our friends mostly understand where we're at and what we can handle, but I still want to do something nice for them. I have a few tricks up my sleeve yet.
Well, time to do the dishes and prepare for another sweaty afternoon in the classroom....
Monday, June 27, 2011
The Hard Reboot
Around 5am, after Bob left for work, I heard the pitter patter of Jack feet scuttle in my direction. We snuggled and continued to snooze until 9am. Jack was content, shoveling french toast and an orange into his mouth and watching "Team Umizoomi" for the umpteenth time. Our speech therapist, a lovely lady named Alison, arrived around 10:15am. All hell broke loose.
Alison sat on the floor and asked Jack to play with her, and Jack lost it - screaming, flailing and throwing himself on floor pillows. Tantrum time a-go-go. I'm sure after the last few days, the last thing he wanted to do was meet the demands of another outsider. He climbed into his swing, muttering and looking in any direction except ours, and eventually quieted down. Alison suggested I put on his favorite music. So, I headed over to our stereo system and attempted to load a little Justin Roberts on the iPod.
No sound. That's funny...it worked just fine the last time. I looked at the screen, and the iPod kept flipping from one song to the next, skipping over the tracks. Okay, this happened before. I decided to give it a hard reboot. Usually, that system restart solves the problem. Instead, I was faced with a big red X.
A big red X? C'mon! What does that mean? According to Apple, this happens sometimes, and it gives a spiel about going into disk mode and restoring the iPod back to factory settings, thus deleting everything saved on it.
This got me thinking. When Bob called and asked for the daily update, I shared this lovely new problem. His response, "You've got to be kidding me. Awesome. That's just awesome. I give up." I said, "I wish there was a way that we could restore our lives back to factory settings." Is there a button somewhere hidden on our bodies? Touch your nose and blink three times maybe? Even better, could we choose a restore point, saved at a particular point in our lives, and start over from there? This led to a nice post-dinner discussion between Bob and I.
Bob's System Restore Point: He wants to return the night before he brought our cat, Sam, home. That little pisser. Literally. I think he feels that Sam triggered our black hole of mad, bad luck. Then, Bob claims that he wouldn't have let me fall down the steps and break my leg. We would have picked a different "new" car (long story). And he wouldn't have burned his ankle with blistering hot coffee today. Fair enough.
Rebecca's System Restore Point: We took Jack to a friend's house for a playdate last summer, prior to his diagnosis. Well, she's a friend of a friend...this was our first time hanging out. It was a complete disaster. Jack cried the entire time. Their little boy, only a few months older than Jack, was precociously verbal and anxious to play with our son. This was the first day that I knew in my heart that something was going on with Jack developmentally. Pair that with this couple being a several tax brackets up from us, living in their $200,000 house and debating about which pool to install in their backyard while we exist paycheck to paycheck in our Sharpsburg rental house and spray our son with a hose for fun. Yeah, that was a great day. Having that choice to make again, I would never pursue that playdate. It still resonates with me and makes me feel like crap.
Okay, here we go...wish me luck! Let the system restoration commence.
Touch my nose. Blink three times.
Nothing.
Press my belly button and jump five times.
Do the hokey pokey and spin myself around.
Ugh. No good.
Maybe a cocktail followed by a good night's rest?
Well, that stinks. Doesn't matter...my guess is that we'd make the same damn decisions the second time around or different decisions that lead us to the same damn place. What matters most, I suppose, is what we do next and how we handle the consequences. New day, new decisions, new problems to solve. Until I find the magic system restore button, we'll settle for a daily system restart and see what happens.
Alison sat on the floor and asked Jack to play with her, and Jack lost it - screaming, flailing and throwing himself on floor pillows. Tantrum time a-go-go. I'm sure after the last few days, the last thing he wanted to do was meet the demands of another outsider. He climbed into his swing, muttering and looking in any direction except ours, and eventually quieted down. Alison suggested I put on his favorite music. So, I headed over to our stereo system and attempted to load a little Justin Roberts on the iPod.
No sound. That's funny...it worked just fine the last time. I looked at the screen, and the iPod kept flipping from one song to the next, skipping over the tracks. Okay, this happened before. I decided to give it a hard reboot. Usually, that system restart solves the problem. Instead, I was faced with a big red X.
A big red X? C'mon! What does that mean? According to Apple, this happens sometimes, and it gives a spiel about going into disk mode and restoring the iPod back to factory settings, thus deleting everything saved on it.
This got me thinking. When Bob called and asked for the daily update, I shared this lovely new problem. His response, "You've got to be kidding me. Awesome. That's just awesome. I give up." I said, "I wish there was a way that we could restore our lives back to factory settings." Is there a button somewhere hidden on our bodies? Touch your nose and blink three times maybe? Even better, could we choose a restore point, saved at a particular point in our lives, and start over from there? This led to a nice post-dinner discussion between Bob and I.
Bob's System Restore Point: He wants to return the night before he brought our cat, Sam, home. That little pisser. Literally. I think he feels that Sam triggered our black hole of mad, bad luck. Then, Bob claims that he wouldn't have let me fall down the steps and break my leg. We would have picked a different "new" car (long story). And he wouldn't have burned his ankle with blistering hot coffee today. Fair enough.
Rebecca's System Restore Point: We took Jack to a friend's house for a playdate last summer, prior to his diagnosis. Well, she's a friend of a friend...this was our first time hanging out. It was a complete disaster. Jack cried the entire time. Their little boy, only a few months older than Jack, was precociously verbal and anxious to play with our son. This was the first day that I knew in my heart that something was going on with Jack developmentally. Pair that with this couple being a several tax brackets up from us, living in their $200,000 house and debating about which pool to install in their backyard while we exist paycheck to paycheck in our Sharpsburg rental house and spray our son with a hose for fun. Yeah, that was a great day. Having that choice to make again, I would never pursue that playdate. It still resonates with me and makes me feel like crap.
Okay, here we go...wish me luck! Let the system restoration commence.
Touch my nose. Blink three times.
Nothing.
Press my belly button and jump five times.
Do the hokey pokey and spin myself around.
Ugh. No good.
Maybe a cocktail followed by a good night's rest?
Well, that stinks. Doesn't matter...my guess is that we'd make the same damn decisions the second time around or different decisions that lead us to the same damn place. What matters most, I suppose, is what we do next and how we handle the consequences. New day, new decisions, new problems to solve. Until I find the magic system restore button, we'll settle for a daily system restart and see what happens.
Sunday, June 26, 2011
Home Again, Home Again...Jiggety Jig?
Three days, two nights at Children's Hospital.
Jack enduring a 24-hour fast.
What seemed like 20,000 toe pricks to test blood sugar.
Lowest blood sugar during the fast: 68.
Probably a $35,000 medical bill heading our way.
Five medical doctors giving us NO input into why our son's blood sugar fell to a critical level on Thursday.
Here we are, home again and exactly where we were last December with no answers. To the doctors' credit, they tried everything to get his levels to fall low enough to run the blood tests needed, but they could not duplicate the conditions that prompted the blood sugar fall: a virus and high fever. Their parting advice to us? Make sure Jack eats three meals a day and three snacks, one before bed. Like we don't do that already! Since his autism diagnosis, we already obsess about every bite that goes into his mouth. One positive they tried to relate to us is that he CAN keep his blood sugar within a healthy range for 24-hours without food. Before discharge, we had this enlightening conversation with the doctor:
doc: Do you have any questions for us?
me: But, doc, this is so bizarre. Why did this happen twice? Do we need to be extra vigilant when he's sick? Why would this happen if he's otherwise not showing signs of hypoglycemia and ate good meals the prior day?
doc: You're right. It is bizarre. Yes, it's a good idea to watch him closely when he's sick. Remember, three meals/three snacks per day.
me: Yeah, thanks.
me (thinking): Douchebag.
There are three blood tests taken last night during a normal sugar level that did not return from the lab before we left, and the endocrinology unit will call us this week with those results. We could not start the battery of tests needed to really get to the bottom of this because his blood sugar never reached that critical level. They also referred us to the Neurology Department for Jack's autism. I'm not sure what that will entail, but it's another route to pursue to maybe find some answers.
Funny thing about the hospital...every person that walks into the room asks you the same questions over and over and over again. The staff obviously does not read the reports taken from the ER, the nurses station, from doctors visiting earlier in the day, or from prior hospital visits. Here's a funny conversation we had with a nurse, who obviously had no idea that Jack had autism or could not verbalize, which was something we told at least ten people prior to this moment, ten people who either wrote or typed this information into a report:
nurse: Hey buddy! How are you?
(Jack stares at her and turns toward Bob's arm)
nurse: Oh, are you being shy? Don't worry, we'll have you talking by the end of the night!
me: Actually, he's nonverbal.
Bob: But if you could get him talking, that would be great.
(Awkward silence)
nurse: Oh...okay. (uneasy giggle) Uh, well, if you need anything, give us a buzz!
Well, I guess we go back to our "normal" now. Time to reclaim the house back from the cats and their stink. Time to get back to work and refocus. Time to shake off the last three days and move forward. We can't help asking, "What next?" We're on edge, for sure. Since November, we've been reluctantly riding a downward spiral of bad news, bad luck and bad juju. If anyone knows a good witchdoctor or voodoo priestess, give me a call. We'll try anything at this point!
Jack enduring a 24-hour fast.
What seemed like 20,000 toe pricks to test blood sugar.
Lowest blood sugar during the fast: 68.
Probably a $35,000 medical bill heading our way.
Five medical doctors giving us NO input into why our son's blood sugar fell to a critical level on Thursday.
Here we are, home again and exactly where we were last December with no answers. To the doctors' credit, they tried everything to get his levels to fall low enough to run the blood tests needed, but they could not duplicate the conditions that prompted the blood sugar fall: a virus and high fever. Their parting advice to us? Make sure Jack eats three meals a day and three snacks, one before bed. Like we don't do that already! Since his autism diagnosis, we already obsess about every bite that goes into his mouth. One positive they tried to relate to us is that he CAN keep his blood sugar within a healthy range for 24-hours without food. Before discharge, we had this enlightening conversation with the doctor:
doc: Do you have any questions for us?
me: But, doc, this is so bizarre. Why did this happen twice? Do we need to be extra vigilant when he's sick? Why would this happen if he's otherwise not showing signs of hypoglycemia and ate good meals the prior day?
doc: You're right. It is bizarre. Yes, it's a good idea to watch him closely when he's sick. Remember, three meals/three snacks per day.
me: Yeah, thanks.
me (thinking): Douchebag.
There are three blood tests taken last night during a normal sugar level that did not return from the lab before we left, and the endocrinology unit will call us this week with those results. We could not start the battery of tests needed to really get to the bottom of this because his blood sugar never reached that critical level. They also referred us to the Neurology Department for Jack's autism. I'm not sure what that will entail, but it's another route to pursue to maybe find some answers.
Funny thing about the hospital...every person that walks into the room asks you the same questions over and over and over again. The staff obviously does not read the reports taken from the ER, the nurses station, from doctors visiting earlier in the day, or from prior hospital visits. Here's a funny conversation we had with a nurse, who obviously had no idea that Jack had autism or could not verbalize, which was something we told at least ten people prior to this moment, ten people who either wrote or typed this information into a report:
nurse: Hey buddy! How are you?
(Jack stares at her and turns toward Bob's arm)
nurse: Oh, are you being shy? Don't worry, we'll have you talking by the end of the night!
me: Actually, he's nonverbal.
Bob: But if you could get him talking, that would be great.
(Awkward silence)
nurse: Oh...okay. (uneasy giggle) Uh, well, if you need anything, give us a buzz!
Well, I guess we go back to our "normal" now. Time to reclaim the house back from the cats and their stink. Time to get back to work and refocus. Time to shake off the last three days and move forward. We can't help asking, "What next?" We're on edge, for sure. Since November, we've been reluctantly riding a downward spiral of bad news, bad luck and bad juju. If anyone knows a good witchdoctor or voodoo priestess, give me a call. We'll try anything at this point!
Wednesday, June 22, 2011
Sleepless in Sharpsburg
It's a familiar scene in our house.
I think I hear a whimper coming from Jack's room.
Silence.
Glancing at the alarm clock briefly to see 2:25am glaring back at me, I drift back to sleep.
Then, minutes later, his feet hit the floor. Little steps pad toward our bedroom. A small head appears in front of my groggy face. I reach out and pull Jack into our bed.
"Bob? Bob? Baby, Jack woke up. BOB??!?"
Snoring.
This happens just about every night.
It goes one of three ways after that:
1) Jack curls up and goes back to sleep, snuggling in our arms. Best case scenario here.
2) Jack stays awake for four hours - happy as a clam. It's party time, ladies and gentlemen!
3) Jack stays awake for four hours - inconsolable and screaming like a banshee.
What happened two nights ago? Yep, you guessed right. Number freakin' three. Bob took first watch and got kicked in the face, punched in the jaw and told off in toddler babble. If there were actual words spewing out of Jack's mouth, I'm sure Quentin Tarentino would blush. Dada was obviously starting to fume. So, Mama thought, "I'll swoop in and save the day with a lullaby and cuddle." Yeah, right.
me: Hey buddy! What's wrong...Mama's here.
J: AAAAH! BADAGA MADAFA! (throws body against his bedroom wall)
me: Oh my goodness. Come here. (starts singing)
J: (blood curdling scream) NO! BABA NAGANA!
Yes, I get three words into some calming James Taylor ditty, and I get slapped in the face. Bob scooped him up and took him downstairs. If we can't exorcise the demon, by golly, maybe The Fresh Beat Band or Blue's Clues can. I still hear the remnants of a scuffle downstairs, followed by a "Fine! Do what you want!" from Bob. I came downstairs the next morning to find Jack passed out on the couch with The Little Einsteins blasting off in their rocket in the background and Bob looking groggy after sleeping on the floor. Now, this is one night. Imagine three nights of this in a row. It happens...A LOT. It gives me a short fuse during daylight hours and causes me to meltdown and feel all sorts of crazy throughout the day. Not good. We do see #2 (Party Jack) the most, and honestly, he's my least favorite. The last thing we want to do is party at 3am, especially when Bob's alarm goes off at 4.
It's exhausting, maddening, infuriating at times, and a complete puzzle. I've read about sleeping problems related to autism on Internet forums, articles and books by this authority or that parent, but there's no clear explanation on why this happens and what can be done. We've bought a weighted blanket, tried diet alterations, temperature and light changes in the room, no naps during the daytime, various bedtime hour trials, bath/no bath, rocking in the swing before going upstairs...he's had an established bedtime routine since infancy.
I have no answers, friends. But this gave me some comfort and a little smile:
http://www.youtube.com/watch?v=SwwtO5viUDE
I think I hear a whimper coming from Jack's room.
Silence.
Glancing at the alarm clock briefly to see 2:25am glaring back at me, I drift back to sleep.
Then, minutes later, his feet hit the floor. Little steps pad toward our bedroom. A small head appears in front of my groggy face. I reach out and pull Jack into our bed.
"Bob? Bob? Baby, Jack woke up. BOB??!?"
Snoring.
This happens just about every night.
It goes one of three ways after that:
1) Jack curls up and goes back to sleep, snuggling in our arms. Best case scenario here.
2) Jack stays awake for four hours - happy as a clam. It's party time, ladies and gentlemen!
3) Jack stays awake for four hours - inconsolable and screaming like a banshee.
What happened two nights ago? Yep, you guessed right. Number freakin' three. Bob took first watch and got kicked in the face, punched in the jaw and told off in toddler babble. If there were actual words spewing out of Jack's mouth, I'm sure Quentin Tarentino would blush. Dada was obviously starting to fume. So, Mama thought, "I'll swoop in and save the day with a lullaby and cuddle." Yeah, right.
me: Hey buddy! What's wrong...Mama's here.
J: AAAAH! BADAGA MADAFA! (throws body against his bedroom wall)
me: Oh my goodness. Come here. (starts singing)
J: (blood curdling scream) NO! BABA NAGANA!
Yes, I get three words into some calming James Taylor ditty, and I get slapped in the face. Bob scooped him up and took him downstairs. If we can't exorcise the demon, by golly, maybe The Fresh Beat Band or Blue's Clues can. I still hear the remnants of a scuffle downstairs, followed by a "Fine! Do what you want!" from Bob. I came downstairs the next morning to find Jack passed out on the couch with The Little Einsteins blasting off in their rocket in the background and Bob looking groggy after sleeping on the floor. Now, this is one night. Imagine three nights of this in a row. It happens...A LOT. It gives me a short fuse during daylight hours and causes me to meltdown and feel all sorts of crazy throughout the day. Not good. We do see #2 (Party Jack) the most, and honestly, he's my least favorite. The last thing we want to do is party at 3am, especially when Bob's alarm goes off at 4.
It's exhausting, maddening, infuriating at times, and a complete puzzle. I've read about sleeping problems related to autism on Internet forums, articles and books by this authority or that parent, but there's no clear explanation on why this happens and what can be done. We've bought a weighted blanket, tried diet alterations, temperature and light changes in the room, no naps during the daytime, various bedtime hour trials, bath/no bath, rocking in the swing before going upstairs...he's had an established bedtime routine since infancy.
I have no answers, friends. But this gave me some comfort and a little smile:
http://www.youtube.com/watch?v=SwwtO5viUDE
Tuesday, June 21, 2011
Forum to Vent
After seven months of unchecked emotions driving my husband (and myself) crazy, I realized that I needed a spot to expunge my worry, to challenge my fears, celebrate our victories and connect with a community. You see, my son, Jack got an autism diagnosis last November. Although some days I suit up in armor and plow through the hours seemingly unscathed, it's the quiet hours when my husband is working and my mind starts wandering that raw, debilitating sadness and anger filters its way through. And I'm exhausted. Something needs to change, or I'm going to lose my marbles.
Hello, my name is Rebecca. Mother of Jack. Wife of Bob. Singer, teacher and spokesmodel for anxiety. I'm a list maker...a girl attached to a calendar...someone who likes to have a plan and expects particular, rational results. Don't get me wrong, I enjoy the unexpected on occasion but not when it comes downs to the Big F - my family. Now, we walk aimlessly through a fog with no map, no flashlight, no tour guide...only our intuition - sorting through uncertain behavioral and biomedical therapies, waiting for uncertain results, heading toward an uncertain future. Nothing is certain except our love for our beautiful, happy son.
Cute, right? He's an easy-going dude who loves books (even if he does bite off the corners), music, water play, technology and general tom foolery. He's overwhelmed by sensory processing issues and needs a lot of vestibular, tactile, oral, auditory and visual stimulation. His perfect day would be running around the house with his tiny electric guitar, spinning in his living room swing, visiting the local splash park, reading "The Cat in the Hat" eighty times and eating sweet potato fries for every meal. There are many things about him we "get" now that we didn't know pre-diagnosis, but man, what would it be like to step behind those eyes and run with those little legs to experience, first hand, how he unravels the world.
So, here it is. The beginning of our story. A journey through bumpy terrain. I'm hoping that this forum will provide some solace to our family and others traveling down a similar road.
Hello, my name is Rebecca. Mother of Jack. Wife of Bob. Singer, teacher and spokesmodel for anxiety. I'm a list maker...a girl attached to a calendar...someone who likes to have a plan and expects particular, rational results. Don't get me wrong, I enjoy the unexpected on occasion but not when it comes downs to the Big F - my family. Now, we walk aimlessly through a fog with no map, no flashlight, no tour guide...only our intuition - sorting through uncertain behavioral and biomedical therapies, waiting for uncertain results, heading toward an uncertain future. Nothing is certain except our love for our beautiful, happy son.
Trust me, folks, he is gorgeous. And happy. And smart. Here he is now...
Cute, right? He's an easy-going dude who loves books (even if he does bite off the corners), music, water play, technology and general tom foolery. He's overwhelmed by sensory processing issues and needs a lot of vestibular, tactile, oral, auditory and visual stimulation. His perfect day would be running around the house with his tiny electric guitar, spinning in his living room swing, visiting the local splash park, reading "The Cat in the Hat" eighty times and eating sweet potato fries for every meal. There are many things about him we "get" now that we didn't know pre-diagnosis, but man, what would it be like to step behind those eyes and run with those little legs to experience, first hand, how he unravels the world.So, here it is. The beginning of our story. A journey through bumpy terrain. I'm hoping that this forum will provide some solace to our family and others traveling down a similar road.
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