Today, we were talking about how the JDRF walk was coming up, and how it was a good time to share with people what it is like to have diabetes. He really seemed to be blown away when he realized that only people with diabetes know what it feels like.
He immediately told me he needed to make a movie about it and he wanted me to put it on the computer so people would know. I pressed record, and here it is:
I am SO proud of this little guy.
So who saw my pile of "low kits" going to kindergarten on Friday behind Liam's head? :)
Tuesday, August 16, 2011
Monday, August 15, 2011
Us and them.
I spent most of yesterday putting together the plethora of cheat sheets for Liam's new teachers and school staff. And while I was standing in the office supply store, trimming and laminating, I watched gobs of kids come in and out with their parents. Buying their backpacks and school supplies. And it hit me so hard it took my breath away.
I looked down at the pile of guides in front of me, and the words popped out at me. Unconscious. Glucagon. Seizures. Ketones. Juice boxes. It seemed so over the top detailed, and at the same time I know that it has to be. My kid isn't safe at school. He's not even safe sitting in a room of other kids learning if people haven't been trained to KEEP HIM ALIVE.
I resumed trimming our laminated ID badges as I watched the people walk in and out. And it was just one of those moments when it was so obvious how different we are. I watched other kids pick out crayons and scissors while I created pile after pile of documents, each getting more and more ridiculous. A general care document with margins set at 0.3 of an inch and so much writing it makes your head spin. How to operate his insulin pump. His Dexcom Continuous Glucose Monitor. My kid LITERALLY comes with instruction manuals. It was just crystal clear. That is how they prepare for school, and this is how we prepare for school. Us. Them.
Hmmm. I listen to other people worry about whether their kids will have friends. Whether they still need the nap they aren't going to be able to take anymore. Whether they will like the lunches they send with them. And I can relate. I worry about those things too. And I try not to compare. As my wise husband often points out- we used to be them. Their stress load is increased right now too. This might be more than they are used to. More stress than you had yesterday is more stress than you had yesterday. But still. Us. Them.
And I start to feel alone. But then I look down at the pile in front of me. The ID badges Heidi made. The Diabetes ID sheet, that once upon a time, belonged to Hallie. It may have Liam's picture on it, and have been modified as we've gone along, but under document properties, there is her name. I think of all the emails I have exchanged with moms who GET it. I think of the pile of example 504's other moms have shared with me that are printed out at home. And these are made for real kids. They aren't just examples on some website. There is LOVE in these documents. And then I feel lucky, to have met so many other people who do get it.
I walk up to pay feeling stressed. This is a lot of work. I don't know if it was that all of my documents I was printing completely lost their formatting since the store's computers didn't recognize the font they were in. That all of my images were piled up in corners and headings were cut off and 1 page documents were now 3 page documents. Or that I had to pay to use their computer to fix them. That they didn't line up right on the printer. If it was just a premonition that I was going to go home and realized I had paid to laminate 30 ID badge cheat sheets that said to "rub the rube" of glucose gel into his gums. (And that is SO going to bother me all year). If it was that I still have a 504 to write and a meeting hanging over my head on friday.
I let out a big sigh as the cashier checked me out. She smiled, and said "One less thing!" One less thing. I like that. Yes, still more to do, but for now, one less thing.
I looked down at the pile of guides in front of me, and the words popped out at me. Unconscious. Glucagon. Seizures. Ketones. Juice boxes. It seemed so over the top detailed, and at the same time I know that it has to be. My kid isn't safe at school. He's not even safe sitting in a room of other kids learning if people haven't been trained to KEEP HIM ALIVE.
I resumed trimming our laminated ID badges as I watched the people walk in and out. And it was just one of those moments when it was so obvious how different we are. I watched other kids pick out crayons and scissors while I created pile after pile of documents, each getting more and more ridiculous. A general care document with margins set at 0.3 of an inch and so much writing it makes your head spin. How to operate his insulin pump. His Dexcom Continuous Glucose Monitor. My kid LITERALLY comes with instruction manuals. It was just crystal clear. That is how they prepare for school, and this is how we prepare for school. Us. Them.
Hmmm. I listen to other people worry about whether their kids will have friends. Whether they still need the nap they aren't going to be able to take anymore. Whether they will like the lunches they send with them. And I can relate. I worry about those things too. And I try not to compare. As my wise husband often points out- we used to be them. Their stress load is increased right now too. This might be more than they are used to. More stress than you had yesterday is more stress than you had yesterday. But still. Us. Them.
And I start to feel alone. But then I look down at the pile in front of me. The ID badges Heidi made. The Diabetes ID sheet, that once upon a time, belonged to Hallie. It may have Liam's picture on it, and have been modified as we've gone along, but under document properties, there is her name. I think of all the emails I have exchanged with moms who GET it. I think of the pile of example 504's other moms have shared with me that are printed out at home. And these are made for real kids. They aren't just examples on some website. There is LOVE in these documents. And then I feel lucky, to have met so many other people who do get it.
I walk up to pay feeling stressed. This is a lot of work. I don't know if it was that all of my documents I was printing completely lost their formatting since the store's computers didn't recognize the font they were in. That all of my images were piled up in corners and headings were cut off and 1 page documents were now 3 page documents. Or that I had to pay to use their computer to fix them. That they didn't line up right on the printer. If it was just a premonition that I was going to go home and realized I had paid to laminate 30 ID badge cheat sheets that said to "rub the rube" of glucose gel into his gums. (And that is SO going to bother me all year). If it was that I still have a 504 to write and a meeting hanging over my head on friday.
I let out a big sigh as the cashier checked me out. She smiled, and said "One less thing!" One less thing. I like that. Yes, still more to do, but for now, one less thing.
Monday, August 8, 2011
Another paranoid (but more specific) school question
So...
We switched over to the school schedule today to get ready for kindergarten in TWO WEEKS. He's been getting up at 7:30 and eating around 8, so I wanted some time to figure things out since he will be getting up at 6:30 and eating at 7. Breakfast has always been pretty tricky for us, but we've been having some consistent and satisfying results over the last couple months, so I wanted to make sure that a schedule change wouldn't affect that. (HA! HA HA!).
So he spikes up to freaking 384, double arrows up. Out the window goes the plan for morning snack- which he usually needs to keep him from crashing post breakfast (just no other way around it). Lunch was supposed to be at 11, but since he got his correction at 9:30, two hours after breakfast (did I say breakfast was supposed to be at 7? Yeah, he was still in bed. Oops.) he wasn't ready to eat lunch until closer to 11:30, because he was still uncomfortably far above target.
So the question is: what happens if it is lunch time at school, and he's high? Like, too high to let him eat high?
At home, we have the luxury of waiting until he comes down. I have the luxury of substituting low or no carb options until he's in range. At school, 30 minutes later means lunch is over. At school, lunch is whatever is already in his lunchbox.
In preschool, we didn't have lunch, but if he was too high at snack time, we'd give him the option of:
We switched over to the school schedule today to get ready for kindergarten in TWO WEEKS. He's been getting up at 7:30 and eating around 8, so I wanted some time to figure things out since he will be getting up at 6:30 and eating at 7. Breakfast has always been pretty tricky for us, but we've been having some consistent and satisfying results over the last couple months, so I wanted to make sure that a schedule change wouldn't affect that. (HA! HA HA!).
So he spikes up to freaking 384, double arrows up. Out the window goes the plan for morning snack- which he usually needs to keep him from crashing post breakfast (just no other way around it). Lunch was supposed to be at 11, but since he got his correction at 9:30, two hours after breakfast (did I say breakfast was supposed to be at 7? Yeah, he was still in bed. Oops.) he wasn't ready to eat lunch until closer to 11:30, because he was still uncomfortably far above target.
So the question is: what happens if it is lunch time at school, and he's high? Like, too high to let him eat high?
At home, we have the luxury of waiting until he comes down. I have the luxury of substituting low or no carb options until he's in range. At school, 30 minutes later means lunch is over. At school, lunch is whatever is already in his lunchbox.
In preschool, we didn't have lunch, but if he was too high at snack time, we'd give him the option of:
a) Hunt's Sugar Free "Snack Pack" (which means Jell-o)
I do not love this option for many reasons, first of all being that I firmly (ha ha) believe that jello-like products need to be cold. There is something scientifically confusing about how this does NOT have to be refrigerated. Which at pre-school was essential, since they would not allow us to use their refrigerator due to licensing restrictions. That isn't the kind of thing we'd normally have a problem with. Just ask my sweet five year old boy who almost spit out his Juicy Juice when he was low last week because it was COLD!! However, that did rule out meat, cheese, raw veggies... so there went our usual arsenal of low carb stuff.
Secondly, because I really hate to give Liam artificial sweeteners (check) and artificial dyes (unless that stuff is red from CHERRIES- no- check). I figure it sucks enough when he has to watch his classmates all eat the same carb loaded snack while he gets something else, so when he said he liked it, I decided to just call it a compromise.
b) Mt. Olive Pickle Pak
No brainer. Tiny, cute carb-free pickles individually packed and sealed so they don't have to be refrigerated. Now, I am totally repulsed by pickles and my husband is a strict Claussen-from-the-refrigerated-section-only SNOB, but these are so convenient that we are going to put our parental issues aside and let the kid eat them.
c) Jerky
We were getting desperate. We won't talk about the bag of fried pork rinds that made their way into my house. As a former vegetarian, the jerky offends me enough.
All is well and good with those, but a lunch they do not make.
We do have a Dexcom that we can monitor to make sure he's close to range as we come in to lunch, but remember he has to eat a snack two hours after breakfast to prevent a crash from the tail on his breakfast bolus. So if breakfast is at 6:45, snack is at 8:45, and lunch is just over two hours later at 11, we don't have much time to see where he is going to land before lunch. It makes me nervous.
How are we supposed to handle this? Any ideas?
Friday, August 5, 2011
Retail Therapy: D-Style
So here it is. Just a few things I've been accumulating over the past few months in the name of diabetes and back to school preparation. Behold:
1. A diabetes bag: The Dr. Russell Journeyer
We had previously had this smallish messenger bag that we thought would be easier to carry and gender neutral, but it was way too big for Liam to carry at 4, and it was huge in my purse, and my husband usually just took what he wanted out of it when we went places. Let me disclose: I like to be prepared, so this is more than a strips and meter basic bag.
Next was the camo zippered case that we got when Liam was diagnosed. It was a good size for us, but I threw away the strap when we got home thinking we'd never use it, and the problem was more the inside. There was ONE lonely elastic strappy thing in there. we wedged our glucagon under it, but the rest of the "stuff" was just loose. I liked that the sides were more on the firm side, so that when I had to squat down in the middle of the grocery store/movie theater/public bathroom/airplane with a screaming/crying/grabbing newborn/infant/toddler strapped into a front carrier/on my lap/etc, there was a surface to work on. One of early cases was very floppy and the whole thing would just splay open and stuff was rolling everywhere. (Ever notice?: Test strip container: round. Lancet: round...) I'm just not coordinated enough and suddenly everything is all over the floor. Anyhow. So I wanted something firm.
But I also wanted something with places for all of the things. It's probably not just me, but sometimes the d-bag is closed but not zipped up, and then when you pick it up... a mess.
So I researched and found this bad boy. It's not exactly beautiful, but it isn't awful and it is supremely functional. Before I go all detail crazy and tell you why I love it let me take a second to share something else with you, lest you have a Houston moment and lose the things you need most.
See that shiny little thing hanging off the upper left hand corner of the bag? Funny story. So we were leaving a Walmart, and my husband (yep, totally his idea) saw one of those machines that will engrave a dog tag for you for about 5 bucks and decided it would be perfect to make a tag for his bag. It has Liam's name, "Diabetes supply kit" and our phone numbers with a desperate plea to return it to us. We've had it for nearly 2 years, and the thing is durable. Smart guy, huh?
Anyhow. The bag!
1. A diabetes bag: The Dr. Russell Journeyer
We had previously had this smallish messenger bag that we thought would be easier to carry and gender neutral, but it was way too big for Liam to carry at 4, and it was huge in my purse, and my husband usually just took what he wanted out of it when we went places. Let me disclose: I like to be prepared, so this is more than a strips and meter basic bag.
Next was the camo zippered case that we got when Liam was diagnosed. It was a good size for us, but I threw away the strap when we got home thinking we'd never use it, and the problem was more the inside. There was ONE lonely elastic strappy thing in there. we wedged our glucagon under it, but the rest of the "stuff" was just loose. I liked that the sides were more on the firm side, so that when I had to squat down in the middle of the grocery store/movie theater/public bathroom/airplane with a screaming/crying/grabbing newborn/infant/toddler strapped into a front carrier/on my lap/etc, there was a surface to work on. One of early cases was very floppy and the whole thing would just splay open and stuff was rolling everywhere. (Ever notice?: Test strip container: round. Lancet: round...) I'm just not coordinated enough and suddenly everything is all over the floor. Anyhow. So I wanted something firm.
But I also wanted something with places for all of the things. It's probably not just me, but sometimes the d-bag is closed but not zipped up, and then when you pick it up... a mess.
See that shiny little thing hanging off the upper left hand corner of the bag? Funny story. So we were leaving a Walmart, and my husband (yep, totally his idea) saw one of those machines that will engrave a dog tag for you for about 5 bucks and decided it would be perfect to make a tag for his bag. It has Liam's name, "Diabetes supply kit" and our phone numbers with a desperate plea to return it to us. We've had it for nearly 2 years, and the thing is durable. Smart guy, huh?
Anyhow. The bag!
So on the left side, there is a loop for a small container of glucose tabs. Two secure velcro pouches (mesh) that we use for lancets, a Zofran tablet, batteries for the PDM, quarters for a snack emergency. Underneath is a zippered pouch we use to carry extra tape and tegaderm for pods and sensors that are losing their grip on life. Above, there is a pen loop, a clear ID badge area, and two wide pockets we use to carry a set of cheat sheets.
The middle has a removable bag that is made of heavy duty mesh. We carry an extra pod, a Juicy Juice box, Glucagon, blood ketone meter and strips. Underneath the mesh bag (along the spine) is a long stip of heavy duty velcro that attaches to a 7 day pill case. My five year old doesn't take a lot of pills, but I had originally planned to slap some velcro on the glucagon and put it there. It fits great in the bag, and I am lazy, so I haven't done it yet, but it is very similar in size.
This is the other side. Along the top there are several loops for test strips and insulin, and behind them is a pocket that fits a small gel pack to keep them cool. There is a perfect spot for our favorite lancing device below, and two large loops that I use for alcohol swabs and our Omnipod PDM. There is also another zippered mesh pocket below.
The thing is a beast. I can pick it up and shake it and nothing comes out. It is very well made, comes with an adjustable strap, and is smaller than a lunchbox. Check the site for dimensions. We got it because we figured it would be good to carry at school, it fits easily in my purse, and it's just pretty awesome. I'm in the market for a patch or something to spruce the front up, but I am happy to have a plain bag because it is so heavy duty and well made. We have been very happy with it.
2. We bought this:
So that when he:
Does this:
We don't do this:
We had been shopping for a waterproof phone case since we got the Omnipod- just to have around for the PDM, and while I've seen a lot of cool ones on Amazon, it took deciding on Saturday night that we were going to go to the waterslides on Sunday morning to motivate me to do it. By then, shipping one to me was out, so I drove 30 minutes to the closest place that had one Sunday morning, and we made it to the waterpark by 11. We used it to hold his Dexcom receiver, which was in his Tallygear belt. (LOVE).
I was really nervous, but we put it inside an extra ziploc bag inside, which turned out out be unnecessary. He wore it all day while he swam and slide and ran around in the water, and not a drop got through it. We avoided the lows we ALWAYS get while swimming, and we had some peace of mind.
3. We bought these labels:
I was looking for some to use for school anyhow, and I chose this site because in addition to sticking onto cups and clothes- no ironing needed- and having a great selection of colors/fonts/shapes they also make a specific Medical Alert label that isn't allergy specific. I couldn't find that anywhere else. The one shown above on the back of his Omnipod PDM is part of the regular school package- I just opted to list the diabetes on this style to label diabetes related things. The medical alert one has a large band through the middle that says "medical alert" and has room for instructions for care.
4. Laminating sheets. Awesome.
Just tilt your head a little to the side there... perfect.
Why yes, I am a nerd. I have used these for Liam's cheat sheets and sheets for teachers the last two school years, and LOVE them. They are super easy to use, require no machine, and are even more firm than normally laminated sheets in my opinion. They come in 8 x 11, 3 x 5, 4x6, and 5 x 7. They have held up great for us on instructions given to teachers, etc. They come 10 to a package, and I found these at Target. Again: LOVE.
Also: say hello to Mr. Dinosaur that Liam drew. Hi, dinosaur! I seriously thought he was lying about drawing it. It seems very detailed for a 5 year old, but alas, it is his. (Totally bragging.)
5.
These are from Target, and are by the Crystal Light to go boxes. We avoid artificial sweeteners wherever possible, but these prove to be pretty awesome when Liam has ketones and I really want him to drink something. He loves water, but when I need to really motivate him, these do the trick. The thing I really love about these is that while they are minimally carb-y (somewhere under 4 a package, but I lost the box... oops!) they are made with Stevia, which I would rather use that some of the alternatives. The apple pear flavor is a big hit at our house. Also in this category: Hansen's Fruit Stix, which are harder to find, but still awesome.
6. Lance 100 calorie packs of Mini Peanut butter and Mini Cheese crackers.
Both come in bags of about 13 carbs, are trans fat, preservative and high fructose corn syrup free, and are just about 1 carb per cracker sandwich, which has solved my great dilemma of what to use to make up the carbs Liam doesn't finish at lunch. Easy to count, and pretty darn good. Just sayin.'
So that concludes my Very Long List of things I like, diabetes style.
Edited to add: No disclosure necessary. I bought all this stuff because I like it and I use it and nobody sent me anything or gave me anything, because who am I kidding, I blog kind of erratically.
Wednesday, August 3, 2011
Preparing for Kindergarten (in my own way)
So you know how I asked you all about kindergarten and diabetes back in.... um, APRIL!!!?? Well, you would probably assume that since I was so far ahead of the game, I have it all wrapped up and ready to go for school in 2 1/2 weeks, right?
But in traditional Jessica fashion, I just asked really early so I could agonize and stress about all the details for the longest period of time humanly possible. It's just how I roll. I'm a planner. And a worrier. And have come to generally regard most of the people who we have interacted with since diagnosis- excluding those initiated with the big D already- to be pretty damn clueless about what it means.
Serious tangent:
Not that I can really complain, because until Liam was diagnosed, my "official" bank of diabetes knowledge was The Babysitters Club books I read in elementary school, because one of the characters had Type 1. Yup. Now hold up real quick: if you have not read them and are considering letting a d-kid read them thinking they will be all inspirational and the like- they aren't. The character, Stacey, doesn't get to eat sweets and sneaks them and lies about her diabetes and gets hospitalized. Also, they make her parents out to be really strict and kind of a bummer. And we d-parents don't need any help being less cool. I mean, we carry calculators, right?
Anyhow. My point was, I am on a mission to nail down this plan for school and the 504 plan and all of the related logistics. It doesn't help the matter that I have never had a kid in elementary school and I don't know the staff well (although first impressions are looking GOOD).
And while I do have 5 open Microsoft Word documents pertaining to all the planning, as well as a pile of 504 examples and laws and piles of juice boxes and glucose tablets, I am not quite there.
I'm a bit of a procrastinator. Or so I've been told. I just like to think I work REALLY well under pressure.
So what have I been doing since April, since I have clearly not been writing a 504 plan?
Shopping. It's retail therapy. And it's totally related.
Heck, enough people have shared 504's and all that- how about I just tell you what I've been buying. Tomorrow.
But in traditional Jessica fashion, I just asked really early so I could agonize and stress about all the details for the longest period of time humanly possible. It's just how I roll. I'm a planner. And a worrier. And have come to generally regard most of the people who we have interacted with since diagnosis- excluding those initiated with the big D already- to be pretty damn clueless about what it means.
Serious tangent:
Not that I can really complain, because until Liam was diagnosed, my "official" bank of diabetes knowledge was The Babysitters Club books I read in elementary school, because one of the characters had Type 1. Yup. Now hold up real quick: if you have not read them and are considering letting a d-kid read them thinking they will be all inspirational and the like- they aren't. The character, Stacey, doesn't get to eat sweets and sneaks them and lies about her diabetes and gets hospitalized. Also, they make her parents out to be really strict and kind of a bummer. And we d-parents don't need any help being less cool. I mean, we carry calculators, right?
Anyhow. My point was, I am on a mission to nail down this plan for school and the 504 plan and all of the related logistics. It doesn't help the matter that I have never had a kid in elementary school and I don't know the staff well (although first impressions are looking GOOD).
And while I do have 5 open Microsoft Word documents pertaining to all the planning, as well as a pile of 504 examples and laws and piles of juice boxes and glucose tablets, I am not quite there.
I'm a bit of a procrastinator. Or so I've been told. I just like to think I work REALLY well under pressure.
So what have I been doing since April, since I have clearly not been writing a 504 plan?
Shopping. It's retail therapy. And it's totally related.
Heck, enough people have shared 504's and all that- how about I just tell you what I've been buying. Tomorrow.
Saturday, July 30, 2011
Diabetes in da house
Tonight, I had a clear view of exactly how much diabetes has affected our house.
Enter scene:
Our kitchen table.
We've just returned from a movie where I sat next to my post-chicken nugget and french fry (ugghhh) dining, M&M coveting 5 year old, laughing it up at the Smurf movie. I had Dexcom in one hand and his OmniPod PDM in the other, watching him shoot from a steady 140 into the ugly 200's while I battled it out with the insulin trying to get him close enough to range that he could actually eat a few M&M's DURING the movie instead of after it.
He's tanking, fast and furious, and is now double fisting Juicy Juices to slow down the drop. (Don't you just HATE estimating carb counts when you eat out at new places?) We're reading two books we bought to read to his kindergarten class this fall, Lara Takes Charge and Taking Diabetes to School.
(Side note: I'm personally leaning towards using Lara Takes Charge, since I'm finding the other one a bit complicated for five year olds, in addition to making pumping sound like a negative thing. I also had a bit of a bone to pick with the wording in the first page or so- something about the pancreas not making enough insulin any more. It just seemed kind of confusing and more like Type 2...)
Anyhow, Liam is coming up nicely, and enjoys Lara Takes Charge. Onto book number two. I hit the first page of Taking Diabetes to School and Liam interrupts me to say "Hey Mom? I thought my pancreas doesn't make ANY insulin, but you just read that it doesn't make enough." Right. My five year old knows WAY too much.
About this time, Peyton, my precocious just-turned-two year old interrupts. She's had enough of not being the center of attention during the low. She starts demanding "Mommy, check my bingers!" as I pull out the meter to re-check Liam's BG. I explain that I need to test Liam now, but she's not having it. "Mommy, I'm LOW. I got 'betes!" Little one scores a juice box, back to the story.
Just another night at our house.
Enter scene:
Our kitchen table.
We've just returned from a movie where I sat next to my post-chicken nugget and french fry (ugghhh) dining, M&M coveting 5 year old, laughing it up at the Smurf movie. I had Dexcom in one hand and his OmniPod PDM in the other, watching him shoot from a steady 140 into the ugly 200's while I battled it out with the insulin trying to get him close enough to range that he could actually eat a few M&M's DURING the movie instead of after it.
He's tanking, fast and furious, and is now double fisting Juicy Juices to slow down the drop. (Don't you just HATE estimating carb counts when you eat out at new places?) We're reading two books we bought to read to his kindergarten class this fall, Lara Takes Charge and Taking Diabetes to School.
(Side note: I'm personally leaning towards using Lara Takes Charge, since I'm finding the other one a bit complicated for five year olds, in addition to making pumping sound like a negative thing. I also had a bit of a bone to pick with the wording in the first page or so- something about the pancreas not making enough insulin any more. It just seemed kind of confusing and more like Type 2...)
Anyhow, Liam is coming up nicely, and enjoys Lara Takes Charge. Onto book number two. I hit the first page of Taking Diabetes to School and Liam interrupts me to say "Hey Mom? I thought my pancreas doesn't make ANY insulin, but you just read that it doesn't make enough." Right. My five year old knows WAY too much.
About this time, Peyton, my precocious just-turned-two year old interrupts. She's had enough of not being the center of attention during the low. She starts demanding "Mommy, check my bingers!" as I pull out the meter to re-check Liam's BG. I explain that I need to test Liam now, but she's not having it. "Mommy, I'm LOW. I got 'betes!" Little one scores a juice box, back to the story.
Just another night at our house.
Saturday, July 23, 2011
Confessions of a bad pancreas
It's been quiet around here, no?
Things have been... going. Well, I thought they were. We were seeing a lot of in range numbers. Definitely some out from left field from time to time. Assuming things in left field start with a 3 and have more than 2 numbers.
I'm just going to say it. At Liam's last endo appointment, his a1c was UP. Not down, not even steady but UP. And before you start patting me on the back and telling me that we all have fluctuations and it's not my fault, let me also add: Liam's last a1c was awful. Six months ago we were at 7.4 with plans to go a little lower. Then it was January and February and March and Liam was sick A LOT. He was hospitalized twice with "reactive airway disease" which is almost exactly like asthma but is not called asthma. He had cold after cold, and two of them rapidly turned from a stuffed up nose into gasping for breath and wheezing and his chest sucking in when he was breathing. There were breathing treatments, there were steroids, and there was a WHOLE LOT of big numbers. So when I found his a1c was 8.4 in March, I kind of knew why. He only went to school 2 days in February. It was that bad.
So when I walked into this last appointment after seeing months of numbers I was happy with and a meter average of 170 (and we check about every 3 hours if not more often), I was walking in with a number in my mind. I figured we had to at least be back down to 7.5 after he hadn't been sick in months. I had my "Me? I won the Oscar?" face ready for when the doctor announced the news, thinking it might be even lower... so when he said 8.5, I about threw up. It was not pretty.
Our doctor knows we frequently check Liam, and use a Dexcom CGM all the time, in addition to his pump. I am on top of this stuff. We cruise along and when something funny comes up with numbers over a few days, I make changes. I am a woman of action. We pre-bolus. We are aggressive with highs. We balance the proportion of fat and protein in his diet. His verdict: We are working way too hard for an a1c of 8.5.
I agree. He thinks we've made a lot of changes recently. And aside from our schedule being a bit off since about 7 weeks of the last three months were at 3 different camps with different schedules, not to mention about 10 days in CA on a different time zone schedule, we couldn't come up with much more we could do then to get him on a strict schedule. So if Liam's a1c isn't down in another 3 months, he wants us to seriously think about going back to shots. He admits himself that it isn't going to give us optimal control, but it will remove a lot of variables. (Insert second "about to throw up" here).
I don't want that. I want optimal control. I want my five year old to spend the least amount of time possible exposing his body to high blood sugar and the effects it may eventually have on him. I don't care how hard I have to work to make that happen. Being diagnosed at 3, I know he will spend most of his life dealing with this. Not optimal is not enough.
To make matters worse, he had lost a pound. He hasn't gained any weight at all since last fall. The doctor thinks it's because his blood sugar is spending too much time high. (celiac panel has been normal). While I agree blood sugar may be part of it, I also know (now) that he needs to be eating at least 1400 calories a day for his activity level. (High. Way high.) He was eating around 1000 on a good day. It's not that I starve him. But when your kid asks for broccoli every single day and eats a lot of fruit and vegetables, they get full on less calories. Hello, fiber. So now, we don't just count carbs. We count CALORIES too. You don't even want to see my mealtime notes. I'm just relieved I'm not mixing the two up.
We've tried supplementing with Kid Essentials shakes (270 calories, I believe) but find those spike him like crazy. We've had to bolus him for double the amount of carbs to bring him back into range. Even then, not ideal. But neither is loading his plate up with extra butter and cheese. I'm really not sure what to do.
We tightened up his ranges for his goals and lowered the level we correct at on his pump hoping that will help, but to kick off our new battle against the a1c, he gets a cold. One of the awesome ones that requires breathing treatments. More highs. (Insert sigh).
I'm kind of suspicious it had something to do with our switch to Apidra right after his last hospitalization in March, but his doctor doesn't want us to switch back to Novolog just yet- he says they are all clinically the same in his experience (including his own, since he also has Type 1). While I like that his Dexcom graph shows more rolling hills and less spiky mountainous lines, I'm not sure if it's the best for him. I can't quite remember how long it took him to come down from the 200's or above on Novolog now, but with the Apidra, it doesn't start moving until about 2 to 2 1/2 hours for Liam. I know I noticed it, so the Novolog must not have taken that long. It could explain more time spent high when we do get the "left field" numbers, but who knows if it's just me or something else entirely.
So, that's my confession.
When it gets hard, it's my tendency to turn inward. I have a bit of a strong-woman complex and I can't seem to accept help from anyone. I started this post two weeks ago and then walked away from it. Such is the story for most of the last several months of very little posting. It isn't easy for me to say these things. But I miss the DOC. I'm feeling alone, and it's my fault. I know I'm not. So here it is.
Things have been... going. Well, I thought they were. We were seeing a lot of in range numbers. Definitely some out from left field from time to time. Assuming things in left field start with a 3 and have more than 2 numbers.
I'm just going to say it. At Liam's last endo appointment, his a1c was UP. Not down, not even steady but UP. And before you start patting me on the back and telling me that we all have fluctuations and it's not my fault, let me also add: Liam's last a1c was awful. Six months ago we were at 7.4 with plans to go a little lower. Then it was January and February and March and Liam was sick A LOT. He was hospitalized twice with "reactive airway disease" which is almost exactly like asthma but is not called asthma. He had cold after cold, and two of them rapidly turned from a stuffed up nose into gasping for breath and wheezing and his chest sucking in when he was breathing. There were breathing treatments, there were steroids, and there was a WHOLE LOT of big numbers. So when I found his a1c was 8.4 in March, I kind of knew why. He only went to school 2 days in February. It was that bad.
So when I walked into this last appointment after seeing months of numbers I was happy with and a meter average of 170 (and we check about every 3 hours if not more often), I was walking in with a number in my mind. I figured we had to at least be back down to 7.5 after he hadn't been sick in months. I had my "Me? I won the Oscar?" face ready for when the doctor announced the news, thinking it might be even lower... so when he said 8.5, I about threw up. It was not pretty.
Our doctor knows we frequently check Liam, and use a Dexcom CGM all the time, in addition to his pump. I am on top of this stuff. We cruise along and when something funny comes up with numbers over a few days, I make changes. I am a woman of action. We pre-bolus. We are aggressive with highs. We balance the proportion of fat and protein in his diet. His verdict: We are working way too hard for an a1c of 8.5.
I agree. He thinks we've made a lot of changes recently. And aside from our schedule being a bit off since about 7 weeks of the last three months were at 3 different camps with different schedules, not to mention about 10 days in CA on a different time zone schedule, we couldn't come up with much more we could do then to get him on a strict schedule. So if Liam's a1c isn't down in another 3 months, he wants us to seriously think about going back to shots. He admits himself that it isn't going to give us optimal control, but it will remove a lot of variables. (Insert second "about to throw up" here).
I don't want that. I want optimal control. I want my five year old to spend the least amount of time possible exposing his body to high blood sugar and the effects it may eventually have on him. I don't care how hard I have to work to make that happen. Being diagnosed at 3, I know he will spend most of his life dealing with this. Not optimal is not enough.
To make matters worse, he had lost a pound. He hasn't gained any weight at all since last fall. The doctor thinks it's because his blood sugar is spending too much time high. (celiac panel has been normal). While I agree blood sugar may be part of it, I also know (now) that he needs to be eating at least 1400 calories a day for his activity level. (High. Way high.) He was eating around 1000 on a good day. It's not that I starve him. But when your kid asks for broccoli every single day and eats a lot of fruit and vegetables, they get full on less calories. Hello, fiber. So now, we don't just count carbs. We count CALORIES too. You don't even want to see my mealtime notes. I'm just relieved I'm not mixing the two up.
We've tried supplementing with Kid Essentials shakes (270 calories, I believe) but find those spike him like crazy. We've had to bolus him for double the amount of carbs to bring him back into range. Even then, not ideal. But neither is loading his plate up with extra butter and cheese. I'm really not sure what to do.
We tightened up his ranges for his goals and lowered the level we correct at on his pump hoping that will help, but to kick off our new battle against the a1c, he gets a cold. One of the awesome ones that requires breathing treatments. More highs. (Insert sigh).
I'm kind of suspicious it had something to do with our switch to Apidra right after his last hospitalization in March, but his doctor doesn't want us to switch back to Novolog just yet- he says they are all clinically the same in his experience (including his own, since he also has Type 1). While I like that his Dexcom graph shows more rolling hills and less spiky mountainous lines, I'm not sure if it's the best for him. I can't quite remember how long it took him to come down from the 200's or above on Novolog now, but with the Apidra, it doesn't start moving until about 2 to 2 1/2 hours for Liam. I know I noticed it, so the Novolog must not have taken that long. It could explain more time spent high when we do get the "left field" numbers, but who knows if it's just me or something else entirely.
So, that's my confession.
When it gets hard, it's my tendency to turn inward. I have a bit of a strong-woman complex and I can't seem to accept help from anyone. I started this post two weeks ago and then walked away from it. Such is the story for most of the last several months of very little posting. It isn't easy for me to say these things. But I miss the DOC. I'm feeling alone, and it's my fault. I know I'm not. So here it is.
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