Thursday, December 23, 2010
Since Adam's surgery, his numbers have been all over the place and I haven't been able to get things back to the "normal" that they were before. I guess that's just diabetes. ::shrug::
I still feel like this is all a dream I am going to wake up from. I read your blogs…I identify, I relate and then I sit back and go whoa…this is me. This is my life. This is HIS life. He has a disease. It is not going away. And I still can’t fucking believe it. I had a great talk with a friend last night and I think I haven't quite reached the acceptance stage yet.
All I want for Christmas is to feel normal again. I want to go back to the person I was 4 months ago. No one likes the person I am now, least of all me. I am changed. Our family is changed. And while in the future, I may see some things as a blessing, I don’t feel as if we are changed for the better and that hurts.
Parenting is the single thing that brings me to my knees on a daily basis. Even before Adam’s diagnosis, you walk around each day as a parent, wondering how you are going to screw them up that day.
Parenting a diabetic child and his sibling is even harder. I know you all understand.
So, with that, I am looking forward to the new year. I am ready to bid good riddance to this year and I am praying that I will be able to find my new self this next year. And hopefully I'll like that person a whole lot more than I like this one.
Monday, December 20, 2010
Joanne is famous!!! Loved this video the first time I saw it (Joanne...you are so clever!) and now it is on Kerri's Six Until Me blog! Way to go, Joanne! :)
Friday, December 10, 2010
That, my friends, is what has been wreaking havoc on our lives the last few days. No one told me that the eye oinment that we are putting in Adam's eye is a freaking STEROID! It's a tiny amount 2x a day, but I'm gathering it's enough to cause the high BGs. You think? It didn't even click until my neighbor with T1D suggested that his surgeon had put a steriod in his eye during the surgery. Then it finally dawned on me to check the ointment.
Of course, I figured this out after I sent yet another long-winded email to Adam's endo. Whoops. So I sent him another one telling him that I figured it out. I think he's gonna get sick of me. :)
I am emotionally exhausted. I feel like I've been initiated into the REAL diabetes fraternity now and have just been hazed.
I need a drink. And a nap.
ps...his endo just emailed me back. Love that man. We are going to increase his Levemir again and adjust his carb ratios too - he thinks that the ointment is a problem, but also the stress to his body from the surgery.
Wednesday, December 8, 2010
This is the nastiest looking graph for a D-mama. 24 hours above the dotted line.
This was a first for us after 3 months of diabetes. There's a first time for everything, right? I think the anesthesia really did a number on him, because no matter how much insulin I gave him, he wouldn't budge. His endo had me up his Levemir by one unit and lower his carb ratio, but today we still only got below 200 once. He's now sleeping and back up to 268. Over the last few months, we've given him an average of 7 units of insulin a day, including his Levemir. Today he got about 18 units total. Cuh-ray-zay.
Or he could be fighting infection....or he could just be really needing more insulin. There are so many variables. I am SO SO glad we had the Dex for the surgery. I feel like I can keep better tabs on him. He's just had some trace amounts of ketones, but I guess that could make him more insulin resistant too.
Adam's doing okay. His eye looks soooo painful and basically the entire white of his eye is blood red. He's not complaining about it, so I know it just looks worse than it is. He's still his spunky self.
It's back to the numbers game tomorrow. Hopefully they will be on our side!
Tuesday, December 7, 2010
Yeah. As my mom says, "no good deed goes unpunished." :)
I love snuggling with my little guy. And he REALLY likes to snuggle me too. So much so that he has to have my arm around him so he can rest his head on my arm (and leg in my face, etc. etc.) He slept on my arm all night long and when I woke up this morning and moved too quick...pain shot through my arm and into my shoulders and upper back. I couldn't look down or to my right.
So here I am after a looong day, sitting in my recliner with a heating pad on my neck. And a great friend just stopped by to massage my neck with some torture device she had (but it felt good!) and rubbed it with Tiger Balm. Now...you know you've got a good friend when she comes over after the kids are in bed to rub Tiger Balm on your sore neck!
Anyway, the surgery went well. Having T1D allows for certain perks - being first in line for surgery! The anesthesiologist was thrilled to see the Dexcom and he said that normally he'd run glucose through his IV, but since we had the Dex, we didn't need to do that (and Adam had been running high anyway.) I hated when they had to take him away from me. He was so stoic and brave up until that point...he had a death grip on my shirt and kept saying, "but mommy, I scared!" :( There was one other mom waiting there that said Adam made her cry too!
Surgery was 40 minutes and before I knew it, I was back with my baby. The nurse said he was so good - he was very calm waking up from anesthesia. I rubbed his head and belly and just let him know I was there. He was kind of funny for a moment when he said he was thirsty and the nurse got him a cup of water and Adam turned his nose up at it and said, "No! I want OUR water!" Apparently he's a water snob and wanted the water out of my bottle! He gulped that down, so all was good. Silly boy. His eye is all red and swollen...he looks like he's been in a brawl. :)
We were home by 9am, which was nice. He asked for a chocolate shake, (which in retrospect was a bad move, but it's what he wanted) so he had that while I dosed him for it. I could barely move, so we trotted up to my bed and slept for 2 hours until I was woken up by the Dex beeping "HIGH".
And thus began our day of high, high, high. I could not get that kid's blood sugar down under 350 no matter what I did. He's had more insulin today than I've ever given him before. I'm sure this is an after-effect of the anesthesia...and he has had just trace amounts of ketones. I emailed his doctor and since he's actually been high in the morning for the last few days, he had me increase his Levemir and try out a different carb ratio tomorrow. Hopefully that will get him down into a normal range. Speaking of which...I need to go check him now.
Damn. Still 309 at 9:30pm. Stubborn-ass blood sugar.
And in other EXCITING news, our Animas PING Is BeiNg ShiPpEd TOMoRRoW!
Yes, I pulled the trigger. I faxed Adam's paperwork in last Friday and got in touch with the rep today. He said everything is approved and he can have Adam's green (his favorite color!) Ping shipped out ASAP.
Wow! wow. Wow. I am amazed at how fast things have gone....I was honestly expecting both the Dexcom and the pump process to take much longer. And within the span of a few weeks, we have both!
And now I have to get sappy. I couldn't have done it without ALL of you mamas out there. Seriously...you have given me the courage to start this process, to believe that I can do it, to believe that things will be better. Hearing your pump stories and the amazing details you put into your posts have helped me SO MUCH. Reyna posted this last week....and wow. It's like she was speaking directly to me. I have read Wendy's awesome posts on the Ping over and over and over again. I love reading about Laura's experiences with the Omnipod...because I can see us moving onto tubeless in a few years. I loved the Medtronic posts from Meri...'cause I love how simple their pump is and how easy it is to use...but I wanted that damn remote. :)
So thank you, wonderful, amazing ladies of the DOC. You all hold a special place in my heart.
(and, um, I...uh...need y'all more than ever now that the pump is coming to live with us!)
And now I'm off to bed...to read Pumping Insulin.
Here's my question - do I want the Insets or the Inset 30s? The rep seemed to think that we'd want the angled ones, but I told him I needed to ask my D-moms first!
Monday, December 6, 2010
Adam has his eye surgery tomorrow. I have faith that it will be just fine. But frankly, so many things have not been "just fine" for him, that I worry. I still cannot believe that he has Type 1 Diabetes. His other issues were enough. Thankfully, we were able to get his Dexcom in time for the surgery, so I will have more confidence that the anesthesiologist will be on top of his blood sugar during the surgery.
It feels strange here at home tonight. My husband is having an extremely busy time at work - he flew to California today and right now is on his way to Chicago. It's unavoidable, and frankly, that job is what gives us our great insurance, so I don't mind that i have to take Adam alone tomorrow. I kind of prefer it that way - I know how to take care of him and I'm a pretty independent person. My daughter is at my wonderful mom's house for the night...tucked away from my worry and fears. She's having a great time, and Nana will take her to school in the morning.
Later tonight, when I'm too tired to stay awake anymore, I will creep upstairs and scoop up my baby boy from his bed and take him in with me to snuggle for the rest of the night. That will make me happy.
Saturday, December 4, 2010
And not much of it has to do with diabetes.
Although, I'd love to kick it in the a** because it makes things so damn difficult every day. We've had some wicked lows the last few days - random 50's. And now he's asleep sky-high, because I let him HAVE FUN and eat whatever he wanted at the school's Night at the North Pole event.
I've had too many instances the last few days of realizing that my kids are growing up. They are not babies anymore. They are not toddlers. I have an elementary-aged kiddo and a preschooler that looks like a kindergartener.
I went to the mall with my daughter today and I asked her if she wanted to see Santa this year. She said, "Mom...I think I'm getting too old for that."
Break a momma's heart, why dontcha.
She still believes, but the questions are getting better. More logical, more thought out. As I walked around the mall today, I saw moms with little babies and toddlers in strollers and I was starting to miss that stage. My kiddos and I would head to the mall on a weekday and roam around, hit the play area and just hang out. Especially at Christmastime, when there is so much to look at...so much magic in their eyes. Even a trip to Target was fun to look at all the Christmas stuff.
This year I'm feeling sad about it all. I feel like I waited so long for them to be old enough to do the "fun" stuff during the holidays and now it seems like it is passing by so fast and they are moving on to a different stage already. I could barely get them to sit with me to watch "Rudolph the Red-Nosed Reindeer" the other day.
We did start a new tradition this year - I took my daughter to see the Nutcracker and she LOVED it. I saw the wonder and sparkle in her eyes and I wanted to freeze that moment.
Because I know that those moments are fleeting.
Sigh. Can't we freeze time for a bit?
Thursday, December 2, 2010
The most important part of the meeting was that Adam FINALLY got to see the pumps and saw that the infusion set has just a tiny tube that would be in him...and he wanted to walk out of there with a pump. :)
Now I just have to pick one and place an order....
Tuesday, November 30, 2010
I honestly didn't think I took any pictures when Adam was in the hospital...heck, I don't even remember having the camera there. But I found my point-and-shoot today (kids...gotta love them) and I've been uploading photos from 2010 to Shutterfly and I found that I did take 3 pics of him in the hospital.
Boy he looks skinny! Sniff, sniff. :( But man, that kid is just a happy kid...diabetes and all. Love him.
In the midst of Adam's diabetes diagnoses, my husband was in the middle of negotiating a new job. Talk about uber-stressful when your son has been admitted to the hospital, your husband has just given notice to his old job, accepted a new one, and then the old one says, "your last day is today because you are going to a competitor."
Freak out! We were afraid we'd be without coverage during his hospital stay. It all worked out fine, though, once we realized we'd be covered 'till the end of the month and his new job would start my husband earlier just to be sure we'd have insurance coverage.
And what mighty fine coverage that is. Today we found out that Adam's Dexcom will be covered at 100%. And the sensors are covered at 100%.
***doing happy dance***
I say this only because I feel like FINALLY. We are able to catch a break! We have not had the best insurance in the past (but I'm thankful for what we had, that is for sure). We have had to pay out of pocket for all of Adam's contact lenses ($140 a pop - and let me just say that small children do not keep track of them well), 20% of all of his surgeries and exams under anesthesia (3 surgeries + 3 exams under anesthesia = $$$$$$$) and now his diabetes supplies.
I know how hard it is to pay those bills. I know what it's like to call the hospital and say, "hey, I can't pay this, we need a payment plan." It sucks, but we do it for our kid.
Now, I'm just reveling in the fact that SOMETHING is going our way. For all I know, the insurance coverage will change next year.....but I'm going to enjoy this for right now. I'm pretty sure that our pump will be covered at 100%, so I'm going to push to get that before Dec. 31st as well. :)
Sunday, November 28, 2010
Adam's site came out the day after Thanksgiving, so we're done with our trial. I sure hope when we get our own that the sites stick better...the adhesive was coming loose after one bath. And a few wrestling sessions on Thanksgiving didn't help matters. This is what I'm worried about with a pump...I don't mind the Dexcom coming out so much, but a pump site...that is a huge deal.
I really liked the Dexcom. Although, it really made me hate Diabetes even more than I already did. Dexcom made me realize just out out of control we are, after being under the illusion of control.
Um, Novolog? Fast-acting insulin my ASS.
I realize that since we are doing MDI, we are dosing Adam after he eats...but man, to actually see those meal spikes happen in real life after his meals and then having to wait for the insulin to react - it was an eye opener. It made me want a pump yesterday. I know that the pump won't solve everything, but am I wrong in assuming that we won't have as many meal spikes if I can pre-bolus him partially for a meal, then bolus him for the rest when he's done?
I was very happy to see how steady he stayed every night. VERY happy. Levemir rocks and no matter what his bedtime reading was, he always stayed steady in the low 100's all night long.
I wasn't so impressed with how varying the numbers could be between the Dex and his real blood sugar - sometimes there was a 100 pt difference when he was high. For example, Dex would say he was 350, and in reality he was like 260. But the gap closed when he was lower, which was good.
I don't know...I'm just pissed that this is all so hard. I want a break and I feel horrible for complaining because Adam doesn't get a break and will never get a break for the rest of his life.
Overall, I give the Dex a thumbs up and I feel kind of naked without it now, especially at night. We should have one of our own sometime this week, though, so we don't have to wait that long!
Tuesday, November 23, 2010
Today was a very exciting day in the Drew household.
Today, the Dexcom came to live with us!
We are extremely blessed to have our neighbor - we've known each other for 11 years, she is T1D AND she's our Dexcom rep. :)
She came over this afternoon to do the sensor insertion on Adam. He was totally nervous and scared, mostly because I think he truly didn't understand what was going to happen. He seemed to think that the Dexcom insertion was the NEW way we were going to be checking blood sugars....like 10 times a day. I had to reassure him that no, this was only once a week.
He wanted me to do the insertion, and it was really quite easy (I'd viewed the tutorials online, and watched Tracy's You Tube videos!) Adam cried and said that it felt like he got a cactus needle stuck in his arm (only an Arizona boy would say that!) but after that, he fell asleep on my lap while we went over the details of the Dex. And since then, he hasn't said a word about the sensor/transmitter feeling funny or anything.
He's been proudly showing it off to everyone he knows! I put the receiver in the Spibelt that I won from Meri, and it works perfectly.
I love the trending. LOVE it. I knew he was going down from playing outside, and then it beeped to let me know it was under 90. A few glucose tabs later and he's all good.
Dexcom seems to have great customer service...our endo sent in the paperwork for approval this morning, and by noon I had Dexcom call me and let me know that all things look good and we should have one of our OWN next week.
Monday, November 22, 2010
Oooh, fun! I have seen this floating around the DOC and I think I've been tagged a few times...by Heather and Denise! Thanks, girls!
Now, I need to share 7 things about myself...
1. I love to bake. Not cook, BAKE. You will often find me in the kitchen making sugar cookies - like today! I made Thanksgiving turkey sugar cookies as "placecards" for our Thanksgiving table and helicopter cookies for my mom to take to her work to share with her co-workers.
2. I have a new-found love of power tools. I love to build! I built Adam a bookshelf for his room, a bunk bed for Sydney's American Girl dolls and a headboard for our bed....which is not finished yet. Next on tap is more doll furniture and maybe a desk...
3. I am a total night-owl. I had hoped that would change after having kids and I'd switch to being a morning person....but no such luck.
4. I am a people-pleaser, and at 35, I am just now beginning to learn how to say "no." It's very, very hard for me.
5. Holy crap, when did I get to be 35?????? I still feel like I should be in my 20's. Hmmm.
6. If I could snap my fingers and have a new career, I'd be a nurse. Which is completely unrelated to my old career as a copywriter.
7. I am completely and totally addicted to diet soda. I'm not even picky - Diet Coke, Diet Pepsi...I'll take whatever I can get. Although the best is the $1.00 Diet Cokes from McDonald's Drive-thru. Fizzy, fountain, diet soda. Mmmm....if it wasn't 9pm and my husband wasn't out of town, I'd be out the door right now to get one.
Okay, now the deal is I need to pass this award on to 12 bloggers you have recently discovered and think are fantastic! Many of these girls have been tagged before...but haven't posted yet. And some are new!
Reyna @ Beta Buddies
Joanne @ Death of a Pancreas
Tracy @ Our New Adventure
Shamae @ Our Crazy Happy Life
Meri @ Our Diabetic Life
Laura @ Houston We Have a Problem
Amy @ Laughing at Diabetes
Adrienne @ 2 Green Eyed Girls
Heidi @ D-Tales
And my great friend Heather - not diabetic, but her son has FPIES. Which can be just as maddening as diabetes some days. Go give her some love!
Heather @ Feeding Jake
Wednesday, November 17, 2010
Well, when you've got T1D, you've gotta find the fun in it somehow. Our syringes often end up all over the house, no matter how hard I try to get them in the sharps container ASAP. They become makeshift toys every once in awhile... (he knows not to remove the orange cap!)
Monday, November 15, 2010
It took me a few minutes to put everyone's face to their name to their blog name...I joked that we need name tags that say, "Hello, My Name is ___ and my blog is ___" But seriously, how lucky am I to have so many great D-blogging moms right here in my neck of the woods??
I didn't get any great pics, but I know these ladies will post some in the next few days. Adam was being totally anti-social...and this morning I figured out why.
This is the bummer part.
I took him in to the ped's this morning because he was up coughing all night and this morning said his throat hurt. I normally don't rush my kids to the doctor when they complain about stuff like this but I had a gut feeling (much like Heidi did!) and I just knew it was more than a virus.
Sure enough, he was diagnosed with Strep throat. Ugh. He's on 10 days of antibiotics...anything I should look out for? This is his first time being sick with diabetes and I'm a bit nervous. His blood sugar numbers are fine - a bit high today, but okay.
Hopefully this won't get passed around to the rest of the crew...
Friday, November 12, 2010
I was just about ready to head into an appointment when Adam's preschool teacher called. She said he was acting really tired and lethargic and just didn't seem like himself. They tried to offer him juice, but he refused. I told them to give him his snack instead, and I ran over and picked him up. Thank goodness I'm only a few minutes away!
He looked forlorn when I got there, and I tested him and he was 88...which means that before his snack he was even lower! Thank goodness for his teachers - they said they felt bad calling me, but I assured them that they did the EXACT right thing and I'm so glad they did.
Once I got him home, he ate about 30 carbs worth of goldfish crackers and I tested him again, and he was still only 98! Crazy. He had a HUGE activity day yesterday - a playdate and about 3-4 hours playing outside, so I'm guessing maybe all of that caught up with him. He woke up a few times last night as well...
All is well now...he's cuddling with me on the couch and we are watching Spongebob. Well, he is. I'm on the laptop. :)
Tuesday, November 9, 2010
I am scared, nervous and frankly, I just don't want to do this. I don't want my son attached to a pump. I don't want him on shots. I don't want him to have diabetes.
But I have to. I feel like I need to get this pump thing going so we can "move on" with our lives, so to speak. Does that make sense? I just want to get settled with the pump, accept it and move on. It's been this thing hanging over our heads for a few months - this huge unknown thing that is so scary to me, but I can't deny that everyone that has one for their kiddo says it's been great.
His blood sugars have been so wonky, and frankly, we are not getting a true BS measurement because of his constant grazing. I'm sorry...it has been really hard for me to nail down a 4 year old on an "eating schedule." It's just not happening. I am hoping that a pump will give us that flexibility and I'm praying that Adam will take to the pump and like it.
I've been emailing with Adam's endo for the last day and he's setting us up with an appointment with a CDE at the hospital so we can discuss all of the pumps. I really, really want to like the Omnipod, but I think that we are going to go with the Animas right now. Adam is still little...and in 4 years when it's time for a new pump, I can see the Omipod being our first choice. But right now, I think I need all the features the Animas has. Plus, the fact that my neighbor uses the Animas, so having 24/7 life support right there is awesome. :)
Saturday, November 6, 2010
But this year, I plan on embracing the holiday - despite the crap that has gone on this year, I am very thankful for my family and friends that have rallied around us this year. I don't usually "decorate" for Thanksgiving, but this year I did.
I'm thankful for little boys that are so proud of themselves for playing football:
I'm thankful for little girls who spend hours reading the latest American Girl catalog:
I'm thankful for a husband that lets me sleep in when I'm sick and he's been out of town all week:
Friday, November 5, 2010
That has been coming out of my mouth all week long in regards to Adam's numbers. The beginning of the week, he was low, low, low. So low that on Monday, I think I gave him 1 unit of Novolog total during the day.
Fast-forward to today, and his blood sugar hasn't been under 155 all day long. 310 at 8:30am, gave a correction, then he was 180 after preschool. 179 this afternoon and now he's 240 an hour and a half after his 2 units of Novolog for dinner. It's a fresh batch of insulin, too.
I give. I give.
I guess my plan is to watch this over the weekend and call the endo on Monday to see if things need to be increased. No ketones so far, thank goodness.
I'm also so ready for a pump. So ready. And a Dexcom. Let's face it, I'm getting greedy now. We have great insurance finally and I'm going to go for broke. :)
Thursday, November 4, 2010
I am trying to find the inner "good mom" in me and enjoy a day at home alone with my sweet, little, hacking, snot-dripping dumplings, but alas, it's only 10am and I'm ready to run up to my room, take some Ny-Quil and lock the door.
Maybe I'll just lock them in their rooms.
Just kidding. kinda.
Not sure what is up with Adam the last few days, but he is all of the sudden fighting his injections like crazy. Freaking out, saying it will hurt, etc. Which is strange because he's never really had an issue with them before. Delayed reaction, maybe? Who knows. But it has me starting to think about a pump sooner rather than later. I'm already growing weary of always drawing up injections, not getting the right amount, etc. I don't know. It's such a tough decision.
Monday, November 1, 2010
Well, our first Halloween with diabetes has passed us by. The kids had fun and I didn't worry too much about it, although today we are experiencing lots of lows...in fact, it is 2:25 pm as I write this and I have yet to give him any insulin today.
He had one piece of candy before bed since he was low...then at bedtime he was 120. He was 98 at 11pm, and I really should have checked him again, because this morning at 7am, he was 84.
He does have a bit of a cold as well, but I always thought that he'd have high blood sugar with a cold?
I guess this is definitely an example of YDMV (your diabetes may vary!)
Our JDRF Walk was this past Saturday - what a great day! We had a lot of fun and felt great to be "doing something." We raised over $2500 - not too bad for our first go-round!
The only sad moment of the day was at the end of the walk, and Adam looked up at me and said, "Do I still have diabetes?"
Talk about breaking a momma's heart! I think he thought that "Walk for the Cure" meant he'd be cured. But hey, he's 4. :)
Wednesday, October 27, 2010
I haven’t felt much like blogging lately…things are pretty steady around here as far as “D” goes…my little “honeymooner” is doing really well. We’ve also been getting ready for our very first JDRF Walk for the Cure this Saturday!
So, I thought I’d copy Reyna and add to the Naked Pancreas meme even though we are not pumping yet. :)
1. What kind on insulin management mode do you use? Adam is currently on MDI, and things are going really well with that right now. I’m anticipating we’ll be on a pump next year, though.
2. How often do you inject/change pump sites? Right now, we’re injecting an average of 6 times a day. Adam is quite the grazer, and sometimes it is more than that!
3. What type (s) of insulin do you use? We use Novolog and Levemir
4. What are your basal settings?
Adam is on 3 units of Levemir – we give him his dose at 7pm every night. Levemir seems to keep things pretty steady – his morning BGs are always in the 120’s.
5. What are your correction factors ?
Adam’s correction factor is 1:150. We haven’t had to use this very often so far.
6. What are your meal ratios ?
1:30 for all meals. His previous endo had him at 1:25 for breakfast, but he was bottoming out at preschool, so I changed it (with the blessing of his new endo) and that has kept things steady.
7. What do you do for activity and/or PE?
Adam is at preschool for 2 ½ hours Monday, Wednesday and Friday and I give him an uncovered snack for snacktime – usually around 15 carbs. When I leave him at school, his BG is usually around 140, and by snacktime 2 hours later he’s ready for a snack. When I test him when he gets home, he’s (hopefully) around 130.
For his football practice and games, we give him a snack before, or glucose tabs if he’s low.
8. How do you manage Pizza, Macaroni and Cheese, or any other "difficult to manage" foods?
No clue. We dose, then deal with the aftermath!
9. How do you prefer to manage your logs/data?
Since we are still new to this, we are using the log sheets our nurse gave us. I went to Kinkos and made like 100 copies of it and keep it all in a 3 ring binder. It works for us right now.
Wednesday, October 20, 2010
Tuesday, October 19, 2010
Adam is doing really well. His numbers are pretty steady and easily manageable. This is what I'm worried about though - this "honeymoon" period tricking me into thinking that things are always going to be this easy.
'Cause I read all y'all's blogs, and I know it's not.
I was talking to my neighbor - the one who has had T1D since she was 30, was a nurse, a CDE AND works for Dexcom - and she said to just try and enjoy the smoothness of things now and hone my skills in carb counting and injections, because at some point, it's not going to be this easy.
I know this...I just wish I knew WHEN that damn pancreas was going to totally stop working.
I do know that I am one of the lucky ones, though. I have a ton of family and friend support. I have the DOC. I have neighbors with T1D, neighbors who are nurses and a couple of friends who are Physician Assistants. I have a wealth of knowledge at my fingertips.
It just doesn't make it any easier when you get up in the morning and realize that yes...I HAVE to get up and check that damn blood sugar. I HAVE to watch every morsel that goes in his mouth. I can't FALL ASLEEP and forget that Adam had a snack and then be surprised when his blood sugar is in the 300's. (Yeah, that made me feel like a total moron.)
I can't be off my game...and that, my friends, is exhausting. And I know that you guys know that all too well.
Sunday, October 10, 2010
'Cause we've gotta do it with Adam.
Ugh. I swear, when it rains, it pours. Every 3 months, Adam sees his eye surgeon to keep tabs on his right eye - the one he had a cataract and the lens removed in. For the last year, he's told me that an eye muscle surgery is going to happen at some point, and, well...that point is now. He's scheduled for December, so we've got some time. I'm just worried about the D aspect of it.
We also met our new endo for Adam this week. LOOOOVVE him! He spent an entire hour with us and was really great with him. I am so glad we switched and I feel so much better that we are in his care. With all the talk about A1C's around the DOC, we had Adam's checked while we were at the office. Since we can only have a *good* number at this point, coming down from the 8.5 in the hospital, I was pleased to find out that it was 7.4. Hopefully in 3 months it will be the same.
He didn't see the need to change anything at this point, as Adam's numbers have been pretty steady. We talked about pumps for a bit, but I think we're still about 6 months off from making a decision about that.
Wednesday, October 6, 2010
Sunday, October 3, 2010
So, my friend said, "Yes, I'll do it!" and I showed her the ropes. Her next door neighbor is a nurse, so that was her backup in case things got hairy. :) She texted me his blood sugar numbers after school and then she called me and told me everything he ate for lunch - I added up the carbs and told her to draw up 2 units of insulin...and she gave Adam his shot! She texted me when it was done and she was so proud of herself. :) She said she accidentally stuck him twice because her hand was shaking so hard, but she did it! And Adam trusts her, so he just sat there and didn't complain one bit.
I am so blessed to have her.
Next topic...we went to our local JDRF Technology Review and Update yesterday. It was a good chance to meet with pump reps and listen to a panel talk about their experiences. We are still months away from a pump...but my main question is...
How in the world do you decide which one is for you??
If anyone has the time, I'd love to hear how you chose the pump you chose...or even direct me to a post on your blog. My husband and I are both enthralled with the Omnipod since it's tubeless, but after visiting all of the other pump tables, I like the Animas Ping and the fact that the Medtronic has the CGM. Aaaaaahhhh....which to choose? There was a 4 year old and his mom on the panel that had the Omnipod, which I thought was really cool.
And it's not like you can just ask your insurance to pay for a $6,000 pump, try it out and say, "nah, we don't like that one. Can we try another, please?"
Wednesday, September 29, 2010
We had dinner at Claim Jumper and Adam had some pizza, and I dosed him for it. Then, he was still hungry, so I let him have some more. He wanted a cupcake and since it had been some time since he'd eaten the extra pizza, I decided to dose him for the pizza AND the cupcake he hadn't eaten yet.
Now I know why you don't dose preschoolers before eating.
I mean seriously, who's not going to eat a chocolate cupcake? Not my Adam, the little sweet-a-holic that he is.
But as 4 year-olds are often wont to do...he changed his mind. And refused to eat it.
So I had him eat a fruit snack and some smarties to compensate and when we got home 45 minutes later I tested him.
Okay, drink juice!
15 minutes later,
Now I'm begging and pleading for Adam to eat some glucose tabs. Which he is refusing to do.
I get him to drink some orange juice
I test him again...ERROR!
I test him again...486!!!
Yeah, I said WTF too.
I tossed aside the One Touch and got out the Aviva meter and tested him AGAIN.
He refused to eat anything else, but sissy got him to suck on a lollipop while we read him books before bed.
I will be testing a lot tonight....
Tuesday, September 28, 2010
Seriously, though, I have lots of things that I'd like to post, but I've been feeling kind of blah. Okay, not kind of...really blah. I covet my bed and I wish I could retreat to the cool darkness of my room during the day.
And really, Arizona? 105 degrees still? Give this mama a break.
I'm waiting for a call back from the endo again - Adam's been bottoming out after breakfast...this morning an hour and a half after his insulin, he was at 55. Gah. If I don't get a call back today, I'm adjusting his dose myself.
Sunday, September 26, 2010
After only blogging for a few weeks, I've been the lucky winner of TWO giveaways! Crazy, I tell you, since I've never won anything in my life. I guess I'm lucky in T1D-land. :)
First up, I won this super-cool bracelet for Adam from the amazing Heidi over at D-Tales.
And then Meri at Our Diabetic Life was giving away TWO amazing prize packages - Contigo cups, a Medic Alert gift certificate AND a Spibelt! And I was a lucky winner yet again!
So...you want to be a winner too? Then it's YOUR lucky day! Run on over and visit Hallie and her super-cute daughter, Sweetpea at The Princess and the Pump for another amazing giveaway!
Friday, September 24, 2010
I wanted to write about a great friend today. I can't even call her just great - she is amazing. She has been a rock for me over the last 6 years we have known each other, and when Adam was diagnosed with T1D, she was right there, front and center, telling me that everything was going to be okay.
We've all had friends who don't know what to say...or what to do when our child is diagnosed with a chronic disease. Some are scared, some don't understand, some just brush it under the rug and ask, "why are you so tired all the time?"
But this friend was supportive in the exact way I needed, although I didn't realize it until this morning. She was never scared of diabetes. She never freaked out at the idea of needles. She jumped in right away and said, "Teach me. Show me. Let me help you." That is what this mama needed.
And over the last 3 weeks, I knew she wasn't just "saying" it. Because she kept asking me, "Are you ready for me to have Adam over yet?"
This morning I was ready.
I dropped him off at preschool and handed her the diabetes bag. She's already been over and checked blood sugars on herself and Adam, so I know she can do it. She knows what to do if he's low or high. And, I am, of course, just a phone call away.
Over the next few weeks and months, I will show her how to calculate insulin. I know she'll be able to do it - because she showed me that she's not scared of it all. That is invaluable to me. Even if she's nervous on the inside, I know Adam trusts her implicitly (as do I) and it will all be fine.
And I think I'm going to go have a good cry right now, because of how blessed I am to have this person in my life.
Wednesday, September 22, 2010
Monday, September 20, 2010
I put in a call to our endo and he had us change his ratios back to 3 units of Levemir and then change the Novolog ratios to 1:25 for breakfast and 1:30 the rest of the day. Which is what we were at 2 weeks ago...so I guess I'm finally catching onto the fact that T1 Diabetes is like a mood ring...you just never know what kind of reaction you are going to be dealing with!
Another question for you experienced gals - what type of log/logbook do you use? Do you keep it on the computer? Paper? Steel-trap memory? I'm struggling to find the easiest way to log this information. Do you log food as well as numbers?
Sunday, September 19, 2010
We made quite a few changes in Adam's insulin during the first few weeks, and for this past week, we've ended up on a carb ratio of 1:15 for breakfast and 1:25 the rest of the day, then 4 units of Levemir in the evening. That has worked well for this week - his numbers have been great - no huge highs and no low lows.
Yesterday was the first day we've battled lows. Granted, he had his flag football game in the morning, and it felt like we were chasing his sugars all day long after that to keep them up.
Today, he started out with a blood sugar of 118, had a good breakfast and my husband gave him 4.5 units of Novolog.
And that's the last Novolog we've given him today. I checked him around 10ish and was shocked to see 53 flash back at me, so I gave him some juice and he popped back up.
He's been grazing all day...not really eating much, but I had to keep giving him some snacks to keep that blood sugar up. He didn't eat dinner, but we still gave him his nighttime Levemir. Was that a mistake? Is this that "honeymooning" I keep hearing about?
I just checked him and he was 63 at 10pm. I'm going to check him again in about a half an hour and see if I need to give him some juice or something. I'm nervous.
Back at Adam's well-check in April, I brought him in and had no idea he was sick. I mentioned in passing to our pediatrician that Adam had this rash on his back and belly. She took one look at it and said, "Um, that's strep rash."
Color me dumbfounded. I had no idea he was even sick! One rapid strep test later, and it was confirmed that he had a raging case of strep throat/scarlet fever.
So, we got our antibiotics and went on our merry way.
In early June, as I was clipping Adam's fingernails, I noticed that Adam had deep, horizontal ridges in his fingernails...like dents.
Of course, I consulted Dr. Google, and there were all kinds of possibilities - vitamin deficiency, illness, etc. I came across a picture of Beau's lines that looked exactly what Adam's nails looked like.
One of the items on the list of causes was scarlet fever.
Bingo! I breathed a sigh of relief and forgot about making an appointment to take Adam in to the ped's office.
Did y'all click on that link and see what I missed? What is number 1 on the list?
Yeah. Uncontrolled Diabetes.
Of course, at the time, I had no idea that Adam could possibly have that. He wasn't showing many symptoms at that point, if any.
And I know that the fact remains, that whether we had caught it back then vs. now...it just doesn't matter. Thankfully Adam's diabetes was caught before he ended up in the ICU with DKA.
But it certainly is interesting. This has likely been brewing for at least 6 months. It is fascinating to me that the body leaves these little, seemingly insignificant clues as to what is going on in deep inside.
Friday, September 17, 2010
On the outside, to everyone else, it looks like we are back to “normal” – back to preschool, running errands, going to soccer and football games.
But on the inside, nothing is normal.
I have never been a cell phone addict – my friends would laugh at my non-existent texting abilities and the fact that my phone was always at the bottom of my purse, dead.
But now I jump whenever I hear my cell phone ring. I have a mini panic-attack if I’ve forgotten it.
My heart races…is it about Adam? Is he sick?
I’ve never been good with details, but with this disease, the details are important.
I have to get it right. The right amount of insulin. Don’t forget the diabetes bag. Don’t forget to check his blood sugar. Am I missing something? Why is he so cranky/tired/angry?
Being a parent creates a whole new level of awareness in your life. But the level of awareness that parenting a child with diabetes requires seems pretty overwhelming to me at the moment.
Will there ever be enough room in my brain for all of this?
Wednesday, September 15, 2010
It became a running joke on Facebook...this summer, Adam would inevitably fall asleep somewhere in the afternoon (usually on me!), and I'd take a picture with Photo Booth on my Mac. "Where was Adam going to fall asleep today?"
People would laugh...say, "Man, I wish my kid could fall asleep anywhere!" I thought it was sweet, too. I got some extra cuddles with my little man.
And now I know different. It's not funny. It's not cute. He was falling asleep because he was sick.
I had no idea what was raging in his little body.
Tuesday, September 14, 2010
When I was 20 weeks pregnant, we were told that our son would be born with a cleft lip and palate. Thankfully, when he was born, his palate was intact and it was “just” a cleft lip. He latched on with that cleft lip and nursed until he was 14 months old.
“Whew!” we thought. We got so lucky! One quick little surgery at 4 months old and he’ll be as good as new.
And he was! For a few months anyway.
At his 6 month well-check, our AWESOME (did I say awesome? ‘Cause she is) pediatrician noticed “something” in his eye. A speck…hardly noticeable…but she wanted us to have it checked out with a pediatric ophthalmologist.
I wasn’t worried. After all, we’d already had our scare! Adam was going to be just fine.
The doctor was amazed that our pediatrician had seen what was in Adam’s eye. It was so tiny…a cataract. He said it was fine for now, but it needed to be checked in 6 weeks to see if it got bigger.
Whew. Okay. Not so bad…we can deal.
Six weeks later and we’re back in his office. The cataract has gotten larger and is obstructing Adam’s vision. The lens of his right eye must be removed. Immediately.
I cry. I can’t believe the shitty hand my son has been dealt. But it is fixable. Do-able. It’s not a disease.
When Adam is 9 months old, he has the lens of his eye removed and is fitted for a hard contact lens that we must learn how to put in his eye every day.
Ever tried to put a contact lens into a squirmy, uncooperative 9 month-old’s eye?
Yeah, didn’t think so.
It takes 2 of us to hold him down, often times upwards of a half an hour to get that damn thing in. (This is, I believe, what they call foreshadowing. God gave my husband and I practice at holding our son down, so we'd be ready for insulin shots. Heh.)
*This is where I have a nervous breakdown and begin to explore the joys of Lexapro.*
Like everything else…it gets easier. Adam gets used to his contact lens, patching, etc.
We get used to searching for lost contact lenses on our beige carpeting, letting a few f-bombs fly when we step on them and have to pony up another $140 to buy a new one.
Fast-forward to this summer – Adam is starting pre-K three days a week from 9-1pm, my daughter will begin 2nd grade.
I am smelling something wonderful. It’s called freedom.
Freedom to exercise. Freedom to contemplate going back to school. Freedom to build things in my garage. Freedom to bake…for people to actually pay me to bake!
If you read the first post, you know how this story ends. The universe tells me, “Ha…hold it there, little missy. We’re not done with you yet.”
And so the story begins.
There were a few potty accidents here and there…just blips on the radar screen, figuring he was having a bit of regression.
But really, regression after a year and a half of being potty trained?
Then came the incessant need for water. I’d find him in the garage, grabbing the big bottles of water for himself. Over and over again.
Hey, it’s summer in Arizona! It’s 115 degrees out, of course he’s thirsty!
The constant eating. The little dude would throw back 4 slices of peanut butter toast in the morning and still be hungry. Then it became 8 chicken nuggets at lunch.
He’s a growing boy, right?
He’d actually been losing weight. Looking back at the photos of his first day of pre-K (the day before his diagnosis), I can see it now. The thin face. Dark circles under his eyes. Pale. Scrawny.
Then, that fateful Monday night when we went to IHOP for dinner as a family. Adam sucked down his milk in minutes. Then 1, then 2, then 3 glasses of water in 15 minutes. My husband and I exchanged worried glances. That night, Adam wet the bed within an hour of falling asleep. Then, with a pull-up on, he soaked through that within a few hours.
I googled. I worried. I stayed up past midnight, lurking on diabetes message boards, hoping that I wasn’t going to become a member of this sucky club.
I took Adam in to his pediatrician first thing in the morning. He drank over 20 oz of water on the way there. He had 4 pieces of cream cheese toast and was still hungry.
The nurse tested his urine. Lots of sugar. When she came in with the meter to prick his finger, I knew. His blood glucose was 550, and then I cried.
His pediatrician came in the door, took one look at me and gave me a huge hug. She said she just about cried when she saw his numbers…especially knowing what we’ve been through with Adam since he was born…cleft lip…severe reflux…cataract in his right eye at 9 months old…contact lens.
And now this. Fricking-fracking Type 1 Diabetes.