Adam has had a rough go of it the last few months. He's always been my happy-go-lucky kid, even after his diabetes diagnosis. Lately, he hasn't been so cheery. He's been sad, mad and angrier than I've ever seen him. Maybe it's being 5 years old. Maybe it's not.
We saw his pediatric ophthalmologist for his bad eye last week and got some bummer news. He has lost some of the vision he has gained in that eye in the last year. Why? Because with the diabetes diagnosis, we let patching slide. There are only so many things in a day that I'm willing to fight my kid on - and diabetes came first. He's been patching since he was 9 months old, and frankly...I didn't have the extra energy to force him to wear a patch that he hated for 2 hours a day.
Well, guess where that got me. He went from 20/40 vision in his contact lens eye to 20/60. His doctor was NOT pleased and has ordered patching for 5-6 hours a day, plus another exploratory vision check under anesthesia scheduled for January.
Now, in addition to having issues with diabetes lately, and being just plain upset about it, he's mad and angry at me for forcing him to wear a patch for all of his waking hours when he gets home from school. He's PISSED.
As in me chasing him around the house, having Jason hold him down while I put a patch on, having him rip it off over and over until he succumbs to his fate.
It's heartbreaking.
He doesn't want to be a kid with diabetes who wears an insulin pump that everyone can see.
He doesn't want to be a kid who has to wear a contact lens and a sticky, annoying eye patch over his eye for 5 hours a day.
He doesn't want to be different. He just wants to be a kid.
With that said, we are embarking on a new adventure, mostly because he wants it. And nothing else has made him happier since he tried on the Omnipod last week.
We met with the rep last week, who came over and discussed the Pod with me, my husband and my parents. We all asked questions, we all got to test it out. We did an actual insertion on Adam and boy, did he think it was cool. And as an added bonus, he seems to think it doesn't hurt as much as the Insets.
Am I nervous? Hell yes. Have I had second thoughts? Absolutely. I've been awake at night more often than usual worrying about this. About re-training myself. About re-training the nurses at school (I feel totally guilty about switching pumps on them now that they just got the hang of the Ping.) I even got to chat with Hallie on the phone and she answered ALL my questions about switching from the Ping to the Pod. :)
Thankfully, I have the comfort of knowing we still have the Ping and can go back to it if we want to.
But, I am willing to sacrifice a few things for a happier kid. There are so many things about his life that I cannot change. I have to tell him way too often, "I'm sorry...you don't have to like this, but you HAVE to do it."
I'm also hopeful that the fact that it is more user-friendly will allow me to get "out" a bit more. My mom thinks it is so much easier to use, and since she is our only babysitter...well....that rocks.
So, I hope you will all hang with me as we begin this new adventure. We got the go-ahead from his endo yesterday, (after a lecture on how "the grass is not always greener on the other side!") the paperwork is in, and now we just wait for our pods to arrive and schedule training.
Yikes.
Hope the grass is greener. Sounds like everyone needs it!
ReplyDeleteHoping the transition goes smoothly for you and Adam. We finally have started seeing the light at the end of the tunnel, although I refuse to blog about it lest I jinx it!
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ReplyDeleteIt's me again. So glad to hear that the Pod rep meeting went well. I was going to suggest Hallie as a Ping to Pod expert and yep, that insertion does rock. Maybe it's the precision guided and super fast-ness of it or just the fact you can't see it but it really is much less painful.
The grass is indeed not always greener but there is no need for that attitude from your endo. It really sounds like the Pod will be a good fit for you. Maybe your endo likes Animas a lot. I chose it first because it was my endo's favorite pump. But you're the ones who has to live with it everyday. Especially Adam. So glad he loves it.
As for the patching, that's rough. I had to do patching when I was little for a squint but now I've just had glasses for many years. Adam is much braver than me. I've never tried contact lenses and don't want to. I'm too squeamish for that.
My patches bothered me because they were sticky and it hurt to get them off. Have you tried a fabric patch that ties on, like a pirate patch? You can get some great designs online. We also had patches on every single one of my toys at one point. What if you wore a patch too so he wasn't the only one? Failing that, what about a reward chart to encourage him to wear it. A little prize at the end of every week?
Good luck with the Pod. I hope that it will make you all happier. And good luck with the patching. Hopefully he won't need to do it anymore in a few years when his eyes are more mature.
Thanks, Anon! :) We are very excited and I'm looking forward to having a happier boy. The patching is rough - at least they do have some "cool" patches these days, but I think the thing he hates the most is that people always ask him "what happened to your eye?" And he hates having to explain. :)
ReplyDeleteOur Endo is actually very supportive - I think he was just making sure that I wasn't switching because I thought that the Ping wasn't working - I didn't explain to him that we'd been thinking about it for awhile. Luckily, he's one of those doctors that believes that as his parents, we know what is best (for the most part) and will do whatever we like. He's awesome and Adam loves him. :)
Thanks for all the support!
Pod people rock. :)
ReplyDeleteSo do ping people and MM people but you know --- pod people really rock. :)
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ReplyDeleteI think if there is anything he likes, you should go for it. Bless his heart, it's so hard to make kids do stuff anyway-especially what they hate. If pods make him happy, GO FOR IT! : )
Hope you get some sleep now that you made the decision. You'll catch on quick, and having your mom on board? Bonus! : ) Hugs to you guys!
You have to follow your gut. There are a LOT of variables in this life, but THAT is a MUST. If your instincts are telling you to try something new, then you have to give it a try...otherwise you will ALWAYS deal with the "what ifs" in the back of your mind.
ReplyDeleteThis is what I just dealt with when trying Apidra. I feel like Novolog has been old faithful, but I couldn't continue trying to rescue a downward spiral when everything I knew to do wasn't working. So I tried something new. And it helped. Will it be permanent? Too soon to tell...but I know that right now, today, things are better.
When we were leaving Cozmo, we considered the pod, but Sugar was afraid of it. With my IOB security blanket, I didn't push the issue. We've talked to reps multiple times...she's seen people wearing the pod...I've shown her pictures...and I wore a demo pod for 3 days. To this day, she'll smile politely, and insist she wants nothing to do with it. She hates the Dexcom sites because she feels they're too big and cumbersome. She can't stand all the adhesive, and is begging us to take it off after the first 24 hours.
That's that over here for the same reason "that's that" over there. When your kid is fed up, you'll do whatever you have to do to make it easier.
I pray the grass is greener, my friend.
I'm sorry he's having such a hard time with the patch. Five hours a day does seem like a lot. At least he does not have to wear it to school. You are so right to let him have the choice as to which pump to wear. He does not have a choice about having diabetes. He does have a choice in his delivery system. As for your endo's comment, the grass may not be greener but so far the Omni Pod is the only pump without tubing...you must have explained to him your son was having a problem with the tubing. You still have the Ping. It's good to have a choice and sounds like it will make your son happier. Seems like a no brainer to me.
ReplyDeleteOh, it makes me cry all your poor boy and you are going through. I would have done the same thing about the patching. When Nat had her eye appointment and I thought we might have to patch, I sooo did not want to add one more thing to how she is different. The last week has made me sad just seeing how much this has changed her life and stolen some of her innocence. I hate diabetes, but we have no choice do we?! I hope the pod is much easier for Adam and works for him. I can't wait to hear how it all goes. Hugs and love to you all.
ReplyDeleteMy heart aches for you! It isn't fair he has to wear that stupid patch! Maybe a reward at the end of each day if he keeps it on? Like a fun sized candy?
ReplyDeleteHugs to you! Praying the pod brings happiness to all!
UGH! It's hard enough on our kiddos when they have 'one' thing that makes them different, but when things are piled on they all seem to be magnified.
ReplyDeleteOne of the reasons we went with the pod was the fact that it could be 'hidden' if need be; though Bean has never gone for that option.
Hope the transition is as painless as possible!!
Oh, and yes, that was a moose and the snow is pretty much standard for this time of year. :)
We're using Animus and also applying for Omnipod, after 2 years with Animus. Good pump, but the tubing really is hard with active little guys (ours is 3). Good luck and am looking forward to hearing how it's going!
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