I've never blogged about Diabetes (except just after our son, Tomas, was diagnosed) - I try and pretend Tomas is a normal kid that just gets extra medicine (the same way someone with thyroid problems would take a pill). Alas, the time has come that I feel comfortable passing along how it has affected our life.
I do read other diabetes blogs faithfully and they've been fantastic support. I read Mom wants a Diabetes Cure and Sunny Side Up and a few others - I only find the time to read the ones where the parents have a child with diabetes but there are lots of great all-around diabetes blogs around.
When Tomas was first diagnosed this spring - I freaked out. T.G. we had friends in a city where we had previously lived who had a child diagnosed at age 2 with diabetes and they were a huge help in calming me down.
After we'd had 'diabetes in the house' for a few weeks I said "I can handle this. It's only an extra 30 minutes cumulative a day. " But you know what? It's more. It never ends. Ever. And it's not 30 minutes - some days it can be every waking minute wondering why your child has high sugar readings or low sugar readings and how can you make sure they eat their snack when they're at the play date or how do you handle that the other parents don't want them over for a play date because they're afraid something will happen to Tomas (I've prepared a simple hand-out but diabetes is scary and it is a big responsibility). He gets his sugar checked at school at 11:00am and I'm ALWAYS near a phone so I can get it if they call. Yesterday I was at the dentist with my mouth wide open at 11am but I'd told the dentist he'd need to answer the phone if the school phoned.
I try and shelter Tomas from the diabetes work because it will be something he has to deal with EVERY SINGLE DAY FOR THE REST OF HIS LIFE. And it's not like it makes sense everyday. Sometimes Diabetes just goes berserk and you have really high readings all day or really low readings. Or really high THEN really low. It requires constant vigilance. My purse has increased back to diaper bag purse size because of his testing kit, snacks, etc. that I carry everywhere I go. Even if Tomas is not with me - I may get a call and have to go straight to help him.
For those of you wondering - Tomas' diabetes day goes something like this:
7:15am - finger poke
7:30 - needle with NovoRapid insulin mixed with NPH insulin
11:00 - finger poke at school (done by an Education Assistant)
3:00pm - finger poke
5:30 - finger poke
5:30 - needle with NovoRapid insulin
7:30 - finger poke
7:30 - needle with NPH insulin
Middle of the Night - Tomas is checked at least twice a week in the middle of the night - more if his numbers have been off.
PLUS he'll usually have at least one additional finger poke because of odd highs or lows when I'm trying to figure out what the hell is going on.
He eats his meals at 7:30am, 11:30am and 5:30pm
He eats his snacks at 10:00am, 3:00pm and 7:30pm
Tomas' dietitian (who has type 1 diabetes) is excellent. She has helped us ensure that he can still have 'yummy' food (in moderation) but each morsel of food that Tomas eats is measured and the carbohydrates are counted. We record the carbs and insulin amounts in our diabetes record book. And half the time it doesn't make sense. I thought that once you'd been doing this for awhile you'd get it set and just hit 'repeat' for each day. HA HA HA. Every day requires new guesses, measurements and prayers that you've adjusted the food(carbs)/insulin/exercise (uses sugar) to a safe rate that won't damage your child's organs.
[I did just get his A1C levels back and for his first 3 months of diabetes he was 7.6 - we've been told that is very good. For those of you who don't know about A1C levels - that's a discussion for a different email.]
In case anyone is wondering - we've looked at the Insulin Pump but there is no one at the school that is (or can be) trained to help with any insulin adjustments required during school hours (we're lucky to get someone to check his sugar levels). We've also looked at Lantus but there is no one (as above) to give him needles at lunch time. When he is a little older we'll definitely go for the pump.
Mainly I am desperate for child care. We used to have the greatest babysitter in the world. She was a mom, a teacher and was awesome. BUT the big D scared her and she isn't comfortable looking after Tomas anymore.
I'm willing to pay oodles to get someone to look after my kids so my husband and I could at least go for supper or just out for 3 or 4 hours. Never mind getting away for a night or two. I've tried the JDRF, I've tried the local diabetes clinic - the economy is so red hot that no one wants to babysit a kid with diabetes no matter what we'd pay. And quite frankly, at this point I've offered DOUBLE minimum wage. Although I do have a lead on calling the Nursing Department at the local University.
Tomas is the only kid he knows with diabetes. There are no other kids in his school with diabetes. He had another kid in his class this year wearing the medical alert wristband so he thought MAYBE but then he came home and said "Nah, he's just got allergies". He never complains about getting needles, he never complains about finger pokes, he never complains about missing lots of schools when we see all the varying doctors and specialists (well, he does kinda cheer about that).
Tomas does handle his diabetes like it's part of his life which is great although I noticed he got all defensive the other day when another mother asked how he was doing with his diabetes. He turned red and said "it's fine!" then marched away. He doesn't want to be different but so far he has handled it like a pro. We attended the Walk to Cure Diabetes (which was hard for Tomas to understand because he thought he'd be cured after he walked) but didn't meet any other kids and since it was summer the local diabetes clinic closed down. We're hoping to meet kids at the next diabetes clink "check-in" in November.
Tomas is an awesome kid and I am thankful for everyone around who has supported us and the quest for a cure for Type 1 Diabetes.
Labels: Diabetes, Tomas