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We get in there, and Reuben is noisy, as kids his age are. He is asked to leave the room. (Yes the diabetic patient should leave the room, whatta?) Im like, frick, lemme breastfeed him to keep him quiet. Then as the endo studies Reubens paper log of bgl's, he begins quizzing Danger Dad about blood sugar readings. Danger Dad has no clue, hes at work at that time... The endo promptly orders DD out of the 'hot' seat and orders me in. Theres a student endo of some sort in the room, whom we are not introduced to, who acts like a mute, and who is staring holes in me with his beady judgemental eyes.
So Im sitting there and it goes like this -
Why did you test then? Cos I was scared he seemed low.
What time was that? Dont know, after lunch could be anytime between 12.30 and 5pm.
What were you looking for? Dunno. Lows. Or Highs.
So he goes to bed at this time, and wakes up at this number, what does THAT tell you? Dunno, draw a blank. Honestly didnt even want to understand the question. I was annoyed.
What did he eat for breakfast, say, yesterday? I have no idea.
And more of the same. For those that havent had a diabetic 8 month old, 10 month old, 1 year old, now feisty and active 20month old.... its really chaotic and tough. Parenthood is tough. Anyone that says different, that its all rewards and no hard slog is a L I A R.
Thats a boldfaced dirty stinking lie. *shaking head* Dont beleive it.
Add in a special need of any sort, Downs, speech difficulties, ASD, PPD, ADHD, Auditory processing, Aspergers, Foetal alcohol syndrome, Epilepsy, other autoimmune issues, its a handful and you all deserve a medal.
And a year long all expenses paid vacation to Hawaii :) However, I cannot help you with that situation lol.
So, I guess what my point is today, is, we are starting to see evidence of lows, other than using a BGL to tell us. Our protocol was to test 3 hourly for Justin.
Justin Case.
If you dont get any idea why your baby is crying, it isnt a nappy or tiredness. He isnt hungry or thirsty, it could be diabetes. Doesnt matter that it doesnt fit into a time slot in the log book. So we would test with such regularity to be S.A.F.E. Mr Endo. SAFE. Jus' keepin my son alive.
Today we went to pick my eldest son up from a playdate and hung out with the sweetest woman I know. I mean shes lovely. We had a chit chat. Shes really pretty, humble and going through some tough times and shes stronger than she knows because shes shouldering a big load. Back to my point, it was like having a conversation in a war zone, according to Danger Dad we had 5 kids running around her lounge room and the family dog being harrassed. I think it aged us all. haha. Reuben begins his whingy behaviour and I say to Danger Dad hes pretty whingey and stacks it a few times....and he played pretty hard this last hour, perhaps hes low?
My hubster runs to the car, gets the test kit. Reuben is 2.9.
He chugs a juice. Then a lolly pop.
Then it hits me. Im starting to see a FEW signs of lows.
Hallelujah!
He sometimes says allaalelelelelah belelelellalalala. When hes not calling the dog, he can be low. And now he whinges and cries and falls over heaps. Perhaps this is the end of our additional testing...
Perhaps we can do breakfast, lunch, dinner, before bed and over night without so much fear.
Without 5 extra tests a day for Justin.
I got a bunch of photos to share that Danger Dad mostly took, and sorting thru them, they are all blurry or faulty... so heres a bit of our life in photos.
My eldest son at a presentation afternoon, where we were invited to hear their speeches. His teacher caught me before school to tell me hes just sailing through his work, and that hes really funny. I guess he didnt get that off me. lol.
Reuben recently, 20 months.
LOVED, LOVED, LOVED the pix Jules. The Endo appt sounded dreadful. Chin up. AND pat yourself on the back. You are doing marvelous...and thank God for some signs of the lows. xoxoxoxo
ReplyDeleteWow, Reuben is already getting big...pretty soon it will be at least easier to tell what is going on with him, as he talks more. Sorry the endo appt was so bad. Thanks for sharing all the pics
ReplyDeleteI feel you.
ReplyDeleteOur appointment in 2 weeks is with the Nurse Practitioner who always tells my daughter to sit still and not interrupt. Even after I explain that we've just driven 200 miles and how can she NOT be rambunctious after being in the car almost 4 hours!
And at our last appointment a fellow (a doctor learning to become an endo) came in first and asked me the stupidest question and I was so seething mad that I tuned out everything he had to say after that.
It's great you are starting to see signs of lows. I can see mood changes in my daughter that are signals for me. As he gets older, he'll be able to tell you.
Hugs!
I remember the days so very well, when I didn't know if my baby was crying for "normal" baby stuff or diabetes. :( It probably won't make you feel a damn bit happier right now, but I'm gonna say it. It gets easier as they get older. And I give myself a guilt trip anytime the endo questions me and I don't have exact answers. I have 3 kids. It gets busy. I can't remember EVERY BG check and EVERY carb he consumes. Our endo understands that, though. The only one in the room looking down on me is... me.
ReplyDeleteI would have walked out of that endo appointment feeling miffed. Know that you're taking excellent care of Reuben. He's thriving because of you.
ReplyDeleteI'm so glad you're beginning to see signs of lows. That will really help you.
I enjoyed looking at all of your photos. Your kids are adorable!
Ugh!! I can't imagine them sending him out of the room!! Our first appointment with our new CDE Bean was high, and thus bouncing off the walls! She played catch with her with a squishy frog (some insulin mascot I found out later) for over an hour while she talked with me.
ReplyDeleteAnd then for them to question you care...you would have been totally justified to slap them in the face!!
That is so awesome that you and Rub are starting to see more signs of lows! Such a relief when that happens. Bean is starting to feel her highs a bit...though she's confusing them with lows, but at least she's tuning in!
Totally cute pictures! Such a sweet family!!
I love the pics of your family - you're beautiful and your children are adorable!
ReplyDeleteStinker to the the endo appt. We've lucked out with our endo office being very child friendly and most times I don't go alone and whomever I take with me is in charge of getting the kiddos out before they start behaving like whackos! I even asked for them to do all the exam on Isaac before they go over logs so that if he starts acting up he can leave rather than just wait around for them to check him over.
I think one of the more difficult things about young children and lows/highs is that it falls more on us parents to observe the changes and put it together, the slightest things like more pale skin, more energetic, falling more (than a usual waddler?!), being clingy...ect. We've also since day one said, "Isaac how do you feel - high, low, or just right?" Then we check show him the numbers and say, "Your blood sugar is _______ let's _____(get some insulin and water, glucose)." He's starting to tell us when he feels low and begs for something to drink when he's high, so maybe it's helped, maybe.
I hope you guys have a lovely weekend :)
Great looking family!
ReplyDeleteI remember the first time seeing those signs of lows too, SO amazing when we can start to figure things out a little bit.
And oh how I remember ALL the testing the toddler to make sure he was just being a pain in the rear rather than high or low.
What a beautiful family! Sorry about the sucky endo appt. I agree test all you want! My son is 8 and we still test 12x a day. The more we test the more we know the safer they are.
ReplyDelete