If I recall today one year ago, we got up at the crisp crack of dawn, one day out from the start of winter so we could get back to the hospital.
My heart was literally breaking like the dawn I so dreaded and craved as the black of night slipped away and the first day of the rest of our lives began.
I had taken Reubens little pajamas which smelled vividly of ketones and placed them on my pillow, while I sent out panicked prayers as I drifted in and out of sleep back home. Meanwhile he had spent the night in the paediatric intensive care unit attached to tubes and drips and monitors. He was assigned a nurse who sat by his bedside the entire night, monitoring his vitals, my tiny sick baby. We werent allowed back inside immediately because they had to re-do his IV. Eek. The place was harder to get into than Alcatraz was to get out of - with locking doors, cameras, security speakers and pin codes. Between my baby and I were huge white walls, stark swinging doors and nurses more stern than burly bouncers at a pub brawl.
When I saw him that morning if my heart wasnt broken thoroughly already, it surely broke now.
He was limp and thin. And entirely exhausted.
This illness is autoimmune, these unruly cells that were supposed to attack foreign bodies and help him out, failed him. Instead, getting a penchant for fighting friends, turned on his good cells and his ability to make his own insulin to process his sugars, now a thing of the past :( Like a crappy flatmate, packing its bags without notice, leaving you in an empty house, to clean up, to foot the expenses and face the landlord alone.
The Endos and Diabetes Eds came in crowding around his bed. I had no idea if I would ever see these people again, but they were all interested in me telling our story over and over. The virus, the gastro, the weightloss, the sleepless nights and the funny 'smell'. They asked questions as they peered at my baby laying lifelessly on the bed, things like time frames - how long had he been sick? Did I give breast milk or formula?
I felt guilty truly I did, initially I felt like I had harmed my baby because of their rapid fire questions.
Theres real healing in talking about those days. The salve of being heard. Of being understood. A friend who 'gets it' saying, yup I know it truly sucks. Thankyou DOC.
Thankyou that you validate me and say to me, yup this is hard. Diabetes SUCKS!
Or Diabetes is a big fat turd. (Thankyou Reyna and Joe from Beta Buddies).
Or hearing Sugar coat all you like. When I prick my kids finger, I see blood. Not F-ckin glitter. (Thankyou Alexis from Justice's Misbehaving Pancreas).
Theres some awesomeness in the DOC. I love when I read things like-
Denise's Ubergeek (From My sweet bean and her pod) can communicate in a 'your pancreas skills suck at the moment' kind of tone.
And in Sarahs world (The Ethan and Isaac Show) she also has to say obvious things to a Dr. like my youngest was diagnosed with type 1 diabetes at 19 months and it's a little more complicated than just finding a babysitter.
Or when Alans (From Two Organs Short) at work and gets those calls- Everyone I work with is used to the calls: "he's high", "he's low", "he's pulled his site out", "another kid pulled his site out".
From over at Diapeepee's - Roseladys dia-poetic abilities made me laugh out loud - I can count carbs in a box. I can count them in my socks. I can count them here or there. I can count them anywhere.
And truth is definately stranger than fiction over at D-Tales. Heidi discusses Dexcom going swimming and sitting in rice, all with accompanying pics.
Im not alone!! I cannot say it any better than when Melissa (From My Corner) said I sit nodding in agreement, crying in the pain shared and strangely comforted by others need to vent.
Thanks everyone, theres literally too many to mention in one day but you guys rock!! I do nod, laugh, cry and feel comforted and like a part of something bigger than myself and Reubens Diabetes.
Speaking of rocks, check out this awesome post by Wendy of Candy Hearts.
***
Freaking blogger acting up, I had to put the links in all dodgy sorry, it just wouldnt take them any other way and I really had to link to your fabulous blogs xx.
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Tuesday, May 31, 2011
Monday, May 30, 2011
365 days of diabetes
Today is 1 year.
1 year of living with type 1 diabetes.
Today is 1 year of learning about type 1 diabetes.
Today is Reubens first full year of being a type 1 Diabetic.
It has passed in a flash. A heart beat ago, he was diagnosed. The Dr looked me in the eye over the hospital bed in the ER and said, 'Theres something you have to know, your son has Diabetes'....
My mind was truly blank. I didnt know what that meant. Shock and ... well ... ignorance.
A nurse came by and gave me a pad and pen. She said write down any questions you have. The paper stayed blank. Instead I asked them for a 'manual'. Like taking home a new appliance you dont know how to operate. How could I no longer know how to look after my own son? But thats how I learn best. A highlighter pen. Post it notes. Scribbles in the margin.
While whisking him up to Intensive Care I recall thinking this is bad. But a blurry bad. I saw him so sick from high blood sugars that I never want to see him there again. I saw how he became himself smiling and happy within a week. DKA a memory. The contented baby he was, once he got insulin and rehydrated.
I had to accept it. The insulin was what he needed.
Like I said we are learning. As he grows it all changes. Almost weekly. What we thought we knew about his management has been superseded. Again and again. When we know better - we do better.
Bringing my newly diagnosed baby home with a bag of needles, insulins, a log book and blood glucose meter was one of the most daunting experiences of my life. I remember the hurdles.
At the Diabetes shop, asking for the shopping list of supplies for my newly diagnosed son, eyes stinging with holding back tears. I have to have a what? A sharps container?
And again when the optium exceed errored and I would have to re-prick and re-squeeze to get more blood. I hated do-overs. I remember the squirming baby that would try and avoid the needles in his soft bottom. The awful days when he squirmed so much you could see droplets of insulin all over his bottom and you just KNEW it was going to be a bad day because he didnt get the full dose. The flailing infant with low blood sugar who refused to take any sugar. I remember the unsure parent who over treated hypos from fear. Who rang the endo to see if we should check for ketones. Who couldnt recall if it was clear or cloudy insulin to be drawn into the syringe first. Who didnt know the difference between the carbs.
Weve come a long way. Theres been a huge amount to learn. Theres still heaps more to learn.
There wasnt any choice but we have to embrace this new life.
And on into the second year. Acknowlege the first was hard...yes. But we've had alot of fun. Reubens a great kid with awesome siblings.
These photos were a few months back, Aunty Bernie arranged to take us to an indoor Old McDonalds Farm. Of course the kids loved it.
Yes my eyes are shut. They always are in pics. Sorry.
Diabetes doesnt stop you trying to ride a goat!!
All 3 of my lovely kids.
Thats it, Reuben, gentle!
Reubs and sheepy action shot.
Happy diaversary my tough little man.
You are calm and peaceful.
1 year of living with type 1 diabetes.
Today is 1 year of learning about type 1 diabetes.
Today is Reubens first full year of being a type 1 Diabetic.
It has passed in a flash. A heart beat ago, he was diagnosed. The Dr looked me in the eye over the hospital bed in the ER and said, 'Theres something you have to know, your son has Diabetes'....
My mind was truly blank. I didnt know what that meant. Shock and ... well ... ignorance.
A nurse came by and gave me a pad and pen. She said write down any questions you have. The paper stayed blank. Instead I asked them for a 'manual'. Like taking home a new appliance you dont know how to operate. How could I no longer know how to look after my own son? But thats how I learn best. A highlighter pen. Post it notes. Scribbles in the margin.
While whisking him up to Intensive Care I recall thinking this is bad. But a blurry bad. I saw him so sick from high blood sugars that I never want to see him there again. I saw how he became himself smiling and happy within a week. DKA a memory. The contented baby he was, once he got insulin and rehydrated.
I had to accept it. The insulin was what he needed.
Like I said we are learning. As he grows it all changes. Almost weekly. What we thought we knew about his management has been superseded. Again and again. When we know better - we do better.
Bringing my newly diagnosed baby home with a bag of needles, insulins, a log book and blood glucose meter was one of the most daunting experiences of my life. I remember the hurdles.
At the Diabetes shop, asking for the shopping list of supplies for my newly diagnosed son, eyes stinging with holding back tears. I have to have a what? A sharps container?
And again when the optium exceed errored and I would have to re-prick and re-squeeze to get more blood. I hated do-overs. I remember the squirming baby that would try and avoid the needles in his soft bottom. The awful days when he squirmed so much you could see droplets of insulin all over his bottom and you just KNEW it was going to be a bad day because he didnt get the full dose. The flailing infant with low blood sugar who refused to take any sugar. I remember the unsure parent who over treated hypos from fear. Who rang the endo to see if we should check for ketones. Who couldnt recall if it was clear or cloudy insulin to be drawn into the syringe first. Who didnt know the difference between the carbs.
Weve come a long way. Theres been a huge amount to learn. Theres still heaps more to learn.
There wasnt any choice but we have to embrace this new life.
And on into the second year. Acknowlege the first was hard...yes. But we've had alot of fun. Reubens a great kid with awesome siblings.
These photos were a few months back, Aunty Bernie arranged to take us to an indoor Old McDonalds Farm. Of course the kids loved it.
Another poor goat avoiding a tackle.
My daughter who I think will work with animals one day.
Happy diaversary my tough little man.
You are calm and peaceful.You are strong and resilient - you endure without fight.
You are fun and have a great sense of humour.
You did nothing to deserve this disease and had no choice.
But Im grateful you are such a wonderful patient child.
Wise beyond your years and just a great little person.
Of whom I am terribly proud and protective.
You are teaching us much about family, love and perserverence.
We will manage this fight together until there is a cure.
Love you very much, munchkin xx.
Saturday, May 28, 2011
When blogger acts up
What do you do when blogger is being temperamental.
Really.
Theres blogs to read. Theres comments to post. Theres ideas to post. Theres stats to look at that are, frankly awesome to take a gander at.
My life doesnt change knowing that someone from Slovakia viewed my blog today, but maybe reading my blog changed the life of that person, or their child with diabetes...
What hits me is, that Im trading in some of my privacy, for the sake of the DOC. When the enormity of the World Wide Web hits you, its like...whoooaaaa. Theres a community of people who log in, all over the world, the UK, Australia, USA, Canada, New Zealand. We are craving company and a sense of 'sameness and 'uh huh' and 'i understand' 'i know what you mean'.
The most frequently viewed page on my blog is actually Reubens diagnosis story. I get a quick snapshot of the things people typed in to 'find' my blog on google. Amongst those things are questions like,
"Can babies get diabetes?"
"Symptoms of diabetes"
"Babies with type 1?"
"Cure for type 1"
"My baby is weeing alot"
I mean, perhaps what I write may not make a lifelong friendship in some cases, but could be helpful. To someone. Somewhere. So despite sometimes thinking, who could possibly want to read about our life with diabetes? Im going to keep on !
2 more days until Reubens 1 year anniversary with diabetes. A friend asked me how we were doing. My answer surprised me.
Really.
Theres blogs to read. Theres comments to post. Theres ideas to post. Theres stats to look at that are, frankly awesome to take a gander at.
My life doesnt change knowing that someone from Slovakia viewed my blog today, but maybe reading my blog changed the life of that person, or their child with diabetes...
What hits me is, that Im trading in some of my privacy, for the sake of the DOC. When the enormity of the World Wide Web hits you, its like...whoooaaaa. Theres a community of people who log in, all over the world, the UK, Australia, USA, Canada, New Zealand. We are craving company and a sense of 'sameness and 'uh huh' and 'i understand' 'i know what you mean'.
The most frequently viewed page on my blog is actually Reubens diagnosis story. I get a quick snapshot of the things people typed in to 'find' my blog on google. Amongst those things are questions like,
"Can babies get diabetes?"
"Symptoms of diabetes"
"Babies with type 1?"
"Cure for type 1"
"My baby is weeing alot"
I mean, perhaps what I write may not make a lifelong friendship in some cases, but could be helpful. To someone. Somewhere. So despite sometimes thinking, who could possibly want to read about our life with diabetes? Im going to keep on !
2 more days until Reubens 1 year anniversary with diabetes. A friend asked me how we were doing. My answer surprised me. "Reuben is doing wonderfully. We're learning heaps. We've accepted its (diabetes) is not going away."
Yep. He is. Yep we are. And yep again. Its a trifecta, it sure aint going away. This is our new life.
Bring on the artificial pancreas!!
Friday, May 27, 2011
The week that was
The only way I can describe this week is OH MY GOD.
A Chest x-ray, funeral, endo appointment, ambulance. I have had more than enough excitement and would love some quiet time over the weekend.
Let me clarify, the chest xray was for me for a cough that hasnt resolved in 3 months. I got the all clear on the lungs and heart, no idea whats up, just a lingering cough after a flu I guess. The funeral was for my husbands Aunty who passed away tragically too young. I couldnt attend because someone had to watch the children. (thats me, kid watcher extraordinaire). The endo appointment (see previous post) went well.
Now Ive cleared those up...the ambulance.
So I went to the dr to ask for some antidepressant and anxiety medication. I walk out with Citalopram. (Celexa). Dosage was 20mg once a day. What follows is a comedy of errors, though I laughed very little during. The first 24 hours I yawn non stop - to the point where I follow my feet to the bedroom and lay zonked out for a few hours. Im so nauseous and sick, I feel pregnant! A much needed rest, yes, bad for caring for a diabetic child! Luckily Danger Dad was home that day.
The following day I begin developing whats probably the first real migraine headache Ive had in my life! I get aches, pains, fever. Then as the night wears on I have complete insomnia. Restless legs. Pins and needles then burning and itching skin!! Hot and cold races up and down my nerves in my neck and head. OMG. I thought I was going to die when I got dizzy, racing heart, throat got totally dried and began closing up. THEN... full blown panic attack..
Apparently this is all normal going onto the drug and coming off it. Let me just say, that I dont feel ready to try again! Ive stopped the tablets as that drug reaction was almost worse than child birth.
Reuben is doing well. He starting saying 'outside'...which is his favourite place in the world. I will take his lead and go get sunshine and fresh air today also.
Ive not been able to comment on your blogs, something up with blogger?
A Chest x-ray, funeral, endo appointment, ambulance. I have had more than enough excitement and would love some quiet time over the weekend.
Let me clarify, the chest xray was for me for a cough that hasnt resolved in 3 months. I got the all clear on the lungs and heart, no idea whats up, just a lingering cough after a flu I guess. The funeral was for my husbands Aunty who passed away tragically too young. I couldnt attend because someone had to watch the children. (thats me, kid watcher extraordinaire). The endo appointment (see previous post) went well.
Now Ive cleared those up...the ambulance.
So I went to the dr to ask for some antidepressant and anxiety medication. I walk out with Citalopram. (Celexa). Dosage was 20mg once a day. What follows is a comedy of errors, though I laughed very little during. The first 24 hours I yawn non stop - to the point where I follow my feet to the bedroom and lay zonked out for a few hours. Im so nauseous and sick, I feel pregnant! A much needed rest, yes, bad for caring for a diabetic child! Luckily Danger Dad was home that day.
The following day I begin developing whats probably the first real migraine headache Ive had in my life! I get aches, pains, fever. Then as the night wears on I have complete insomnia. Restless legs. Pins and needles then burning and itching skin!! Hot and cold races up and down my nerves in my neck and head. OMG. I thought I was going to die when I got dizzy, racing heart, throat got totally dried and began closing up. THEN... full blown panic attack..
Apparently this is all normal going onto the drug and coming off it. Let me just say, that I dont feel ready to try again! Ive stopped the tablets as that drug reaction was almost worse than child birth.
Reuben is doing well. He starting saying 'outside'...which is his favourite place in the world. I will take his lead and go get sunshine and fresh air today also.
Ive not been able to comment on your blogs, something up with blogger?
Wednesday, May 25, 2011
WooHoo
I sat in the doctors office, shaking me knee, chewing my nails, nervously fiddling with my hair and pretending to be overjoyed by Reubens block creations. Could my outfit need adjusting again? What is Reubens blood sugar? Did I pack enough quick acting sugar? Did the hypo come up? Do I have cash for lunch? Did I leave the washing machine on? Are my keys in my bag? A million thoughts. All the time, everyday. My mind is always busy like this. I need some peace.
Tentatively I filled out the patient forms and waited. Eyeing the receptionist I wondered if she noticed my red puffy eyes from crying all morning.
Im sick of ringing Danger Dad at work and offloading on him, about how 'hard' everything is.
I hate admitting I need help but at his point, with things so heavy, I just do. Admitting that to myself was hard. Asking the Dr for help was harder. I blurted out how overwhelmed I am, and began crying.
She didnt hesitate. 1 minute and it was done, I had a script in my hand and I was leaving the surgery. It was easy, but the decision had taken me almost 4 years. Living with anxiety and depressive episodes can be hard. Especially with pregnancies and babies in between. And myriad other stressful episodes in my personal life.
I think Danger Dad will give you an aye on that one! I thought I could handle things on my own. I really did try with St Johns Wort, and B vitamins, Spirulina. Sometimes I had relief.
I worried about stigma, what did this mean about me, that I was weak? Why the lack of help given through counselling - was my problem too hard? Then questions of how will I feel, will I lose who I am, will I still feel things, how hard is it to come off them.
I feel for my kids sake its worth a whirl. They deserve a calmer Mummy. One who enjoys them and is relaxed, not clenching her jaw all the time, stressed to the eyeballs and pulling her hair out, and worrying
about everything...
about nothing...
all at once.
Yesterday was another first. We saw a female endo. She was awesome we discussed using a continuous glucose monitor for a week to get real time info to see whats going on with Reubens blood sugars. Awesome. We will be focussing on his waking numbers trying to get the insulin to match his overnight breastfeeding a little better, today he woke up at 4.8, not bad. She also suggested a loaner pump before taking the plunge see how we do, and how Reuben tolerates the cannula and insertion and carrying the thing on his person. The other big news....
hba1c - 7.8%
Nuf said.
Woo freaking hoo!!! Things are looking up in more ways than one!
That is all for today hope everyone in D-Land is good xx.
Tentatively I filled out the patient forms and waited. Eyeing the receptionist I wondered if she noticed my red puffy eyes from crying all morning.
Im sick of ringing Danger Dad at work and offloading on him, about how 'hard' everything is.
I hate admitting I need help but at his point, with things so heavy, I just do. Admitting that to myself was hard. Asking the Dr for help was harder. I blurted out how overwhelmed I am, and began crying.
She didnt hesitate. 1 minute and it was done, I had a script in my hand and I was leaving the surgery. It was easy, but the decision had taken me almost 4 years. Living with anxiety and depressive episodes can be hard. Especially with pregnancies and babies in between. And myriad other stressful episodes in my personal life.
I think Danger Dad will give you an aye on that one! I thought I could handle things on my own. I really did try with St Johns Wort, and B vitamins, Spirulina. Sometimes I had relief.
I worried about stigma, what did this mean about me, that I was weak? Why the lack of help given through counselling - was my problem too hard? Then questions of how will I feel, will I lose who I am, will I still feel things, how hard is it to come off them.
I feel for my kids sake its worth a whirl. They deserve a calmer Mummy. One who enjoys them and is relaxed, not clenching her jaw all the time, stressed to the eyeballs and pulling her hair out, and worrying
about everything...
about nothing...
all at once.
Yesterday was another first. We saw a female endo. She was awesome we discussed using a continuous glucose monitor for a week to get real time info to see whats going on with Reubens blood sugars. Awesome. We will be focussing on his waking numbers trying to get the insulin to match his overnight breastfeeding a little better, today he woke up at 4.8, not bad. She also suggested a loaner pump before taking the plunge see how we do, and how Reuben tolerates the cannula and insertion and carrying the thing on his person. The other big news....
hba1c - 7.8%
Nuf said.
Woo freaking hoo!!! Things are looking up in more ways than one!
That is all for today hope everyone in D-Land is good xx.
Monday, May 23, 2011
*warning* pity party going on inside.
Tomorrow we go back to the hospital for the endo appointment they scheduled for 6 weeks following the last.
I still havent gotten over the last endo appointment. (see previous post). The thought of it makes me cry and Im completely anxious. Been grinding my teeth and having panic attacks. I really dont think I can handle it. I begged my husband to go with Reuben on his own because I simply cannot face it without a nervous breakdown and he declined. Why cant a man just respond to a woman who is obviously distressed and in need of his help? I couldnt ask him for his help the way I need and want it any more clearly. Im really disappointed. He even takes a day off work for the appointments, I dont see the problem and this distresses me even more. I figure if he loved me he would step up. I figure if he was really listening to me, and knowing what was going on with me, he would. If he wanted a wife who felt validated, secure and calm. He would. I feel completely alone this morning.
Early this morning we drove to the diabetes shop to get supplies, hundreds of strips and needle tops and syringes. A raffle they were running is being drawn on 31st May, Reubens first day on insulin, living as a type 1. A diabetic baby. One year ago. Our life changed beyond recognition. I am changing beyond recognition. I have no idea who I am anymore, where we are headed. I feel I have no dreams, nothing to look forward to, nothing I enjoy.
Today I have a dr's appointment. Im going to ask the dr about taking anti-depressents. Being constantly tired, overwhelmed, angry, disappointed, struggling.
Too much for one mumma.
I still havent gotten over the last endo appointment. (see previous post). The thought of it makes me cry and Im completely anxious. Been grinding my teeth and having panic attacks. I really dont think I can handle it. I begged my husband to go with Reuben on his own because I simply cannot face it without a nervous breakdown and he declined. Why cant a man just respond to a woman who is obviously distressed and in need of his help? I couldnt ask him for his help the way I need and want it any more clearly. Im really disappointed. He even takes a day off work for the appointments, I dont see the problem and this distresses me even more. I figure if he loved me he would step up. I figure if he was really listening to me, and knowing what was going on with me, he would. If he wanted a wife who felt validated, secure and calm. He would. I feel completely alone this morning.
Im behaving really out of character, this morning lost it twice before 9am. My daughter was being super naughty, then when I dropped her off at kindergarten the little girls were being mean to her. Im normally conservative and quite level headed. But this new post-diabetes ME...flips out. ALOT.
Early this morning we drove to the diabetes shop to get supplies, hundreds of strips and needle tops and syringes. A raffle they were running is being drawn on 31st May, Reubens first day on insulin, living as a type 1. A diabetic baby. One year ago. Our life changed beyond recognition. I am changing beyond recognition. I have no idea who I am anymore, where we are headed. I feel I have no dreams, nothing to look forward to, nothing I enjoy. Too much for one mumma.
Saturday, May 21, 2011
Conversations in a war zone
When we were last at our endo appt I was made to feel like an idiot. Or I just felt like an idiot. I was tired. I got offended and just clammed up. Not a great idea folks. I really do feel like your relationship with your endo's should be smooth and amicable and one of give and take. I am too tired to put up with cr@p. Really, from anyone.
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.
My Motley Crue. The smallest is my Type 1.
Reuben hanging out in his Sisters room. This is where all the Thomas the Tank Engine DVD's get played.
Diabetes doesnt stop you being happy and healthy. Read my lips.... Im adorable and I know it.
IM NOW A BIG BOY. Bugger the high chair, thats for b a b i e s. ...
Testing central. 
My eldest and middle children and me (eek) before his disco. 
Danger Dad strikes again!
This one is slightly better.
Reubs knows his big bro rocks :)
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.
Friday, May 20, 2011
No cupcake for you!
So right now were are at kinder musik. My daughter is in her class and reuben and I are waiting in a playroom for her. On the way in we were offered a cupcake. I allowed josephine a cupcake. It was small... But I said no reuben wasn't allowed a cupcake. His bgl was 8.1 I gave him an apple instead. One cupcake wasnt worth the spike.
Question , should I say no to jo jo as well?
Question , should I say no to jo jo as well?
Thursday, May 19, 2011
no unicorns..no rainbows...but wait there is lollipops
We have had so many insulin regimes my head spins. We were on Novorapid/Levemir, Then Protophane/Novorapid/Levemir, Then Lantus/Novorapid, Then back to Novorapid/Levemir, Then back to Protophane/Novorapid/Levemir. 5 changes in a year thats like only 8 weeks on each regime... ergh.. I just want some stablity!
We are going through some toddler issues, and they relate to his diabetes, I dont see how you can compartmentalise it and say it just comes down to needles and doses and carb counting.
For us its complicated.
He wont sit still for starters. He delights in saying NO! He knows what you are asking him and he deliberately does the opposite. He climbs up on dangerously high things. He like ridiculously sharp pointy things and manages to find them. Reuben doesnt eat consistently with ANY regularity or pattern. One day he will eat something and the next he just flat out refuses. He refuses spoon feeding.
Going out then becomes difficult because you have to carry the hypokit with supplies he will take. So it turns into a bag FULL of chocolate, biscuits, crackers, lollipops, gel, different juices, a lucozade incase we cant get him to take the volume required to treat a hypo. Its not fun or easy taking him anywhere with me. He delights in playing with his food. He loves to feed it to the dog. He likes to jam small things into draws and jars and holes. He loves the drama of swiping his full bowl onto the floor and exclaiming "OH NO!" "UH OH!" He loves to draw and paint on walls... with food stuffs.
We go to the endo on Tuesday. For another HbA1c. Im spending a portion of each day crying over diabetes. I hope I flick a switch at some point and become 'undepressed'. I had to take an injury break from the gym, which didnt help, and I gained back some weight Im really keen to lose. I dont see how I can be positive and giving to my husband and kids when Im feeling crappy on the inside myself. I wish the reality of where Im at was better.
I wish I had help.
Truly I was in denial for a good while. I wish I was back there in denial-land sometimes. I wish I was back there pre-diabetes and appreciated each and everyday with passion. Anyone NOT living with chronic illness in their lives has nooo idea.
Monday, May 16, 2011
Someone needs to invent
Test strips that bin themselves.
We have them everywhere. Seriously...every.freaking.where. Before scooting off to the gym I hunted For a bobby pin for my hair real quick. No joy. Used test strips? Hells yeah. Zillions. In bizarre places like my glasses case, underwear draw and coffee mug. And don't forget the corner of the toilet behind the door. Weird how they migrate from testing central like a pack of synergistic geese. Chalking up tomorrows agenda....
Vaccuumaid up all unruly used test strips.
We have them everywhere. Seriously...every.freaking.where. Before scooting off to the gym I hunted For a bobby pin for my hair real quick. No joy. Used test strips? Hells yeah. Zillions. In bizarre places like my glasses case, underwear draw and coffee mug. And don't forget the corner of the toilet behind the door. Weird how they migrate from testing central like a pack of synergistic geese. Chalking up tomorrows agenda....
Vaccuumaid up all unruly used test strips.
Saturday, May 14, 2011
WEEEEEEEEEEEEeeeeeeeeeeeeee!!!!!!!!!!
I know the look now. Its so obvious the cogs are turning I can almost hear them, and his eyes are actually glistening.
Danger Dad has a brilliant idea.
He has had pneumonia for a fornight. After countless trips to the dr and a chest xray and blood tests, its a serious deal and he must rest. Im lumped with a big workload and then some. DD home for 2 whole weeks.
I know hes gotta rest, we go buy him a 50" tv for the bedroom. After a full week and worsening condition, the dr gives him different antibiotics and he seems to be on the mend.
Now on to the 'glistening eyes'. He must be recovering, hes got a brilliant idea. It involves dangerous activity and the kids squealing with delight. The TV came in a big-ass box. Its so freaking big if Danger Dad cuts it up, and tapes it down our purely steep vertical internal staircase, its an instant slide.
Its so steep and fun it rivals a trip to seaworld or dreamworld. I think we could charge the neighbourhood kids for a ride!
Im at the top of the staircase (freaking out as usual - call me a kill joy but I always see the RISK.)
They start out sliding down on a cushion. They transition to slippery pants, then an inflatable swimming ring. (Good Lordy).
My real concern was the impact at the bottom, which saw Reubs thrown half a meter on landing. Theres ensuing squeals of delight as he zooms down the entire staircase on the wiggles floatie ring and gets pelted onto the bean bags and cushions piled up on the landing. I have to say for a sick man, Danger Dad did really well keeping the kids occupied while I played with my Mr T Flavorwave Oven. (hyahaha, yah I know I know) Im a kitchen gadget junkie.
There should be some award for the most fun, yet dangerous dad in the southern hemisphere, Im sure MY Danger-Dad would win :)
Danger Dad has a brilliant idea.
He has had pneumonia for a fornight. After countless trips to the dr and a chest xray and blood tests, its a serious deal and he must rest. Im lumped with a big workload and then some. DD home for 2 whole weeks.
I know hes gotta rest, we go buy him a 50" tv for the bedroom. After a full week and worsening condition, the dr gives him different antibiotics and he seems to be on the mend.
Now on to the 'glistening eyes'. He must be recovering, hes got a brilliant idea. It involves dangerous activity and the kids squealing with delight. The TV came in a big-ass box. Its so freaking big if Danger Dad cuts it up, and tapes it down our purely steep vertical internal staircase, its an instant slide.
Its so steep and fun it rivals a trip to seaworld or dreamworld. I think we could charge the neighbourhood kids for a ride!
Im at the top of the staircase (freaking out as usual - call me a kill joy but I always see the RISK.)
They start out sliding down on a cushion. They transition to slippery pants, then an inflatable swimming ring. (Good Lordy).
My real concern was the impact at the bottom, which saw Reubs thrown half a meter on landing. Theres ensuing squeals of delight as he zooms down the entire staircase on the wiggles floatie ring and gets pelted onto the bean bags and cushions piled up on the landing. I have to say for a sick man, Danger Dad did really well keeping the kids occupied while I played with my Mr T Flavorwave Oven. (hyahaha, yah I know I know) Im a kitchen gadget junkie.
There should be some award for the most fun, yet dangerous dad in the southern hemisphere, Im sure MY Danger-Dad would win :)
Wednesday, May 11, 2011
Suffering
I have major diabetes burnout. Im just taking each day as it comes and dealing with diabetes promptly and respectfully. Truthfully i need a big ass break.
Feeling immensely sad about the 1 year since diagnosis.
Sad that my last childs babyhood is almost a memory and Ive wasted a year worrying about his chronic illness rather Than enjoying Him.
On a downer. ..Sorry.
Feeling immensely sad about the 1 year since diagnosis.
Sad that my last childs babyhood is almost a memory and Ive wasted a year worrying about his chronic illness rather Than enjoying Him.
On a downer. ..Sorry.
Sunday, May 8, 2011
Wednesday, May 4, 2011
up at 3am
Look Im up at 3am. No biggie right? We all get up sometimes. During. Those. darkest. Hours. so You get up to pee? Im up agonising over another needle in his tHigh. Yeah he cannot sleeping without Pricks n jabs. I need to decide while im half asleep just How much insulin i need to give him. I have sleep in my eyes. A headache from broken sleep. Knots in my stomach. Dry mouth. Racing chest. Racing brain.
i worry and second guess my chosen dose. I even retest to be sure.
Hes dependent on me Being up like this. Being his pancreas.
Being afraid for him...knowing all too well the risks of this drug i am in charge of administering.
Tonight i stay awake to see What the correction dose has done. Lets be honest.
Insulin can and does become lethal.
I encourage You to head over to beta buddies If You Havent already as Reyna blogged more eloquently Than i could. Love You! also do read the princess and the pump.
I get angry When diabetes is trivialised. Its a scary awful grind. No choice. Hour to Hour. Day by day. Needle to Needle. Test to test. Theres no cure. Just life support in the form of a stinky drug and Loving families.
The fact is People die from diabetes.
i worry and second guess my chosen dose. I even retest to be sure.
Hes dependent on me Being up like this. Being his pancreas.
Being afraid for him...knowing all too well the risks of this drug i am in charge of administering.
Tonight i stay awake to see What the correction dose has done. Lets be honest.
Insulin can and does become lethal.
I encourage You to head over to beta buddies If You Havent already as Reyna blogged more eloquently Than i could. Love You! also do read the princess and the pump.
I get angry When diabetes is trivialised. Its a scary awful grind. No choice. Hour to Hour. Day by day. Needle to Needle. Test to test. Theres no cure. Just life support in the form of a stinky drug and Loving families.
The fact is People die from diabetes.
Monday, May 2, 2011
Sweet dreams
Considering one of my main issues lately has been sleep , or lack thereof - Im pretty pleased with the night time Levemir numbers.
It seems the supper that hes getting is somewhere between 150-200mls of milk given during the period that Levemir is starting to peak. Crazy how this 'flat' insulin actually has a working phase - it peaks in Reuben around the 3 hour mark, then is holding him steady throughout the night, (with a usual 3mmol/l range drop from the last night read) and wears off early morning. Mostly if he is under 8 mmol/l he will continue dropping. If he is 8-12mmol/l at the bedtime reading he will hold. Lately Ive seen 10's just working off his own appetite so thats awesome, no force feeding at bedtime.
Daytime today we went to the park as a family and what do you know? Hypo as we arrive at the park. I glance back to where Reubs is strapped into his car seat and hes drowsy. Dropping off in a baby is normal, grogginess in my type 1 son isnt good. He really cannot afford to have the aggressive Protaphane (aka Humulin NPH etc.) working hard at this time, be asleep for 2 hours (and unplanned napping) means he wont have the carbohydrates onboard to deal with this. He was 3.5mmol thankfully, without symptoms, because that unsettles me for a long time following. I hate waking my baby son when he wants a sleep, but its safety first.
The point of this post is that Im going to try laying him down tonight in his toddler bed as long as hes in a good range at bedtime, with only a 2.30am test! Wish me luck Im not going to lie Im TERRIFIED.
Also, counting down to the 1 year diaversary. 28 more days. Diabetes freaking sucks. :(
It seems the supper that hes getting is somewhere between 150-200mls of milk given during the period that Levemir is starting to peak. Crazy how this 'flat' insulin actually has a working phase - it peaks in Reuben around the 3 hour mark, then is holding him steady throughout the night, (with a usual 3mmol/l range drop from the last night read) and wears off early morning. Mostly if he is under 8 mmol/l he will continue dropping. If he is 8-12mmol/l at the bedtime reading he will hold. Lately Ive seen 10's just working off his own appetite so thats awesome, no force feeding at bedtime.
Daytime today we went to the park as a family and what do you know? Hypo as we arrive at the park. I glance back to where Reubs is strapped into his car seat and hes drowsy. Dropping off in a baby is normal, grogginess in my type 1 son isnt good. He really cannot afford to have the aggressive Protaphane (aka Humulin NPH etc.) working hard at this time, be asleep for 2 hours (and unplanned napping) means he wont have the carbohydrates onboard to deal with this. He was 3.5mmol thankfully, without symptoms, because that unsettles me for a long time following. I hate waking my baby son when he wants a sleep, but its safety first.
The point of this post is that Im going to try laying him down tonight in his toddler bed as long as hes in a good range at bedtime, with only a 2.30am test! Wish me luck Im not going to lie Im TERRIFIED.
Also, counting down to the 1 year diaversary. 28 more days. Diabetes freaking sucks. :(
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