I Hate Cliches

I Hate Cliches

Watching a slow motion train wreck….
That is what everything with my Middles feels like.
Today I took Middles to our endocrinologist. They drew 6 vials of blood to run a full diabetes panel. They also had him do a glucose tolerance test and checked his  A1C. It will be a week before I know all the blood work results.
According to Middles A1C of 4.3 and his glucose tolerance test (109 fasting start, 170 at 1 hour mark, 130 at 2 hour mark) he does not have diabetes.
However – with the half dozen blood sugar results that were 200+ postprandial (that’s 2 hours after a meal) in the 72 hours prior to visit; combined with frequent urination, increased thirst, stomach aches, chest pain, headaches, leg soreness (not associated with physical activity), positive results for all the antibodies associated with Type 1 and the fact that his 2 siblings already have Type 1 – the Endo believes diabetes is coming. It may be a month, a year, ten years – etc. but it is coming.
My hope – to get Middles into a study (there is one in the San Francisco area) that focuses on slowing if not stopping diabetes in people that are at high risk. Maybe I can divert the train.
As for right now – his numbers today and most of yesterday were all within normal range. Even after eating a personal pan pizza from Pizza Hut (they are addictive and should come with a surgeon generals warning) his blood sugar never went above 142 (we were running late for soccer and they all begged me – don’t judge).
The Endo instructed me to continue to check his blood sugar 2 hours after meals and get a fasting blood sugar each morning. It made me sad to see him “excited” to have his own meter complete with a new style of lancing device Delica – which I tried and am pleased to say it is way less painful than the older model.
I will continue to discourage High Glycemic Index foods high glycemic index foods (sorry no cupcake for you). Again – I want to say that I am normally a “let them eat cake” kinda Dmom but I want to reduce the chances of blood sugar spikes allowing his pancreas to keep plugging along – no need to add stress to an organ that is clearly having a hard time keeping up. The improved diet will likely improve the D control my other two have as well. I have always believed and advocated that people with type 1 diabetes can eat everything people without diabetes can eat BUT that doesn’t mean any of us should be eating some of the crud we put in our bodies (stay the heck away form my Reese’s – they have protein in them).
Thank you everyone for your support during this crazy time for our family. I truly appreciate all the emails, tweets and comments. Thank you God for allowing me to be wrong this time – even if it’s temporarily wrong – if it is coming please let it wait till after the move, after puberty, after college – is there ever an OK time – doubtful.
For now we keep plugging along – I think we can, I think we can, I think we can…..

What Dreams May Come

What Dreams May Come

This morning I woke up and thought the previous 48 hours were a dream. Then I saw the mini meter on my nightstand and Middles sleeping peacefully on the other side of the bed. I so badly wanted it to all be a dream.

I continue to check Middles blood sugars first thing in the morning, before meals and postprandial. Today his numbers did not spike above 149 and he woke up at 93. He was away from me over the lunch period so I could not check and he was not comfortable taking a meter with him to a friends house. He doesn’t want his friends to know until he hears it from a doctor.

I have not allowed him high glycemic index foods. Yes I know people with Type 1 diabetes can eat the cupcake but right now I am going to try my best to limit the fast acting carbs and let his pancreas rest (not giving him insulin yet). I’m trying to avoid the spikes and preserve beta cell function.

If newly diagnosed people go through a “honeymoon” phase I would say Middles is still in the “engagement” phase. I know the storm is coming (although I pray hourly that for the first time in my entire life I am wrong).

Middles fell asleep in my arms last night while lying in my bed with me. He was crying and voicing all his fears. His last words before sniffling himself to sleep were “at least now I get to attend Texas Lions Camp.” Texas Lions Camp is a week long sleep away camp for kids with diabetes. Sweetstuff will be attending for the 3rd time this summer and Sugarboy will go for the first time this year since he is now old enough. The problem is – camp is full. There is a waiting list.

My first prayer is that I am so very very wrong.
If I can’t have that – maybe there will be someway to get Middles into camp.

10 Things THEY couldn’t live without

10 Things THEY couldn’t live without

Day 13 Health Activist Writer’s Month Challenge

Todays prompt is to write a list of the 10 things you need (or love) most. Since this blog is intended to be mostly about being the parent of children with diabetes my list will not be what I need, it will be what they need.

Starting with the obvious:

  1. Insulin – well duh – sorry that was snarky but it is obvious. Without insulin my kids wouldn’t last long even if I put them on the starvation diets used prior to 1922 and the discovery of insulin.
  2. Method of injecting insulin – yes obvious but you would be surprised as to how often my kids or I get asked “isn’t their a pill”. Perhaps the folks asking that have heard that some people with diabetes take a pill to help their body utilize insulin. That is a true statement, I know of a number of people with diabetes or pre-diabetes that are not insulin dependent but my kids are have Type 1 diabetes so a pill will not provide all that their bodies require. Insulin is a protein so it can not be ingested, it would be digested by the stomach and intestines rather than absorbed into the blood to help unlock cells to allow glucose to be burned as energy. To inject insulin one needs an insulin pump or insulin syringes.
  3. Pump paraphernalia – Both my kids are pumping insulin so in addition to needing the actual pump they require insulin cartridges (small reservoirs that are filled with the insulin and housed in the pump). They also need infusion sets – a thin tube that connects to the insulin cartridge inside the pump as well as to a cannula that is inserted into the subcutaneous tissue with a funky UFO looking device (thanks to Kerri S @sixuntilme for the validation of my thoughts). I often imagine beating ignorant individuals (that refuse to be educated) with said tubing.
  4. Glucose Meter – The best way for me to help my kids to avoid future complications is to check (I try not to say ‘test’ as it implies pass or fail) their blood sugars at least 10 times a day (which is what the insurance companies deem appropriate – although my kids generally test about 12 times a day). Thus 4a would be the tiny test strips used to collect the blood sample. I think I read somewhere that the test strips cost about $.10 each to produce but cost $1.00 each (without insurance). Pisses me off.
  5. Fast Acting Carbs – My kids need instant access to fast acting carbohydrates in case of low blood sugars. At any given time my kids will have packages of smarties, fruit roll-ups, juice boxes, glucose tabs, or small tubes of frosting on their person or in their diabetes pack (currently using a case produced by REI intended to hold a handheld game system).

Moving to less obvious but not less important

  1. Hugs – my kids need hugs. They need hugs when their blood sugars are over the rainbow and they are cranky, frustrated and hating diabetes. They need hugs when their blood sugars are plummeted downward taking their ability to function normally with them. They need hugs to celebrate a success. They need hugs when the new infusion site stings like a bitch. They need hugs when an unDeducated (un diabetes educated) person tells them they shouldn’t or can’t do something or eat something – or worse when a narcissistic (although sometimes well meaning) unDeducated person shares the story of how their grandma had to have both legs amputated because of diabetes. They need and deserve hugs for all the times they try.
  2. Laughter – many say (and I agree) it is the best medicine. Finding humor in all that it diabetes makes it sting less. My sweetness has only recently begun to understand the humor in me saying in public “you better be high with your attitude” (not sure if that is a good thing). We make note of the times the kids are bstwins (both check to find the same exact number – happens more than you might guess). We draw eyes and scales on the little twisty paper that protects the adhesive on the infusion sets, meet George George . We giggle that Sugarboy never fails to have to go pee just as I am about to squeeze the sides of the quick set to place an infusion set. There is opportunity for laughter everywhere and we take advantage of it.
  3. Food – ok so this one is obvious too, however I don’t mean it in its most basic sense. I mean that my kids can eat everything their peers can. I know just because they can doesn’t mean they should and so I do try to limit the foods that will cause an ugly number. I let my kids go trick-or-treating and bring home pillow cases full of wonderful. (I actually encourage it – how else am I going to get a two months supply of Reese’s peanut butter cups?) The thing about all the holidays that involve candy candy and more candy is they forget about it after about a week. We put all the candy in a large container and the kids can choose a piece or two each day. This lasts about a week – I move the container slowly from a clearly visible spot to a less and less visible spot as the week goes on. By the end of the week the container is relegated to the top shelf of the pantry. It will stay there until the next holiday usually. We eat cake at birthdays and stop at Baskin Robbins a couple Tuesdays a month (kids cones only $1). I still make potatoes, rice and pasta but try to limit it to only a quarter of their dinner plate. We don’t use food as a reward or a punishment. Food is food and I don’t see the point in giving it any additional role.
  4. Diabetes Camp – This one truly should be part of the obvious as well. My kids (all three of them because diabetes effects siblings too) attend a day camp each summer called Camp Bluebonnet – Children’s Diabetes Camp of Central Texas. It is a week of fun in the sun (gets to be above 100 degrees here), laughing and learning with other children with diabetes, finding the courage to scale tall rock walls and fly down zip lines in the blink of an eye, playing in mountains of foam, competing in silly games that more times than not include dawning over sized clothing soaked in ice water. It is a week of feeling normal and meeting new besties. My daughter also attend Texas Lions Camp – a week long sleep away camp about 3 hours from our home. She will tell anyone and everyone that the weeks she has spent at TLC are the very best weeks of her life. I am a nervous wreck those weeks – playing a game of ‘wheres waldo’ while searching the 300+ photos that the camp posts on FB each day just for a glimpse of my Sweetness. This year my Sugarboy is old enough to also attend – I may start drinking that week.
  5. Friends – we all need friends and my kids are fortunate enough to have a few that aren’t just friends. They are other children with diabetes that ‘get them’. They also each have a few non-D friends that also get them and can identify a low or high blood sugar sometimes before my kids can feel it themselves. We love those friends.

So there it is the list of 10 things my kids need most – the second set of 5 meet my needs too.