Wednesday, April 29, 2015

Where the ceiling meets the wall

It's been two weeks since my last post.  Life has been "normal".  Both boys have had highs and lows and been in range.  Both have even gotten that elusive 100 BS check.  Doctor's appointments happened.  Finalized the 504 at school for Drago.  Visits and a birthday party with friends.  And a text from hubby at work that both were low at the same time that made my stomach lurch because I couldn't do anything.  Lot and lots of tears.  Some laughter and some anger.  "Normal" times.  But time is elusive.  It careens down a steep mountainside and sometimes all I can do is hold on.  It's a perception.  Time isn't real.  Time isn't a place.  It's not tangible and yet I was taken right back to a time where we perched on the cutting and steep edge of that mountain.

Yesterday I got to have a tour of our local children's hospital for work.  We are helping the Children's Miracle Network to help raise funds for medical tools for this local hospital.  Of course this hospital is extremely familiar to me. It is my home away from home.  Our endocrinologist for the boys is there.  Their dentist and now pediatrician are both their.  The lab where the boys have blood drawn is there.  Drago's neurologist for his migraine's is there.  Drago's psychologist is there and of course the ER where Sugar Bear was first misdiagnosed and then diagnosed is there, along with the PICU and floor where we lived that week of crises and life changing mountain slide.  I thought before the tour that the PICU  might be difficult for me to see or even the floor we were on after that where all the Type 1 education took place.  I haven't been back to either one of those since our experience.  But really what ended up taking my breath away and putting me right back in time was the Trauma room 1 in the Emergency Department.  Our guide pointed out these signs where the ceiling meets the wall.  About 13 of them each describing a different medical personnel and their responsibilities during trauma.  Trauma Room 1 was where Sugar Bear was diagnosed.  Those dozen or so people were all around my baby during diagnosis.  I had a "flashback" to that night.  I stood in the hall outside of the room listening to our guide but reliving the ER doctor telling me in that spot that my child has Type 1 and that he was in something called DKA and that he needed to be moved to the PICU immediately, that there was possibly some brain swelling.  Calling my husband to deliver the news.  Hearing his anguished cry.  Holding my baby's ice cold hand while doctor's and nurses surrounded him, working on him, saving him.  Time stood still.

Wednesday, April 15, 2015


It has been a very busy week.  My stepson was in town and we got to visit for awhile and then my in-laws came for a visit, the boys had ortho appointments and Sugar Bear got braces, Drago had his first of what will probably be many psychology appointments, hubby and I got to go out to dinner for a few hours, hubby went to a memorial of a beautiful family member that had lived a wonderful life, I had a planning meeting with the school to finally get a 504 together, and a full 40 hour week of work and through it all, Type 1 made itself known.

Drago had a couple of lows at school.  And Sugar Bear actually had some in range.  We made ratio changes for both.  Drago is still having lot's of extra carbs in the middle of the night.  And....and...and...

Some days it seems like all we do is chase highs or lows on one or the other or both.

It has been a weepy week for me.  Two Mamas on my Parents group had their second child diagnosed.  One of The Mamas had her first child only diagnosed three weeks ago and her other child just a couple of days ago.  Just three weeks apart.  And her posts took me right back a month ago to Drago's diagnosis experience and the fact that I haven't really processed it yet.  I haven't really grieved.  At the psychology appointment the Doctor actually talked with both of us for this first visit.  It was eye opening.  She is also a Type 1 and was diagnosed at just six years old.  She seems like she will be a big help not just for Drago but for all of us.

And a date.  Hubby and I got to go to dinner for a couple of hours.  It was lovely.  But Drago was worried about us going out.  He is worried about a lot now.  Sleeping is a big one.  We definitely need a CGM for him.  Just to help with some of his anxiety.

When I was pregnant with Drago there was a moment that we thought we might be having twins.  Fraternal twins run in my family and it wasn't out of the realm of possibilities.  We went a week between the midwife thinking she heard two heartbeats and the ultrasound that said it was just one.  In that short time I dreamed about what it would be like to have two newborns at the same time.  Twice as much work.  I talked with my Grandmother, a Mom of twins.  I had friends that were parents of multiples.  I honestly was a bit disappointed to find out we were "just having one".  But here I sit now with my multiple Type 1s.  A diagnosis of Type 1 feels a lot like having a newborn where that newborn phase doesn't change much and I don't think it will for a very long time.  You run on very little sleep, every couple of hours you have to take care of needs (even through the night), one is constantly checking to make sure they are breathing if they are sleeping, sometimes they both absolutely need you at the same time, schedules are important, and on and on and on.  I guess I should be careful what I dream of having.  Sometimes dreams really do come true.  I'm a Mom of Multiples.  M.O.M.    I have Twin diagnosis.  I will say it would have been even more challenging to have had them diagnosed at the same time (or three weeks apart).  That first year was hard.  So hard.  So a blessing, we had a little over a year to educate ourselves.  But the work, the work is still there.  That hasn't changed.  That newborn phase of work, that sticks around.  And we have two.

So when people ask me how are the boys, how are we doing I honestly don't know how to answer.  Every day we have our struggles.  I don't feel like I'm drowning anymore like I did with Sugar Bear's diagnosis, but I do feel overwhelmed and exhausted.  I try not to sweat the small stuff.  We still just take it one moment at a time.

Tuesday, April 7, 2015

Egg Crack

Egg crack, donate, nominate.  If you want to donate to JDRF through us, our Team name is:
Team M.D.  Get cracking.

Sunday, April 5, 2015


I keep meaning to write. I've composed easily half a dozen posts in the last approximately two weeks. But life just keeps getting in my way, and then those posts vanish from my cluttered mind. It's beautiful out. Birds are singing. There is green grass and flowers and buds on trees. But we haven't really enjoyed it. I hope to remedy that. It is after all a new season. Time for some good changes. I have the flu. I know, a non-sequitur but still somehow relevant. I woke up miserable Thursday morning. I tried to work but ended up heading to my doc to find out what was going on. It felt like an elephant was sitting on my chest. Flu. Let's give you a shot, zpac, and some medicated cough syrup and see if that helps. Nurse Nan came in to do my shot. She is the beautiful gentle nurse that drew Drago's blood a month and a day ago. I rolled up my sleeve. Oh no this goes in your hip. Well okay. This is going to burn. Oh my goodness did it burn. It didn't just burn. It hurt. It hurt A Lot. And I felt like a wimp. My boys get 4-8 shots a day! A day. And sometimes maybe even more "voluntarily" because it is a special day like today and they want a little extra treat even though they already had a shot and then have to have another. And rarely do they say it hurts. The night I came home from the doc having almost fainted I went to give Sugar Bear his Lantus. I don't know why it didn't go right and wouldn't dispense the insulin but he cried out and I removed the shot but still had to put it in a different spot and finish injecting. He was crying. I was crying. And then...and then...sigh...I had to go give Drago his. All shook up. I've not been comfortable with needles but I felt like I was better. I don't get nauseous or lightheaded anymore after giving a shot. I used to have to lay down for a moment. It's been more than a year since I've felt like that. And now every shot I give again I second guess myself. I pause. I hold my breath again. My hands shake. I count. A mother is supposed to be comfort not pain. It's not natural to voluntarily hurt your babies. It's not normal to check to see if your child is "just asleep" or passing out. I look for moments where type 1 hasn't changed us. But honestly those moments are extremely rare. We are continually changing Drago's Lantus dose. He hasn't had but a handful of nights since diagnosis where he hasn't gone low at midnight or 3am. He's eating/drinking roughly 20-60g of carbs each night just to wake up on the low end of his range. He's still in the honeymoon phase so changes have to be gradual. We have to give each change time to work before deciding it's not. It feels like experimenting. It feels wrong but the alternative could be worse. So slow and steady and vigilant. And Sugar Bear, he's almost constantly running high and it feels like we never seem to catch up. So last night found me giving Sugar Bear a shot at midnight, sleepy, holding my breath, and then helping Drago at 3am with a "sticky" low. A low that liked to keep dropping even after two juices and crackers. And I'm sick. And tired. And a holiday in the morning. It didn't matter. I still needed to check Drago at 5am and by 6am I just couldn't go back to sleep. Too many worries I guess. So when 8am rolled around I couldn't wait for the boys to get up and see their baskets. The bunny had brought them each Dragon kites and bubbles and Avenger pins and chocolate eggs and bunny crackers and and and. They didn't want to wake up. It was slow going. But when they did they were pretty happy. We decided an outing on this gorgeous day to fly kites was in order, but first breakfast (and BS checks and insulin) and showers (only if it's been at least an hour since injecting insulin) and then it was lunch time (and BS checks and insulin shots) so it was close to 2pm before we were able to "go fly a kite". But it was worth it. Sugar Bear said it was "awesome" and Drago said his favorite part of the day was being with family. That's not to say it was easy or even "normal" but it was us. Flaws and all. One of the dragon kites didn't have all it's pieces (it was missing the handle, we improvised with one of the old insulin pens), Sugar Bear and Drago had a couple of spats on the drive there (and right when we were leaving), Sugar Bear only brought one chocolate egg for the 3pm snack but Drago brought two, bubbles are messy and sticky, and nobody wants Mom to take pictures, but we flew kites, we played, we laughed, we smiled, and Sugar Bear and I snuggled laying on the Spring ground feeling the Earth warming up, while Drago and hubby wrapped up the box kite that we've had for years but never brought out with the kids. Perspective, it's what everything is about. Some days it's easy to keep perspective and then other times it doesn't matter what you do it won't be there. Like blood glucose numbers, when Sugar Bear has a 130 something at midnight I feel relief. That is a number we can sleep on. But when Drago has a 130 at midnight, I worry. It inevitably means he'll be low at 3am. Perspectives. To everything (turn, turn, turn) There is a season (turn, turn, turn) and a time to every purpose, under Heaven