Friday, February 27, 2015

Fingers Crossed

Sugar Bear is sick.  He has been sick this past year since diagnosis, even had strep before.  But this is the first time we have had moderate ketones with it.  We are pushing fluids, trying to keep him nibbling so we can give insulin and continually checking blood glucose and ketones.  He has been sick for a few days now and the ketones have stayed trace or small.  Those we've been able to deal with just fine.  This morning he woke with a BG of 311 and moderate ketones.  My stomach is doing flips. He is nauseous but so far hasn't thrown up. On top of all that Drago is still sick and I'm not feeling 100% today and our kitty Ricky needs daily medicine and hubby doesn't feel well either. Diabetes doesn't care.  I probably won't get to rest today with two sick kids.  I'll push through it.  I have to.

So we are following our sick day checklist: rest, fluids, monitoring, carbs to be able to dose and extra insulin for ketones, and so much more.  I've stocked up on cough drops and sugar free Popsicles as well as applesauce and pudding.   Will put my new vitamix to more use if smoothies or ice cream are requested.  I will be calling the endo at lunch if the ketones don't come down.

I'm nervous and worried and tired.  In the past five days we have had to give a shot at 3am every single night and some nights it was both midnight and 3am. (Like last night). I'm exhausted.  I'm soul tired.  But I've got this, what other choice do I have?  We want to avoid the hospital if we can.  Sugar Bear has already started the "I'm sorry's" because he feels miserable and knows that type 1 complicates things.  Drago is grumpier than normal because he has been sick for two weeks.  Maybe I can get the hubby to go rent a movie and the three sickies can cuddle in my bed and watch a movie. Yeah, that might allow me to rest a little too.  Fingers crossed.

Sunday, February 22, 2015

The Dance

Valentine's Day was....  I took Sugar Bear to swim class in the morning.  At the end of class the kids all have to jump in without holding a hand.  I could see on Sugar Bear's face how uncomfortable he was.  Then I saw him talking to his teacher and then I got the wave and pointing to his finger and he started walking towards me.  I grabbed the kit knowing that was what he was motioning about.  When I got to them he said he felt shaky.  He hasn't been feeling his lows and in the back of my mind I was already thinking that he's probably fine.  I tested without hesitation.  He was 208.  Just nervous to jump in.  We talked for a moment about how he could do it.  I went back and sat down and watched him tackle the tiger.  He jumped.  Shaky. He did it.  It amazes me how brave he is with his disease and what things unnerve him.  After class we planned on staying and playing in the pool but it looked like there were classes in all the areas.  It didn't look like it was going to happen and Sugar Bear got very upset.  He refused to talk with me.  We sat and waited and a nice instructor came over and saw the tears on his face and said her class hadn't shown up and she'd love to swim with us.  It took some cajoling (he was high after all) but we got in and did have fun.  He loves to play Marco Polo in the pool.  After swimming we got in the car to go home and I had him check his blood sugar again.  210.  We were going for an early lunch.  We were still working on fixing the grumpies.  We had a bit of miscommunication during the drive that totally frustrated him.  It was all a bit hard.  We got the food and headed home with his treat.  At home things turned around, we played games, did some mosaic crafts, and played with toys.  At afternoon snack he was slightly out of range and we would normally give a correction but he said "I exercised this morning so I think we should wait."  We did.  We've been trying to let him decide more on what he thinks we should do in order to help him gain independence with his treatment.  I'm glad we didn't correct the high; he was in perfect range at dinner.  He would have probably gone low had we given the shot at snack.  We had a lovely dinner of heart shaped ravioli.  We rounded the evening out by watching Jack and the Cuckoo Clock Heart.  Sugar Bear loved it until the end.  He was furious with the open ended finale.  I tried to discuss with him the artistic impression, etc...yeah, he is 10.  Still he liked it.  I, on the other hand, loved it.  A boy is born with a frozen heart and it is replace with a fragile cuckoo clock.  I cried at the end.  I want spoil anything, but I will say that this movie was perfect for Valentine's Day.  It showed all the different kinds of love from risk taking puppy love to the heartbreaking love a mother has for her child.  I thought it exquisitely beautiful.  A sort of steampunk cartoon musical.  Just so different.  Of course some reviews say it is not appropriate for children because of the heavy themes of love, life, and death.  Honestly, I think my 10 year old is the perfect age to have seen it because of what he has gone and is going through.  He could completely identify with Jack.  And I saw Jack in him and Madeline in me.  It hit home.

We have been dealing with highs and lows.  No surprise there.  We did have two "shocks" this week.  We had a low of 63 at 3am.  Gave the juice fairly easily.  Tested fifteen minutes later and it had only gone up one point.  More carbs.  Tested fifteen minutes later and still not in a safe enough zone to fall asleep.  More carbs.  Waited another fifteen minutes and we were close.  Waited another fifteen, tested, and could finally fall asleep, worrying that he would the have a rebound high or that his dawn phenomenon would make him high by breakfast.  Nope, he had a beautiful 126 at waking.  Don't ask me how.  This disease plays games that aren't fun.  The other shocker was at bedtime snack.  Tested he was low, gave carbs, waited and then tested again and the scariest number popped up on the meter.  38.  With my heart stopped I tried not to panic and we tested again immediately hoping it was just a fluke.  Yup.  Still low but not that low.  More carbs.  Another test and back to "normal".   It's always a dance or fencing or just a stupid disease that doesn't play fair.  I've aged easily 10 years this past year.

Drago now has strep and I am hoping and wishing and praying to everything that no one (especially Sugar Bear) gets it.  We managed to avoid passing the stomach bug (knock on wood) so maybe...

In order to work towards even healthier habits I got a Vita-mix.  I love it.  I've made smoothies and soup in the last two days.  I want to cut out soda for me (the kids don't drink it) and I think this will definitely help.

Health, independence, life.  Just dance and breathe.

Friday, February 13, 2015

Where is that tiny violin?

Overwhelmed.  Sometimes I don't feel like I'm floating anymore and that the waves are getting a bit much to handle.  The funny ironic thing is the waves haven't changed.  It might be a bit of burnout.  I find it hard right now to rouse myself sufficiently to check blood sugars at night.  I feel my insides groan at the number when it is high and I need to do a shot and I have an internal argument about whether he'd be okay without the shot.  Or I groan when it is low and know the struggle I'll have getting him to have some fast acting sugar to raise it.  It might be that we have dealt with high numbers for a bit now and it is taking a toll on my psyche.  I hate how it makes Sugar Bear feel and his personality can be pretty challenging when he feels crummy.  The Lantus change has helped a bit so we are not running in the high 200s and low 300s anymore but he still typically wakes high and tends to still be out of range at lunch.  Evenings are a bit better, he is in range for snacks and dinner and even midnight.  So maybe half the day is fine and the other half.....I just want a break.  A break from diabetes.  It is so consuming.  Going grocery shopping I read label after label checking carbs and sodium and calories.  Going to visit friends or an outing to the Y or even just to take Sugar Bear on an errand with us requires extra planning and preparation.  If he falls asleep at an unusual time my heart skips a beat and runs through the last blood glucose check and last time he ate and last shot of insulin and check his breathing.  I read books and more books and websites on research and and and try to figure out the next plan of attack.  How do I make this better?  How do I keep him safe and healthy?  How do I take care of everyone?  Maybe this is just caregiver's burnout.  I 've been doing this a long time!  Double knee replacements done at the same time on my husband in 2009 and then he was declared permanently disabled after that.  I help him put socks on, trim his nails, help him get his shirt and jacket on, wash the back of his hair, make food, etc....I love him dearly and would do all of that and more but sometimes I get overwhelmed.  Today, Drago missed yet another day of school because he is feeling crappy, so we're headed to the doctor.  My life seems to revolve around doctor appointments.  I know rationally that things can always be worse and I try to hold on to hope with a white knuckled grip.  Today I just feel a bit overwhelmed.  Tomorrow is Valentine's Day and I would love nothing better than to have someone watch the boys for a few hours so I could reconnect with my beloved around something besides the next crises.  Too many variables prevent that from happening, from the fact that Drago is sick to the always Sugar Bear and his needs.  Outside of family that doesn't live near us, we have no one that is willing to take that on.  So cry me a river, play me some blues, and just get through the "oh poor me" stage.  I know, I really do, that there are others that have it way worse (thanks Mom for drilling that into my head as a child), but maybe sometimes all I need is a pity party, a hug, and some space to feel what I feel.

Tuesday, February 10, 2015

Caffeine and a little sugar

Now back to our regularly scheduled type 1 posts.

Sugar Bear has been dealing with wonky numbers.  We've had more numbers above 300 in the past week than we did all last year.  We're swimming each week, we've made some nutrition changes, and still we gave numerous shots at midnight and 3am.  Endo had us change just the long lasting lantus dosage three days ago and that has brought him down a bit.  We actually had some numbers finally in range and then, of course, instead of a shot at 3am it was a juice box.  Unfortunately in my slumber stupor I spilled some trying to get him to drink.  Had to change his shirt and of course woke him up more than normal.  I don't know which I despise more, highs or lows at 3am. Really what I despise the most is that my son has diabetes.  I'd like to just sleep through it.  I can't.  It's not an option.  So I run on caffeine and interrupted sleep.

I'm reading a fascinating book called Bitter Sweet by Chris Feudtner.  It talks about Diabetes, Insulin, and the Transformation of Illness.  Just a little light reading.  One little quote from the book:  "Yet the diabetic situation after insulin was rather more complicated- a 'terrible beauty' had been born."  Yup, that about says it.  I never thought that in my parenting I would feel my heart swell with pride because my child gave himself his own shot or that the accelerated maturity of my Sugar Bear would cause me to want to bawl my eyes out.  It is this strange dichotomy.  No wonder Brett Michaels sings about every rose has it's thorn.  Trying to find that balance between not hovering but still battling diabetes is tough.  We look to not let it overtake but giving it the respect it demands.  It's not easy no matter what it looks like from the outside.  Drago told me this morning on his way to school that his buddy (who has type 1) missed yesterday because out of nowhere his blood glucose was over 400.  He told Drago that he feels horrible when he is in the 200s so one can imagine how poorly he must of felt in the 400s.  Drago has been noticibly showing more interest in all things type 1.  He even got into an argument at school with a kid who insisted it was caused by sugar. Drago also randomly got up at 5am because he was worried about his brother.  He woke me to find out what his last reading was.  It was one of the nights that we were giving shots.   Sugar Bear's disease takes a toll on the whole family.    It truly is a family affair.

We are looking at our upcoming walk and trying to figure out more fundraising.  Sugar Bear has redesigned the t-shirts and renamed the team.  Since he was itty bitty he has always loved monkeys.  The new walk team name is Team Sugar Monkeys.  He is so sweet. We would love to have you participate; you can even do it virtually and donations are always welcome.  I have not changed our name yet at the JDRF walk site.  We are still listed as Team Sugar Bear.  Btw, the name Sugar Bear has been a nickname I've called him since he was a baby.  And it is so appropriate in so many ways now.

My echocardiogram came back fine.  That was one bit of good news in the last week.

Stay tuned for more be continued, always.  Until then I will continue checking and drinking coffee.

Monday, February 9, 2015

Just My Opinion

  1. From the free online Merriam-Webster dictionary:

  2. judg·ment

     noun \ˈjəj-mənt\
    : an opinion or decision that is based on careful thought
    : the act or process of forming an opinion or making a decision after careful thought : the act of judging something or someone
    : the ability to make good decisions about what should be done
    I have been avoiding blogging.  Why?  Because what I want to write about is pretty controversial.  You see if you go back on my blog to the middle of last year you'll find that we "finally" got "smart" and vaccinated our children.  At least, based on the memes and posts I've seen from my friends, that must be how it is viewed. People that don't vaccinate have been called everything from child abusers, idiots, to criminals that should be jailed.  It is all because of the measles outbreak here in the US.  I get it.  People are scared.  What I don't get is the judgement.  I don't get the desire to cut out informed choice, but I guess I should.  You see these problems are "first world" problems.  So one of my friends posed a question on her status of why in the world would someone choose not to vaccinate.  So I've been avoiding my blog because of the controversy but really I'm going to step out here, take the heat, and respond to that question.

    First I'll say it wasn't because of the "possibility" of autism (which has been debunked) and it definitely wasn't because of Jenny McCarthy (I don't take stock in celebrities and what they have to say and I really don't even know who she is).

    When I was pregnant with my first, who is now 14, I researched everything (anybody that knows me knows I like to research and do it thoroughly, to the point I was able to find a specialist in another state and put my endometriosis into remission with a surgery down there).  I'm not opposed to medical interventions or preventative care, but I am fully aware that humans make mistakes (our pediatrician and the first ER doc misdiagnosed my Sugar Bear).  Anyway, during that pregnancy I researched everything.  Homebirth, hospital birth, circumcision, breastfeeding, bottlefeeding, cloth diapers, disposable diapers, co-sleeping, cribs, SIDS, Brewer's diet, and of course vaccinations and immunizations.  My husband and I discussed everything.  He already had vitiligo and psoriasis and psoriatic arthritis.  All autoimmune diseases.  I had endometriosis.  His Mom had thyroid issues.  More autoimmune diseases.  My husband's autoimmune issues are all skin issues.  I read the inserts for vaccinations.  Side effects included allergic reactions to milk and eggs in the vaccines.  I'm lactose intolerant.  The side effects were numerous and many were very rare but my husband and I already had "rare" issues.  I couldn't imagine giving my baby a shot for hepatitis when neither my husband nor I were drug users and my baby wasn't "sexually active".  So we decided to forgo the shots, for now. We figured we would revisit the issue periodically.  If I was opposed to autism risks, I wouldn't have been induced.  My induction was medically necessary though and I knew it.  By the way, our first birth was a hospital birth due to pre-eclampsia even though I ate organic and vegetarian.  I narrowly avoided a c-section.  I was a stay at home Mom, I breastfed, my child wasn't in daycare or preschool and when we decided to homeschool again we'd be right there with him. Exposure to others was limited to grocery stores and visiting friends. We definitely baby-mooned. Vaccinating or not very much was a tough decision.  It required me to read on herd immunity, effectiveness, disease symptoms, and treatments.  Had I been living in a third world country I wouldn't have even been debating whether to vaccinate or not.  We would have.  But because we live in an industrialized medically luxurious nation this informed parenting decision was afforded us.  Yes, herd immunity allowed me to not vaccinate my child.  Then we had our second baby.  We had a beautiful homebirth with no interventions, not even fetal heartbeat monitoring.  He was half way out on my own when the midwife showed up.  Easy.  Peaceful.  Lovely.  Our oldest was four when his brother was born.   They were inseparable.  They both were active children and we live in an Old Victorian house.  When they got injured the first time and needed stitches or ER, we got their tetanus shot.  It was an easy decision.  It was something I had to do too when I stepped on a nail outside chasing our cat and it went through my flip flop and it had been 10 years since my booster.  We were not opposed to doing what was needed when it was needed.  And we didn't feel like we were jeopardizing the health of other people or children.  When my children had a sniffle or a cough or even just a low grade fever, we stayed home.  If they were "off" in their normal routine we stayed home.  I have had friends bring sick children into my house or even to my child's birthday party.  People send sick kids to school.  People go to work sick.  More people die from flu and pneumonia than from measles.  Anyway, my job was and is to protect my children.  And I have done that and continue to do it.  We had planned on getting our oldest's titers checked but then his brother developed Type 1 diabetes (which by the way is a possible side effect of the MMR vaccine listed on their insert--wonder if he would have developed Type 1 earlier had we done the shots "on time", have friends on a parent's list for type 1 who's children have been documented as developing it from the vaccination--Type 1 is something you are born with that needs a "trigger", it's autoimmune).  So we decided in order to protect them, and especially Sugar Bear who is still homeschooled, further to go ahead with getting their shots up to date.  Our oldest, who has always had some skin issues, definitely developed rashes after the shots.  Sugar Bear had a massive headache.  We stayed in touch with the pediatrician after both sets of shots.  Now here is the fun part, even though they are vaccinated doesn't mean they are immunized.  Vaccinations aren't 100%.  So all that research I did is still necessary.  I still have to be aware of disease symptoms.  I still have to be aware of disease treatments.   It doesn't stop me from being protective of my children.  When people talk about the risks with vaccinating they make it personal.  They imagine those things happening to their children.  When people talk about getting a disease they again imagine their children getting that disease.  It's our human nature to empathize.  So why is it that people think it is okay to label someone who is making a tough decision on whether to vaccinate or not a criminal?  It comes down to fear and judgement.  Fear that their child or a child they know will develo p a disease and either die or have serious complications to it even though they are vaccinated.  And judgement that people didn't make a decision like they did.   And that they should have.  And then the name calling starts.  How could someone be so stupid?  What an idiot?  They should be in jail?  Why would they do something like that?  Instead of vaccinations substitute breastfeeding or bottlefeeding, substitute organic food versus mainstream eating, substitute any parenting choice and it will happen that there will be judgements.  There will be people saying the other is making awful parenting choices.  But that is exactly what it should be, parenting choice.  My children did not have the chicken pox vaccine.  They didn't need it because I purposefully exposed them to "wild" chicken pox.  They both got it at the same time.  They both survived with just a few pox scars, just like me.  My Mom had measles as a child.  She has a few pox scars from that.  Could it have been worse for my children, yes.  Could it have been worse for my Mom, yes.  Is there a possibility of a reaction to a vaccine, possibly severe, yes.  This is only my researched, informed opinion there are pros and cons to vaccinating; there are pros and cons to not vaccinating.  Will I call you a child abuser if you don't choose to breastfeed (proven scientifically to be healthier), no.  So please don't call me one because I delayed our vaccination schedule, because I made a parenting choice for my children for their protection.