Diabetic Supplies Bag

I love to sew and I have an absurd amount of fabric. I figured I'd experiment with a diabetic supplies bag for the diaper bag, since I have a ton of free time ;). I like the little kit that the blood glucose meter came in but since putting a rubber safety cover on it, it doesn't fit easily and drives me crazy. I wanted to be able to fit all the supplies I normally carry in the diaper bag pockets into the diabetic bag so that I can easily switch to a book bag or another bag if Marian is going someplace without me. We're going away this weekend so I guess I'll try it out and see what needs tweaking or if I just need to go back to the old blood glucose meter bag. I will say this one is much cuter!

BG Meter Bag

My new version.  Room for extra batteries, insulin pen with extra insulin, snacks, and pump supplies.

All rolled up

I'll check back next week to give an update on whether or not this works and some directions on how to make your own.

One Week Down

Week One is complete!  It's had both highs and lows. 
Highs:

• Less low blood sugars
• No more injections! (except when Mom forgets to bolus after dinner and after we removed her infusion set for a change)
• Giving insulin at night without even waking her
• Being able to give a snack in the car without pulling over, taking her out of the seat, getting an injection ready, giving it, then rebuckling her. 
• Lots of information and record keeping thanks to Diasend

Lows:

• Infusion set changes- these are not fun!  I didn't realize they would be way worse than giving injections, thank God they are only every 3 days!  I have hope that they will get better with time. 
• Still don't really understand how to read Diasend so we have the information but not really the ability to understand it. :P
• Changing our way of thinking about insulin, feel like I'm walking blind. 
• More highs than we like to see, although we're told it will take a while to figure out basal levels.

It's HERE!

New Meter with remote for the pump.

The One Touch Ping Insulin Pump in pink of course.

The Insulin Pump has arrived!  I have one excited girl.  I hope she's this excited when we start using it.
 Sofia's pretty excited too.  I think we're going to have to do something special for her when Marian begins using this pump.  Any ideas?

Praise God for...

the insurance company!  Not what you thought I'd say.  But I am so grateful for two things with them.  One: they aren't fighting us ordering the insulin pump a month earlier than their protocal dictates and two: its covered 100%.  Phew!  Another bonus the infusion sets are cover 100% too!  We are so grateful because we have been praying for a smooth transition into the pump and the first step was actually getting the pump shipped without problems.  Thus far Animas has been wonderfully responsive and so has our insurance company.  Thank God.  The next phase of this transition will be training set up for late April and then a week of saline in the pump and then off we go with insulin.  We're grateful for the first hurdle and praying for the next couple!

As a side note I just got an email with the tracking information!  The pump and supplies should arrive today.

On Our Way...

Towards an Insulin Pump!  Wahoo!

Mark and I are so excited to begin this process.  While I'm a bit overwhelmed at having to learn a whole new system of care, I'm looking forward to not having to give 6-10 shots a day!  How wonderful it will be to bolus without having Marian scream at me because it hurts...some of this I think is manipulation not real pain, since it doesn't happen in public or when others give an injection typically. 

We decided to go with the Animas OneTouch Ping.  I thought it would be useful to list our thoughts on each because I would've appreciated seeing someone else's thoughts on deciding the pump they chose.
Here are some of our thoughts as we worked through which pump to choose:

OmniPod 

Positives:

Child has no access to pump controls

Waterproof

Less to carry

Negatives:

If we forget the meter no other options to get insulin into Marian easily

A bit heavy to be taped to body of 3 year old, most reviews seemed to indicate extra glues/tapes needed.

OneTouch Ping

Positives:

Pink (this is the feature most important to Marian)
Can give program to give insulin using pump on body and through meter
Waterproof
We've used the OneTouch meter so its a bit less to learn

Negatives:
Marian will have access to pump controls
Marian must wear a belt or pocket with the pump

How Our Journey with Type 1 Diabetes Began- Day 2 and 3

Good morning sunshine! With a child that typically doesn't sleep past 6:30am I was thrilled that she slept until 8am after being up until after midnight. Of course breakfast wasn't served until 9:30 which caused some issues, but oh well. The food service was by far my main complaint with the hospital (you'll hear more about this later). 

Mark arrived around 9:30am and our training began again around 10:30am when the endocrinologist arrived.  Although at each meal the nurses would walk us through the carb counting injection giving routine.  He loaded us with information, but was kind enough to not get into the "what-ifs" or emergency situations until the next day.  Our Endo kept it easy by giving us an acronym DIET.  D = diet I=insulin E=exercise T=testing.  He said focus on getting these things down.  During this training we met in the playroom so Marian was happy as can be to play in a huge room full of toys.  We spent a lot of time in that room during our stay. 

Next was the dietitian.  She went over a book that gave serving sizes.  I can't say she was very helpful at all, but in her defense I didn't get the feeling she works with many parents who believe in feeding their kids whole, healthy foods cooked from scratch.  The book was useful to give portion sizes for 15 carbs so that I could get an idea as I cooked at home.  We had a lot of super simple meals for a while and I've done a lot of estimating and guessing.  I'm sure there will be more posts about cooking since I do it frequently. :) 

My mom stopped by around this time on her way relieve my in-laws whom were caring for Sofia.  Marian was thrilled to have a visitor.  Mom came equipped with pumpkins to decorate which kept her busy until lunch came.  Our pastor arrived soon after my mom.  He was such an encouragement to talk too.  He was even more sympathetic than the average person because he's had type 2 diabetes for 20 years.  As a side note, his endocrinologist has now said his A1cs have been low enough for over a year that there is no way he can consider him a diabetic (he was controlling it through diet and exercise alone).  What a praise for God's healing in his body as well as giving him incredible self-control.  Okay back to Marian.  So within all this commotion lunch arrived for Marian.  I'm pretty laid back, but I went through the roof when I saw it!  A healthy lunch for a recently diagnosed diabetic (and every kid on the peds floor) was chicken nuggets (the gross compressed kind), french fries, fruit cup, two huge cookies, and juice.  I couldn't believe what I saw  Obviously we couldn't get Marian another lunch since they'd already set it down in front of her, but I made sure that no other meal was served without me determining what she as being fed. When I brought up the concern to the nurses, they said its standard to feed kids a meal they are sure to eat.  My question was how were we supposed to understand how her body reacts to insulin to make sure her dosages are correct if we feed her junk all the meals she's here (breakfast wasn't much better, but I figured it was a fluke).  I did take one of the cookies and the juice from Marian.  I appreciated the nurses respect in going out of their way to make sure I could choose the next few meals.  The other favorite snack at the hospital for a diabetic kid is sugar free jello.  Marian probably ate 4-5 things of it.  I cringed every time.  The amount of fake cancer causing sugars combined with red-food dye made me want to cry.  By the last day, I had almonds on hand for snacks and made sure she was eating those instead.   

With lunch done and a super late night, Marian finally was ready to nap.  We put on a movie so Mark and I could get some reading done and help her calm down a bit.  She ended up falling asleep for a decent nap considering where we were.

The next few hours after nap were spent playing in the playroom, going over a few details about how to count carbs, prepare an insulin pen and practicing testing blood sugar.  We also had a little visit from Mark's parents who kept Marian entertained until dinner.  I was beginning to get frustrated because I was having a lot of trouble focusing on all the information and processing what people were saying quickly.  I was looking forward to seeing Sofia and getting a good nights rest after dinner!  Around this time they removed the iv line in Marian's hand.  To this day she asks why they taped her hand to a board.  It's funny what kids remember.

Marian was healthy enough to be super active.  I felt bad at the amount of times she ran or moved quickly up and down the hallway between her room and the playroom while so many other children were obviously quite physically sick.  I spent many trips praying for those kids and their parents while thanking God for my kids healthy state.


Our last day's training was emergency stuff.  A bit overwhelming and scary but I think I was too naive to be really scared.  I was so overloaded with information causing little of it to sink in and I was bone tired.  Our Endocarb counting and injection instruction or not.  We ended up choosing to leave before dinner.  We arrived home to a meal of chicken and veggie stir fry with rice on the side thanks to my mom.  Mom and Sofia had decorated the living room with streamers, balloons, and a happy birthday sign for Marian.  It was wonderful!  She was so excited and it was nice to get the focus off diabetes for just a a moment.  Her 3rd birthday was a week away.  My dad also came down to celebrate Marian's return home.  She was so excited to see everyone.  It was a great way to off set some of the "you still have to get shots at home" issue.  She was proud to show off how brave she was for Papa and Grammy. 


We survived our first night at home with Marian with only one call to the doctor at 2 am about whether or not to correct a high or not. 

The next morning we woke up to begin adjusting to life at home with a diabetic.  We said good-bye to my mom.  Another piece of grace was Mark's boss allowing him to work from home for the rest of the week.  His boss's wife had been a Type 1 Diabetic, yet another bit of grace God gave us during this new beginning.  On a side note: I woke up longing for spaghetti that morning....my suspicions that had started at the hospital about pregnancy were confirmed.  The inability to follow simple math (I once taught math) and extreme exhaustion had given me some suspicions.  Should I tell Mark or give him some time to adjust?  I gave him a whole 12 hours before I told him that night I thought there was a good chance I was pregnant.  God certainly has blessed us greatly!  Not to say we weren't TOTALLY overwhelmed:) 

I'm writing all this 5 months afterwards, but I remember the panic that threatened to consume me the entire time like it was yesterday, sometimes it still rears its ugly head.  I can see God's hand in so much of our experience from having friends with diabetes to call, family and friends that cared for us and our kids well, including visiting Marian in the hospital, Mark's boss being over the top generous with time off and working from home, doctors and nurses that took the time to educate us, and an unnatural calm (at least on the outside) the entire time which allowed us to get the information and skills we needed quickly.

How the Journey with Type 1 Diabetes Began- Day1

I can't believe I missed the signs!  Of course I wasn't really looking at them for my 2.5 year old.  I figured the behavior issues, incredible amount of peeing and drinking water were part of the age and possibly a gluten intolerance.  It made sense since my family has a history of it, so I put Marian on a gluten free diet.  It sort of worked but she was drinking like crazy, once she even filled a cup out of the toilet.  Completely embarrassing mom moment, didn't I teach her anything?  But also a very sad moment looking back at how desperately thirsty she must have been.  Finally I took her to the pediatrician.  She agreed that the signs I saw sounded like gluten and dairy problems.  She also asked to test her urine just before we left the office.  When she came back and said she found ketones, I knew that wasn't good.  I have been pregnant and have friends who have experienced gestational diabetes I knew what ketones meant: diabetes.  Three nurses proceeded to try and attempt to test Marian's blood sugar.  Marian was a champ!  This brave little girl did not even cry until the 8th time they pricked her.  Yes, it took three nurses not because my daughter was a raging toddler but because they couldn't figure out how to work the machine.  The doctor came back in and said what I already knew.  Marian has diabetes.  I was totally cool up to this point.  Then she said I need to go straight to the hospital so she can be admitted.  That's were I lost it, I started to cry.  I called my husband and told him.  He'd decided to work a bit late so he was still an hour and a half commute home.  Then got the information for which hospital and walked out crying the whole way.  Marian kept asking why I was crying and Sofia just wanted to give me hugs.  It was amazing at the moment to see Marian's compassion because its not always been her strongest trait.  Sofia tends to be the compassionate one.   God has used being in the hospital and having diabetes to grow Marian in compassion.  I'm grateful that this hardship is producing righteousness instead of selfishness. 

That night we were supposed to have our small group Bible study over for dinner.  Mark sent an email to everyone telling them what happened and that we had to cancel dinner.  I am so grateful for this group.  Our friend Julie called and said "how can I help."  "How soon can you come to our house?"  was all I said.  I was supposed to be at the hospital within the hour.  She came over right away and Sofia was thrilled to spend time with her which made leaving easier.  As I drove to the hospital I called a friend, Lauren, who is a nephrology doctor at Johns Hopkins.  I figured she could answer some of my hospital expectation questions.  I have never been in a hospital nor spent much time in them...they give me the hebe gebees (we just watch Madagascar for those who also enjoy this movie).  I have enough sense to know I want the nurse on my side!  So I asked her what to expect when I arrive at the emergency room, what can I expect doctors and nurses to do for us, how not to be a crazy parent, who will I be meeting (doctors, residents, etc.) and how to tell the difference.  She was amazing.  She walked me through what to expect and she told me its okay to ask questions repeatedly until I was satisfied. 

Marian and I arrived at the emergency room to be admitted and get her iv and blood work done.  I kept thinking why am I here there are SICK people everywhere in here!  I just kept praying  for protection  from getting sick and told Marian not to touch ANYTHING.  I had had enough foresight to pack a boatload of activities since I figured I'd be sitting in an emergency room waiting room for a while.  Gratefully we were called back within 5 minutes of getting to the pediatric waiting area, which was kind-of embarrassing since the place was practically standing room only. 

The emergency room nurses were wonderful at talking with Marian as they took blood put in an iv and ran various tests.  Marian was a trooper!  She barely cried and didn't fight when they took blood or put the iv in.  It broke my heart to see the fear in her eyes though.  Mark arrived with our computer and a movie after we'd been in the emergency room about an hour and a half.  We broke our no movies for the kids rule and allowed her to watch Madagascar.  It got us through the next hour and a half until they were ready for us on the peds floor.  It was now around 8:30pm, an hour and a half past Marian's bedtime.  The residents that came to pick her up, asked her to sit on my lap in the wheelchair.  She looked me and said "I want to sit by myself."  At least diabetes hasn't broken this girl's spunk! 

We arrived in our room and began to get settled in.  Around 10pm we met our endocrinologist.  He came in from vacation to give us our first instruction session.  I can't remember a whole lot of what he said other than "just dive in and give her her first injection, you'll sleep better tonight."  He was right although I think my heart was pounding through my chest.  I was relieved to see the needle was so small!  I was expecting a much larger and longer needle.  My only experience giving injections was with horses so I guess my perspective was a bit skewed;)  I still hate giving shots.  Marian has not ever been horrible about her injections, most of the time she has sat and taken them well, but it breaks my heart to have to do something to her 6-10 times daily that causes her pain.  I remind myself that I need to be grateful this helps keep her alive!  100 years ago we'd be in a whole different battle.  After our initial injection and training session Marian finally was able to get something to eat.  I think her hunger was worse than the shot at this point.  Mark went home since only one parent could stay with her and I couldn't stand the though of leaving her at this point.  She was all ready for bed and in come the residents on rounds.  They wanted to hear the whole story again and check her out.  It's about 4 hours after her bedtime and she's pooped (so is her momma).  Finally my girl can fall asleep, unfortunately we had to wake her up 45 minutes later to test her blood sugar.  I finally got to bed at 1am.  A cool moment among all the doctor visits was looking out at the Baltimore night scape and talking about what we saw.  She still remembers that scene and loves going into Baltimore and pointing out things she could see from her hospital window. 

Well that's the end of Day 1.  I'll post about the rest of our hospital stay in the next few days.

A Diabetes Milestone!

Tonight I covered up the Hypoglycemia chart with my baby to-do list!  That means I'm confortable enough recognizing the signs that I don't need a picture chart.  Yay for progress! 

When I taped up these charts I was pretty sure I'd never cover them.

Fun Ice Cream Cupcakes

My daughter Sofia turned 2 in early Feb.  We celebrated with cupcakes and ice cream on her birthday, however, she really just wanted to the ice cream.  A girl after my own heart!  I'm a bit of a fan of ice cream.  Since we were having a family party this weekend I figured I'd try some ice cream cupcakes instead of my normal ice cream cake.  I liked how they turned out! 

They took less than 20 minutes to make and Sofia loved it!  As a bonus the carbohydrate measuring was easier and a MUCH lower total than lovely traditional cake and icing cupcakes. 

The birthday girl enjoying her ice cream cupcake.

What I did:

1.  Crushed cookies in the bottom of silicone baking cups (using sturdy cardboard would work too, just not the thin paper cups).  Another even healthier option would be fruit in the bottom.

2.  1/4 cup of softened ice cream in each cup then smoothed with a spoon.

3.  A bit of chocolate gauche (just because I love chocolate)-optional

4.  Freeze until ready to use.

5.  A dollop of whipped cream with a few sprinkles for color.

Carbohydrate count is based on the bottom you use and 1/4 cup ice cream.  With the ingredients I used ours were 15-17 carbs. 

Enjoy!  Let me know what combinations you try!

Blood Sugar Highs are Scary

I've read frequently and experienced the fears of having a 3 year old with low blood sugar but every once and a while I am reminded of the fears (and slightly absurd comedy) of high blood sugars as well. For example tonight's dinner.  We got home from BJs and I finished making the veggies for dinner and we sat down.  I forgot to check her blood sugar initially as this pregnant momma was HUNGRY.  All of a sudden Marian started pouring her water bottle onto the floor, this was no accident.  As began to clean it up (my first mistake, she should have cleaned it up), she grabs at my hair and pulls hard!  So she was disciplined for both.  We went on with dinner.  Less than a minutes later she looks at me after I told her to "Please continue eating" and dumps her entire plate onto the floor.  I then proceeded to check her blood sugar...325.  Okay so she's high this explains some of these behaviors.  I gave her a correction shot amid a fit and sent her to her room to calm down reading quietly for a few minutes.  I've learned fighting a battle with a child with high blood sugar is a losing battle.  She calmly came out a few minutes later and was ready to deal with life again.  We cleaned up the mess and dealt with her plate throwing and how to handle a situation without throwing food items (or any other item for that matter).  At the time I went from thinking "what are you doing I know you've been trained better than this" to "is this some kind of joke."  The irrationalities of a 3 year old combined with high blood sugar is scary and slightly amusing to think about the absurdity of her responses. 

It's always such a humbling experience to realize that one, I probably could have avoided many of these problems tonight by remembering to check her blood sugar before dinner instead of after it had begun.  Two seeing how completely out of control she can become when she has high blood sugar scares me for as she gets older and the choice isn't to throw a plate but drive irresponsibly or something.  A good reminder tonight to persevere in prayer for not just today but the future of my children!

Encouragement as We Begin the Journey

We're on a journey with about 15,000 other families this year.  Since getting over the shock of my three year old daughter's type 1 diabetes diagnosis I've asked myself a million times what did I do wrong.  Thankfully, everything I've read has reminded me that its not about my "errors" as a parents that have caused this.  I'm even more grateful that the Bible has reminded me of God's goodness throughout tough times.  While we were in the hospital one of my best friends emailed me John 9: 1-3 "As he passed by, he saw a man blind from birth.  And his disciples asked him, 'Rabbi, who sinned, this man or his parents, that he was born blind?'  Jesus answered, "It was not that this man sinned, or his parents, but that the works of God might be displayed in him."(ESV)  It brought tears to my eyes when I read it sitting in the hospital and it still gives me chills and brings tears to my eyes.  What comfort from God in the moments when I'm asking "why, did I cause this suffering for my little girl?"  Also did I mention I'm a perfectionist...so this little sin doesn't help. 

The second verse my friend sent us was for our daughter, Marian.  2 Corinthians 12:8-10 "Three times I pleaded with the Lord about this, that it should leave me.  But he said to me, 'My grace is sufficient for you, for my power is made perfect in weakness."  Therefore I will boast all the more gladly of my weakness, so that the power of Christ may rest upon me.  For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities.  For when I am weak, then I am strong." (ESV)  What a wonderful encouragemnt for our daughter as well as for my husband and I!  The apostle Paul knew what is was to suffer yet God used his suffering to glorify himself and for Paul's good.  We heard about an 8 year old boy that told his mom he was glad he knew how to give himself insulin because someday someone might need it and he'd know how to do it.  I pray both Mark and I can help all of our children look at our weaknesses and see ways that God can use them for his glory. 

What am I doing?

I've been contemplating a blog for about 6 months now.  I even have a notebook and file of blog post ideas, however, the name has been the kicker as well as its writing which freaks me out.  I've never been known for my writing skills, but for some reason ideas keep coming to my head.  I thought it would go away once my daughter was diagnosed with type 1 diabetes, but its gotten worse!  Mainly because I've found an absense of positive Biblical perspectives on diabetes.  So here we go.  I hope this is a blessing to someone besides myself:)