My friend Andi's guest blog.

I first met Andi and her husband 6 years ago, before kids, before T1D.  She is a wonderful woman full of meaningful life experiences.  She has an amazing story, one I would like to share with you today.  She is not a mother of a T1D, but she is a mother putting on a brave face... something I can relate to.  I thought her words expressed perfectly what I have been trying to say for a few months now.   October was declared Pregnancy and Infant Loss Awareness Month in the United States.  So please read her story and share.



When I was first diagnosed with uterine cancer, I received a barrage of sentiments from friends and family. Some were very encouraging. Others were a bit backhanded - sure, they said that they were sorry to hear of my situation but then wondered if it was my lifestyle that contributed to the cancer. And yet others - even people I've known for years and years - said absolutely nothing.

I suppose I'm a bit of a romantic at heart. I had this image in my mind that my girlfriends would gather at my home and surround me with love. I pictured them having t-shirts made that said "Team Andi! Screw Cancer!" I pictured them rooting me on and being at the hospital for my major procedures. I pictured them all shaving their heads when I started to lose my own hair.

Thankfully, my cancer was caught in time and I never lost hair. Those movie scene moments never really happened - except for one night when my girlfriends came over for a girls' night and we talked about the diagnosis a bit.

Even though I had an amazing circle of support and love around me, it still hurt me that several people never acknowledged my situation. Never said a word. They acted as if my life was normal when it was far from it.

Fast forward a few years. My cancer is in remission and I'm the proud mother of a beautiful baby boy we adopted in the summer of 2011.

In early 2012, we were told by our son's birth mother that she was once again pregnant and that she was considering placing the baby for adoption. She wasn't sure what she was going to do but wanted us to know as the baby was our son's full sibling. If she decided to place her baby, she'd wanted him or her to be with us.

Several months passed and before long it was our son's first birthday. It was after his party that his birth mother told us that she had decided that she wanted us to adopt the baby. We were overjoyed and thrilled that our son would grow up with his full sibling. We'd been informed by his birth mother that she was most likely having a boy. We decided on the name Jace.

As time went on, things seemed to take a turn. Ultimately, the birth mother was having trouble with her decision. She finally decided to keep the baby. I was heartbroken.

Weeks passed and we heard nothing from the birth mother. We battled on and continued on with life as we knew it. The baby was due September 18th. When the first day of September rolled around, my sadness deepened and I was consumed with a darkness I was not prepared for. I was sad for my son. He has two half-siblings and has met one of them. But this...this was his full sibling. How do I explain to my son that 15 months after he was born that his birth mother had another baby, his full brother, and had chosen to keep him? I did not look forward to that conversation. My heart ached for my baby boy.

On September 7th, 2012, I received word that the birth mother was hospitalized and that she had lost the baby. He was stillborn on September 6th, 2012. My world crumbled around me and my heart shattered into a million pieces. I ached for her. I ached for my son. I ached for her family and mine. I ached for all the people impacted by this tragic loss.

Even though she had chosen to keep the baby, she gave him the name we'd chosen for him. I can't begin to describe this pain, this heartache, this overwhelming sadness that consumed me. I had loved Jace from the moment I knew he existed.

When we made the announcement of his passing, many people gave their condolences. Once again, several said nothing at all. Since my cancer diagnosis, I have been told by some that they never said anything because they did not know what to say. I'm sure this situation was even more awkward to those around us.

I know it's difficult for people to understand why I feel this way. He was not "my" baby. He was not in my belly for 9 months. I never felt him kicking inside me. Why should I be in so much pain when she had changed her mind? These are all the questions that people privately wondered. It's an adoption thing, I suppose. Unless you'd been there, perhaps you'd not understand.

Some people around me acted as if things were fine. Normal. Business as usual. But life for us was far from that.

I wanted to scream: "I'm hurting. I'm not okay. My life has been turned upside down!"

What can you say? Say anything. Say SOMETHING. Just say SOMETHING. Please. I just want to know that you hear me. I just want to know that you understand that I am in pain. I just want to know that I'm not alone in this. Even as a Christian, who believes that my God is always with me and can and will turn tragedies into blessings, I still desire and appreciate comfort and encouragement from my friends and family.

Generally, when there is a situation when I am at a loss for words, I tend to say, "I'm sorry. I'm here. Is there anything I can do? Whatever you need, whenever you need it. Just know that you are not alone. I love you."

I found something on Pinterest that really hit home and I suppose if I am ever in a situation where I do not know what to say, I'll likely say something similar to this:

"To be honest with you, I don't have the words to make you feel better, but I do have the arms to give you a hug; ears to listen to whatever you want to talk about; and I have a heart - heart that's aching to see you smile again."

I am grateful to my friends who have been so supportive during our time of mourning. While the pain still lingers, the encouragement, prayers, and love from the people around us has helped a great deal. Some shared our tears. Others shared our heartbreak. Yet others simply offered a quiet squeeze or hug.

Sometimes, that's all it takes to make these difficult times a bit easier to bear. Acknowledgement and support and follow-up acknowledgement and support. It doesn't matter how close we may be - the kindness of strangers can mean so much, too.

So, the next time someone is going through a rough patch, acknowledge it and if you feel so inclined, offer an ear, a shoulder, or say, "I don't know what to say but I am so sorry that you are going through this" or "I know you're not okay, so I won't ask how you are. I will ask, what can I do to help?" or "Are there any updates? What do you think I should know?" or "Do you want to talk about it?"

It'll make a difference. Trust me.

A feeling of...

After diagnosis, a friend told me I would morn losing my healthy son.  I didn't really get it but I appreciated that she felt it was serious.  I resolved to be strong, and to live life the same as if Johnny didn't have diabetes.  I was going to stay positive.  We of all people could do this.

The past few weeks I am failing at this resolution.

How do I explain what I am feeling?

When first diagnosed, diabetes was an obstacle to tackle.  I am pretty good at that.  I set out to learn everything I could about this disease and how it is managed with toddlers since that is very different than older children.  We struggled in the beginning, but it was understandable and acceptable even... it was the beginning.  As I struggled to keep him from post meal spikes, and post high lows, and those sorts of things, I always had something to hope would help us.  When we were on MDI (multiple daily injections) and didn't have Dex, I would tell myself how much better and easier things would be for Johnny and our family if we could get a CGM-continuous glucose monitor, our Dexcom.  I held on to hope that once we had that, it would be less stressful, less worry, I could see what was happening instead of wonder.  We got Dex, and it did help... but it didn't make living our life the way it was before diagnosis.  There were still lows we couldn't catch because Dex can't keep up, there were still post meal highs which led to major behavior problems... there was still Diabetes to live with.  So then I started putting all my hope for life to improve in getting Johnny on a pump.  Yes, the pump will help us keep him from spiking high or dropping low.  The pump will allow others to be comfortable caring for his needs.  It does... but it doesn't... its just another tool I can use to help manage Diabetes.  He still needs constant monitoring.  Pumping requires more finger pokes not less.  Nights feel more dangerous with a pump.  Ugh....

Our last Endo appointment was a good visit.  Johnny's doctor was thrilled with his numbers.  His A1c was right where she wants it to be.  He seems well adjusted.  She told me that we were "ideal."  I was really shocked by this.  At first I felt a sense of pride.  We are doing it!  But after I thought about this for a few weeks I have a new feeling. 

A feeling of despair.  A loss of hope that our old life is waiting for us.  It isn't. 

But knowing that, really acknowledging this fact and embracing it is freeing.  I don't need to "try" to get back to that.  I can morn losing that old life, but I am excited about our future again. 

Thanks for letting me share.

Bad Romance

In my early twenties I had a "bad romance."  My relationship with D is similar in a way...

While we were dating I would only make time to see friends when I was mad and upset with my boyfriend.  Therefor the only things my friends ever heard about this guy was what a jerk he was!  When I was head over heels and happy, I was to wrapped up in him to make time for friends.  So they never got to hear the good stuff.  We've all been there done that right?

I think the blog is becoming more and more my "friend for when I am mad at D."  The way I write it reads like every moment of every day I am sad and depressed and hating our new normal.

Well... don't get me wrong... I am sad and probably a bit depressed and definitely hating the new normal.  But our lives have LOTS of good in it too.  But when I am busy with the happy good stuff I am not blogging.  So you wouldn't know it.

So I know I have scared a lot of you off lately.  Please come back.  I promise to include more good blog posts too.  I am still going to post the bad, the raw emotional scary bad... but I will make time for the wonderful stuff too.

Stay tuned...

It's still here.

I will admit it.  Some days are fine.  D isn't a big deal, we just check, give insulin and move on.  Some days are a big deal.

I am surprised that after....
every single day for 6 months....
every meal calculated....
every vial of insulin opened...
every book read...
every email to the doctor...
every phone call with the nurse...
every prick of his finger...
every time I have treated a low...
every time my heart races when he acts odd...
every shot I gave him...
every pump site changed...
every scar we create...
every glance at Dexcom...
every huge bill at the pharmacy...
every doctors appointment...
every time I have to explain why my son needs insulin and not low carb diets...

I still catch myself thinking, "This can't really be happening to us." 

But it is.  It's still here.



(There has been so much sad and awful news amoung my friends and their children in the past few weeks that I want to say, just because I feel D has changed our lives completely doesn't mean I think it compairs to what you are going through.  Like I have said before, I have my sugar baby and life is good because of that.)

New Sticky

Every other day Johnny needs his site changed.  We call them "stickies" because, well... they stick to him.  A more accurate word for them would be "inserties" since they are actually inserted into his skin, but I think "sticky" goes over better for everyone.  These stickies are how his insulin is delivered to his body by the pump instead of the shots we used to give. 

Today was a New Sticky Day, so I took pictures to share with everyone.  Please forgive the quality as they were with my phone, then most of them were zoomed in.

 First we head over the the Diabetes cabinet.  Yes my corner cabinet in my kitchen  is 3 shelves, wall to wall Diabetes goodies.  We are shipped supplies to last for 3 months and with most of them being changed every other day, plus extras for "oppsies" that brings it to 50 sets of site changes.  Additionally we have 12 Dexcom sensors, alcohol wipes, barrier wipes, adhesive wipes, adhesive remover wipes and liquid, numbing creams, spare meters, 450 test strips (1 month supply), lancets, urine ketone strips, blood ketone strips, neosporin, and band aids.  (Our refrigerator has about 10 vials on insulin in it at any one time also.)

First thing is first, we need to numb the new site.  I use Press'n Seal squares with about a nickle size amount of numbing cream.I find a spot with enough fat that also is free of recent poke marks and scars to apply the Press'n Seal. Then we wait about an hour.

Once the hour passes, and Jocelyn is settled somewhere for a while we begin.  I gather the items needed.
From top left to right: adhesive remover wipes to take off his current sticky, alcohol wipe to clean the insertion point on his current sticky, neosporin to help the site heal.  We found out he is allergic to latex recently and of course do not have any latex free band aids yet, but it is on the list.  Next, is his insulin cartridge, vial of insulin (Humalog), "sticky", alcohol wipe, adhesive wipe, opiflex tape, scissors, and pump.

We use the adhesive remover wipe all over his old sticky.

Once removed I clean the insertion site (and my finger tips) with an alcohol wipe. (Not Shown)

I also apply Neosporin.

I open the sterile package that contains his insulin cartridge that is loaded into the pump.

I assemble the syringe to draw up the insulin.

I draw about 40 units of insulin.  I tap to remove are bubbles.

I start 3 piles.  Waste / Sharps / To Be Used.

 I then start the program to get Johnny's Pump ready for a new cartridge of insulin.

I open the new set.  This is the tubing that runs from the pump and is inserted into his skin.  We use Contact Detach, but used to use Inset30.  We had to switch because Johnny is allergic to the Inset30 cannula (flexible tube inserted under the skin). 

I attach the tubing to the insulin cartridge.

I run the program that loads this new cartridge of insulin.

This set is 2 peices.  The reason it is 2 pieces is so that we can disconnect the pump from Johnny but still leave his sticky on.  That is great for things like taking a bath, when the pump isn't needed for a few minutes and we don't have to re-insert a new site.  It just clips in or out very smoothly.

Then I prime the set.  This just means I force insulin throughout the tubing and out the needle so that once it is attached to Johnny it is full of insulin and not air.  For reference, I prime about 15 units of insulin.  So it is about 12 units of insulin just in the tube and needle (I let some squirt out).  He only gets 12 units a day currently.  I just want to show you how such a small chemical change in our bodies could kill us.  He would die with out these 12 units.

I then cut a small rectangle of medical tape to tape the sticky down.  I've learned that 3 year old can pull just about anything out if it isn't taped down.

So we begin the actual insertion.  I remove the Press'n Seal, and wipe off the numbing cream with a damp paper towel.

I open my I.V. Prep and my alcohol wipe.  The I.V. Prep makes the area extra sticky as well as cleans it.  The alcohol wipe is actually just for my fingertips because they get so sticky from the I.V. Prep.

I wipe a good sized area, maybe a 2 inch diameter.

Yes it is that sticky, I HAVE to clean my fingertips or the rest of the supplies would stick to me.

I remove the contact paper on all the adhesive parts of his sticky.

Sorry for the blurry photo but this is a picture of the steel needle that stays in him for the next 2 days.  Pretty thin and short.

 I press the needle into his skin where I put the numbing cream.  The other sticky is where we can disconnect the tube from if we so choose.

He get the tape placed over the entire site with the needle.  One time I taped down the tubing that runs between the two stickies.  I found out 2 days later when I took it all off that he was allergic to that tubing as well.  Ugh... It doesn't seem to get irritated unless it is taped down though.

Finally the pump is placed in his SpiBelt and zipped closed.  His pump is locked by the way, so even if he took it out, the buttons won't work.  Its pretty child proof.

 

 Including the numbing cream, stopping to fill sippy, stopping cause Johnny tells me his is nervous, stopping cause Jocelyn needs to be repositioned to stay happy, the whole thing takes me about an hour and a half.  I know it could be faster but it just isn't right now.  So that is 4.5-6 hours a week I spend on this task. 

The good news is that normally he doesn't mind it much.  But when we have to change the site with out numbing cream, because it came out on its own or something, that is when we have a few to a lot of tears.  For these pictures he was way to busy watching a LeapFrog DVD to care what I was doing. 

187 days

Well, we made it. 

6 months of living with type 1 diabetes in our family.

I remember how much day 6 was different than day 1.  I remember how much better 6 weeks felt than that first week.  Today, I can say that 6 months into D is so much better than our first month was.  I hope that it continues this way.  I hope that our 1 year is leaps and bounds from today even.  I hope that 5 years will feel completely different than this first year.  I hope our first decade will be so much better than today, that we will have a hard time remembering how hard it was for us at first. 

1 year ago I never thought I would be living this life.  But I honestly feel I prepared my whole life for it.  I was born "In Charge."  My mom tells stories of how I would ask her, "Do you have your keys, your purse, your receipt?"  I was 3, and not only did I ask but my mom would respond as though she really needed me to ask.  I never fit into any one's molds and I didn't care.  When I was in 2nd grade I had "math-itus."  During math time I would get sick EVERYDAY until finally my teacher would let me sit at her desk and do my work.  It wasn't that I was bad at it, it was that I wanted to be perfect and I had to know after each step, each problem that I was doing it right.  By 4th grade I sat in the back of my class with a 5th or 6th grade math book and worked independently.  By 11th grade I decided I was done with high school and took the High School Equivalency Exam.  I started at a local jr college in the fall majoring in Aeronautical Engineering.  I hated it, so I changed it.  My whole life I set big goals, and if something got in my way I just solved the problem.  Everything in my life has been about finding solutions to problems.  It is what I do.  It is why I can run a business, and many different kinds of them.  It is my skill set. 

So after all this I was just going to stay home and raise babies?  I never have been the nurturing kind.  Why did I feel that I wasn't allowed to want that, just because I was good at working?  But now, more than ever I see that staying home to raise my children is my passion.  It will change, but for now it is not only what I am doing but it is what I WANT to do.  So much of who I am right now is wrapped up in taking care of not only my beautiful (genius) daughter, but my sweet crazy boy.  Then for added challenge we throw D in the mix.  But guess what, I prepared my whole life to be able to manage D.  I do obsess over it.  Johnny's Endo told me in a nice way that I was micro managing D.  Heck ya!  I will take that as a compliment.  It might drive me crazy but it is the ultimate in testing my problem solving skills. 

So what I want to remember 6 months into diagnosis is this:  I was always meant to be Johnny and Jocelyn's Mama.  I came into this fight with D prepared to win.  I have a proven track record at succeeding and getting what I want.  I know how to find resources, support, and answers to get the outcome I aim for.  I have never done anything with out being completely terrified, because everything I do is a challenge.  This might be my ultimate challenge, at least for this time in my life.  Just like every other time before, I will succeed.  D won't beat us.

 

 

 

 

What I can't say out loud

"How's Johnny's Diabetes doing?" 
"Are you adjusting to diabetes yet?"

These questions, or the many variations of these questions are asked to me all the time.  First I MUST say they are asked by my friends and people who CARE.  Thank you!  Plenty of people don't ask.  Plenty of people don't know how to ask, scared to ask, or don't think its that big a deal.  Thank you for caring enough to ask.  I know you mean well.

Asking a mother of a toddler with type 1 "how's it going?"  Is like asking a woman who is pissed, "are you okay?"  She just says, "I'm fine."

My response is usually, "He's doing good."

What I can't say, because I can't bring myself to... because I know it upsets people... because if I upset people they might stop asking... because I feel weak saying it... but mostly because I am tired of crying is this.

He is three and covered in scars already.
He crys sometimes and asks me not to hurt him.
I HATE changing his pump site, but someone has to every 2-3 days.
His blood sugar is often over 400, making him feel bad.
We have to treat low blood sugars every other day or more and never for the same reason.
I got the news online that one of the other online mom's just lost their child due to low blood sugar.
He cries and tells me "I can't talk" because his BG is in the 40s and he is scared.
If he sleeps past 7am I wonder if he is alive... whats worse is if he isn't I don't want to find him so I send my husband to check.  This is my biggest fear, and it comes to mind every day. And now I know 1 in 20 type 1 diabetics will die of low blood sugar.
If I wake up to use the restroom at night, I feel like a bad mom if I don't check his blood sugar.
I obsess about his weight, the carbs, and how much candy/juice he eats to treat low blood sugar.  The doctor tells me he is "technically obese, but don't worry about that."  I worry about it with every bite he takes.
I know more than you do about his D so please stop making helpful suggestions.
If there was a cure, even if it was with organic food, or some herb... I would know about it before you.
Its not going to get better or easier.  We just are getting numb to it.  It isn't going to even out on its own until he is done growing.... like in his 20s.  This is my normal for the next 20 years.  I can't see that far ahead so it feels like it will be my normal forever.
I let my infant daughter scream her head off while I ignore her in the other room treating a low, maybe it takes 5 minutes, maybe it takes 30.  I am practically in tears listening to her.
Every day I am scared of the future, but put on a brave face.
Every day I look at my daughter and pray she doesn't get D until she is old enough to at least understand I don't want to hurt her.

But... "we are doing good," is going to be my response for a long time.  We are doing good because Johnny woke up this morning.  His kidneys are still working for now.  He hasn't lost his eyes to D.  He is in otherwise good health.  He is a happy caring toddler, a wonderful big brother, and the reason I do what I do. 

Alone In a Crowd

One of the many things I LOVE about living in Texas (insert sarcastic tone here) is the beautiful weather we get during the summer.  I mean who doesn't love 109 degrees and humid?  It might as well be snowing or pouring rain because this mama does not go outside when it is that hot.  Does my 3 year old understand this?  No.  This year I decided I could not handle another stir crazy summer because I don't want to leave the house.  Plus, this is our first summer with T1D in our lives and part of me wanted to "prove" (I don't know to who) that he could still be just as active as any other toddler.  So we enrolled JJ for 3 classes a week at an indoor, aka air conditioned, facility for sports, gymnastics and martial arts.  Yay me, I'm super mom again... right?

A few days ago was his weekly Martial Arts class.  Martial Arts for 3 year olds is 1 part the cute outfits, 1 part learning to focus and avoid distractions, and 3 parts running around an obstacle course with a few stations for kicks and punching.  At least that's what I see while watching from the "parent area" behind the glass.  This particular morning was hard for us to get out of the house on time.  I almost didn't go, but I forced it because the week prior we missed a class for this reason and I didn't want to fall into that routine.  So we hurry out the door, and I didn't nurse Jocelyn as completely as I normally would.  However, I brought a bottle of pumped milk and figured she would be fine.  Its about a 20 minute drive to the gym and typically she falls asleep on the way and stays sleeping until we get home... but not this week. 

Pretty much as soon as we get to the gym and Johnny joins his class my little Honey wakes up.  She is not happy.  I get a couple looks from other parents that say, "Oh, I've been there.  It's fine."  I pick her up.  She is not happy.  I do the jiggle the baby while trying to sit in my chair thing, she is not happy.  I get more comments about "remembering those days," and "she is so precious."  Again, more sympathy and understanding from the group of parents, which is really nice because I start to worry that my crying baby bothers them like it bothers me.  I stand up and walk with her... nope didn't work.  I sit down and try the bottle, I try it holding her in various positions, I try the pacifier, I finally resort to the standing bounce and half squat thing... nope.  One woman offered to try the bottle for me as sometimes babies wont take a bottle from Mama, I declined but thought it was so nice to offer.  30 minutes have passed at this point.  So I do what I know will work, but I hate to do.  I buckle her back into the car seat and I become her human swing.  If you have never done this before, it sounds easy.  If you have... then you know better.  To swing a car seat you have to lean over just enough to have the car seat swing past you legs with out hitting them, but not too far or you will fall over.  Back pain is guaranteed, but its better than the screaming baby.  This has now prompted a few DADS to smile at me, because lets be honest ladies... this is Dad's job.  15 minutes later and I feel she is a sleep enough that is now safe for me to stop being a swing and put her down.  Whew!  I am a sweaty mess from my 45 minute work out.  I sit, blot off my sweat and reflect on how nice everyone was to me.  Texas is great in that way.  I grew up in CA, and I am positive I would not have had that kind of support from total strangers in the area of southern California that I am from.  Class is almost over.  I pack up the bottle, the pacifiers, and all the other Jocelyn goodies I had out.  I get out Johnny's dexcom (its out of range when he is in class so it doesn't give a number) and his testing kit.  When he comes out of class I have him sit and drink his "bubble juice" aka diluted carb free flavored carbonated water, and I test him.  He keeps asking to get in the car.  Jocelyn is stirring again now.  I wait for the number, formulating a plan to get to the car, turn on the air, give him a snack and go home.  I just need to know this number and have his dexcom connect so I can decide how much of his snack I should give him insulin for.  After exercise he doesn't need insulin for every carb like he would before exercise.  Tick tock... 5 seconds always takes forever to pass when I am in a hurry.  Then it beeps and gives me the number I need to move on.

45

(Insert the F word here)  For my non D friends.  If you check your blood sugar in the morning after not eating for 12 hours you will most likely be in the 70s give or take 10.  Below 80 and I feel shaky and anxious.  45 is beyond low for any one with a normally functioning pancreas.  I've never been that low to tell you what it feels like, but this is what I read online:

Symptoms of hypoglycemia may include:

• weakness, drowsiness, confusion, hunger, and dizziness.
• paleness, headache, irritability, trembling, sweating, rapid heart beat, and a cold, clammy feeling are also signs of low blood sugar.
• loss of consciousness and coma (in severe cases)

He was 185 and rising 45 minutes ago.  Class has never caused him to go this low!  Why this time?

Whatever, we move on.  I have learned asking why is pointless.  I hand him the 15 carb apple juice.  The other day I let him have 17 carbs with out insulin to see how much it would bring him up and he went up about 200 points.  So if D played by the laws of Math we should see him at 245 after some time as passed.  I am now actually sweating.  My adrenaline kicks in when I see numbers that low and I can't help but sweat.  The parents are all clearing out, they get to leave.  They don't have to check their kids blood every time they go somewhere to make sure it is at a safe level to take a 30 minute car ride.  I feel that envious feeling I am ashamed to feel. 

After 15 minutes, Jocelyn is awake, not crying but fussing.  I am kneeling on the ground in front of Johnny sitting in his chair.  I poke him again, I squeeze out the drop I need, I test him again, I wait for the number... I am almost sure it will be at least 100.  We can get in the car, Jocelyn will fall back asleep, I can give Johnny his snack and if he is high when we get home I will correct him then.  I have a plan... I always have a plan.  The meter beeps and gives me the number.

56

45 pisses me off, but 56 after all of this effort just sinks my heart.  We can't leave yet.  I give him the package of skittles.  I can feel people looking at us with out making eye contact.  It is weird.  My mind plays internal dialog like, "Why is that overweight mom, giving her husky boy skittles at the gym?  Doesn't she know she is going to make him fat like her?  That poor kid, I would never give my kid candy after exercising."  Johnny eats his skittles and asks for more juice.  I only have 1 box left and nothing carb free.  I don't want to give him more juice because I KNOW the 15 carbs of skittles will be enough.  I look around and see a water fountain down the hall.  It is just too far away to leave Johnny and Jocelyn to go fill his sippy, but I can't pack everything up and take both of them either.  It would take me just as long to pack up and get to the fountain as it will to wait until I can test him again.  I still feel everyone looking at me, not saying anything.  We are the elephant in the room.  I decide, I am going to ask someone to fill his sippy at the fountain for me.  I look around, not standing up because I am on the floor rocking Jocelyn to keep her from screaming.  No one will make eye contact.  Its a loud gym, I would have to yell to get attention at this point.  People are walking by, looking at Johnny and quickly looking away.  Even his instructors who KNOW he is diabetic just turn and go the other way.  I am making them uncomfortable.  Where are all those helpful supportive people now?  At least 5 complete strangers would have helped me with a crying baby, but now that my son is in real danger I can't even get anyone's attention.  15 minutes go by, I test, he is 110.  We pack up and leave. 

On the way home I had a good cry.  I felt so alone with so much on my shoulders.  I couldn't wait to get home and tell someone who would understand.  Someone who has been there, someone who has felt that anxiety of is 45 going to get better or worse?  Do I have the glucagon shot?  I was so eager to get home and share this with the women whom I have never met but mean so much to me.  The Diabetic Online Community "DOC" means more to me than I ever thought it would.  I think I even bashed them early into our Journey.  I felt I wouldn't become one of those worried moms, and I would rise above it.  But everyone needs a place to feel safe, and to feel understood and these moms (and a few dads) provide that place for me. 

So even though I was too busy to actually share this story with them when I got home, knowing I could and that they would all understand made me feel so much better.

To those of you (and you know who you are) who are always there for me, riding this T1D ride with me, laughing with me, and crying with me.  Thank you!  I may not know your face, but I know you, I know your kids, I know which of you will be in tears by now, lol.  Thank you for reminding me that I am never going to be alone.

The Bionic Boy

Johnny has officially been pumping insulin for 4 weeks!  We are really happy with the results and learning new things about Type 1 Diabetes, about managing his BG with a pump, and about continuing to live as close to how we would have been with out D in our lives.  We have a lot more highs and lows than we used to but, I can see reasons and trends and we CAN fix most of them, but we are making small changes so it is a slow process.

For the few days leading up to Johnny switching from MDI (Multiple Daily Injections) to Pumping I was wondering if I was going to change my mind about the whole thing.  Every time I thought about seeing him "hooked up" to the pump I would cry, a lot.  I don't talk about it much because I feel I am not allowed to be weak when it is really Johnny, not me, that has to go through this forever.  Let me explain.  I still struggle with March 7th.  You see... March 7th 2012 was the last day my son didn't have an illness.  Of course he did actually have it but it was March 7th that it was diagnosed, given a name, and put into our reality.  When I look around my house, there are 18 framed pictures just downstairs of this sweet boy.  I am that mom!  I would have prints of every event done and hang them up.  But I haven't done that since his diagnosis.  His 3rd birthday party was just 3 weeks later, and now 4 months after that and I still haven't had a single print made of it.  Part of me doesn't want to take down the pictures of him when he was still "perfect."  I want to hold on to that baby.  So as far as pumping goes... I knew that the day we started pumping, July 9th would feel similar.  From that day on I would not see my baby with out a tube connecting him to a pump.  The thought of him coming downstairs last Christmas morning with out a pump connected to him, and knowing that will be the last Christmas I see him with out one eats away at me.  I think of swim parties, and Halloween costumes, and so many other times when I know that PUMP will be there like a constant reminder and announcement to others of his Diabetes.  It doesn't matter how much it helps him, I am mourning the loss of the boy with out on. 

But now 4 weeks later.  It bothers me so much less.  And mostly because he doesn't care at all.

I now present to you The Bionic Boy, with a better control of his blood glucose!



Device on his arm is his Dexcom sensor.  It is wireless and comunicates with the reciever to tell us if his BG is going up or down.  The belt he wears holds his insulin pump.  You can see a small tube coming down from his belt to the blue clip on his thigh.  That is clipped into the adhesive area where a small canula is inserted under the skin.  So he can unclip the tube and take a bath with out wearing the pump, and with out needing to reinsert the canula.

Dex & Jocelyn

When Johnny was diagnosed with T1D, the hospital staff and our Endo team took a lot of time to comfort us and make us feel like once we went home, we would just find a new routine and life would resume like normal.  Eh.... not quite... I guess we do have a new normal... but it really isn't the way they made it seem. 

I never immagened what a big world T1D would open to us.  There are so so many types of products for people with D.  There are cases, accessories, belts, coolers, toys, books, and on and on.  I learned about Insulin Pumps, and have decided that we really need to get Johnny on that type of insulin therepy as soon as possible.  We had set up private classes Johnny's team to fast track him to the pump before his little sister Jocelyn was born.  Very exciting.  Our Pump arrived and we are just waiting to do our training with the educators.

Another device that we learned about is known as a CGM, continuous glucose monitor.  There are some things that I have learned about that seem like they would be nice to have but THIS seems like it should go home with you the day you are diagnosed with T1D.  It is amazing how much it helps us manage Johnny's BG and keep him safe.

This grey transmiter is a device that is worn for 7-21 days, with a small bit inserted under the skin.

It gives blood glucose readings every 5 minutes to a remote reciever that you carry, as well as tells you if BG is going up/down and how quickly.

Sounds WONDERFUL!  Unfortunately it is not approved for use in kids under 18 years of age.  I almost didn't even request information because if it isn't approved for kids there is no way our insurance was going to cover it, and financially we are tapped out this year.  But... I met a woman with a boy the same age as Johnny and hers was covered!  I decided I had to at least find out.  Shockingly, it was approved by insurance and we recieved our Dexcom 7 just a week after submitting paperwork. 

Johnny wore it for the first day on Tuesday June 12th. 

It was really interesting to watch how his blood sugar reacted to each meal and snack.

Tuesday night, I couldn't sleep.  It turns out that our sweet baby girl wanted to make her entrance into the world 4 weeks early so we checked into the hospital at 3am Wednesday morning.  Grandma came over to take care of Johnny and I literally had no time to explain Dex to her, and my husband hadn't even learned yet.  After all it had been on for less than 24 hours.

Johnny's baby sister was born at 7:28pm on Wednesday 6/13/12.  She was 4 weeks early, 7 lbs 13 oz, and very healthy. 

I was so happy to have her with us that day, but I was disapointed that she came so late in the day.  The reason was that it was too late for Johnny to come up and visit us.  That was the first day of Johnny's life that we were apart.  I know he was in great hands and from what I hear, he was not upset that Mommy and Daddy were gone.  Daddy did come home and spend the rest of the week at home with Johnny, they came and visited Jocelyn and I every day.  Johnny has been an awesome big brother from the very first time he met her.

We have almost been a family of four for two weeks now, and we have yet to have to change out our Dexcom site.  We have a baby monitor that used to focus on Johnny at night, that now reads our Dex for us so we can keep an eye on his BG from our room, which provides more peace of mind than I can explain. 

Dex has been wonderful, but the real star of the past 2 weeks has been Jocelyn.  We are all so in love with her.  She has been a super relaxed baby so far, letting us all ease into this new routine.  She looks just like her big brother by the way!

Top: Jocelyn 2 days old, Johnny 1 week old
Bottom: Johnny 1 day old, Jocelyn 1 day old

Have I mentioned that life is wonderful?

My Other Half

2005-before marriage/business/kids/t1d

This blog is written from my perspective as the MOTHER of a T1D (now 3 year old) boy and how our family is dealing with this.  But, my husband has his own view of how our family is changed, how we handle T1D, and his own emotions surrounding our son's diagnosis.  Getting him to write about these feelings however, isn't going to happen soon so for now I am choosing to continue with my views, and include my views on my husband.

Most moms that I have known (T1D families or not) feel that their husbands can not care for the kids the way that us moms do.  This is not a criticism from most moms, just a simple biological fact.  Most moms I know, especially new moms, have very low expectations for when Dad is watching the kiddos... like "If they are alive when I get home, then he did a good job," or "As long as they eat dinner and get into bed I am happy."  We don't expect the house to be kept the way we keep it, or dinner to be well balanced, or tv rules to be stuck to... we are just happy that we were able to take a break.  (If you and your husband have different standards, my hat is off to you... but among my circle of friends this is kinda the standard.)

When we first came home after Johnny's diagnosis I felt the weight of this on my shoulders.  That doesn't mean my husband wasn't there and wouldn't help, I just TOOK IT from him.  I wanted to make sure Johnny was cared for completely and as his mom, I felt I would do it best.  My husband is 100% supportive of me and I think he "let" me take over for 3 reasons... 1) He was a little scared; 2) He knew I would do a great job; 3) He knew I wouldn't be happy unless it was my way.  Poor guy, and yet this is why we are a team.  Even though I did most of Johnny's T1D management at first, it takes a team player to back off and let me do what I needed to do.  After a few weeks I started to let go of this control and started to ask my husband to take on more and more responsibility for managing Johnny.  It was hard, sometimes he didn't do things EXACTLY the way I wanted him to.  Sometimes the parts of his management that I found to be extremely important, he let slide.  I broke down and cried many times after finding out that my husband didn't check him when I would have, or didn't give him carbs when I would have, or the list goes on and on.  I felt like this would forever be my job to take seriously because my husband didn't.  Well, of course that isn't true.  It is very similar to all parenting topics, we don't do things exactly the same way... but that's okay.  Our son is okay, and needs to know that he can be with Dad and be safe even if it isn't like it is with Mom.  We still have situations when I feel my husband should have handled something relating to T1D differently but it is no longer upsetting... it just comes with having multiple people caring for Johnny.  I am so lucky to have multiple people who can/want to care for him, and as long as he is safe I have to let go of a few details. 

While we are preparing Johnny to get an insulin pump we have had to do a lot more intensive logging of blood glucose readings as well as food logs.  We had to check blood glucose at morning, 2 hours after breakfast, before lunch, 2 hours after lunch, before dinner, 2 hours after dinner, bed time, midnight, and 3 am.  Then we had to log in detail what Johnny ate, when he ate it, exactly how much he ate, and how many carbs were in it.  We also had to make notes about abnormal activities such as pool time, or play dates, or being sick, or being sleepy.  It was a lot to log for a week, but adding the midnight and 3 am checks for a week was exhausting.  In the middle of this week long logging I was admitted into Labor and Delivery at 34 weeks and had to stay for 3 days for tests.  I prepared myself for the possibility that between caring for Johnny around the clock, driving back and forth to the hospital, and managing our 2 businesses that the Logging might not get done by my husband.  I decided that it would be okay and that I wouldn't even mention it to him and I would be completely understanding if he didn't continue with it.  There is only so much 1 person can do.  To my surprise when I got home from the hospital it HAD been done!  Because of this we were able to meet with Johnny's team the day after I was home from the hospital and have been approved to order his insulin pump... 1 step closer!  

I want to share with everyone how proud I am of my husband.  He really is my other half.  Often when I feel like I am doing more than my "half" I should take a step back and really look at if I would let him do more or if I took it from him.  Whenever I have needed someone to fall back on and catch me he has done it, and I am sure he could/would do it a lot more if I wasn't the control freak that I am.  I am certain that he often isn't doing more because I have made it my job and he knows not to step on my toes.  I am also certain this doesn't apply to housework, lol... but that is okay! 

I love you John!  Thank you for being my other half in this family, and for catching me when I stumble.  I don't give you enough credit sometimes.

Smooth Sailing on the High Seas

I have a habit of only posting to this blog when things are not going well.  Its been a while since my last post, and things are fine.

Johnny is out of school for the summer.  Which means POOL... well my version of the pool.  We have a great little backyard pool that Mommy, Daddy, and Johnny can hang out in and beat the heat.  Johnny loves it, we are in it as early as possible and sometimes our last dip is just before bedtime. 

While things have been "smooth sailing" around here lately, Johnny has been running high (BG of 230-350) most of the time for about 3 weeks.  His team adjusts his insulin weekly and they do it in tiny amounts to keep him safe.  Week 1 showed highs, turned in the numbers and got some instructions to LOWER his long lasting insulin thinking that he was actually going too low at night creating a "rebound" of higher numbers in the morning.  So we did this for week 2, still high... but now higher!  We turn in the numbers and are told not to change insulin doses yet because we also learned we were always rounding down, and that was wrong.  I wish I knew the nurse who TOLD us never round up, but whatever.  I was just frustrated because I am doing what their team tells me to do and its wrong, not a big deal except I have to wait a whole new week to watch the numbers and see if now that I can round up it will effect his sugars enough.  I waited 3 days, it didn't work.  So I called today and told them I didn't want to wait another week so we finally got our breakfast insulin dose increased.  That's a start.  I am happy about it.  Hopefully we are 1 step closer to getting him closer in range. 

But really none of that matters in our daily life.  We are happy and doing really well.  Again, its been smooth sailing.  I remember that first month, high numbers would drive me bonkers.  I worried constantly, now I just see it as a number to write down to better adjust our medication next time.  We are in a good D place. 

Johnny is getting ready to be a big brother very soon.  Our doctor has told us he wont let us go more than 5 weeks if we make it that long, so we are busy preparing the house as well as Johnny for another big life change.  He is such a help, he has helped me fold and put away his little sisters laundry, as well as wipe down his old baby equipment.  Johnny is learning to take on a little responsibility too.  We have a new "Star Chart" as we call it, not a chore chart.  He gets a star for doing age appropriate tasks such as feeding our dog and picking up his toys as well as for good behavior and habits like brushing his teeth, using the potty, and not yelling when Mommy is on the phone.  So far (2 days) it is working well.

Mommy and Daddy are working on getting Johnny on an insulin pump as soon as possible.  We attended our first class required by our Endo team, and we had the rep out to our house to get familiar with the device and complete the paperwork.  We have been approved by insurance and now are just waiting on the final approval from his Endo team.  We have another meeting with them next week and I think 1 more after that.  I really hope he can start in 2 weeks, and mommy is pretty good at getting what she wants. 

Thank you everyone for your constant support.  I love being able to openly share our lives with you. 

Observations

It has been a smooth few days around here as far as T1D goes.  Sure we have had a black eye, and a summer cold... but D has been playing nicely.  We are still adjusting dosages by the smallest amounts and maybe we always will.  I think that since his body is constantly changing, so will his doses (for a few years at least). 

I was watching a cute chick flick the other night in my "me time."  There was a 1 liner that really upset me, so much so I had to rewind it after a while because I couldn't focus on the plot for a few minutes after I heard it.  Here was the scene:
Man and Woman are on a date.  After dinner the man brings out a box of chocolates for the woman to eat right there at the table with him as dessert.  The woman says, "Are you trying to make me diabetic or just fat?"  They laugh, end of scene. 

Okay, so I get it... pre diagnosis I couldn't have cared less about something like this.  The reality is that 90% of diabetics are type 2, not type 1 like Johnny.  Its clear to science that being overweight is a big risk factor in developing type 2 diabetes, so I understand the line.  Doesn't make it right, to laugh at type 2 diabetes but my point is I "understand" the relationship between being fat and type 2 diabetes.

The reason I am upset is because all of pop culture that ever discusses diabetes seems to relate it to an unhealthy lifestyle.  So Johnny's teachers, peers, and strangers who see him injecting insulin have been told over and over again by our culture, that he brought it on himself.  Its his fault (or mine), and he should just eat better. 

Being fat also increases risks for a lot of other diseases but for some reason those are too sad to joke about.  Being overweight increases my risk for breast cancer but that wouldn't have been a funny line in the move.  "Are you trying to give me breast cancer or just make me fat?"  Not funny.  "Are you trying to give me hypertension or just make me fat?"  Still not funny.  "Are you trying to give me sleep apnea or just make me fat?" .... "Are you trying to make me have a stroke or just make me fat?"  Nope, still not funny.  But, "Are you trying to make diabetic or just fat?" sounds much more like they go together and we can laugh, cause clearly diabetes is an okay disease to make jokes at. 

Lines like this down play the seriousness of my son's disease.  Lines like these are why people (including myself before I joined the D world) think diabetes is simply treated with insulin and not a big deal.  Lines like this is why it is so hard for others to understand that today is just not a good day for me as a mother.  If my son had a disease that no one laughed at, that was viewed just as serious as other auto immune diseases, then maybe I wouldn't have to explain why I can't sleep at night because I worry about him.  Maybe people wouldn't think I am exaggerating when I say, my son is on daily life support that I provide in the form of 4-5 injections a day.  When I say I am stressed out, they would understand that I am constantly thinking about his health, his blood sugar, if he is too low, if he can eat something, if he NEEDS to eat something, if he can play outside, if he finished all his snack or just gave some to the dog, if it is safe to leave him with a sitter, if it is safe to send him to his grandmas, if he can handle being hooked up to a computer 24/7 at this age or if we should stick with 4-5 shots a day... and that I worry about these things because they are actually a matter of life and death.  Kids do actually die from the disease that Johnny has.  Instead, society thinks if you eat too much chocolate you will get fat, or if you are lucky, you will just get diabetes. 

(I know that all moms of kids with special needs must come across this at sometime and that really, no disease or difficulty our children face is "safe" from being made fun of or down played in our pop culture.  But now I am a D-Mom, and this is the topic near and dear to my heart.)

To my friends and family who I know read this and offer support.  Thank you!  I like to think that you are on this journey with me.  As I learn more and more about this D world, it feels so good to be able to share it with you.  This observation is just one more thing I felt like sharing with the many of you on this journey with me.

Everything I thought I knew has been wrong.

9 weeks ago today I found myself with a sleepy 2 year old boy at 9am, and thought how odd he was acting.  I was waiting for the flu to kick in for 2 days, as he was acting "off" during flu season... but 2 whole days and all that was happening was he LOOKED awful and was sleepy.  I am so glad I just took him in to the doctor, I truly believe if I waited just 1/2 a day more we might have lost him. 

When I was given his diagnoses of Type 1 Diabetes I had a lot of assumptions for what that would mean.  All of them have been wrong by the way.  I thought I would share some with you because I am sure you have them too, or did 9 weeks ago.

I assumed that Johnny would be on a low carb / low glycemic index diet for the rest of his life to be healthy.  Things like pizza, cake, even crackers would be cheating and should be avoided.  However, this is very false.  Johnny can eat all foods that a non T1D kid would eat.  Healthy options are best, because they are best for all toddlers.  No restrictions at all.  (Good thing to be wrong about)

I assumed that going on outings like the park or grocery store or play dates wouldn't change at all unless it was during a meal time.  However, I now bring with us EVERYWHERE the following: Insulin Pen, Pen Needles, Alcohol Wipes, BG Meter, BG Test Strips, Lancet device, extra Lancet, emergency injection of Glucagon, suckers, skittles, juice box, and keton test strips.  Of course this is in addition to what we needed to bring for a normal 3 year old, diapers, snack, sippy, change of clothes, and a toy.  By the way, we can't leave these supplies in the car at all or they will go bad and cost a lot to replace.  (We did this once, FIVE minutes in an un-airconditioned car and the insulin went bad.)

I assumed that Johnny's behavior wouldn't be changed because of diabetes unless I changed how I treated him.  However, I was extremely wrong.  There are times of the day that Johnny is his old self, he is happy and loving and playful.  Currently I have about 4-6 hours a day of a different Johnny though.  This Johnny is aggressive, difficult, defiant, stubborn, hyperactive, 0 attention span, and can be mean (hurts me to say that about my own child).  This behavior starts about 45 minutes after a meal and lasts 2-3 hours then he returns to his other self for another 2 ish hours until the next "mealtime" that causes his blood sugar to rise and spike so high that he is miserable.  I have said in previous posts but will repeat it here.  He is technically under control as far as medical opinion goes because at meal times his numbers are in his target range of 100-200.  What is happening though is after meals he spikes SO high (typically 300's but we saw as high as 600+) then the insulin does its full job and brings him back to range by meal time.  I don't know what it feels like to have your blood sugars rise and fall so much so rapidly.  I don't know what it feels like to have blood sugar in the 350s.  What I do know is that when Johnny is experiencing these highs and drastic swings he is such a different kid that it must be miserable.  I have also become very deterred from taking him out of the house during those times.  I don't want to deal with this version of my son in public.  To say he is extremely difficult to manage is an understatement.  I will still take him to activities alone, say the park for example but there is no way I would try to run an errand like the grocery store during this time of the day. 

I assumed that having T1D would mean that at breakfast lunch and dinner I would be presented with a math problem using his current blood sugar reading, the amount of carbs he ate, and his insulin and that was ALL I had to do to keep him healthy.  Other than 4-5 shots a day, life would be exactly as it always was... I just had to give his body insulin at meal times since he doesn't make his own.  I could handle that.  However.... I couldn't have been farther from what my reality was ACTUALLY about to be like.

I wake up on edge daily wondering if my little boy will also wake up. Or did I miss a fatal night time low while I was selfishly sleeping.
I feel my heart beat just a little faster when he sleeps in beyond his normal time.  I don't let John leave for work with out waking Johnny up because if something is wrong with him I can't be here alone.
I sometimes hold my breath when I am waiting for the meter reading, not always but when Johnny is acting low... how low is it going to be?
I check his BG at the normal times (morning, meals, and bed time snack) just like the doctors told me.  I also check if he falls asleep, acts fussy, asks for sweets, when we get to an activity, 30 minutes into the activity, after activity, every hour after heavy activity, before John and I go to bed while he is asleep, at 2 am if our bedtime check wasn't above 200.  If he has a low reading (which we have caught a low reading during each of those "extra" checks listed above) then I have to check him 15 minutes after treating the low, and repeat if it isn't high enough.  The thing is checking BG isn't a big deal, he doesn't mind it, and he lets me do it all day if I want... but the point is WHY I check it.  If I check 10 times a day that means that there were at LEAST 10 times when I worried that this might be the time Johnny is low, going low, or might need the emergency shot.  It doesn't matter how rational it is that I feel that way, it just is.  My anxiety about my 3 year old state of well-being is CONSTANT.  It is draining.  I wish it weren't justified, I wish that I was over reacting... but multiple times a week I catch a low testing him at one of the times other than the 4 the doctors said to check at (meals and bedtime).  Just yesterday Johnny feel asleep for a nap in the afternoon on the couch.  I checked him and he was 94.  94 is low, but technically it is safe and not something I should treat.  I KNEW he would go lower but I don't want to jump the gun and felt I would follow doctors suggestions and leave him be.  30 minutes later I test him in his sleep and he is 64.  (What if I waited 1 hour to retest, would he have been 62 or would he have been 34?  The stress of not being able to predict how his BG will react is this weight that gets heavier for me every day.  It may not be that heavy, but I never get to put it down, it is with me everywhere I go at all times.)  64 is also not life threatening, its not even close to the lowest Johnny has been but I still have to treat it.  Other toddlers could nap, but this one has to be woken up and given a fast acting carb, we choose to use skittles.  When I wake him he is scared to death of me, kicking and hitting me trying to get away from me while at the same time frantically calling "mommy" in a panic.  Was this because I woke him from deep sleep or because his BG was dropping?  I don't know, but it breaks my heart to hear him in that kind of distress and either way, if it weren't for Diabetes it wouldn't have happened.  It makes that weight I carry just a little harder to hold up during these times, but I do.  Once Johnny was fine and happily eating his skittles and watching Dinosaurs, I leave the room to cry.  Its the only way I know to let it out.  Again, I have a lot of supportive people in my life so it isn't that I have no one to talk to... it is that I don't have the words to convey my emotions to them, which is totally crazy for me. 

I wonder how I will ever let him be a normal kid.  (Oh I will, I just haven't figured out HOW.)  How the heck am I going to let him ride his bike 2 blocks to his friends house, even if his BG is fine when he leaves?  I have seen it drop 90 points in 1 hour.  If he gets too low, he mentally might not be able to process that his is low to fix it.  How will I let him go water skiing at 16 with his best friend and their parents?  (Actually, maybe I shouldn't let this one happen.  Growing up in California I can't believe how many "critters" live in the Texas lakes.  It might not be Diabetes that gets him water skiing... it might be those alligator/crocodiles... I don't know which... the green things with teeth they find occasionally in the lakes here.)  How will I let him attend a birthday party while in grade school with out me?  Trust me I will!  He will get to do EVERYTHING he wants to do that other kids get to... but for now, it scares me to death to think about.

My Pump Fantasy

Well we are 9 weeks into being a T1D family.  I am both surprised it's been that long, and also shocked that 10 weeks ago we didn't have a clue it was coming. 

Numbers are more stable at meal times, the times that doctors want me testing Johnny.  According to the excel sheets he looks like we are managing his diabetes well.  But I don't feel that way.  The issue I am having is that between the times we are "supposed" to check Johnny's blood glucose, he can have HUGE spikes in his BG.  When he spikes it makes him agitated and irritable.  Like 3 year olds need a reason to be difficult, he is practically impossible to be around when he is high.  If I discipline him for all his actions when he is high, he would just sit in time out the entire time, multiple times a day.  He is mad, yelling, demanding, defiant, and sometimes flat out mean.  Yet because his numbers are correct 4 times a day we technically are doing well???  It isn't working for me, and that is selfish because the truth is it isn't working for him most importantly! 

So what do we do about this?  I am not sure but I need to find out.  I have guesses but none are based on medical advice so until I see his Endo about it Thursday I will just keep an open mind.  We had to lower his long lasting insulin a few weeks ago because he was waking up too close to hypoglycemic numbers.  Maybe there is another isulin option that will work better during the day and not at night so that he stays lower during the day and doesn't go low at night?

Or....

The Pump. 

http://www.animas.com/animas-insulin-pumps/onetouch-ping

I don't want to see the pump as a magical device that is going to solve all my problems, but it sure sounds like it will!  I was hesitant to put Johnny on a pump until he was older because I wanted him to really understand what it is and why he should be happy to do that instead of multiple shots.  But, now I don't know if waiting is really what is best for him.

Here is a short explanation of what "I" understand the pump to be.  I could be wrong, and will find out more in a few days.
1) It replaces the need for injections of fast and long lasting insulin by providing small doses of fast acting insulin in smaller doses all day and night, with the ability to release larger quantities as needed when carbs are consumed.
2) Johnny can eat whenever he is hungry.  He will not need to wait the 2 hours between meals and snacks.  If he isn't hungry at snack time he can skip it with out going low,  (Currently, if he skips a snack because he was napping, playing, or just didn't want to eat he will be too low by meal time.)
3) Because the pump is always connected to him we can give small corrections of insulin ANYTIME he is high, like these between meal spikes! 
4) We can disconnect or adjust his background insulin to be less when he is or has been very active.  Often when I give him his back ground insulin now, I have no idea that later that afternoon he will be swimming or playing hard at the park, it is so unpredictable.  But with the pump, the background insulin is giving throughout the day, so I can adjust it daily depending on his activity.
5) Less intimidating for others.  What I mean is I know the thought of watching Johnny makes other people nervous because of the needles.  No one that doesn't have to give multiple injections to a toddler really wants to sign up for that.  However, reality is that John and I are going to need to be able to count on others to help us take care of Johnny.  He will need to go to school and not have mom show up for each meal and snack.  He will need to be able to play at a friends house, or visit grandma, or stay home with a baby sitter.  I think having a pump, a small computer that his caretaker just types a number into is a lot more attractive to people than an injection is, and therefor will create a wider support system for our family with less room for errors.  Maybe I am wrong, but it makes sense to me.

There are downsides to a pump, however I really haven't met anyone who didn't think life on the pump wasn't much easier to manage than shots... especially mothers of T1D toddlers.  I think we are heading down that road.  What I know for sure is that all the moms have warned me that it is a very rocky start.  Lots of bad numbers for 4-10 weeks while the correct insulin is worked out (mostly trial and error) so I need to be mentally prepared for that.  I remember that was really difficult to handle with Johnny and we only experienced it for about a week.  Knowledge is power though, so if I KNOW to expect it... I hope I will handle it better. 

Fingers crossed that all my pump fantasies will come true.