Hold On!

Wow...What a month it has been. And it doesn't seem to be slowing down at all anytime soon either. A lot has happened a lot is happening and a lot is going to be happening. Hold on for a wild ride I may say.

First and foremost Emma's diabetes. Talk about momentum and a rhythm we have gotten from even this past week. Her BG has be bang on. In the morning she will wake up to any variance from 4.8 to 5.8. Actually today and yesterday she woke up at 6.9 and 6.1. Her goal is to be from a 6 - 12. And i think that is absolutely tremendous. Her day care lady Auntie Linda (our hand picked angel) tests her before lunch her average hit 6.06. Way to go girls! That is the hardest one to hit because her NPH will peak at that time. So another massage gift certificate will be coming her way very soon. Thanks Auntie!

Her insulin in the morning has been (im afraid to say) somewhat pleasurable. Emma seems to find this way of making such a thing into a game and a positive experience. I only have to mention its time for her insulin then she races to a selected spot takes off her own shirt and waits for me. The other day when i was done administering it she reached out her other arm and asked for more in that one too. So i guess im doing something right.


So that's that for now among the fact we are moving into a new place in January. Looking for a new car. Maybe two. I applied for a sales job last week and everything is looking pretty good. So we do have a lot being served to us at the moment. In lieu of expanding on this and writing an entire essay on this i will leave this at that.

But everything in perspective Emma is safe doing very good. Both me and my wife check this blog like 20 times a day to see if people are listening to us and commenting. We love your stories. We love the people in our life right now. Everything is going so fast and furious right now but I wouldn't give that up for anything. The thing I know for sure is when we get to where we are going it will not compare to the journey itself.

More

The learning curve does not seem to be leveling out these days. Since we are more or less taking it day by day it seems like everytime we turn around there is something new that we encounter. This is good. Because I have been on a information gathering frenzy lately. There is more and more to wrap my head around so I know it is important to take things as they come and even school myself on what is happening that day.

I am reading a book right now (Yes everyone sit back down and hold your applause, thanks) called "When a Child Has Diabetes" because I seem to be asking Denise a lot of questions about everything. And I feel I haven't really been doing my part in the entire knowing the overview of certain particulars. With saying that Denise is my most reliable and most available source of information these days.

This entire blog thing is extremely useful to us. In lieu of actually meeting families and people with diabetes this is the way we are doing it. This is a great communication device. Even with the last post regarding the Glargine, we instantly received feedback about others experiences and opinions about that issue. Totally awesome!

Please always comment on anything you have to say about anything we are going through. We will never take it as being lectured or being told this is better than that type of canary. Technical comments as well as supportive comments from both family and friends (friends I do include fellow webring contributors) are always welcome and encouraged.

To my sisters,
Charlene you said you don't have first hand experience with type 1 diabetes, and that was more or less the cause of you not commenting, En contraire mon seour, but you do. You have your own questions and ways to deal with a niece that has this disease. It may not consume you like it does us. But I know you think about her and us all the time. Yours and Jenns support has been incredible. I never doubted you guys for a split second on this. I love that you come over and all we talk about if I want is this. And show you her equipment, and even inject you with saline. Totally great!

Jenn I know your 3,000 or so kms away living the dream in TO, but we still read your comments and blog everyday. Emma still knows where Amy lives. So were cool but you have to come home for a visit real soon.

This is one great thing that Diabetes has brought us. It has brought us many new friends. It has enabled us to really know what is important. It has allowed other people to show their compassion towards us and especially Emma. I guess in a great sense of the word it has brought us a lot of love.

Three Weeks Later

Today was Emma's 3 week visit back to the clinic. Wow I cannot believe it has been three weeks. It seems like it has been 3 months. I know we have only touched the tip of this so far. If I was to give this entire time a review based soley on our performance and effort i would give us top grade. Of course we stumbled a little bit here and there but it is good that we did or we would not be learning anything. And once we stop stumbling and learning i believe that we are doing something wrong.

We had a meeting with a the research specialist today at the clinic. He was going over different types of studies that have been done. Ands various types we can be involved in as well. Im sure sooner or later we will definitely be interested with being involved in them. As well for some of the research we can have family members join too. But we have alot on our plate at the moment and I know the time will come.

Emma is still "Honeymooning" so she is still producing an amount of insulin which gives both us and her a some time before we really get into this. The NPH insulin that we are giving her right now peaks at around 1.5 to 3 hours after administering. And because of this she has been having more lows than acceptable.

So we discussed today to change to Glargine. This is as well a long lasting insulin. But it is unique because it has no pronounced peak. It is released into the body steadily and continously. This seems to be the best way right now to control the risk of Emma going Hypo.

We talked briefly on diet. Just briefly because we really have got a handle on this. And the fact that our little girls eats like a bird it is really easy to monitor her. She is quickly figuring out that if she doesn't eat her supper that she still will get a desert (just to make up for lost planned CHO's for that mealtime).

Well that is it for now. I wish you all well. And really concentrate and be dilligent about your health. Talk to you later.

Its Much Better

I cannot believe the amount of support we have gotten this past couple of weeks from our family friends and people who don't even know us. All I want to do is brag about these people. Some show it in different ways than others do.
I am honored to have these people in my life. And am thrilled that we have met others via the OC website.
This past week essentially was a 180 degree turn from our week before. I had a strong week at work and just in talking to people. I think mainly because I did not have to tell the our story to too many people this week. That in itself was a good thing for us to get on with this.
If you had asked me or if I had told you the story two weeks ago I would be telling it differently than I would be now.
Now it is more of a positive thing. Positive thoughts keeps snowballing into more positive thinking. Sheesh I sound like a self help book, but it is so true. And the more optimistic and encouraging people that post on here, call us, or we run into from day to day has increased as well. I love you guys!
As for Emma this week her numbers were all over the board and not necessarily in the range we needed her to be in. It is evident that her Honeymoon phase is still presently strong and that is definitely helping us and Emma take things a little less intensely as it would if she needed to mix insuilns and receive them more than once a day. With saying that we have lowered her dose of NPH (long lasting) insulin from 2 units to 1.5. So time will tell.
At the beginning of the week I couldn't give her the insulin without hurting her. Man did I feel like a heel. We try everything in our power for Emma not to hurt but the first thing I do when I get up is to frighten her and hurt her.
However since Thursday she has actually thanked me after I gave her her doses. Also I believe that she is so close to be testing her self soon it is scary. She is a extremely quick learner and is so resilient. She actually now will take the pen and try to test herself.
When was the first time you or you let your child test themselves? How did it feel? For them/for you? I am looking also for the code for the nav bar from the OC website. If anyone can give it to me it would be awesome if that is acceptable protocol. If not I will email for it again.
Oh yea one more thing. Emma finally got her bracelet. It is beautiful. I will post a pic of it her later but for now I have to go for a Tims Run. Large double double all the way!!

She Gets It

ME: "Emma where do you get your test?"

Emma: grabbing her leg and awkwardly holding it up with her head cocked to the side "tesht?.......my fute."

Me: "...and where else..?"

Emma: Holding up her tiny hand and extending her index looking very closely at it she responds "Pinger."

Me: "..and where do you get your insulin?"

Emma: "..my but.." Reaching around and pointing to her back. But we will pretend she says "but" it makes for a better post.

Emma " hewp da strip go to the garbage?" "ALL DONE!"


When i grab her test kit she will actually see me go get it and run to me and grab it from my hands then go to where she wants to get tested at that time. She chooses a different location to do the test all the time. One time it will be on her Dora chair the next will be on your lap in the kitchen.

She helps as you can see above. We let her see the number even if she doesn't know what the numbers mean but at least she knows there is an effect from doing the test. We actually emphasize the number more than anything else.

As for her insulin it really depends on us how she reacts. If I get a really good line and a still girl she probably doesn't even feel it. But a few factors have to line up before she doesn't feel it at all. I think I have accomplished this a couple of times.

You know this has really affected us when today before lunch I told Denise that I "felt a little low, and need to eat very soon". She looked at me with the most serious of looks and said she felt low too. Oye Vay.

I Have a Dream

This does not seem to be getting any easier on us. It is always on our mind. We are 100% consumed by this disease. It feels like we are always thinking of ways and things to get over this. Such as lets go to the mall, lets not stay home from the wedding we were invited to yesterday, lets both go shopping, lets talk about something else, lets not look at other children and think Emma should be like them, lets not think about this, lets not think about this, lets not think about this.
Simply put...this is not going away. We have this for life. Emma will be fighting this for as long as she lives.
I used to dream. I used to dream about the hottest car on the block. I used to dream about the most charming and elaborated house in the neighborhood. I used to dream about traveling the world. I used to dream to have steak and sushi for dinner when I want. Those dreams are now mere thoughts. But now all I dream about is not having to get up in the morning and not have to give my daughter an insulin injection. I dream now of digging into a bag of cookies with my daugher tugging away at my pants for one, and me actually feeling great for giving her one without counting fucking carbs. I dream for my wife to not have to diligently plan her day as if her own life depended on it.
Upon Emma's conception we both did everything in our power to make our baby the most healthiest and happiest girl in the world. Then we get dumped on with this?! Why? Is this fair? As if you cannot tell I am just mad right now. Im sick of being sad. Im sick of my shoulders slouching when I walk and I am definitely more than sick of not being able to eat properly.
I know it will get easier. I know it will get routine and all that type of positive feedback. I know I know I know. But the thing that is the hardest is that the fact is has to become easier, routine, and a part of our life. So bring it on. We have and amazing team. We have a great leader. She makes me smile constantly even when I have tears streaming down my cheeks. Both me and Denise burst out in laughter in the middle of crying because of something she says or does. A smile will not cure diabetes but it sure is a good start.

We Have Her Dialed In

We have our Emma back!!! No more highs and lows. She is safe now. Just to give you an idea of how her highs went and lows went prior to her last two doses of insulin:
Friday BS (blood sugar) 23.1 mmol/l
Saturday Morning BS 4.0
Saturday Afternoon BS 2.8 and 3.0 mmol/l
Saturday Evening BS 17.8 mmol/l

Monday Morning BS 5.1
Monday Evening 13.8

Tuesday and Wednesday morning we administered her first two doses of 2 units of NPH (long lasting insulin)and her results since then have been dialed right within her target range of 6 - 12 mmol/l/l starting with 5.5, 5.7, 11.5, 6.0, 7.1, 6.1.
It is a good thing that something has been consistent because it is really hard to keep our emotions from going all over the board.
Denise and myself have done the flip flop with how we have been doing since Friday. I have had a hard last couple of days. I think it is because i know we have got a control on her diabetes now and at first i wanted her to be safe so i didn't wander too far into my feelings and thoughts because I knew both Denise and Emma needed me at the first stages. We find it the hardest when we read of other peoples struggles and stories and how they cope. But you know...we now have our own stories and mechanism's on how we cope.
This is all for now. We are happy that you visit this site and we hope you can do some reading on your own and comment on certain things on here. That would be nice. I hear of people reading this but just let us know you were here.
Sorry for the randomness of this post. I am tired so i will sign off for now.

Knowledge Is Power

Today was our first day of our 3 day clinic at the Community Services Center at the Childrens Hospital. The fear of the unknown has once again overcome our thoughts and emotions. Think of your first day at a new job or going to try out for an elite sporting squad and multiply that by 100. That is sort of how we felt at times lastnite and this morning.
When we arrived this morning to the exact same unit we went to on Friday (which seems like 4 weeks ago by the way) we were integrated with a bussle of nurses dietitians residents and most importantly of all about 6-9 kids ranging from 2 years old to 12 years. We went directly to the reception area and the receptionist asked if this was Emma. At that moment we knew this is where we were supposed to be and going to belong to for the next 18 years. From there we walked into a waiting room that was filled with displays on information regarding blood sugar levels and diet. We were sort of sitting there not knowing anyone or their stories looking at each other. Just then our Doctor entered the room and came directly to us. She was and is the most welcoming face to see in the past few days. She sensed our disposition and immediately went over to where a 9 year old was sitting and had her come over and talk to us. That little girl (cant remember her name) made us feel the best than any doctor or nurse or words have since Friday.
She was exactly what we needed. She was so brave to come and talk to us not knowing us from a hole in the ground. Just then another girl came to us her name is Alex, and mentioned how cute Emma is. So I thought wow this girl is smart;) She was diagnosed with type 1 when she was 11 and she is now 12. She assured us that Emma will have an extraordinary life. Little girls will sure grow up fast is they have to.
The entire day was spent talking to dieticians. First Carla until 10:00 or so ,then Nicole until lunch. Anna was a med student that essentially shadowed Carla and Nicole all day. We are so lucky to have them on our team they are brilliant and extremely compassionate. They are the ones who have empowered us today.
Emma was once again everyone's crutch. Singing away, playing with everything she can get her hands on, coloring on her stomach when no one was looking. You know "normal things". She made me smile all day long, I had no choice.
Briefly our goal now is not to alter Emmas diet but to adjust her insulin intake according to her carbohydrate intake. Her blood sugar level should be in the range of 6-10 for now. And we learned that she in the "Honeymoon Phase" where her pancreas is still producing minor amounts of insulin. But that will soon be depleted But until then she will be on small doses.
Tomorrow will be the first time myself and Denise will administer her insulin to her. We have agreed on not calling it the poke, or needle. But more like her test and her insulin. We will give her 2 units of a long lasting insulin called "NPH" just after breakfast and just before we go to the clinic. We administerd each other with saline today...and you know what?....I didn't even feel it.
Our learning curve is very steep right now we have alot to wrap our minds around. I want and need everyone to know what we know. We want to teach you all. Its important to us. Welcome to our world. Things have just changed for us.
So long for now and thank you everyone for their solid responses and love. That was sure nice to come home to today. Please do not hesitate to ask questions and learn with us.

Emma Is My Hero

It has been two days since we have learned that Emma has a serious disease that impairs the bodies ability to use food properly. We have been forced to understand our bodies in a way most people will never have to. Who the heck needed to know what the pancreas does. Or who needed to know for that matter. But the answer to this is us. Emmas pancreas does not produce the insulin needed to break down the glucose in her food to converted it to energy. Without insulin to turn glucose into energy the glucose piles up in the bloodstream and spills into the urine.
Now our mission is to treat this disease by monitoring her glucose levels in her blood. Counting her carbohydrate intake and manually balancing it with insulin. This type treatment will keep blood sugar levels normal to avoid complications.
At first we were convinced this was a mistake. A miss diagnosis. Or even a temporary illness. But these feelings quickly dissipated when we were told to get to the hospital as soon as possible.
Emma was admitted to the children's Hospital that nite (Friday September 29.).
This was easily the most intense overwhelming and shocking thing I have ever had to experience. After we knew she was safe, oddly enough it felt like we were grieving a loss. It had felt like we lost our little girl. All we wanted was our Emma back. Sometimes our emotions will overtake our logic and make us look selfish to the circumstance.

Denise has been taking Emma to and from doctors for the previous two days before Friday. And I have absolutely no idea how she kept it together. She single handedly saved our little girl from any complications, long term implications, and even death because of her impeccable judgment and commitment to her health.

On the scale to which Emma has been tested, moved around, poked, and prodded would have set anyone off. But not her. She only cried when she had to. She never ever fussed or got cranky. She listened to us as if her life depended on it. She played she laughed ran and climbed when ever she had the chance to.

That little girl deep down knows everything is going to be alright. She was my strength through all of this. My little trooper I love her so much.
At first I wanted to be Emmas hero but now it is clear that she is mine.