Wow...it has been quite a while since i have updated...please forgive me. This will be brief since my mind is totally cloudy right now.

Elijah and his diabetes have been doing ok. We have our good days and our bad, fortunately more good than bad I think :) Biggest news recently is the arrival of Elijah's new blue Animas ping insulin pump!!! I am very excited and so is he. He is very proud and has shown everyone his pump. He thinks it is pretty cool. I hope that continues when he has to actually wear it :) We will hopefully get training on the pump next week and then after a week of me wearing it with saline in the pump instead of insulin (scary huh), we will be able to go live with insulin on him. It will be a big adjustment but will hopefully help us get better control of his roller coaster blood sugars. My biggest fears were almost realized when he passed out today and fell forward and hit his head on the table. Fortunately it was transient and I was able to catch him and get him checked and fed before he got any lower. His blood sugar was 30 at that point and i was very scared I would have to use his emergency glucagon. He was already starting to become unconcious and I knew the next step was a seizure. Praise God for honey and chocolate candy :)

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Loss of control

Just when we thought we had everything under control, Elijah's diabetes is totally out of control. He fluctuates between lows in the 50s to unknown highs that just register as HI on the meter which goes up to 500. Being a person that has serious issues with control this has been extremely difficult for me. I can see no trends, no similarities...he is high and low in the same day, on different days at similar times...it all seems so totally random. I wish I could just get a handle on it so I could help him. Everytime I look at his face I am concerned...every time he is acting out of sorts I wonder if he is high or if he is low...constantly trying to remember the last thing he ate, the last time he had insulin and when he will be eating next...it sometimes seems so overwhelming. He has started crying again with shots in the evening and that just makes the heartbreak worse.

God is teaching me a great lesson about control...I know as hard as I am fighting to control this disease for my baby, He is fighting for control over me and my life.

below is a picture of the insulin pump Elijah will probably be getting sometime in the near future. It is a small machine that delivers the insulin through a implantable needle instead of using shots. The needle has to be reinserted in a new location every 3 days and is then attached to the pump through the tubing. So instead of a shot 6-8 times a day he will only have to have the new cannula implanted every 3 days...the pain is worse but is only once so he will get stuck much less. Pumping will give us a lot more flexibility and will hopefully give us better control of his sugars...it requires even closer monitoring but I think it is worth the sacrifice. We will probably be trying it out this summer.



he would have to wear his site on the butt so he couldn't pull it out as easily.

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Frustration

Well, if you are a control freak like me, the ultimate test of patience is definitely dealing with a disease like diabetes. Just when you think you have it figured out...you don't.

I think the one thing that makes diabetes different from many other chronic diseases is that there is no way to predict what might happen, there is no constant except that something is going to change. I have yet to be able to predict a blood sugar level, correctly dose carbs or figure out what night time number trends will do. I record meticulously, measure meticulously, plot and ponder numbers and still nothing I do seems to be right.

All day long I spend either checking blood sugars, giving insulin or wondering what his little body is up to. He is 400 one check, 68 2 hours later, even though I measured, counted and dosed accurately (at least so I think). Ugggg...it makes me want to scream.

I think all parents of sick kids struggle with feelings of guilt...diabetes is no different. The strict schedules and constant obsessing over numbers is stressful and added with the lack of sleep most nights can wear a person down. Top all of this off with the constant reminder that, even though it will get easier because it becomes more of a habit, it will never end...it may get worse and it will definitely change over time into something new with puberty, illnesses, growth spurts, defiance and stress. There may be associated autoimmune conditions that pop up which is common in type 1 diabetics, there will be complications as the years progress and all of these things will be dealt with in the due time. As a parent, you know there is no reason to stress over what the future may hold...but that is alot easier said than done. There is plenty of stress over the present to deal with.

If there is one known fact that can be gleaned from this new experience it is that diabetes is never boring, and even though Elijah breaks my heart several times a day with his pitiful sobbing, my heart is lifted when I think about what a blessing he is to so many people.

Thank you Lord for my brave litte son and for all of my beautiful, special children.

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Why do the doctors always seem so less worried than me???

Well, Elijah had his first followup visit with his endocrinologist since he was released from the hospital. It went well. We had his A1C checked first which was 8.3, down from the 10.8 at diagnosis. A1C is basically the amount of sugar attached to the red blood cells and correlates with the average blood sugar level...the smaller the better and around 5 or 6 is normal.

The fact that his A1C came down over 2 points is GREAT...means we have brought his average blood sugar levels way down...yay for us!! We also got to meet with the social worker who was a little bit worried about our family with the extra stress of dealing with a diabetic child, but seemed to be satisfied that we had a support system and counselors on standby :D.

We met with the doc for a while and it was interesting. I dont know what other parents experiences have been with pedi endos, but ours is very laid back and basically asks ME what I think we need to change. I realize I went to medical school and all, but I do not know the best way to treat a 3 year old diabetic!!! He asks me what I am worried about and I tell him I am worried that he stays in the 300 and 400s for days and then drops down in the 50s etc and it does not seem to phase him ???? Why does the number 400 freak me out and the doctor thinks it is great! Ahhhh, I hate that. He seems so out of control to me but yet seems fine to the doctor...I guess it is the curse of being a mommy...that horrible emotional attachment to the patient and all :)

He wants to put Elijah on the insulin pump which I am kind of nervous about and we will probably try to start that process in the summer. It is the best way to keep his sugar levels down but they are very high maintenance and require alot of extra work...and pain with implanting the catheters under the skin. I guess we will see how it goes.

He is a nice guy but I still have not gotten a feel of his skill. From what I have learned from the other parents I have met is that it is really up to US to make sure our babies are being treated the way that will keep them the healthiest and protect them from the horrible longterm effects of this disease...or at least hold off those effects for as long as possible. Diabetes is definitely a time intensive disease and keeps me on my toes...500 one hour then 60 the next...???!!!

For those of you who may be interested...here is our current schedule for Elijah

7:30-rise and shine, check blood sugar, eat breakfast-he only gets 30 minutes (difficult when you are a grazing toddler :)
while he eats I figure carbs and do my calculations for his correction and carbs
.5 unit novolog for every 30g of carbs plus .5 unit for every 100 blood sugar over 150...making sure to record his sugar, carbs and units on his clipboard
8:00-prepare his insulin and drag him out from underneath the table to give him his shot (sometimes he is cooperative but not always)
8-10:00-he plays, we watch him for any signs of lows or highs, looking for sluggishness, hunger, thirst, etc.
10:00-snack time, check blood sugar, eat snack in 15 minutes while I figure the carb count and correction based on his blood sugar
10:15-prepare insulin and give him his shot, make sure to record all his numbers again.
12:00-blood sugar check, try to decide what he will eat with carbs in it, ear lunch in 30 minutes, calculate insulin dose
12:30-insulin, record all of his numbers, get ready for nap time
2:00-blood sugar check, to make sure his insulin bolus is working
3:00-blood sugar check, snack, calculate
3:15-insulin, record numbers, start dinner
5:30-check blood sugar, eat dinner (sometimes not), calculate carbs
6:00-this time of the day i usually have to chase him down for his shot, record his numbers
8:00-blood sugar check, bedtime snack, calculate carbs, give allergy meds
8:15-he gets 2 shots at bedtime...lantus and his novolog for correction if needed and to cover his carbs...if his blood sugar is over 200 he goes to bed at this time, if not he stays up
8:15 to bedtime-blood sugar checks and snacks until he is over 200...if he goes to bed less than that he could become hypoglycemic and have a seizure at night
10:00-blood sugar check
12:00-blood sugar check, treat with a shot if necessary
2:00-3:00-blood sugar check, if he is decent (200-300) then we go to bed, if low or high we treat and recheck throughout the night.


some nights are looooong:( some nights are fabulous:)we make changes to his insulin every day. In between blood sugar checks we are constantly monitoring for signs of illness, hypoglycemia of hyperglycemia...and if he is acting out of sorts, the first thing we do is check his blood sugar. It always makes me sad when I look at his little fingers and arms and see all those bruises :( sometimes he is so brave and strong and other times he cryies like a pitiful little baby saying "mommy it hurts" through the sobs...this always makes me lose it.

It has certainly been an adventure and we are so proud of Elijah for how he has adjusted and taken it all on stride, even helping out with his own care. We thanks God everyday for keeping Elijah safe and getting his diagnosis before any permanent damage could occur. What an awesome God we serve!!!

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What the heck does 1416 have to do with diabetes?

Well...life has changed for the Lewis family and I decided instead of putting all of the posts about Elijah and diabetes, I would have a blog dedicated to diabetes and our family's struggles and triumphs with the disease. So there is an explaination for that.

Now you ask...What does 1416 have to do with diabetes? Well, now that Elijah has finally gotten to the point where most of the time the shots and blood sugar checks do not scare him to death (although I do still sometimes have to drag him out from under the table or hear him scream "no mommy it hoots, I dont want my inslulin" which breaks my heart) he is being encouraged to assist in caring for himself and his disease. He started with picking the finger he wants to get tested on and then started wiping his own finger with the alcohol wipe. Now he wants to suck up the blood onto the test strip and wait for the numbers to pop up and then take the test strip out. He is so cute and it helps take his mind off the pain of the task and focuses his attention on something else. He says he wants to "sluk it up".

Where 1416 comes in is that he like to read the numbers on the glucometer and when I ask him what his blood sugar is he says "1416" with a smile. Every time, the same..."mommy look 1416". That is now his number of choice, not sure why but he has always loved those numbers, so now they are our code words for his blood sugar and it brings such a smile to my heart every time I hear him say it with his little loose, jowly lips.

So the journey continues, one day at a time, one hour at a time, one blood sugar at a time, buy God's grace we go.

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