A break from D......

I've heard it must be nice to have a break from D while Cliffy is in school.... A break from D????? I never have a break from D. Sure there are times when Cliffy is at school or at his dads that I'm not handling the hands on with D, but that doesn't mean I'm not thinking about it. That doesn't mean that I'm still not "on call" if the nurse or his dad has a question about D or his care. I still haven't gotten used to getting the kids lunch ready without testing someones blood sugar or getting an injection ready. It is a weird feeling to me just to get lunch ready and have them eat, and nothing else. It also doesn't help that when I finally start thinking he's in good hands, I hear how someone messed something up when he was at school, and then I have to talk with them again, and have to start to worry constantly about his care when he's there. It may be a good day when the phone is silent from no one calling, but it's also those days that I'm watching the clock awaiting his return so I can see how it all went. It's also days like today where it's a guessing game on the amount of carbs, because Cliffy wants Pizza like everyone else. I honestly think it's days like this that are harder then the "Hands on" care of D. At least when he's home I know what's going on, and where his numbers are at.


At the end of the month we go back to clinic to get our A1c, what I refer to as my report card. Which will give a generalized idea of how well we've been fighting D the last 3 months. In December our A1c was 7.1, which is great, but I was disappointed in myself for the reason being in September it was 6.9, so we had a bit of an increase. I would really LOVE to see a drop this time, or for it to stay the same, no increase!! However we had over a week straight of highs, crazy highs from being sick, and the days leading up to that week we had highs, as well as the days after. And just when you think things are getting back to normal (if there is even such a thing) you have a morning like today 323!! I cannot wait until we can start our classes to move towards the pump. When I correct him overnight with an injection its a guessing game if he's actually going to climb or if he will even out before morning. And for that reason even though I hate seeing his waking number over 300, I don't like to correct until he's pushing 300-400 at 3am. Which he was not last night, he was sitting steady the last few hours at around 210. So sad to say today was one of those mornings that D went "Neener, neener, neener " to us when we saw that number. So for now D has got one over on us, but I will most definitely make sure it doesn't tomorrow.

We are finally becoming a virus free household. But let me tell you that was a long 2 and a half weeks. I was beginning to think I would never have a day without a sick child. It went through Cliffy, Hayleigh, and Abby first. It took a full 10 days for Abby to feel better. Then I was hit, thankfully only for 3 days, then Annie got not just Influenza B but an ear infection too. It very much threw off her sleeping schedule, and my baby who once slept through the night (8pm-5am) with Maggie, has now been waking up every 1-2 hrs all night long for the last 5 nights. Needless to say Mommy is very tired... Lastly it hit Eric, but he was another lucky one and only had it a few days. After 2 and a half weeks, Chad is the only one who hasn't gotten sick at all, no fever, no congestion, no sinus issues, nothing. He is contributing it to him taking his new vitamin, Double X. Which I think is true, since he made me start taking it along with a Vitamin C supplement from Nutrilite when I was sick and I only had it 3 days versus a week like the rest of the kids. Hopefully things can get back to normal now and we can get back into a routine, because this up every few hours again is not fun.

If I could write a book.............

If I could write a book I would start it with a happy ending.

"And then there was you........ "

And then there was you is really not an ending, but my happy beginning. The words that fill in the rest of the space before there was you do not matter, what matters is the here and now. Here and now stands us together, what came before this is our story about the bridges that connected us together throughout time to always make sure we one day crossed them to meet again.

When you touch someones life so deeply that they carry you with them always throughout time and space, well now that should mean something. It speaks wonders about your character, your life, and more importantly about the type of person you are. If I could write a phrase to pass on to our children so that they would one day know where it all began it would be this.

It all started with a look.... And from then on out my heart was hooked.....

Our past isn't what defines us, our past is what molds us to become the person we are today. But your never truly the person you were meant to be until your heart is where it was meant to be.

My point of writing a brief picture into my head on our relationship is this. With everything that has happened. I am still probably to some sickenly happy. I am now becoming the person I was meant to be. The person that my son needs to fight the good fight for him in his path to a cure for the disease that invaded his body. And for that I am very thankful. Thankful that I can be who I need to be for myself, and for my family. I'm also thankful that I can be who I was meant to be because my heart is finally where it was meant to be......

Our Year with Diabetes

One year ago today was one of the worst possible days of my life. I watched as my then 6 year old son laid in a hospital bed fighting for his life. He was unresponsive, and in what I found out was DKA, Diabetic ketoacidosis.

Diabetic ketoacidosis (DKA) is a state of absolute or relative insulin deficiency aggravated by ensuing hyperglycemia, dehydration, and acidosis-producing derangements in intermediary metabolism. The most common causes are underlying infection, disruption of insulin treatment, and new onset of diabetes.

As I watched him laying there that day, I couldn't help but start to think, "How am I going to do this, and more importantly, "How is he going to do this"...I really had no understanding at that time what exactly was going on, and what exactly Type 1 diabetes was. I was ignorant to the two types, and had no knowledge of the disease other then a few facts about Type 2. I couldn't fathom the idea of having to give my son a shot, (Let alone 6 a day). I was at the time deathly afraid of needles for myself. How was I going to manage to give my son a shot. I had so many questions that needed answered but couldn't seem to get the words out of my mouth.

I watched as the nurses showed me how to draw up his insulin, and administer the injections. During the first day Cliffy really didn't know what was going on as he was in and out of sleep. It wasn't until the second day that he started to come around after having his insulin injections. You could see how much better he was starting to look. It wasn't until this time that the idea of him having diabetes became a reality. Until then I think I was in denial thinking they had it wrong. The thought of his pancreas only functioning at 20% like they stated didn't make any sense to me what so ever. He had what I thought was only the flu. To me all he needed was to get some fluids in him and get back to eating... Well that was not the case. And it wasn't until he started to look a lot healthier with the insulin injections that I realized they were right.

It has definitely been a crazy but prosperous year with D. We have had 3 hospitalizations in addition to diagnosis, 2 from hypo episodes causing a seizure and Cliffy passing out, and one from the Flu. But in all the amount of knowledge I have absorbed since diagnosis is crazy. And unlike a year ago, we are now connected with a great support system known as the DOC (Diabetic Online Community.). Without them I may have completely lost my mind by now.

For everything that has happened Cliffy has come out on top, he is the same boy I remember but only stronger, and much more grown up. The is the one downside of Diabetes. Diabetes has forced him to grown up much faster then he should have to. But despite of it all he is a happy boy, he loves life, and his family, especially his siblings. And for it all I commend him for all he has had to endure this year, and for all he's overcome!

I also must commend Chad for everything he has done as well. For what it's worth to him I appreciate everything he has done, and couldn't have made it through it all without him as well. He stuck by our sides and went through the same things Cliffy and I did, and learned how to take care of him as well.

In ending, this may not be one anniversary I wish to celebrate one year in, but I am very happy we have made it this far. I am more happy that my son is alive to celebrate this anniversary as well. I'm sure in time I will learn not to be as bitter to D as I might be now, because I have definitely have become less and less over the course of our year with Diabetes.

A day in the life.....

I really couldn't think of what I wanted to write about today. You see I'm trying to not be very emotional over the fact that Cliffy's 1 year dx date is approaching on February 28th.. The one thing I haven't done yet in writing about Cliffy and his T1 is include a little insight on what he goes through on a daily basis. In thinking about the number of fingersticks per year just to check his blood sugar that we told DD (The Diabetes Dude), it had me thinking about what he does daily, weekly, monthly, and yearly.

Before I move any further, in case you are not familiar with DD please take a look at his site here:

http://www.thediabetesdude.com/

Noah is a great kid who like Cliffy has T1 diabetes, but he most definitely isn't letting that stop him. He is raising awareness not only for himself, and the disease, but all his T1 friends. Cliffy is actually the PA ambassador for DD, and we are hoping to tons of awesome things to help raise awareness in our area very soon! To take a look at Cliffy's page please see here:

http://www.thediabetesdude.com/Clifford.html

Now to move on with what this post is about.

A day in the of life of Clifford, a 7 year old Type 1 diabetic kid!

Cliffy starts his day around 7-7:30 am. Before eating breakfast he must have his blood sugar checked, which involves at least 1 fingerprick as long as we don't receive a strip error, or have a funky number, then that involves rechecking.

His carbs, protein and fat grams are all counted out according to his daily diet for breakfast. After his food is ready to go, his insulin is drawn up according to his sliding scale( a sliding scale is because Cliffy is still on Multiple Daily Injections "MDS's" it is how many units of fast acting insulin, which is called humalog, he should receive based on his blood sugar number.) Once his insulin is drawn up, the injection site is cleaned with alcohol( it can be his arms, legs, or tummy he refuses a top of the bum site.) Then his shot is given. NOW and only now can he sit down to eat his breakfast.

Now Cliffy can eat no sooner then 2 hours later and no later then 4 hours later since he received an injection of Humalog. Based on this schedule it is now time to start all over, count his carbs, protein, and fat grams for lunch. Another fingerstick to check his blood sugar, draw up the insulin based on the sliding scale (humalog), clean the site, which by the way should be a different spot then before, site rotation is very important. He gets another shot, then can sit down to eat lunch.

Again 2-4 hours later it is snack time. This time his carbs are counted out to 15 grams. He then gets yet another fingerstick, to check his bs#, insulin is drawn (humalog) and another shot, now he can eat his snack.

2-4 more hours later it's DINNERTIME! Carbs, protein, and fat grams are counted, Fingerstick, insulin drawn (humalog), and shot is given.

2-4 hours later it's bedtime snack. Here it is a little different, carbs and protein counted, fingerstick to check his bs#, then he gets 2 shots, the fast acting insulin to cover his carbs (humalog) and a long lasting insulin that goes for 24 hrs (Lantus). After both shots he can then eat. And it's sleepy time.

Most of us think about enjoying a night of uninterrupted sleep but Diabetes never sleeps. For the most part Cliffy gets "at least" 2 finger sticks during the night at 12 and 3 am to check his levels. This helps his endo team determine if our Long lasting insulin, and bedtime humalog are right on target as to where they should be or if they need switched. On occasion Cliffy may be running a bit higher which I think of as 400+ now I've learned Cliffy's blood sugar a bit more and how it goes during the night to know he tends to jump at least by 50 to 100 between 3-5 am. Most experts refer to this as the dawn phenomenon. If Cliffy is too high, I then have to "correct" him by giving another insulin injection at night when he is sleeping.

If everything runs smoothly Cliffy will only get around 6-8 fingersticks, and 6 injections a day. If we have a sick day he can endure as many as 25+ fingersticks a day or even more injections. On average he gets roughly around 12 fingersticks and injections a day.

For the most part he does all this with a smile. He plays video games, with his sisters, and army guys just like a normal 7 year old boy. But he has a vast knowledge of carbs, protein, bloodsugar numbers unlike a normal 7 year old boy. He can at anytime let you know how many carbs, and grams of sugar are in a cup of milk, and other items of food.

He is a strong boy and most definitely my hero. And for this reason alone, I will not stop trying to raise awareness, and fighting for a cure. Because he and everyone else battling this monster on a daily basis deserve it more then anything.

T1 kids in Washington need your help...

Sharing to get the word out for kids in Type one kids in Washington State!!

I know many, if not most, of my posts have to do with type 1 diabetes. This one is probably the most important one I have ever written. PLEASE share it as this is the fastest way I can think of to get the word out. I need your help!


The State of Washington is trying to limit the number of test strips used by diabetic children to one per day. A test strip is inserted into the blood sugar monitor each time the child needs to test his or her blood sugar. Michael tests 6 - 8 times per day - some kids test more, some kids test less. Some very young diabetics may test 15 times per day! Some children wear a CGM (continuous glucose monitor), but testing with a meter and strip is still the most common method.

Tight blood sugar control is vital to a child's health. The difficult thing with diabetes is that blood sugar that is either too high, or too low can be deadly. All type 1 families walk a tightrope of control. I would guess there isn't a type 1 mom out there that doesn't breath a sigh of relief every morning when she sees her child is OK. The daily stress can vary, but our concern for the future health of our children does not. The long term complications of the disease include blindness, amputation, kidney failure, heart disease and more. I want my son, and all children with type 1, to have a future free from these devastating effects.


I realize times are tough and that states are slashing budgets in any way they can, but this particular idea is potentially deadly! Test strips are expensive (about $1 each), but this short-sighted scheme to save money will end up costing the state much more in the long run. The state is trying to tell us that there is no correlation between frequent testing and blood sugar control...any parent of a diabetic, any child with diabetes, any endocrinologist will vehemently disagree. As a mom, I am mortified, and frankly, scared!


Please pass this along - the health of our children depends upon it. If this occurs in Washington, we will simply be the first in a line of fifty! If you are one of my "Type-1 Mom" friends that happens to have a blog, please include this in your next post. I encourage you all to at least email the state at the address I've provided below....personally, I think sending an actual letter may get more attention - perhaps include a photo of your child or a note from him or her.


Address your letters to:

Leah Hope-Curry

Program Director

Washington State Health Care Authority

Health Technology Assessment Program

676 Woodland Square, Loop SE

Lacey, WA 98503


email:

shtap@hca.wa.gov


Link to Washington State Health Care Authority

http://www.hta.hca.wa.gov/glucose.html


Please give Ms Hope-Curry a piece of your mind, so type 1 families can have peace of mind.

Sick Days

First off I detest Sick days more then anything. It is usually a battle of highs and lows. And then battling keeping those lows up. I know Clifford more then anything always fears he will end up in the hospital hooked up to an IV, and I do my darndest to make sure that doesn't happen.

Our last sick day thankfully only lasted one day, but it was a busy day. He got sick around 8-9 times we battled keeping his blood sugar up all day, then battled bringing it down later in the evening after he felt better. But we came out the victors and I managed to keep him out of the hospital.

Now if there was a reason to, I would most definitely take him to the hospital and have them care for him. But if I know we can handle it at home, then we stay home. He is more comfy in his own bed, pjs, and watching his own movies. So far Cliffy has only gotten sick once, but his temp is up and down, but we've managed to even out the last few hours. Large ketones early which was a bit of a scare, but managed to get water and insulin in him to clear those. His nightstand in his room looks very scary with strips, hand sanitizer, alcohol, cola, pixie stix's, meters, lancets, lancing devices, napkins, you name it, it's probably on there. But in all managed to keep him home.

We shall see how the weekend goes for him as he is visiting with his dad. I just hope he starts to feel better so he may enjoy himself.

The downside of diabetes....

Wow I know I should be writing at least a little post everyday, but I think I have a good reason for not being able to do this all the time.. I have 5 kids!! I have twins who are teething, and I have to be a pancreas 24/7 for my son when he's home.. I think those reasons qualify. Perhaps it's just because I'm lazy and cannot find the time. A lot of the time it's because I'm at a block and have no idea what to write about.

Let's see updates..... Diabetes is kicking my hiney this week. Not so much that it's being bad, just that it's just in the way. Clifford likes chili but isn't a huge fan of it, and last night he was having a particularly crabby night. He was high at dinner time and this was a result of him overtreating himself on the bus. He carries on him a stash of emergency "treats". 2 packs of smarties, and sometimes a juice box. And all year he has not had to use any of them himself until recently. Now he carries these emergency treats in case he would feel low on the bus ride to or from school. Well he came through the door yesterday and informed me he had to use his emergency stash. Okay good he recognized his low and treated it. However there was another bag in his bookbag for the nurse, one with a very important note for her. You see his nurse recently retired and he now has a new nurse. One who has used chocolate on two occasions to treat him, and I wanted to give her a break down on how to treat him when he is low. But with this very important note was a bag of 6 packs of smarties. This was for her since she insists on using Chocolate, I wanted her to have the correct stuff. The last time she treated him she used all his glucose tabs, and glucose gel. So fast forward, Clifford says "You know that bag that was for the nurse". Me, "Yes", Cliffy: "Well I was very very very dizzy on the bus and had to use them." Me: "Okay, well how many did you eat". Cliffy, "All of them". My mouth I think instantly dropped. I then explained to him that normally I only use 1 or 2 packs at most to treat a low, that is why he had 2 emergency packs. So we tested him and he was 212, not too horrible, but I expected a high here shortly. Low and behold dinner time rolled around and he was 353. Now he is still on a sliding scale with his insulin and this means he gets the full 3.5 units, but seeing as I know he is not the biggest fan of chili, he will eat it but was more in a complaining mood last night, I decided to let him have some apple sauce. That is a big deal to him because even though I know kids with diabetes can eat pretty much whatever they want, I prefer to have him on a reduced sugar diet. Helps with unexplained highs and crashes, since we are still on MDI's and the sliding scale. Once he is on the pump and a CGM I will be a bit more flexible. So without straying too far from where I was going, this applesauce had 12 grams of sugar. To you or I that may not seem like much, but it is a lot when I try to keep him limited to foods with 6 or less grams. My point to this story is I gave him extra insulin to cover the sugar and extra carbs. He wanted to quit eating part way through his meal, he was just very crabby. And well I'm sorry he had all that insulin on board and needed to finish his meal pronto. After a battle of wits, I won, and thankfully D did not, he was 125 at bedtime, and a nice steady line of 131 and 145 through the night. That is what I refer to as one of the downsides of diabetes, when even though you try your hardest to let them feel like a normal kid, it kicks you. He can't just walk away from a meal when he's having a crabby day and not feeling like eating, he has to eat all the carbs that the insulin was used to cover, otherwise we could be dealing with a horrible low in the near future.......