JDRF Walk to Cure Diabetes

Today, we participated in the JDRF's Walk to Cure Diabetes.  It turned out to be a decent day, not too cold, not too hot.  This event really does make me proud to have the friends and family that I do.  We had 35 walkers on our team including us and we managed to raise about $3500.00 as a team and about $2400.00 as a family.  The walk was a success for us being that we managed to double our donations from $1700 last year to $3500.00 this year.  And Nicholas had a wonderful time walking with the 9 kids that came with their families.  In his words, we do this walk "so we can give money to the scientists so I don't have to have diabetes anymore".  I hope he is right.  Here is a picture of our team!! Thank you to all of the people that supported us through their generous contributions, kind words and prayers and by walking with us!!

Sometimes.... time to think is not a good thing.

Today as I was waiting at the pharmacy counter waiting to speak to the pharmacist regarding the issue of a partial refill that they said they couldn't complete because it was not in the computer, I began to think.  Staring at the unbelievable amount of medication behind that counter is what started it.  I began to think of  all of the necessities that go along with caring for a diabetic child.  Trust me.... I know it could be worse than Nick being diabetic and I am thankful that it is not.  But I started thinking about the fact that for the next 20 years (give or take a few), I would have to make sure that we have insulin in the house, lancets, strips, pods for his pump, syringes.  All of this medical equipment that is needed to keep Nicholas alive.  It sort of reads like a grocery list. And the funy thing is that I cannot remember the time before Nick was diagnosed.  I can't remember ever just worrying if we ran out of bread, milk and eggs.  Now we have these extra items on there that we can't survive without.  The bread, milk and eggs have sort of been pushed to the back burner.  Those other items are far more important. 
And then I began to think about all of our family members, friends, co-workers that don't have a diabetic child or special needs child and I am a little jealous. I normally don't get jealous because I just am not that type of person.  I am genuinely happy for people when good things happen to them and I would never wish for any child to get sick or for any parent to watch a child suffer.  But they don't know what it's like to have to make sure you have his blood glucose checker (or just checker as we like to call it), juice boxes, and snacks every single time we leave the house, to make sure you have his medical supplies, to have to check him all of the time at parties or get togethers to see if he can have what the other kids are eating, or to have to check him throughout the day regardless, and to have to be constantly worried that they might go too low.  Don't get me wrong, I love my kids, diabetes and all, but I thought for just a moment what it would be like to be in someone else's shoes.  And then I thought "NO WAY".  Somebody else's life might be way more messed up than mine.  And as you can obviously see, I had to wait far too long for the pharmacist.

And a BIG Thank You goes to...........

Thank you to all those moms out there who offered their support and advice! It was really appreciated! It is so nice knowing that there is sort of a cyber support group out there and it helps not feeling so alone.  So.... when I say Thank you, I mean THANK YOU with a BIG hug.

I know that it is rough in the beginning, but it will just take some getting used to.  But the upside to all of the stress and the headaches of it is that Nick's blood sugars have been really good, in the low to mid 100's (when my dad isn't sneaking him chocolate - which is a whole other issue).  I have bribed Nick to let me put the pod on while he is not sleeping.  It works to a certain extent. BUT IT'S GETTING TO BE EXPENSIVE.
But I guess as long as he doesn't cry, then I'm good.  Everything is good with the pump and Nick so far, my sole purpose for posting this was to extend my gratitude to those who have helped my and offered their support and advice.  And thank you to Laura from "Houston.... We Have a PROBLEM" for all of your help!!!

Omni Pod..... The Good, The Bad and The Ugly

So, on Monday, July 18th, we met with one of the nurses from Nick's endocrinology office and with an Omni Pod representative to teach us how to use the pump and to help us get familiar with the mechanics and functions of it.  We had to bring two pods with us to practice.  Thankfully, we only had to put one on Nick.  It took everything I had not to cry when we put the pod on Nick and inserted the cannula.  He did not like it one bit!!  I put it on his butt towards the top and unfortunately, it only lasted one day.  The information we received from the representative was wonderful and we were pretty comfortable with our decision and the freedom that this pump offers.
Now, fast forward two weeks to present day.  Nick has been wearing the pump for two weeks and here is what I have noticed.
The Good:   The pump allows us the freedom to let Nick eat anything he wants and we don't have to give him a shot all the time.  We just bolus him and he is good to go.  After checking his blood, of course.  It allows him to go swimming or take baths without having to disconnect anything so his insulin flow is constant.  The pdm is very easy to operate and it is all quite self explanatory.  There are still things we have to learn, but to give him insulin is pretty easy.  The pod is pretty small and conceals well under his shirt.  The people that we have dealt with at Insulet Corp.  are wonderful and are very helpful and courteous.  His blood sugar has been pretty constant and even.  No extreme highs and lows as much as there used to be. 
The Bad:   The pod itself is only secured in two spots on the back, so we have had every one of the pods rip where the material that sticks to his skin and the actual pod connects.  I bought a sticky ace bandage and that seems to work, but he complains that it itches.  We are currently trying to remedy this ripping situation.  The second concern I have is that the pdm (personal device manager) goes through batteries like crazy!!!! I have already had to replace them and have only had it two weeks. 
The Ugly: When we have to replace the pod, Nick cries.... alot! I know it hurts him when we insert the cannula and I feel horrible (pretty much like getting kicked in the stomach).  We have had to rearrange our schedules so that we can put the pod on him at night when he falls asleep.  For example: The pod expires at 9:30pm, this is how my night goes.
8:00    Put the lidocaine numbing cream on his skin
8:45    Wipe off cream, clean area with alcohol
8:50    Deactivate his old pod
8:55    Activate his new pod, fill with insulin and attach it to his skin
9:00    Put Nick to bed and pray to god he falls asleep within ten minutes
Once Nick is asleep, push start to inject the cannula and wrap with ace bandage.

So there you have it.   The good, the bad and the ugly of our insulin pump.  The good do outweigh the bad and we are trying to resolve the bad issues.  We are definitely learning, but once you get comfortable with something, it changes.  I hope that it will make his life easier in the long run and I hope it causes him less pain.  If it does..... then my sacrifices will have been worth it. 

Just When We Got Comfortable, Life Changes Again!!

So, we finally started Nicholas on the pump, the Omni Pod to be exact.  It has been a rough start and it's only our second day.  On day one, my parents were watching Nicholas and apparently towards the afternoon, the cannula came out and his blood sugar shot up to 425.  So, my husband goes to pick him up and has to put a new pod on.  The upside to this...... we figured out that we would put the pods on when he is sleeping.  He didn't feel a thing!!! All in all, his numbers were decent, he had some highs, and not too many lows.  On day two, I went to buy some sticky ace bandage thing to try and keep the pod from ripping, but I took the kids swimming and it ripped a little anyways.  He still has the pod on, but with the help of the ace bandage.  His numbers are higher today, so we have to adjust his basal rate to bring him down a little.  

He still knows how to have fun and be a kid!!!

It seems like being on the pump may make life easier for him, harder on us.  We have to get up at 12:00 and 3:00 a.m. to check him every night to make sure he doesn't go low and we now have to check him more times per day.  But all in all, the Omni Pod is pretty easy to operate.  The trick is in getting the stupid little pod to stick to his skinny body.  

And just when I thought it was a sure thing.......

So, we have been looking and asking and begging for Nicholas to be put on the pump now for about a year and through reading blogs and lots of information on the internet, we decided to go with the OmniPod.  We filled out paperwork and sent it into the company and just when I thought we would get it..... low and behold, the Doctor is concerned with the pod not sticking or the needle coming out.  But, they are going to put Nicholas on a, I guess you would call it a "dummy pump".  It works, but they are going to put saline into it so we essentially get to test drive it.  Yeah!! 
I know the pump (from what I have read) is a lot more work, but I hope that I don't have to field any questions such as "Why did I have to get diabetes?" and "What did I do to deserve diabetes?" when I give him his injections.  
So we met with really nice lady and she gave us a breakdown of how the OmniPod works and the features of it.  The instructional meeting was about 45 minutes and then it came time to put the pod on Nick.  So she got it ready and prepped it with the saline solution and was keeping Nick's mind occupied the whole time with various questions.  She put the pod on him and started the cannula entry.  I felt sooooo bad because I could see the look on his face and I  just had a feeling had she not been there, he would have cried.  But he was an absolute trooper.  Good Job, Nick!!!
We were on our way up north that weekend, so we would be able to see how it did in the water and with him playing.  Well.... it didn't do so well.  It came unstuck and ripped.  But this was a good thing.  It gave us an idea of what it would do and we could be prepared.  It does really well if he doesn't get wet, it stays on much better.  But once you get that material wet, it becomes a little delicate.  But all in all, it was good, Nick was able to wear it without becoming aggravated by it. 

My sweet, sweet boy, Nicholas

I am the mother of a 6 year old named Nicholas.  Nicholas was diagnosed at the age of 4 with Type 1 diabetes on November 16, 2009.  And that was when my life changed.  

I noticed that for the past week, Nicholas had been so thirsty and urinating frequently.  I thought it was just a ploy to delay his bedtime, but I started to have a sinking suspicion that something was wrong.  

My husband took him into see his pediatrician and that was when the devastating news hit.  My husband called me as i headed back from a funeral and told me what had happened at the Dr's office. He told me that they tested his blood sugar and sure enough, he was so high, it didn't even register a number.  And also, that we were lucky we brought him in or he would have been on the floor the next day.  This wasn't happening.  I didn't want to go home.  I wanted to run away.  This wasn't my life- this wasn't supposed to be happening. 

When I got home, we had to take him to St. Joseph's Hospital because his Dr.  told us that that particular hospital has a really good endocrinology team for where we live.   We took him in and they escorted us up to the endocrinology unit.  To make a long story short, they started him on insulin and over the next 3 days, the ketones made their way out of his system and he was a different boy.   

We noticed that he got his appetite back and was eating breakfast, lunch and dinner without us having to coax him as much.  He was in a better mood.  But he wasn't happy about having to get his blood checked and the shots and being in the hospital. That was the heartbreaking part.  

They discharged us at about 3 - 4 days later (not really sure how many days we were in there due to lack of sleep) and we were on our own.  We had to act as our son's pancreas.  

We did really well taking care of him and took in an enormous amount of information to be able to keep him under control.

As of today's date, it has been about a year and a half since Nick has been diagnosed.  The hurt and heartbreak are still there, but it isn't nearly as bad.  Don't get me wrong.  I still have my days where I still cry because Nick will ask me "what did I do to deserve getting diabetes?" or "will it ever go away?".  I just want to tell him that he can give it to me and he won't have to have it anymore.  How I wish that were true.