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Day three – insulin pump August 27, 2009

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Wow, it has been an exciting few days. Ayden is officially wearing his insulin pump, and he seems to really be enjoying it.

However I’m noticing he seems to be tired these days, and I have a feeling he’s not sleeping well because it’s attached to him. I can’t put it under his pillow thhough because he moves around too much during the night. Anyone have any other suggestions?

The main quesiton I have been getting from people (even our pharmacist) is “what is an insulin pump?” So for anyone out there  who is confused, it is a device about the size of a pager that delivers insulin to him through an IV type of insertion. This allows Ayden to get a constant dose of insulin throughout the day to match his body’s minimal requirements. The overall purpose of it is to better control your numbers by taking him off of long acting insulin which can act irratically.

Because of the features of the pump it also allows us to be more flexible in when and what Ayden eats as you can deliver extra insulin to him to balance the food that he’s eating.

Because of the features of a pump and the way that it operates we are essenitally learning a new way of managing Ayden’s diabetes. And it is as intensive, if not more so, than when he was first diagnosed. We started the first of our official training on August 25. And I have to say, this session did not go very well. 

First off, the team at the Stollery has done a fantastic job creating this pumping program, and I feel very fortunate to be a part of it. But it has been my experiance since Ayden got diagnosed that many of the programs, services and best practices that are developed are geared towards older kids with diabetes. This means that parents of younger diabetics are given the same information and treated the same, even though they have different restrictions or needs.

The first day did not go well, because my husband and I were trying to learn about how to manage Ayden’s diabetes this new way while trying to entertain a very active two-and-a-hlaf year old in an auditorium. this meant neither of us learned a thing.

The second day we brough my parents to help us with Ayden, and they spent the first 10 minutes in the class and then the next three hours wondering around the hospital. This worked out as Ayden was entertained and they could check in on eany numbers and get advice on what needed to be done.

we have a the third session next week at night, and we are not bringing Ayden, we can make any needed adjsutments to his pump when we get home that night.

There was also a course last week about how to use and insert the pump. Ayden did not have to be at this one either and it meant Phil had to chase him around the whole time and I had to teach him as much as I could the next day.  

I have to encourage anyone who is raising a diabetic toddler to push for what you need as a parent that enables you to take part in these programs and services. After going through the first two sessions, I can tell you your child does not have to be with you at all times for the classes. 

I completly understand that there are restictions on room sizes and how many people can take part in a course, but flexibility for a parent of a toddler is imparitive. Even if the room size couldn’t accomodate extra people to whatch the toddlers, just know that they can be available outside of the room, as your child does not have to be with you the whole time.

I really enjoyed the opportunity to connect with other parents of diabetics, and I really appreciated the kids that came up to me after the class to give me advice from their perspective. It meant a lot to me to hear from them, and see it through their eyes.

What I have learned over the past year August 24, 2009

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One year ago today my life changed. I spent the next few days meeting several doctors and nurses and learning about diabetes.

Over the year I have learned a lot aside from how to count carbs, adjust insulin, and calm a baby who didn’t understand why I was hurting him. Below are my top nine learnings from the year. Please comment with your additions if you have any recommendations.

1. Don’t beat yourself up – we can’t be perfect and those of us raising toddlers can’t be mind readers (but we try really hard to be).  So if you make a mistake and something happens think about the positive, and learn from it.

2. Continue to learn from others – I monitor the latest news and information on type 1 diabetes. This has helped teach me about several things including the highs Ayden experiences when he’s active and how activity snacks can help to prevent the spikes.

3. Communicate with your partner – Keep talking. My husband and I have our breakdowns and we each have our own differing opinions, but we have made a commitment to each other to respect those opinions and continue to talk about the issue until we come to a solution for Ayden that we can both understand. This may take minutes or hours but we both realize that we have to trust each other and recognize we are both just wanting our son to be healthy and happy.

4. Do what’s right for your child – The best treatment practices are just that. they are the best based on the general population, but what is right for your child may not be recommended. Your health care team is essential in your child’s treatment process, but so are your instincts and your knowledge of your child. Try not to let best practices over rule what you think is right for your child. I have run into some problems with Ayden because I didn’t trust myself enough, but I do now. And I will fight for what is right for him.

5. Develop a support system – I’m very lucky to have my parent as part of our support system. They understand Ayden’s diabetes almost as well and I do, and they can step in to help if Ayden is sick or I need a second opinion on his treatment plan. All of our family and friends are encouraged to learn how to give Ayden finger pokes and needles. This helps him understand that his whole family supports him and will help him to live with diabetes.

6. Don’t hide it, don’t be embarrassed of it and don’t accept sympathy – One of the most common statements to me when people find out is “Oh, I’m sorry.” My response to is – don’t be. He’s fine, we’re fine, and it doesn’t slow him down. Overall people are curious when we pull our needles and lancets out at a restaurant, but I’m not ashamed of it and I want people to ask me about it. I want to show Ayden that he can feel secure in knowing that this is not something he has to hide in a bathroom. People may think I’m flaunting it, but it’s only to give my son confidence and raise awareness.

7. Give your child some control – during pokes, needles or insertions Ayden is never held down, and it is never forced on him. To this end he has accepted it. He still has times where he will whine about it and it may take five or 10 minutes to convince him, but in the end he accepts it and helps us with it however he can. For instance he will push the plunger of the needle down. that gives him a part in his treatment and some control over the needles. He will also do his own finger poke if he feels like it.

8. Try not to let your fears scare others – When Ayden was first diagnosed has was in a fantastic daycare. Although we were terrified, we tried to convey a sense of security with them. In the long run this has benefited us the most, as our daycare is on board with anything we need. They will do multiple finger pokes a day to check on him and will call us immediately if anything is looking bad. They don’t do insulin, but they track his numbers and his food intake as needed. I think this is because they weren’t scared off at the beginning. I have to say the ladies are absolutely fantastic and love Ayden to pieces.

9. Live in the present – Thinking about the future – the what ifs and the what happens when – drives me crazy. I really try to keep myself from focusing to much on the future and more on what I can do right now to improve his tomorrow.

Vacation August 20, 2009

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We had a great time at Turtle Lake Lodge in Saskatchewan. Ayden only had a few temper tantrums. I’m still trying to figure out if this is because he’s two and a half or becasue his numbers are jumping all over the place. As you can see he played lots, and even caught a fish.

We’re back – and we’re training August 19, 2009

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It was an exhausting vacation but in a good way.

Ayden learned to ride his tricycle and had a fantastic time playing with his cousins. He had some sore fingers by the end of the trip though because we were testing him on average between 8 to 10 times a day and throughout the night. He consistently ran high during the day from sugar dumps due to his extra activity but he would drop significantly at night.

Hopefully we’ll see some of the fluctuations decrease when he goes on the pump.

We had our first training session last night and it was great. However, they asked Ayden to be there. Phil spent the whole night watching and entertaining him and didn’t get to participate in the course. 

My advice for anyone with a toddler going through pump training, don’t take your child to the first session. Phil and I practiced insertions on each other so we wouldn’t have to practice on Ayden and tonight I’ll be going over as much of the course as I can remember for Phil. I guess this will help me understand more in the end.

At this point, I’m feeling a bit overwhelmed. I’m not sure if it’s because we just got back from vacation and didn’t have much time to relax or if it’s because I want to understand the pump inside and out before I put it on Ayden. Either way, I’m trying to be patient and remember we still have two courses to go through.

One thing I’m really looking forward to though is being able to feed Ayden when he wants something. That was the most difficult thing I saw on our vacation. Ayden would stare at his cousins when they were eating something like ice cream . He would never ask for it but you could see in his eyes how much he wanted it.  It would just about make me cry every time. I can’t wait to be able to give it to him!!!

I’ll post pictures of our vacation tomorrow.

Vacation time! August 10, 2009

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We are off to the lake today for a week of fun in the sun. Ayden is very excited, but I’m very nervous about what this will do to his levels. I’m prepared though – for once in my life. I think I have actually prepared for a month instead of a week. It doesn’t help that he’s potty training so I’ve got double the outfits – hopefully this will be enough.

I have food cut, measured and ready to serve, extra medical supplies, and researched the closest hospital. Hopefully, I’m ready for anything. I won’t be writing until we come back, but I’ll come back with lots to write about – I’m sure. Have a good week.

Never too young for an insulin pump August 5, 2009

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On August 24, 0008, Ayden was diagnosed and and August 25, 2009, Ayden will go on an insulin pump.

This first year learning to live with diabetes has had its ups and its downs. One of the most significant ups we had was attending the Kids n’ Us conference in 2009. If you are the parent or grandparent of a diabetic child, I highly recommend attending the 2010 conference. I learned so much from the speakers and sessions I took including how an insulin pump can benefit Ayden.

After attending this confernce and finding out that not only can a two-year-old wear a pump, but it is encouraged as a better way to reach his target levels, we started working through the pump process.

It has taken six months to get to this point, but I think the six month wait is necessary. There is a lot of preparation that needs to be done before Ayden officially goes on it – including a three-day trial (it is inserted and he wears it but there isn’t insulin running through it) and researching and buying the pump that is right for him (it was nice not to have to rush through this and learn about all our options).

We have decided to go with the Medtronic Minimed pump. So far our experience with this pump and the Medtronic representatives has been very positive.

The only thing that concerns me about this whole process is I heard only 32 families can be trained a year (I’m not sure if this is Alberta or Edmonton and area only). This does not seem appropriate in comparison to the number of families that are diagnosed each year.

I have heard nothing but positive things about what a pump can do for a diabetic, and I think there should be more opportunities for families to  get involved in the process and learn about this device.

Is it the diabetes or just the terrible-twos? August 2, 2009

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Ayden is one day away from officially being two-and-a-half, and the terrible twos have officially kicked in too. The part I find hard is never knowing if he’s having a tantrum because he’s two-an-a-half or because he isn’t feeling well. I have figured out I have been using the perfect recipe to raise a stubborn, tempermental child – a mixture of fear, guilt and a bit of shame.

The other night, he had five temper-tantrums in three hours, which is exhausting and then add in levels that are in the 20s – again – and I start to give into him.  Our pediatrician called me on it the other day and told me I need to start taking charge.

So I’m trying to focus more on the behavior and not only his levels. The last couple of days have been a lot better, he seems to understand that I’m serious when I threaten him with a timeout. I’m also trying to use more positive reinforcement – stickers, sugar-free candies, and special activities. 

Anyway the struggle goes on, but like everything else we deal with we’ll just keep pushing forward until it gets a bit better.