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How My Wife and I Managed Pregnancy and the First Two Years

One of the most frequently asked questions that I receive is about how my wife and I managed her pregnancy and the first two years of our daughter’s life. Meaning, what kind of research did we do, what kind of precautions did we take, what can you do to help prevent your child from developing diabetes since the father has type 1. Trust me, I did a lot of research. And I asked a lot of people when we found out that she was pregnant.

Unfortunately, my answer is…. we’ve done a lot of research and we did what we feel is best for us, but ultimately, there is nothing you can do.

Here is what we did though in case you need a starting point.

The Environmental Determinants of Diabetes in the Young

The first thing that my endo told me to do is read up on the TEDDY study. And boy did I do that. I read as much from this study and follow up studies as possible. So, I recommend this being a great starting point – https://teddy.epi.usf.edu/

There is a lot of information there, but to sum it up, the TEDDY study believes that children who are diagnosed with type 1 diabetes have some sort of genes that are triggered by something, but what that something is, they are not sure of at this point. If we can find out what the trigger or triggers are, than that can go a long way to try and prevent diabetes. Is it something that is triggered before birth based on mom’s diet or could it be the air we breathe…. I don’t know.

We Chose to Breastfeed

This is a choice that we made very early on. We decided on breastfeeding because we felt it was the most natural thing to do.

WE DO NOT HAVE ANYTHING AGAINST THOSE WHO DO NOT BREASTFEED SO SAVE YOUR COMMENTS!

This was just our own personal decision. My thought process is… we’re humans, why don’t we drink human milk. So, that was an easy decision for us. No matter what, this final decision was going to come down to my wife’s decision because she was the one breastfeeding, not me.

I do believe that there was a press release within the last few months stating that there was no direct correlation between breastfeeding and the diagnosis of type 1 diabetes. My endo, who I ask her advice on everything, gave me the advice that breastfeeding for the first 12 months is the best option, for anybody.

Little to No Cow’s Milk

So my wife was able to breastfeed until our daughter was a year old. She was eating food at that time, but there was still some breastfeeding going on as well. We decided to not give our daughter cow’s milk. The reason was based on research we did and studies that had shown that the casein molecule is too large for the baby’s gut which then became a trigger to start the autoimmune process. Like I said, this decision was made based off of our research and discussions between my wife and I.

We also didn’t completely cut out cow’s milk, we just didn’t allow her to drink it. So, we gave her cheese sticks and yogurt that was made with cow’s milk. So, we didn’t fully cut it out, but as much as we could.

That is pretty much it. We obviously monitor what she eats and don’t fill her up with fast food all the time.

I hope that helps answer any questions that you have. Like I mentioned above, unfortunately, there is not much research out there that provides you a guideline on what to do during pregnancy and after birth.

If you have any other questions, please comment below, it’s a great way for the community to see your questions as well.

Diabetes in the Wild

I’m sure at one point or another we have felt like we are the only one that is going through a specific problem or issue with diabetes. But then we log on to social media and we see 10 others with the exact same problem and the solution to the problem becomes a lot easier to see. However, in our daily lives, we may not come across diabetes in the wild as often as we may like (not that we want others to have diabetes, but to know more locally who do.)

When I am at home in PA, I unfortunately, do see diabetes in the wild, in the form of my 6 year old niece.

The other day we went to the Please Touch Museum in Philadelphia. Which, by the way, is an awesome place. But while there, my brother had tested my niece because the Dex was showing about 115 double arrow down. The results on the meter were much lower…. 36.

Seeing my brother and sister-in-law spring into action so quickly and give two juices and a quick snack right before lunch to fix the low was weird to watch. It was weird because I’m so used to just seeing myself do that and make quick decisions like that to correct my lows.

Then at lunch, another discussions ensued about how much she treated with, how many carbs in the meal, take into consideration that there is still more playing to be done at the museum and also the ride home. Discussions like this are exactly what I have in my head every day, but I’m not used to hearing them from other people, except for when I’m at a conference or meetup.

As exciting as it is to see diabetes in the wild, I wish that I didn’t have to see it in this fashion, but when you see a 6 year old fight through a 36 blood sugar in order to get back to playing, it makes you realize that I as well can get through a low to get back to adult activities like working.

Thank You to Sierra Sandison

As some of you may recall my niece was diagnosed with type 1 diabetes back in October of last year. The diagnosis was a few days before Halloween and also her birthday. She has been handling the diagnosis like a champ since day one. Fast forward a few months, she is wearing a Dexcom and Omnipod and playing soccer. Back in January, I was up in Pennsylvania for a quick little family visit and I had the honor of being her guest speaker at her Daisy’s meeting in order to get her Defeat Diabetes badge.

During her presentation to her Daisies she showed famous people with diabetes. One of those people was Sierra Sandison. She had a few pictures of her. One of her showing her insulin pump, her book and another one wearing her Miss Idaho crown. My sister in law had told me that she loves Sierra and always talks about her.

I wanted to do something for my niece because she has been handling the diagnosis so great, so I reached out to Sierra to just ask if she could do something for my niece.

Well, if you haven’t heard already, Sierra Sandison is pretty freakin awesome!

About a week or so later, I received the following texts from my sister in law.

sierra

I just wanted to take this time to say thank you to Sierra again. Little things like this go a long way in how a young kid handles their diabetes management. My niece is so excited to show people her pump and her CGM. She willingly tells and shows people about it. I am proud of my niece for how she is handling it and once again thank you so much to Sierra. I know for a fact my brother and sister-in-law are even more thankful for this wonderful outreach.

Process of Packing Supplies for a Day Out

The process of packing up and heading out for the day has definitely changed not only after my diagnosis in 2004, but even more now with a 1-year old (actually, just a few days shy of one). I have come to perfect the “leaving for the day” thing, except sometimes, I forget my diabetes bag.

Several years ago, while at a K-Mart in Pennsylvania, my wife found a Philadelphia Eagles pencil case and she bought it and then said to me, “I figured you could use this for your supplies in my purse.” I still use that case every single day of my life.

I found that there wasn’t a single glucose meter case from any of the companies that fit exactly what I needed. Here is what I keep in that bag:

  • Syringe
  • Vial of insulin
  • Vial of test strips
  • Meter
  • Lancing device
  • Reservoir for pump
  • Extra tubing for pump
  • Infusion Set
  • Infusion set injector
  • Lots and lots and lots of used test strips (literally 100 at a time)

This bag is usually kept in my wife’s purse, or now, the diaper bag.

I try to always have this bag stocked with items because when we have to leave for the day, we are both concerned about making sure we have enough diapers, wipes, food for the kid, extra outfit, etc. You know, all the crap a kid needs throughout the day.

There have been many times that I have forgotten the “Eagles Bag” at home and had to come back home to get it, or just hope that my current infusion set didn’t rip out or leak. So, my wife and I have devised a plan to make sure that never happens.

eagles bagFirst, we give each other a 15 minute warning for when we are going to be ready to leave. Typically, whoever is the one that is getting showered, dressed, etc last will give that warning.

Next, my wife gets started preparing the diaper bag for the long day, or short trip, whichever. If my wife is the one getting ready, then I will get the diaper bag ready….. meaning, I ask her one by one what needs to go in it.

Once the diaper bag is ready, I then go and grab my Eagles Bag and ensure that it has everything in it that I need. I then put it in the diaper bag.  The diaper bag is then put on the couch near the door so that when I am leaving and setting the alarm, I don’t forget the diaper bag.

I’ve forgotten the diaper bag in the past. I was told by my wife that I forgot the diaper bag. I have never again forgot the diaper bag.

After 12 years with diabetes (April 3 will be 12) and one year with a kid, we have finally gotten this traveling out for the day thing down…. so far.

I don’t think that people truly understand everything that goes into the daily life of someone living with diabetes. Things just as simple as getting in the car to drive to Target or visit family requires planning and prepping and making sure that you don’t forget crucial, life saving supplies.

A Family Diagnosis

A couple of weeks ago, I received a text that I never thought I would have received. My sister in law texted me, “her blood sugar is over 400, we are taking her to the ER now.” My initial response was….”wait, what??!!!??”

My 6 year old niece (who we will call S), who did not have diabetes, was being taken to the ER after going to the doctor and her blood sugar was tested at over 400.

My heart just absolutely sank. I didn’t even know what to think at first because I definitely was not expecting anything like this to happen.

As I was texting my sister in law back to try and figure out what the hell was going on, my brother called me and I could tell the hurt, fear, and sadness in his voice. After telling me that S was going to the hospital, his very first question was, “what does this mean? Does this mean she can be normal and still live a normal life and do things normal kids do?”

I am sure this is a very common question amongst parents of newly diagnosed, but as someone who blogs about living a normal life with diabetes, my answer was obviously…. absolutely she can! She can continue to do girl scouts and dance and whatever else she wants to do.

FOT9D51The first day or two was filled with questions and phone calls from my brother and sister in law wondering about what her life is going to be like from here on out. Being someone with diabetes, I realized, it is a lot easier to talk to someone else who has diabetes as opposed to trying to talk to a parent of a newly diagnosed child.

To add to this, she was diagnosed on a Friday and her birthday was the following Tuesday and her birthday party was that upcoming Sunday. Unfortunately, her birthday party had to be cancelled and she missed out on Trick or Treating, so try explaining that to a child as well.

After I was able to collect my thoughts as an uncle, my advocate side of me jumped right in. I wanted to make sure that they have the best information possible from the best people, so I just started texting my brother Facebook groups, blog URL’s, books, people’s phone numbers, etc. I just wanted them to feel as safe and comforting as possible.

And obviously there were plenty of people that stepped up right away and provided information about how to handle their feelings, how to create a 504 plan, how to handle 3 a.m. blood sugar checks, how to parent a child with type 1 diabetes, etc.imagejpeg_0

So, let’s jump forward almost a month to now.

My niece is doing freaking awesome! She went from being absolutely petrified of her shots (she asked mommy why she was hurting her with the needle) and she is now testing her own blood sugar and giving herself shots by herself (with a little help from mommy and daddy). But to hear about this turnaround is amazing to me, especially in such a short amount of time.

My niece’s favorite color has been blue for as long as I can remember, so when I told my sister in law that Blue is the diabetes color, S was elated. I then told her about Blue Friday’s and how it’s important to wear blue and spread awareness for diabetes on Friday’s. After that, S wanted blue shoes, blue shirts, blue hats, blue everything.

In fact, on World Diabetes Day, which just so happened to be her re-scheduled birthday party that she missed when she was in the hospital, my brother, sister in law, 2 nieces and nephew all wore blue to the birthday party. The two girls also decided to use the Novo Nordisk #LaceUp4Diabetes shoelaces as hair ties to rock even more blue.

FOT4C13 imagejpeg_3 imagejpeg_0-1 FOT7A37 copy

 

Is it just a coincidence too that her favorite animal was already a Unicorn? And now she loves Unicorns even more just like everyone else in the diabetes community.imagejpeg_0-4 copy

As I try to explain to my brother that yes, a diagnosis sucks, but in today’s world and the technology that we have and the community of support that is provided within the Diabetes Community, if there had to be a chronic disease that she was diagnosed with, at least it was diabetes. I know that may not sound good, but it could have always been worse.

Now, they are already gearing up for a Dexcom training and are already exploring the different options for insulin pumps. My brother and sister in law are lurking now in all the Facebook groups and Children with Diabetes forums and my sister in law even created a Twitter account because they want to learn and want to participate.

I want to thank everyone that gave a helping hand when I reached out for help. Some of you may not even know that you helped, but either a book or post that you wrote did. Please know that I am forever grateful for what you did in a time when my family needed you most.

Moving forward, my niece LOVES arts and crafts, so I have already shared some ideas of things that they can do that gives a positive outlook on her diabetes and doesn’t make her hate the disease and hate having to do what she needs to do in order to manage it.

FOT640I would love if you could please comment below or on Facebook different activities (using insulin vials as Christmas lights, Diabetes Art Day, etc.) that my sister in law can do with her that would be awesome. Also, any resources that you may have, for example, Children with Diabetes forums, Kids First Diabetes Second book, etc. please list them all below in the comments. My sister in law and brother will be reading this, so I hope to share with them plenty of additional information that I haven’t been able to share.