Our Type 1 Diabetes Diagnosis

When I left you in our last post, we had just learned that Baby had Type 1 Diabetes, and our family would not be moving to Okinawa, Japan.

There was still a lot in the air, would Paul go without us? What would happen to us if he did? What did this diagnosis mean? What about the dogs (who we shipped to Japan in April)? And the stuff the movers just picked up to ship to Japan? We were scheduled to move out of our house in a few weeks, we had plans to sell our cars, we had potential buyers for both.

First I’ll start with Baby’s diagnosis. Type 1 Diabetes. It’s not something we could have prevented. It’s different from the diabetes that you develop later in life, often as a result lifestyle choices. This had nothing to do with what he ate, or how he spent his first year of life. It just happened. His pancreas stopped producing insulin. Likely his pancreas has been slowly dropping in this function for months. Some of the symptoms from decreased insulin are also symptoms that tie in with growing babies, like increased hunger, decreased sleep. These are things that you wouldn’t rush off to the doctor for. But even if we had, even if 4 months ago a doctor had told us that Baby’s pancreas wasn’t doing as well as it was supposed to be doing, there is nothing that would have ‘fixed’ it. This was pretty much inevitable.

So now we found ourselves in the hospital, trying wrap our heads around this diagnosis, and answer all the questions I listed above. I think the stress of figuring out all of the stuff about our move to Japan, sort of overshadowed the diagnosis. Not in a bad way, but in that we didn’t go straight into heartbreak, we weren’t devastated. Our first step was to swiftly go into action to try to deal with our move.

In short we were able to quickly get enrolled in EFMP, which allowed us to speed up the process of getting Baby officially medically disqualified from moving to Okinawa. This disqualification, although depressing, was vital to our goal of having Paul’s orders to Okinawa modified so no one would have to move. We also had to figure out the situation with the dogs. I haven’t talked much about it on social media, but in April we made the decision to send the dogs in advance to Okinawa, so they would be there when we arrived. Most airlines have a heat embargo during the summer from late May-late September. They do not allow snub nosed dogs to fly at all. This is because they overheat easier, thus it’s more dangerous for them to fly. I immediately got to work with our transport company to get the dogs back to America if we had time, because they had already embarked on the most expensive Japanese vacation any dog has ever had. Time wasn’t on our side though and we were only able to get one dog on a last minute flight before the heat embargo, so the other is being kept with the dog transport until she can fly again. It’s not a perfect situation, but it’s the safest for her.

By the time we got all of the above figured out, we had already begun to work on a routine, we had already had our ‘crash course’ in T1 Diabetes management. We were fast learning about insulin, glucose, testing Baby’s blood, checking for ketones, how to properly do injections, how to use an insulin pump, and how to count carbs. We had a few setbacks, we had some really high highs and some lows, but after 9 days we were discharged from the hospital. I really have nothing but positive things to say about the hospital. We had great doctors and nurses, we met some great people, and we are positive about Paul’s future. We have been told over and over, because he is so young, and we are able to establish his care properly, he will never know what life is like before diabetes. Although things seem difficult now, his life should be easier because this happened while he was so young, versus it happening in 5 or 10 years.

We are now home, establishing our new normal, and learning how to keep everyone healthy. We have had a few setbacks, but we are back on track this week.  We have been working on putting our home back together, it took a while but we were able to get our stuff that was packed up the morning of his initial hospital trip back, before it left for Japan.  Baby Paul had his first birthday a couple weeks ago, and he got more toys and clothes than he could ever imagine.

We are still learning, but we will continue to do our best.

We aren’t moving to Okinawa

 

We were supposed to fly to Okinawa next week. We had planned, gone through all the screenings, gotten passports and airplane tickets, we were ready. A couple of weeks ago, on a Monday morning, the movers came to pack our unaccompanied baggage, which is the stuff we wanted there when we got there. Before this we had all been sick, for about 2 weeks all 4 of us had been fighting a nasty cold. That day baby Paul was really fussy, but he was sick like the rest of us. As the day wore on, the movers came and left with about a quarter of our belongings, the baby seemed okay just cranky.

Later in the afternoon everyone was resting and I took the baby outside to play and I noticed he was randomly gagging, sort of dry heaving. I decided he should nap too. While trying to get him to sleep Paul noticed he was breathing rapidly, shortly after I couldn’t get him to latch on to breastfeed. This was the most concerning symptom because he’s never in his life refused the breast, but it was like he couldn’t latch because he was struggling to breathe.

I rushed him to the ER. I believe they thought he had RSV, he was immediately given a nebulizer, IV fluids and a chest x-ray, which came back normal. The next step was the doctor tested his blood sugar. At that point the doctor told me I needed to call my husband because my baby was going to need to be transferred to the pediatric ICU at the larger medical facility about an hour away. They said he was in Diabetic Ketoacidosis. I didn’t really know what any of this meant, except that he almost surely had Type 1 Diabetes, and if that were true everything was about to change.

Within a few hours we were in an ambulance being transferred to the hospital. Baby was stable but his blood sugar was still way too high, and he still had a huge amount of ketones in his blood, which were basically poisoning his kidneys and liver from what I understand. Once we got to the ICU we quickly met several doctors and nurses which told us there was almost no question he had Diabetes. We spent all night testing babys blood sugar hourly, checking the levels for ketones, and adjusting his insulin and glucose dosages. The first night they wouldn’t let me breastfeed him because they needed to be in control of his glucose and insulin while they rid his body of the ketones that were poising his blood. It was a very long night with pretty much no sleep.

The next few days are a blur. He was officially diagnosed with Type 1 (T1) Diabetes, and we rushed to get him enrolled in the military program that helps our family when we have a family member with special needs; EFMP– Exceptional Family Member Program, we needed to be enrolled so we could try to stop our move to Okinawa because they do not have the military medical professionals on the island to treat insulin dependent diabetes.  We knew right away, with Baby’s diagnosis the kids and I would not be moving, but we were desperately trying to make it so Paul wouldn’t have to go without us.

So that’s why we aren’t moving to Okinawa. I am still very sad, for a lot of reasons. I’ll write another post and finish the story later this weekend. I need to dry my eyes and drink some coffee right now. I’ll leave you with a picture of my precious little boy, being a brave dude with his little robot arm, that protected the only IV line that he didn’t blow out the first few days in the hospital.

Homesickness

This morning on my drive into work I was listening to the podcast JQNA. It’s hosted by my favorite YouTuber- Kat from Kitty Does Japan. The episode was about homesickness. I couldn’t help but relate to her feelings about Japan.

Some beach on the Eastern coast of Okinawa, around Kin.
Some beach on the Eastern coast of Okinawa, around Kin.

I only lived there for a little more than two and a half years, but I felt more at home there than I have in anyplace we have been since. I frequently mention Japan, in my blog and in real life. It is a place that is very dear to my heart. Daily I find myself longing to return.
I think it’s safe to say I am homesick for Japan, specifically Okinawa. I think there are a lot of factors in this. First I feel like our time was cut short, we were about to ask to stay longer than the 3 years we were supposed to be there, and we suddenly found out we had to move, earlier than we thought. Also between Paul’s deployment and workups for his deployment, he was off the island for about a year, so I was there without him.

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Our last night out with friends, we left a couple days later.

It’s hard to narrow down the way I miss Okinawa. I miss the food, the beach, riding my bike all over, our friends. But I just miss being there, I miss the way of life, I miss the convenience. I can’t really explain it, except by labeling it homesickness.
While I was there, there were things I missed about the states, certain food places, shopping in department stores (and finding clothes that were my size). I missed my parents, and my family. But I didn’t miss those things in a “I’m longing to return to them” way, it was more like “I wish I could get those things here, but I can’t and that’s okay”.
I don’t know if the military will ever bring us back to Japan. I hope so because that would be easier than trying to get there on our own, especially since we have a family now. But I feel like we will return someday.

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Days after Paul returned from his deployment.

If you are interested in learning more about Japan, Check out Kitty does Japan on Youtube, Kitty Does Japan Blog, and JQNA, all are great sources of info for people looking for info, or those who just want to live vicariously though an expat with awesome adventures

*This is not an advertisement, it is just a post that was inspired by my morning podcast listening. Also it’s a great way for me to further procrastinate the massive amount of school work I need to do today.

 

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Wanderlust Wednesday

Can we talk about food today? I miss the food in Japan.

Yakiniku meat
Yakiniku meat

 

Yakiniku Grill
Yakiniku Grill & a delicious beer

 

Sushi Zen
Sushi roll from Sushi Zen

 

King Taco!
King Taco! Best Taco Rice on the island

 

Sushi lunch set
Sashimi lunch set

 

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Unagi Lunch Set

 

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CoCo Ichibanya curry!

 

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Ramen and Gyoza

 

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Beer vending machine. Best idea ever

 

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Garlic fried rice

 

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Sunabe Gyro

Le Sigh* I really miss the diverse food in Okinawa. It’s weird, I am in North San Diego, you’d think I could find all kinds of foods to suit my every craving whim. But there is so much that I cannot find. Maybe a huge part of it is my love for Japan, and how I long to return.

Paul and I were talking the other night and one of the things I miss the most is izakaya food. They are these little bar/restaurants that have basically an extensive a la carte menu. You can get some meal sets, but most of the food is single serving. You can spend about $3 and try some squid, if you don’t like it, it was only $3, if you love it, eat 6 more orders. We could easily go out and spend about $50, eat lots and lots, and throw back a few beers, leaving full and happy to walk home. I really really miss that. The one by our house was also very family friendly. People were in there with kids all the time. Everyone was very social, it was a very open area, with a bar area and a large tatami mat area with lots of tables in a big open floor area. You’d sometimes find a group of kids playing in one corner quietly while their parents sat with their friends enjoying a beer and some sashimi. It was quite a bit of fun for everyone.

 

 

Wanderlust Wednesday

I have been sort of CRAZY busy with school. But things are winding down. I’ve got a class that ends Sunday and I will be down to one 8 week university class and two full semester community. college classes. I’ve got a big paper to put together this weekend and then I am hoping it’ll be easy going through December.

But being so busy in school has given plenty of time for my mind to wander about places I’d rather be. So of course my  heart goes back to Japan.

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American Village Ferris Wheel 2010
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Paul walking Aiko down our street
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Kokusai Street
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Sunset in the Road Mirrors
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Biru
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Vending Machine Heaven!

Someday I hope we are able to wander back to Okinawa again.

This week I am linking up Wanderlust Wednesday  with Kassie at Mr. and Mrs. O  Go check her out! 

Wanderlust Wednesday

I love the idea of a weekly look into my adventure desires. I will try my hardest to not have them all be related to Japan.
But starting out I can’t help but share my strong desire to return to Okinawa, Japan.
We really enjoyed our time there and are anxiously awaiting an opportunity to return.

Here are some of my favorite shots from Okinawa.
It’s really hard to sum up 2.5 years in just a few pictures, but in effort to not make this post miles long here goes:
(all photos are my own)

Shiasa in front of Stacys house
Sunabe Seawall
Alana and mom at castle ruins
Ocean at sunset
Jetty
blue green sea
blue green sea
Northern Okinawa
Northern Okinawa
American Village
American Village