Milestones

A few big deals happened in the past month, so I am highlighting those:

Dalton Football made it to the state playoffs.  This has never happened in school history.  So, we had streamed a number of playoff games leading up to the state game – even made a fun party with family and friends out of one … super bowl style!!  But the big game happens at the Pro Football Hall of Fame stadium in Canton which is only about 30 minutes from our house.  We thought, We should really just go.  So, we did.  We carpooled with Ben and Steph’s family, packed up our blankets and rain jackets, and went to the game on a Saturday morning.  The weather could have been a lot worse.  There was some misting rain for a bit and it was overcast, but it wasn’t bitterly cold.  We had a lot of fun watching.  But we lost decisively (38-0) to a team that has not lost a game for 3 or 4 seasons in a row and a school program that has won 14 state championships, the most out of any Ohio program.  But we went in and played hard despite the odds stacked against us and early injuries in the game.  A memory milestone for sure.

    

Ellie had her first set of braces taken off.  Round 2 will happen somewhere down the road after she has lost all her teeth.  So, here’s to the forbidden candy and foods in the meantime! 

         

Ellie also is (kinda) trying out contacts.  Jeremy recommended that she get some since she is playing basketball, even if she just wears them for basketball practice and games.  Ellie conceded.  She loves her glasses (and I love that she loves them)!  However, we had her fitted for contacts, and it is working out okay, but it is a learning curve every time she wears them since it feels like the first time every time.  We’ll see how it goes.

Diabetic medical advance – the Dexom G7 became compatible with the Tandem T-slim pump.  This Dexcom is slimmer and smaller the the G6, so Ellie was really excited about it.  It sounds like the T-Slim is coming up with a smaller version of itself as well.  It is amazing how the technology is changing in the few short years we have been using it. 

Madison participated in her second (and last) spelling bee.  She went into it with a little more experience than last year.  She didn’t feel the pressure, but hoped to do better than last year.  And she did!  I am proud of her for doing it.  It takes a lot of courage to stand in front of the entire 5-8 student body and spell words. 

    

Diabetes Camp

June 6-10

Akron Children’s Hospital offers a diabetes camp each summer at Camp Y-Noah.  They rent the camp, and staff it with endocrinologists, nurses, and all the people who know exactly what to do with the kids medical needs.  They also get counselors and junior counselors who were campers and are diabetics to guide the kids in the most fun week ever.

Ellie was excited.  Then nervous.  Then unsure.  Then accepting.  Then excited/nervous.

We loaded up Monday around noon to head to camp.  We had the bag packed, bedding in tow, even bought a small rechargeable fan for her to use. 

We removed her Dexcom – the glucose number tracker we rely on – because they wanted kids to go without electronics and this uses her phone to run.

We proceeded through the nine stations – all well organized and well run.  There were stations for your name and the swag you get (new glucometer, glucose tablets, t-shirt, water bottle all in a bag), checking meal carb plans, verifying insulin types and ratios, turning in pumps/supplies if you had them, and getting your cabin number. 

Finally, we were led to her cabin.  The counselor that took us there told us her favorite things in the past at camp have been Gaga Ball Pit, horseback riding, and being with others that are like her.  Cabin 1 was attached to the infirmary which made all the dosing very convenient.  It was a cabin with ten 9-10 year-old girls along with 3 counselors. 

I helped Ellie make her bed, took a quick picture, and off I went – leaving her to try something new and brave.

    

While she was gone, Jeremy was also gone for 3 days in Washington/Idaho.  So, Madison and I held down the fort.  We went shopping in Canton for summer clothes, shopping at MCC for fun trinkets.  We invited Grandma and Grandpa Ediger over for dinner one night.  Grandma invited her out for a ladies day with Megan – playing in the creek, eating out, and hanging out. 

              

I tried to dig out from my KC trip and the end of school – cleaned the showers, vacuumed the floors, changed some sheets, did some laundry, and decluttered a bit.

Madison had the idea of making a welcome home chalk sign for her on the driveway.  So, she and I worked on that on Thursday night.

  

On Friday, Jeremy, Madison and I returned to Camp to pick her up.  We assumed we would find her happy, but I was dreading that the opposite could also be true.  Thankfully, she was bouncing off the wall happy.  She had everything packed up, a pen pal’s address in tow, and a huge smile on her face. 

It was nothing but camp stories all the way home.  She was scariest story teller, earned the curious camper award for trying everything, ate cotton candy, enjoyed a wacky campfire, and so much more.  She plans to go back next year – so I better keep my eye out for the date and get the registration in.  I am so happy for her!

    

Finish up February

It has been one of my longest times of silence on the blog.  Not sure what has happened to suck me away from this.  Life has just felt like a never-ending hamster wheel.  But there have been some moments where the monotony and speed and expectations relax, and I find myself again.  I guess in those pockets I choose to do something else – probably read.  It is my escape – maybe more than it should be.  It is much easier to watch someone else’s life unfold.  Their problems happen. And be solved.  Characters who are annoying are only with you for the duration of the book.  And those that you love, you tuck away in your memory bank. There are always things I would like to see happen.  Places I would like to go.  Gatherings I would like to organize.  Sometimes a book is just safer and easier than trying to do those things.  At this point, I have about 6 weeks of school left, and I wonder, Will summer be different or will it slip by before I do all the things?  Not sure.  I am trying to just take each day as it comes at this point. 

Deep thoughts.

Here’s to February’s last breath…

Madison participated in the Wayne County Solo and Ensemble Contest this year.  I was proud of her for trying it out.  She played a flute duet with a friend of hers.  She worked hard to get her part down. We listened, and she played along with, a person on YouTube that played the piece with a clarinet.  It was extremely helpful.  The week of the contest, her friend came over two different days to practice a little more with her.  Then on contest day, we could go listen.  They did so well.  The best that I had heard them play.  They earned an Superior rating.

Ellie celebrated her Dia-versary on February 21.  That is the one year anniversary of her diagnosis.  She could pick what she wanted to do to celebrate.  She wanted to roller skate.  So, off we went to improve our skating skills.  She had a lot of fun using her new (hand-me-down) skates.  I laced up a pair of skates that had a tongue hanging on by a thread – literally.  It didn’t matter.  Skating happened for all of us – Ellie on her personal skate.  Jeremy on rollerblades.  Madison on rentals.  And me on rentals.  Grandma and Grandpa Ediger came just to watch the fun and celebrate the date as well. 

This past year has not been without some bumps in it.  But I am so proud of how far Ellie (and all of us) have come.  Dexcom changes happen fairly quickly without the tears now.  Carb counting is getting quicker and more routine.  And she is now giving herself her own shot, which has allowed her to go over to friends’ houses and be a little more independent.  We have a long way to go.  And sometimes, I look at her, and I think it really isn’t fair and this really sucks.  All her life she will have to manage this – think about carbs, dose for all the bites of food she takes, go to bed wondering if she will be low, explain her Dexcom when someone asks, give a tutorial to friends and friends’ parents every time she goes over, and prick, poke, and wear something.  It’s fine.  But that doesn't’ mean it doesn’t still give me pause once in awhile.

February is almost gone…

Not quite sure what has happened to it – a lot of snow, ice, and wind, I think! 

Flip back the calendar a page and let’s wrap up the last weekend in January.  Madison went to Youth Winter Retreat at Camp Luz with a lot of jr. high kids from our church (and other churches).  It is only a weekend, so it is a different vibe from summer camp.  You also stay specifically with your church group, so that is different.  She was a little hesitant to go, but she ended up really enjoying it.  The first night their cabin door blew up and the frigid air infiltrated their night.  It was down to 49-50F in there!  Their sponsor had them layer clothes on and bundle up with the heater tried desperately to start warming it up again.  They had lots of snow to play in, too.  I am hoping this was a good start to JHY for her – getting to know the older girls in the youth group and making better friends with them. 

Madison had wanted to join ski club at school this year.  This is a club that takes the kids on a bus to Snow Trails every Tuesday during ski season.  While I thought I sounded fun, it made me nervous to send her “alone” to navigate getting her skis, the slopes, etc.  We had only skied once before.  Plus, they got back pretty late on Tuesday night.  Our compromise was we would try to take her a few times this season to give her more exposure and see how she felt by next year.  We planned to go on February 4 after school with the Paulis; their daughter Ellie had also considered ski club, but they decided to take the same approach as us.  Well, as snow storm blew in on Wednesday, and even Friday the roads were questionable. They ended up clearing enough for us to travel to Snow Trails.  It was amazing, fresh snow to ski on.  We had fun skiing from about 4-8pm. 

              

Somewhere in those snow days, the girls had the neighbors over for a sleepover.  They played outside for almost the entire day and then took a supper break at their own homes before reuniting for the night.  We had just bought a couch that pulled out to make a full bed, so we tested that out as well.  The next morning, they made a feast – pancakes, eggs, and blueberry muffins. 

       

Madison and Jeremy also went skiing this past Saturday from about 12-6pm at Snow Trails.  While it had been warm, rainy, and then cold and icy the days leading up to it, the resort had time to groom and make more snow for pretty good conditions on Saturday.  Madison ventured on blue slopes our last time out, but stuck to them almost exclusively with Jeremy.  She even used the ski ramps that were built along the edge to just go up and over; she really enjoyed that.  It is neat to see her confidence grow. 

While Madison and Jeremy were skiing, Ellie and I headed to the animal shelter to pet some cats and dogs.  She had a lot of fun, especially because there was a pen with three puppies in it.  This is Papi, a Chihuahua mix on the left, and Bosco, a English Sheepdog on the right. We took a few dogs out for a bit, but it was cold  We will have to go another time when it is warmer to let them out longer.

    

Madison recently rearranged her room and Ellie rearranged her this weekend.  I am not good with the before and after pics, but it is fun to watch how they continue to find new configurations for their stuff.  They have gotten faster at rearranging, and also better at putting their own things away afterwards. 

Jeremy and I went out on a date to see the movie, Marry Me, and eat out at The Nook.  It was a good chick-flick, which I feel like I haven’t seen in forever.  The food was good at the restaurant, too.  Our next date is to the Eagles concert in mid-March.  We should get in the habit of one date night a month.  It is good to be out and learn how to talk to each other about the things that aren’t just the details of the daily grind. 

Enjoy the last bits of February – sunshine and 50s out there today.  It is also Ellie’s one year anniversary from her Type 1 Diabetes diagnosis.  We will be celebrating today with a trip to the roller rink. 

CGM

Ellie finally got her CGM (Continuous Glucose Monitor) on Friday, March 26.

I had been on the phone with insurance and the medical supply company and the doctors office for at least 4 weeks trying to get the paperwork pushed through.  I was calling almost 2-3 times weekly to follow up on conversations.  I talked to new people almost every time I called.  The truth was it felt like the one thing I could do to make life a little easier for Ellie – and it wasn’t moving along very quickly.  It was exasperating. 

Finally, they said when I called on the 19th that it was released to the warehouse to ship.  I tried to make a training appointment with the doctor in anticipation of receiving it.  They said I needed to have it in hand before the appointment would be made.  It arrived on Tuesday, March 23, and I asked firmly, but politely, if we could have appointment by the end of the week.  We were having our Diabetes Boot Camp, so we could use this as another tool of education.  They fit us in on Friday afternoon at 1pm… an early release before Spring Break. 

What is the CGM?  This is a small device worn on the body to measure blood sugar levels continually.  It has a small tube that sits under the skin.  A transmitter affixes on top of that and sends a reading to Ellie’s phone every 5 minutes.  It is amazing.  We got the DexCom G6.  It has an applicator to put the sensor in (thing with the orange button), a transmitter to send the signal (small piece rimmed in purple), and then a receiver or your phone. It can be worn on the love handles/upper bum area, the stomach, or the back of the arm.  You wear it in one of these locations for 10 days and then change the location to give each place a break. 

    

It is an amazing piece of technology.  We don’t know the power of how to use it yet, but I can imagine it would help immensely once they teach us even more. 

Here is the thing… Ellie has very little body fat.  She is active, healthy, and growing.  Often these things are placed in places where there is body fat for two reasons: 1) to get a good reading, and 2) so it doesn’t inject and sit right in the muscle. 

We picked the stomach as our first placement site.  We thought it would be most out of the way.  Ellie had researched if it hurt; by all accounts, people said no.  Well, it does occasionally hurt.  It hurt her more at the beginning to move positions from sitting to standing to laying down to bending over.  I am not sure if it was the tube inside poking at a muscle, heightened nerve endings, the adhesive tugging at skin, or all of those things.  At any rate, it wasn’t as comfortable as we imagined it would be. 

Frankly, she is ready to be done with it.  I told her she has to give it a month.  It gets her out of constant finger pricks for blood sugar readings four times a day.  When she started doing those, she didn’t like them either.  So, I said she needed to give the DexCom the same amount of time to adjust to it.  By the time a month is over, we can try it higher on the belly, on a love handle/bum, and on the back of the arm.  Hopefully, one of these will be most comfortable. 

As the week has progressed, she has gotten more comfortable with it with less pain.  In fact, she is jumping on the trampoline, swimming, and bowling with it!  I say that’s all good. 

This is a journey and it is not an easy one.  The newness has worn off and now we are caught in our new normal – count carbs, talk about food, measure food, look at numbers, think about the next step, adjust to new things, work through pain, etc.  It is amazing to watch Ellie maneuver through all this – sometimes sad, sometimes angry, sometimes upbeat, sometimes just Ellie.  Any and all of those emotions are good to see.  One day, I hope that this wil just all process in the back of her mind and it is a fluid navigation of the day.  We are just not there yet.

Diabetes Boot Camp

One thing about Ellie’s diagnosis is that in some ways she is less independent.  Before on a Saturday morning, she and Madison would get up, play, eventually make breakfast, and eat.  That can pretty much be the same, but either Jeremy or I help with the carb counting and insulin shot.  So, she needs us again.  While that it okay and understandable, it has been a little bit of a transition I wasn’t ready for.  It also means that going overnight to her cousin’s or grandparent’s house becomes a little trickier. 

Enter “Diabetes Boot Camp”.  No, it wasn’t really called that, but I felt it needed a name. 

Jeremy suggested we take the grandparents away to a cabin for a weekend retreat and learning experience.  it would give us all some time to hang out, get away, and build memories while they practiced counting carbs and administering insulin.  It worked out to go the first weekend of spring break.  Jeremy found a nice Air BnB in Seneca Lake – only 1-1/2 hours from here.  It had a perfect number of bedrooms, good hang out spaces, and a kitchen for meal times.  Oh, and we could take Pepper!

We left around 4:30 on Friday, stopped for supper at Cracker Barrel, and got to the house around 7:30.  We quickly unloaded the vehicles, explored our new place, and prepped for bed.  Grandma Yoh had the first shot of the weekend.  And so the rest of the weekend went – grandparents were assigned meals and insulin shots so everyone knew who did what. 

What I hadn’t really thought about was how stressful this was going to be for Ellie.  That’s a lot of new, inexperienced people giving her shots.  It was also a new environment.  It ended up going okay, but her blood glucose numbers trended high all weekend, probably due to stress. 

Saturday was a beautiful day.  We had a big breakfast then hung around the house in the morning. 

After lunch, we decided to head out to the lake.  Jeremy had brought his kayak, so he took that out. 

    

The rest of us took the path up to the playground area to hang out. 

    

After about an hour, we headed back to meet Jeremy.

           

Then, we went to check out the beach (closed for swimming, but open to look at).  While there, my dad started talking to a couple having lunch at a picnic table.  The wife was diagnosed with type 1 diabetes too!  So, Ellie went and said hello with Grandpa helping her. 

Back at the house, the girls played a fun game that Grandma Yoh had brought along.  It was a paddle and koosh ball type thing.  They had fun. 

    

Jeremy grilled chicken for the Chipotle Chicken and Rice bowls – one of our favorite meals.  We dove into supper, ravenous from our day outside.  We ended with Ellie’s homemade brownies and ice cream. 

We tried to get to bed a little earlier Saturday, but I don’t think we managed.  We were all pretty tired – Pepper included!

    

On Sunday, it was raining as we ate breakfast and packed up.  We were definitely thankful the weather we had on Saturday to enjoy. 

We stopped at Freddy’s Burgers for a light lunch on the way home. 

It was a good weekend – both as a getaway and a training camp.  I think the grandparents are somewhat more confident in hosting Ellie at their house, but I think they will also want us nearby (not out of state) when we leave her the first time. 

Happiness is being with your grandparents….