Four Month T1D Update & JDRF One Walk

It has been a little more than four months since Eliana was diagnosed with Type 1 Diabetes. We have all adjusted to the physical components – counting carbs, checking blood sugars, insulin injections.  We all continue to process the emotional components in different ways.  The first few weeks of summer diabetes was a heavy and constant presence.  It takes so much attention and focus to manage, that it was easy to feel consumed by it.  Children are different than adults though, and Eliana would say sometimes that when she was having a lot of fun she would forget she had diabetes.  I was glad that she could forget about it sometimes, and it was clear when she was running through waves, going down the Super Slide with Sara, or flying a kite . . it was nowhere near her mind.   

It was good to have the summer together.  We spent a lot of time as a family of four, cocooning and figuring things out together.  The CHOP team advised us to try to keep things as normal as possible, and for the most part we did.  We took our second vacation to Ocean City, joined for part of the time again by Sara and Aunt Jessie.  We took a family trip to the Poconos with Nana and Papa and Aunt Jessie and Sara.  The kids loved spending time in nature, and swimming in the pool, even though it was really cold!  We still had our annual visit from Aunt Jenise.  We went to playgrounds, museums, and diners .  . adjusting each outing to our new reality. We realized that before we left the house we needed to be prepared with all of the supplies, and backup supplies, that could be needed.  We realized the challenges of counting carbs at restaurants and arrived armed with a scale, measuring cups, and various apps. We experienced the difficulty of checking blood sugar on the beach with sand, sunblock and saltwater working against us.  We carb counted S'mores around the camp fire.  We tried to be prepared for everything to try to help Eliana not be deprived.  Small acts of spontanaety, like getting ice cream from an ice cream truck, felt like small victories.  It may not have been a carefree summer, but it was a good summer.

We rented the same house, and the kids were thrilled to be back.

"I wonder how many carbs are in sand?" "Does it matter, it tastes really bad!!"

Pete kept a vigilant watch for seagulls.

Eliana amazed us by flying this kite in one attempt after Pete and I failed miserably.

 

Eliana and Sara went down the Super Slide a dozen times

It was great to see Eliana having this much fun!

On the ferris wheel with Daddy

Reunited with Aunt Jenise

No one can push a tire swing like Aunt Jenise!!!

Couldn't  you eat them up?

Leah's needed extra TLC lately, and Aunt Jessie was happy to oblige

S'mores are worth the extra insulin!

Eliana and Sara look like they're way too cool for the big chair.

Leah loves that I can pick her up and carry her around when she is water.

Three little fishies

The girls loved sharing a bed

There is none cooler than the Papa

Throughout the last four months family and friends have been wonderfully supportive.  Gran and Nana and Papa have all accompanied us to CHOP appointments and learned more about T1D.  Gran went with us to our first T1D Family Support Group.  Nana has been trained in injecting insulin and even handled an entire day of diabetes care so that Pete and I could go to a wedding and the kids could go to Penny's birthday party.  Matt and Jill counted each delicious carb served at Penny's birthday party so Eliana could fully participate.  Emma and Evangeline, our fabulous teenaged babysitters have learned about diabetes and are experts at checking blood sugars.  Family and friends have learned to check blood sugar, and allowed Eliana to check their blood sugar.  Friends have very generously cared for Leah so that she did not have to sit through so many boring doctors appointments.  The phone calls, emails, cards, prayers, and encouragement have all been very much appreciated.  We've also realized the importance of connecting with the larger T1D community and have met other families affected by T1D (one right on our block!), which has been great!

Eliana has learned so much in four months, and has gained an amazing understanding of her diabetes. She got her pink Dexcom right before school started, and I am so grateful for it.  I honestly don't know how people with T1D live without this device.  The Dexcom gives us constant trending information about her blood sugars, and we can test with a glucometer much less often.  Best of all it has an alarm that goes off if her blood sugar drops too low, helping us to be able to treat her low before it is at a dangerous level.  We can sleep at night knowing that the alarm will ring if she is low, which translates to far better sleep than we had been getting.  Eliana appreciates the Dexcom too, and is very diligent in keeping an eye on her numbers.  Since Eliana has started school she seems to realize that she needs to be responsible for herself, and even advocate for herself.  We are beyond impressed with how well she is doing.

Eliana is very interested in learning about the various cures for diabetes that doctors and scientists are working on.  She even comes up with her own cure ideas, and she's also working on an invention where insulin is delivered through bubble gum, rather than through injections.  We are planning to walk in the JDRF One Walk in Philadelphia on October 26th.   If you're reading this, consider showing Eliana your support by joining Team Rufus (click on the link for details, or email me!), I know it will be a memorable day!

 

My name is Eliana.  I have Diabetes and a little sister and a Dexcom.

Growing Girls

I just tucked the kids into their beds and am amazed at how large their sleeping bodies are.  How do they both take up the entire bed now, when just a few years ago they were little tiny lumps in the bed?  Granted, they are in toddler / kid beds that need to be upgraded soon, but I'm still amazed by their enormity.  They are four years old and six years old.  I realized I did not mention their birthdays, but they happened.  Eliana turned 6 in May and we celebrated with a cooking school birthday party.  (Just a few weeks before her diagnosis, I shudder to think of what her blood sugar was after that party!!!)    

 

Leah turned 4 in September and we had a backyard birthday party that turned indoor birthday party because of the weather.  Her birthday request was that no one sing "happy birthday" at her party, but Sister Bluford couldn't help herself.  Leah covered up her ears.  Her birthday wish was for a puppy.  She did get a toy puppy that really barks, walks and wags his tail, and he is going to have to be a good enough substitute for now.

Eliana and Leah have each moved up academically, to first grade and to the "Fishies class" respectively. Leah is enjoying being a Fishie. She is there three days a week, and stays for early care and lunch bunch, so they are long days.  Her teacher is very energetic and creative and she is learning a lot!   Leah started speech therapy services a few weeks ago and is already progressing well.  She continues to be a happy, social, cooperative and playful little one.  Her sense of humor has fully emerged and she loves making us laugh.  Her favorite things are mermaids, puppies and chewing gum (the gum is a newly earned privilege that came when she turned four).   Leah truly does want a puppy more than anything.  She prays for a dog at every meal.  She draws pictures of dogs and stops people on the street to ask if she can pet their dogs.   And of course, she is still obsessed with Casper, her Nana's dog.  Here is Leah excited for her first day of school: 

 

Eliana is doing great in first grade now, but had a rough start to the beginning of the year.  She’s never been overly thrilled when it is time to separate, but this one was particularly difficult.  I am sure that having to deal with her diabetes for the first time at school was part of it.  To make things more challenging, she has been having a lot of ongoing belly problems.  There were tears for the first few weeks, but then she settled into the routine.  On days when she managed to go into school without tears she received bravery prizes in a magic flowerpot.  The flowerpot has been helping us out for a few years now, and is definitely a motivator.  This photo of  Eliana on the first day captures her feelings about the new school year pretty well.

Eliana still complains about going to school, but she has gotten much more comfortable and into a routine, and I believe she is enjoying first grade.  She has a lot of confidence about math, and says that diabetes has taught her to be an expert with numbers.  I love watching her reading and writing progress.  In fact, I have to share a story that she wrote, that is based on a story that I had told her from my childhood.  (Translation to follow!) 

Candy Store Walk

When my Mom was little there were 13 kids on her block.  The kids begged and begged to walk to the candy store.  The big kids said they would hold hands with the little kids so the moms said yes.

We're still working on the details, like spelling and punctuation, but I love that she remembered this story and wrote about it all on her own.  I love these ages of four and six, and watching the kids do things they have never done before, and not knowing what new and exciting things they'll do next!  It is a blessing to be their Mommy!