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!

 

One Month "Diaversary"

July 12, 2014:  Today is the one month anniversary of Eliana being diagnosed with Type 1 Diabetes.  One of many things I've learned is that in the diabetes world such milestones are called "diaverseries," and celebrated.  This still seems very strange to me, but the idea is that it is a celebration of life and survival, and living life well despite diabetes.   The annual "diaversary" is more commonly celebrated, but for me surviving through this first month is monumental enough.


Eliana has seen me reading the numerous blogs about kids with Type 1 Diabetes, and she asked me today why she was not featured on her own blog.  I told her that I would write about her diagnosis on the "family" blog, and she said that she wants to write her own entry as well, so stay tuned for that.  Eliana's diagnosis story is much less dramatic than most kids who are diagnosed, and I thank God for that!  Most kids become very, very sick, and have ketoacidosis at the time that they are diagnosed.  Eliana did not even have ketones in her urine, which we were told is very rare, and is because it was caught early.  I don't know how it was caught early, because in retrospect it seems like she was having symptoms for months, but I will just accept this as the grace of God.

In the E.R. at CHOP.  Does this kid look sick to you?

Eliana, always dramatic, had been extremely thirsty, and was running to the bathroom all the time.  Every time she ran to the bathroom she said she had to go so badly she was about to have an accident.  Every time she was thirsty, she was so thirsty she was about to die!  She had also been wetting the bed at night.  It is funny how the mind rationalizes things.  I researched the bed wetting extensively, and concluded that she was a sound sleeper with a small bladder.  We even purchased a bedwetting alarm.  When she had to go with such urgency throughout the day, I attributed it to the small bladder.  When she was extremely thirsty, I thought that it was because she did not drink enough at school.  We also tried to limit her beverages in the evening to help with the bedwetting, and figured her thirst was a resultant control issue.  But in the end you can only rationalize so much, and I began to suspect that she might have diabetes.  Pete and I decided to ask for bloodwork prior to her 6 year old checkup.  On June 7th, I enjoyed a girls day out with my sister while Pete took  Eliana  for her bloodwork.  Her checkup was scheduled for June 16th, right after the last day of school.

On June 11th, I actually began to get a little more concerned about Eliana.  I picked her up from school and surprised her and Leah with a trip to Morris Arboretum, one of her favorite places.  She was ravenously thirsty, as usual, and needed to go to the bathroom several times during our brief visit.  But she was also terribly whiny, crying over very little things, and generally seemed out of sorts.  I decided that surprise trips after a long day of kindergarten might not be the best idea, but in the back of my mind I also realized that I had not heard back yet about her bloodwork.

The day before her diagnosis

June 12th seemed like a normal, typical day.  I dropped Eliana at kindergarten, Leah at nursery school and went to work.  I left work at 2:00 and picked the girls up.  We went to Trader Joes for some groceries for dinner.  We got home a little after 4:00 PM, and the phone rang.  It was a doctor from the pediatric practice that we had never met before, but he said that based on Eliana's bloodwork it looked like she had diabetes.  Her A1C was 12, her fasting blood glucose was 148 (normal is less than 6, and less than 99).   He said that we should take her to the emergency room, and to pack a bag and to plan to spend a few days there.  While I was talking to the doctor, Pete came home from work earlier than usual because he was planning on going to a retirement party.  I motioned for him to come upstairs to talk, and quietly told him what the doctor said.  We decided to feed the girls dinner first, pack our bags, and then head to Children's Hospital of Philadelphia.  I called a neighbor who is a pediatrician for some advice, and to ask her to pray for us. She came over with a beautiful handmade Winnie the Pooh quilt for Eliana to bring with her to the hospital, but at that point we had not told Eliana the news yet.  When she left, we told Eliana we were going to have to take her to the hospital, and she began bawling.  It was a sad moment for all of us.

Thankfully, the hospital was a great experience for Eliana.  The first night we were in the ER for hours, but they gave her a box of arts and crafts, and games to play.  When she got her IV, someone came with an ipad and distracted her with games while they put the line in.  They even covered it up with a velcro cast so that she could not see the IV afterwards.  Pete and I were shocked to hear that her blood glucose level in the ER was almost 500 (140 or less is normal).  It began to sink in that there was a real problem.

 

As it got later into the night, Pete and Leah returned home, and I stayed with Eliana. When we finally made it up to her hospital room it was close to midnight.  She remained energetic, and was thrilled that she was going to finally realize her dream of staying up until midnight.  She was so excited we ended up reading together even after midnight to help her to settle down.  At that point, neither one of us realized the magnitude of her diagnosis.

The next morning Pete returned to the hospital, and we began three days of diabetes education classes.  During the first class, "Nutrition," the nurse began to explain how to count carbohydrates, so that we could properly dose her insulin to cover her carbs.  No one had previously told us that when we brought Eliana home from the hospital we would be giving her insulin before all of her meals.  No one had previously told us that this would need to happen for the rest of her life.  I tried my best to concentrate on learning how to count her carbs, but it was a lot to take in all at once.  Over the course of the three days we learned how to give insulin through syringes, how to check her blood sugar, how to correct her blood glucose with more insulin, how to treat a low blood sugar, and how to keep track of it all. We learned about how exercise, stress, illness, and a host of other things can affect blood glucose levels.  We learned how to inject glucagon if she were to have a dangerously low blood sugar; if she were unable to drink juice to bring it back up.

While we were in our classes Eliana (and Leah, at times) participated in music therapy, art therapy, and medical play therapy.  We also spent a lot of time in the cheerful playroom, and walking around the beautiful atrium area.  Nana and Papa came to visit, which made everyone happy.  Eliana loved ordering "room service" for all of her meals, and having her own television, in her own room.  She loved staying up late reading "The Lion the Witch and the Wardrobe," and all of the attention she was getting.  But, she did not like having her finger pricked for the blood glucose testing, and she liked the insulin injections even less.  The moment that it dawned on her that this was a new reality, and that it was not going away, there was the kind of sobbing no Mommy ever wants to hear. The staff at CHOP gave Eliana a teddy bear named Rufus, who also has diabetes.  We read the book that accompanied him many times, and Eliana practiced checking his blood sugar and injecting him with insulin.  We were surprised how much Rufus helped Eliana through those  first few days.

Rufus

In the playroom

Leah in a hospital gown after taking a bath in Eliana's private room

Injecting stuffed animals with insulin

Leah kissing Eli goodnight before heading home.

Eliana was in the hospital from Thursday evening, until Sunday afternoon, Father's Day.  Monday, the 16th, was her last day of school.  She decided that she wanted to go in to school for her last day.  Of course she wanted to bring Rufus, and his diabetes supplies.  Pete and Leah took her into her class, and she showed the kids Rufus and Pete taught the class a little about diabetes.  I met with the school nurse and school social worker to start figuring out plans for the next school year.  I came back to school at lunch time to check her blood glucose and give her insulin, and stayed with her while she ate her lunch.  She had enough of school by the time lunch was over, and after all she'd been through she was ready to come back home.  We were all impressed with her bravery to push on and make it in for the last day of kindergarten!

Leaving Kindergarten after the Last Day of School

We have all been amazed by Eliana's bravery and strength through all of this. She has learned to test her own blood sugar, and also to test her family members.  She is compliant with the insulin injections, although she still really does not like them.  She is patient through the slow process of having us count up her carbs and give her insulin before she can eat.  She is interested in learning about diabetes, and about the insulin pumps and continuous glucose monitors that will likely be part of her future.  She is aware that her life has changed, and she communicates her feelings - disbelief, anger, sadness, shock.  She is also aware that even with diabetes, she can still do anything she wants to do, and can follow any dream that she has.  We all continue to process this diagnosis, and all of our emotions that surround it.  But we are grateful for insulin, for excellent medical care, for each other, and most of all for a God who is all knowing and all loving.