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.
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| 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.
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| 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.
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| Rufus |
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| In the playroom |
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| Leah in a hospital gown after taking a bath in Eliana's private room |
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| Injecting stuffed animals with insulin |
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| 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!
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| 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.
