4th Di-aversary Letter

February 9, 2011


Dear Family & Friends,

Today is EA’s 4^th Anniversary of being diagnosed with Type 1 Diabetes.  We pause to remember the day with some sadness and much thanksgiving.  We are thankful for how she has grown despite this difficult disease which wars against her body, 24/7.  We are thankful for Jerry’s job that provides for our much needed medical insurance and medical supplies.  We are thankful that I can stay home to manage her care and home school her in Kindergarten.

We are thankful for EA’s bravery and long-suffering in spite of the pain she goes through on a daily basis.  We estimate she has endured 10,220 blood sugar checks on fingers and toes with a lancet device (8 per day for 3 years and 4 per day for 1 year) and over 1,000 needle injections and/or pump cannulla insertions via needle.  To give you an idea what a blessing the insulin pump is, if she were on daily shots, she would’ve endured 7,300 needle injections instead of the 1,000 needle injections to date.  Aside from this, she has had dozens of labs performed, countless Doctor Appointments and her Mom following her about watching every bite of food she puts into her mouth.   Truly, she is a little girl with big courage and this makes it easier for us her parents.  We are also thankful for Pumpy the Insulin Pump monkey who has become another member of the family and who makes dealing with diabetes a bit easier for her.  (see pictures attached)

We are thankful for EL who loves her sister and is another set of eyes and ears for EA.  I am thankful for all the times she hears her sister’s sensor alarming at 5am with a Low Blood Sugar, yelling for Mom to come check EA.  I am thankful for her patience as she waits for her dinner while I check Blood sugar, or finish a medical procedure before addressing her need.  We are thankful that she does not harbor anger or resentment as the “Healthy Child”.

We are thankful for insulin, which although it is not a cure, it is a life saving medicine.  We are thankful for God’s strength and grace that has sustained us these four years.  Reading this scripture encourages my heart as I know God is watching her during those hours we are all asleep.   These verses have given us hope.

Psalm 121: 1-4

¹ I lift up my eyes to the mountains— 
   where does my help come from? 
² My help comes from the LORD, 
   the Maker of heaven and earth.
³ He will not let your foot slip— 
   he who watches over you will not slumber; 
⁴ indeed, he who watches over Israel 
   will neither slumber nor sleep.

Lastly, we are thankful for you, our family and friends who provide a support system around us.  We love you and thank God for you.  When you think of us, please pray for us as we hope to keep things as balanced as possible for both girls.  We pray for healing one day, be it an act of God or a medical cure.  Until then, we know God is helping us through the storm and that makes all the difference.

Here are some pictures through the years.

With Love,

Jessica & Jerry

EA: 15 months in the Hospital, Diagnosis Feb. 0

EA at the beach, 19 months, pumping since 18 mo. old

EA & EL the day Pumpernickle arrived

 EA, 5 years old at Children's Museum: Making pizza!

The Parents Big Book of Favorite Things

8/1/11 ~ UPDATE:

I was able to deliver the Parents Book to the Endo in March and the Medical Team there had to review the book with a fine-tooth comb to be certain everything was medically sound.  I felt like I was handing the Endo my BABY!  It was a happy day and I had a great sense of accomplishment.  

With regards to having other Pumpernickle dolls in the waiting room, it's not possible due to hospital regulations on keeping toys clean from germs.  However, I was happy to see more Diabetic books for parents and kids in the waiting room and our Endo ordered the new Disney book on Coco for the kids within the practice!  

Here are some photos:

Big sister, EL loving on Pumpy.  We had to order another Monkey for big sis, named, Petunia!

EA in her school room with Pumpy and a science project

Finished Parents Book!

The Pumpy page, so parents everywhere can get their own Pumpy!  :)

March 2011
I've been reading and researching Type 1 (articles, resources, etc.) a great deal these past few weeks.  Friday it all gelled in my mind and I have made a proposal to EA's Endo office.  I am proposing a great big book of D-Parents Favorite things that I will compile should the Dr. agree, giving waiting parents access to a wide variety of articles, resources, and all things D related.  I am also proposing the purchase of D-books for kids & teens to be used in the Waiting Room along with stuffed animals that have diabetic equipment.  EA thought it would be very cool to have another Pumpy to play with in the waiting room.  I am proposing welcome packets for newly diagnosed parents and carb counting computer games on the computers in the waiting room.

I meet with the Endo this Weds. and hope to hear what she thinks of my big plans.  My hope is that it would allow parents access to things that will help their children cope with the disease better.  I am also hoping for a good A1C from EA's labs!  Stay tuned...

EA Updates

Update (12/09):

EA turned 4 this October and is doing well. She is recovering from a hard year medically with lots of medical proceedures as they tried to diagnosed some GI issues she was having. She has been stable since May of this year for which we thank God. I agonized over whether to put her into public school, private school or to home school. Since EA doesn't recognize her lows and doesn't tell me when she is low, I decided to home school her for now until she is older and can manage her own diabetes care. We've made a lot of progress this semester and I am so glad! She loves studying phonics, numbers, puzzles, games and story time with Mom along with our outings into the city to do fun educational things. I just got her into a gymnastics class which she was hesitant about, but is loving now that she's getting used to it. Her endo also has diabetic kids cooking classes with the nutritionist, which I take her and her sister to just to let them meet other diabetic kids and start to learn about nutrition. We are so thankful.

Update (2/11):

We just celebrated 4 years of living with Diabetes this February. EA now wears the Medtronic CGM which communicates with the Medtronic Revel pump. We love this system, which has lowered her A1C and cuts out almost all Lows with it's Predicted Alarm feature. She is currently being Home schooled for Kindergarten and doing great!

Pumpernickle the Pump Monkey

Our entire family holds Pumpernickle the Pump Monkey dear to our hearts. I found this little fellow online about a year ago on Fifty50.com. He wears a pump with infusion site that adheres to his belly via a magnet, a pump belt and has a glucometer. We have given him his own pretend voice and he has a spunky personality. He is a great tool to educate the girls with and to make EA feel better about her Type 1 Diabetes. We use him to talk about counting carbohydrates, what to do when you're Low, and EA checks his BG during her own blood checks. Our girls have gone so far as to have made a care kit for him, complete with BG meter, snacks, banana juice box and lancet device, all from construction paper.

He is a great comfort to EA and travels extensively with us, whether it be to LegoLand, Korea Town wearing a pair of EA's undies with his pump belt or the NJ beach, Pumpy goes with us! And, you should see the smiles we get as I walk the streets of NY with a spunky mandu (EA) and her monkey!

Our Diagnosis Story

EA was ill and on antibiotics at the turn of 2007 and only 15 months when she began having diabetic symptoms. However, since neither my husband nor I have diabetes in our family, we did not pick up on it quickly. She was still nursing at the time and slowly stopped eating food and stopped moving about: rolling over, picking herself up, holding up her head, etc. She was soaking her diapers and loosing weight quickly. I took her to the Dr.'s office 4 times for the illness she had and kept telling them I was worried for her but they never pinpointed it until I went to the ER. Before she was diagnosed, I remember taking her to the store and she slept all the way there, during the trip and all the way home...in fact, she slept continuously. One lady commented, "what a good little baby you have!" I felt upset with this woman because EA wasn't being "good". Rather, something was very very wrong.

We finally went to the ER on a Friday night and after many tests they discovered her Blood Glucose was over 500. The Doctor started her on an IV and admitted her to the PICU. She was there for 5 days where they checked her blood hourly and gave Lantus and Novolog. We were in the hospital for 9 days total and she had IV lines in both legs and one in an arm. It was frustrating to receive her meals that were "diabetic" but laden with white rolls, applesauce and food that was made for adults which made her BG even harder to control. EA wanted to nurse for comfort, but PICU Doctors told me I needed to immediately stop nursing since they couldn't count the breastmilk. However, when they saw that she wasn't doing well with the other food, they allowed me to nurse again. Aside from the grief I felt over EA's diagnosis, my body was going through these hormonal changes as I was trying to wean her, nurse her, wean her, nurse her. Thankfully I was able to wean her after our discharge from the hospital. Life became more normal and we could both say goodbye to nursing on our own accord.

While in the Hospital, EA couldn't walk due to the IV lines in each foot, which didn't help with her high BGs. The pediatrician didn't really want to release us after 9 days since her BG was still high, but I just knew that once we got home and EA could heal, exercise and eat more appropriate food, EA would do better. I still feel immense joy when we go on family walks and I see her running ahead of us now, remembering how sick she was after her diagnosis.

Today, she is a happy 3 year old who has grown a lot and hasn't suffered developmentally from her hospital set-back. We were on shots for 3 months before switching to the Pump which has made a huge difference for us. Recently she has had some diabetic burn-out as she is really fighting me when I do her blood checks 8 times a day. I spoke with her endo who said we could give her a little break and check her less frequently to help her recover emotionally.

It is a lot of hard work to see EA thrive, but we have a special bond and it is absolutely worth it. We thank God daily for both of our girls and continue to do our best and pray for a cure for Diabetes.