Our Diagnosis Story

     EA was ill and on antibiotics at the turn of 2007 and only 15 months when she 

began to have 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 

losing 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 (BG) 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 at 15 months with her adult "diabetic" meal.

EA wanted to nurse for comfort, but PICU Doctors told me I needed to immediately 

stop nursing since they couldn't count the carbs in breast milk. However, when they 

saw that she wasn't doing well with the other food; they allowed me to nurse her 

again. Aside from the grief I felt over EA's diagnosis, my body was going through 

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. 

Trying to entertain a baby in the PICU wasn't easy...

     During our stay 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.

First beach vacation with Diabetes, 17 months old wearing her first pump.

    

Girls ready for the beach.  I quickly learned the thigh isn't the best place to
put a pump site if you're going to be sitting in the sand and waves!

     I remember the first time I had to do EA’s shot and how the nurse looked at me 

strangely that I was so nervous.  She looked me in the eye and told me, “Don’t be 

afraid, you’re keeping her alive with every shot you give her.”  Almost 5 years later, 

I have become a pro at giving shots, although we are now on the Medtronic Revel 

insulin pump, which means we do one shot to insert the pump cannulla every 

2-3 days instead of the 10 shots she would normally take every 2 days.

    Shortly after our discharge, my husband and I debated what we should do about 

his upcoming trip to a restricted nation in Africa.  If it were just him, he could easily 

cancel the trip, but since a whole team of people were also going with him and 

sacrificing money and vacation time for the trip, I really felt he should go.  When 

my sister-in-law and my father told us they could come to stay with the girls and I 

in his absence, we felt a peace for him to go ahead with his plans.  So, about 5 days 

after our release from the hospital, my husband left with his team of medical 

volunteers to do medical clinics in the desert.  Since I have now experienced the 

agony of being a mother to a sick child, and wondering what in the world is wrong 

with my child, and how can it be fixed…my heart goes out to mothers around the 

world who have no clinics, no access to Doctors, no access to insulin and other 

medications.  I can imagine their desperation and heartache for their children and 

because I have felt the same, I gladly send my husband.  I gladly send him with 

Teams from our church to help people in difficult situations, to hopefully bring 

comfort, knowledge and help.  And most of all, to share the One who can bring 

peace in the midst of hardship and pain. 

^{Romans 5:1-5}

^“Therefore, having been justified by faith, we have peace with God through our Lord Jesus Christ, ² through whom also we have access by faith into this grace in which we stand, and rejoice in hope of the glory of God. ³ And not only that, but we also glory in tribulations, knowing that tribulation produces perseverance; ⁴ and perseverance, character; and character, hope. ⁵ Now hope does not disappoint, because the love of God has been poured out in our hearts by the Holy Spirit who was given to us.

Apidra Insulin vs. Humalog

Happy New Year Everyone!

Some time ago I asked our Endo about the newest insulin other Moms had spoken of,

Apidra.  I first read of Apidra about a year ago when Lorraine of "This is Caleb"

blogged about it and it piqued my curiosity.  When I spoke to the Endo, I was told

that it's about the same as other rapid acting insulins, so I didn't pursue it any further.

However, when Wendy at "Candy Hearts" put Apidra to the test some time ago, I

decided to ask the Endo again.  This time we were offered 2 sample vials of Apidra

from the Endo's office, which was really exciting.  We started last Friday and the

changes were almost immediate.  She's within range a lot more and has less High

BGs.  I did a sensor upload last night and was amazed to see that she was within

range about 80% of the time using Apidra compared to 16-48% of the time using

Humalog.   Exciting!   These results have also been with some carb counting

mistakes on my end, so I am hopeful we can have better results in the near future.

Hope this year is a healthy one for everyone!

Jessica

We fell in love with Dexie...

I've always hear other D-families rave about their Dexcom CGM (Continuous Glucose Monitor), but didn't really consider making the switch ourselves.  We had the Medtronic CGM which integrated with EA's Medtronic Revel pump.  However, at a Family Diabetes Event, we heard Dr. Gary Scheiner speak about the latest Diabetes technology, including the Dexcom.  Hearing others' stories and hearing Dr. Scheiner talk about the increased accuracy and decreased pain, caused me to consider Dexcom for the first time.  We got started and several months later, we have fallen in love with "Dexie".


Here are some of my favorite things about Dexie:

• It's a smaller site that doesn’t need extra adhesive tape (savings: $115/box for 55 large Tagaderms)
• The insertion needle is MUCH less painful, and I can change the site now while she is awake.  The whole insertion process is much less stressful for me, and I only have to change it once a week, which relieves me of a lot of stress.
• EA has almost NO irritation/itchiness at the sensor site.  This was a big motivator for me in considering Dexie, since EA complained of itchiness quite often and seemed very uncomfortable with the Medtronic.  
• I’ve almost never lost a sensor connection with the Dexcom, while the Medtronic did this to us quite often, even if the pump & sensor were inches apart.  This caused us to loose data and be without the sensor readings for several hours while it re-booted.
• The receiver is easy to read.  EA herself reads the receiver to me, and presses the OK button to clear the alarm.  This is much easier than the integrated system of Medtronic, because the button process is a bit more complicated.  She seems much more confident with the Dexcom and loves to enter info herself.

There are 3 things that I do miss from the Medtronic Sensor: 

• One can NOT program the alarms like you can on Medtronic.  EA almost always has a large post-breakfast BG spike.  With Medtronic, I would turn off the high alarm during the after breakfast hours so it wouldn't beep incessantly during her class while I worked to get those spikes down.  With Dexie, I have no control over this and she just beeps away in class, but has learned how to turn it off.  She knows to alert the teacher if it says she's low.

• EA cannot take ibuprofen, so she must take Tylenol for any high temperatures.  We had our first bout of sickness with strep shortly after receiving the Dexcom.  I rely on the CGM to help me through sick days when EA's BGs are more volatile, so I was disappointed to learn Dexie is not accurate when someone is taking Tylenol.  I did find that Tylenol suppositories do NOT affect the Dexcom.

• We now have to carry an extra device, the receiver.  However, with the new pump pouch EA has, she doesn't seem to mind.   I hope Dexcom can address the alarm & Tylenol issues in future versions.

Otherwise, we are very thankful for Dexcom and how it has made wearing a CGM more comfortable for EA and giving us more peace of mind with it's increased accuracy.

Koreans with Diabetes

Yesterday we ate at a Korean restaurant known for it's delicious Kal-bi (BBQ beef) cooked at the table in front of you, and it's delicious side dishes called Pan-chan.  Of course, being in the funny stage she is, EA would only eat sticky white rice with some Korean vinegrette poured over it.  I pre-bolused for what I thought she would eat carb wise, but watched the sensor show her spiking BG despite the pre-bolus.

It made me think about Koreans and how diabetes is viewed in Korean culture.  Is there social stigma attached if you have Diabetes?  How do you avoid sticky rice that will spike your BG faster than you can say "mashi-seyo" (tastes good) when it's so deeply ingrained in your culture?  It seems to me that to be Korean is to eat sticky rice!  What is your favorite ethnic food that isn't Diabetes friendly?

Jessica with home made Korean Kim-pop, the  Korean version of sushi

EA with older sister EL, dressed in Korean Han-bok for Spirit Week at School.

Duk-boogie, Korean rice cake with sauteed veggies and Korean sauce, one of my favorites!

Adrenaline & the 26

I am still recovering from last week's All-Time LOW of 26.  For the most part, EA's Lows tend to be in the 60s and sometimes a rare 50.  However, last Tuesday we were at the park, playing up a storm.  She ate an ice cream which I did not cover, and she was in the 120-150 range all afternoon.  At dinner, I thought I correctly bolused for her meal, but in retrospect, I didn't account for her exercise earlier.

I tried to drop her off at Tuesday night class at church, but she greatly resisted me.  I was torn on what to do, but finally went with my gut and kept her with me in the adult service.  As we walked to the sanctuary, I realized she was going Low, so I gave her a Juice...my one and only in my too small D-bag.  (EA unfortunately, will not use anything but juice to treat her lows...I've tried gluco-tabs & candies) Throughout the service, I kept checking her sensor, watching her BG rise to 115, so I felt she was ok.

She sat on my lap for the entire service until around 8:30 when she let out a little moan as her sensor alarmed at the same time.  I did a quick finger stick and about had a D-Mama heart attack to read 26, with a lot of insulin still on board.  AND, NO JUICE IN MY D-BAG!  I felt a surge of adrenaline and started to gather things up, when I stopped to double check the meter...maybe it said 62 and I read it wrong?  Unfortunately, it still said 26, so I carried my 5 year old down 3 flights of stairs with several bags, my entire body shaking.  In my mind, I was wondering if she was going to have seizures and what should I do, etc.   I saw a gentleman I knew, so I told him I needed his help to get juice.  We ran down another 3 flights of stairs to the cafe in the basement, but all the juices were locked up since the cafe was closed.  I remembered juice in the nearby toddler room, so he quickly got me two cups which EA downed along with some Peanut Butter crackers.  She finally came up to 130 via finger stick and started to behave like herself.

I however, am still struggling with 26 and feel a bit traumatized.  I know technology is not perfect, but I've come to rely on the sensor so much, it's shaken me a bit.  The realization that if I had left her in class, she would've had 2 lows with people who may not know what to do, with only ONE juice box, relying on a sensor that was NOT working.  I love you CGM, but I am a bit more wary of you now, Buddy.  EA does not tell me or others that she feels Low, and she doesn't really have a lot of symptoms that clue one in on her Lows, like she did when she was younger.  CGM has been a God-send for predicting her Lows...when it's accurate.  The other thought that went through my mind was: If I have been with her and Diabetes for 4 years and I missed it...how can I expect others who don't have the same experience to catch it?

So, we went slow the following two days and I slept as much as possible to try to recover.  My muscles were sore all over, and I assumed it was muscle tension from the adrenaline rush.  How do these hard Diabetic experiences affect you?

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...