Growing Up...

It's been a long time since I last posted due to EA starting 2nd grade and a number of other family health concerns that have absorbed my time and energy.  This year I go to EA's school twice a day for a 10am BG check and another at lunch time.  I bring lunches to EA and her sister EL who appreciates the food being hot and fresh.  I do a BG check for EA, check the sensor and any trending arrows, then wait for her eat lunch and give a quick bolus.  We've worked out a routine for when her class goes outside after lunch.  If it's for about 15 minutes, I will give a smaller bolus to allow for the exercise.  When she is on the low side, I like to do a dual wave bolus, with 0% up front, and 100% 30 minutes later, or 60 minutes later, depending on the situation.  She carries her diabetes bag with her, and if Dexcom beeps low, she will tell the teacher and drink a juice box.

When the weather is very nice and the teacher plans to take the class to the park, I schedule my day so I can accompany the class.  I feel it's a safer situation for the class since I'm a second adult accompanying the class of 21 about 10 blocks through traffic lights and into the big Park nearby.  When EA is at the head of the line and I'm at the end of the line, and she feels low, or beeps low, she will raise her hand so I can see her and assist her.  At times I feel grumbly about lost time in my day, but I usually end up feeling better for the fresh air, sunshine and exercise.  I have the opportunity to see the children grow, and be a part of their 2nd grade lives.  They show me their loose teeth, or tell me about their families or whatever is on their mind as we walk over.  I point out squirrels and falling leaves, or new buds and I always feel thankful for the time.

Recently, I felt that I needed to start teaching EA more about her diabetes care.  Because we've had other more pressing matters than her Diabetes care, it's been in the back seat.  However, things have been stabilizing and I felt we should start afresh.  Two days later EA asked if she was allowed to go on sleepovers and how her friend wanted her to have a sleep-over in another part of the city (1.5 hours away by train!).  GULP!  I kept my face steady as I told her, we'd have to figure something out...maybe I could sleep over also!  Of course, I was half joking, but EA burst into tears and told me "It's not fair, I never get to go anywhere without you! Why can't I go anywhere alone?"  My heart ached, but I knew this was also a good sign of growing up and a greater desire for independence.  I've read a number of other D-Parents's accounts of how they  have dealt with sleepovers and how they have handled greater independence and Diabetes...so, I felt more prepared.  (I think).

I explained that I know it's not fair, and I wish I didn't have to follow her around, but that thus far, she hasn't been interested in doing her own BG check.  However, if she was interested, we could start to practice and create a plan.  She was very eager, so she did her first BG check last night, and against this morning and at the 10am BG check.  At the 10am check, I asked her if she felt she needed to do anything based on her numbers, the Dexcom trend arrows and insulin on board, and she said she thought she should have an applesauce.  Exactly what I would've done!  :)  I am writing out carb counts for the foods she eats, and for today's lunch, she added them up herself and we walked through my thought process before giving the bolus.

It's going to be a process and it's going to take time, but I'm excited to see my little girl growing into some of her D-responsibilities.  Not so much because I will have less to do, but because she will have greater freedom to do things without me sometimes, and to feel more normal.  I made clear to her though that I want her to tell me if she feels tired or if she needs a break.  The last thing I want to do is to burn her out before the tumultuous preteen and teen years.

How have you handled your child's growing independence and Diabetes?  I'm all ears!

Have a great day!

Jessica

Book Review: Empowering Your Child Who Has Special Needs

Some time ago I discovered the book "Empowering Your Child Who Has Special Needs" by Debbie Salter Goodwin.  Since I was blessed with the great ideas and resources within the book, I wanted to share about them in this post.  


The Chapters are as follows:

1. Something to Live With
2. Something to Grieve
3. Balancing Family Needs
4. Surviving School
5. Negotiating the Medical Maze
6. Finding Help
7. Empowering Prayer
8. Flying Lessons

Also included in the Appendix:

• How to Start a Faith Based Support Group
• Tips for Running a Faith-Based Support Group
• Starting a Special-Needs Ministry
• Ways to Prepare Your Church for a Special Needs Ministry

There are many great ideas and prayer points for your child in this book, but a few that struck me are how the author discussed the Diagnosis (beginning and after the diagnosis) and the strategies she used for empowering her own special needs child.  She discusses the grief spiral which I found to be the perfect example for explaining how I felt at certain milestones that were different for me than for other parents.   In the grief spiral, you continue to have moments where you are touching on the grief of living with a chronic illness, instead of a straight line moving away from the grief.  She talks about parents' feelings of loss, how to move through anger and guilt and how to help our children process their own grief.  

I have always been especially sensitive to the effect of chronic illness on the healthy sibling/s, so I was glad to see a whole chapter on balancing family needs.  Ms. Goodwin gives great ideas on how to have family balance and how to help the healthy sibling/s.  She notes what siblings wish their parents knew and gives ideas for how to nurture positive siblings relationships.  She also addresses the needs of single parents caring for special-needs children.

Although this book doesn't deal with Diabetes specifically, I feel the ideas and strategies will help anyone who has a child with a chronic illness.

You can find the book for sale at Ms. Goodwin's website and learn more about her work.  http://www.debbiegoodwin.net/

Happy reading!

Jessica

Rest Ministries: Chronic Illness & Pain Support

I recently discovered an excellent online resource for those with Chronic Illness and Pain.  As far as I know, it's the only online support out there with a Christian viewpoint.  I've since recommended it to families, friends, and our Church Staff.  The founder, Lisa Cohen, was diagnosed with Rheumatoid Arthritis at the age of 24 but was unable to locate the Christian support to help her along the unexpected path of chronic illness.  Rest Ministries, Inc. was founded in 1996 and has grown greatly, reaching over 80,000 people monthly via the website.

There's a tremendous amount of resources available:

• Articles
• Devotionals
• Info on Pain management and illnesses
• Info on Relationships
• Books on how to support loved ones with chronic illness, how to start a chronic illness support group
• Online communities
• and More!!

Check it out here: http://restministries.com

Be encouraged today and love on someone who may need your hug or kind word today.

Jessica

Gymnastic Kinks

I took the girls to their combination Gymnastics/Dance class on our usual Friday.  I gave EA her snack before hand, plus half correction for it, which seems to work pretty well for us.  She came out of the 60 minute gym class with a BG of 300, which is unusual for her.  Hmmm...I gave her a correction and got everyone ready to leave.  We met my husband for dinner at a nearby Japanese restaurant, which was a treat given our recently way-too-busy schedule.  Her Dexcom alarmed that she was spiking quickly and I thought of the applesauce she begged for after gym class and thought I didn't cover it correctly.  I checked her while we ordered our food and she was about 400 BG.  

At this point, big alarms were going off in my mind and I went into emergency mode.  By the time our food came, she was 450 and I told everyone to eat quickly so we could head home and figure things out.  In retrospect, I wish I had just changed out her site, but I thought perhaps her insulin was bad and needed to be replaced.  Everyone else ate their food and seemed to enjoy it, but my stomach was in knots as I planned how to keep her out of the hospital.  By the time we got her home, her BG was 598.  Thankfully, she didn't have ketones.

I did the fastest site change ever and found this...

The only thing I can think of that may have caused this is her hour of gymnastics, especially the High Bars, which require her to press her belly (and site) against the High Bars.  I can't remember the last time we've had trouble with a site and kinking.  All of my corrections were not absorbed into her body due to the kink.

My husband was a great help during the whole process, comforting her while I played nurse.  Recently, she's decided she really likes him to read a story while I do the site change, so that night, she got several books while I changed her, checked for ketones and checked Blood Glucose.  

Thankfully, all's well that ends well.  She came down nicely through the night and seemed to feel fine the next morning.   I've now added a "Gymnastics Kinking" to my ever expanding list of items to troubleshoot for when we have those crazy High BGs.  I'm thankful we don't have them often.

My sweet ballerina with Rufus the JDRF bear.

Have a happy and healthy week!

Jessica

5 years with Diabetes: Counting Blessings~

     Today is EA's 5th Anniversary since her Diabetes Diagnosis.  We grapple with should we celebrate her Diaversary or not.  I want to honor her hard work and courage throughout the year in some way, but my husband points out that she doesn't even remember not having Diabetes and it may be more sad to have to explain that there used to be a time when she didn't have D.  So, I think tonight we will celebrate with her favorite cupcakes.  We will celebrate life, and God's grace and provision to us and the joy of having each other.  

After losing her first baby tooth!

     I honor her for submitting herself to the daily finger and toe pricks and not complaining even when I have to squeeze and squeeze for a big drop of blood.  I admire her for how she lays down for site changes in her belly and how she can express that she's now more afraid of the site change than the Dexcom sensor change.  I admire that even though she is afraid and sometimes wants to count to a very high number until she's "ready", she always squeezes her eyes shut and says that final number, knowing what is coming.  To me, that is big courage in a small body.  I am thankful for how she is thriving in 1st grade, having her own little friends, reading up a storm, and excelling in gymnastics and dance.

Our pretty little ballerina

     I am thankful for big sister who is always ready to grab a juice box, or tissue, or some other D task without complaining.  I am thankful that she usually "gets" what is needed for EA, that she will often hold her question or story while I deal with an emergency BG check or treat a low.  I love that she will read to EA during a site change to distract her mind, and I love the way they snuggle in the early morning in EA's bed.  I hope their sister friendship will continue to grow in love and depth through the years.

Jumping in leaves this past Fall.

     I love the way everyone plays along with Pumpy the Pump Monkey's funny routines and antics, including my dear hubby.   By the way, Pumpy really loves Korean banana milk to treat his Lows. :)

I am thankful for my husband who works tirelessly to support our family and provide us with our health insurance.  I am thankful for how his relationship with EA has grown in the past year as she has become more confident and less overly attached to Mama.  I love listening to them reading the latest "if you give a mouse..." book, and how EA cackles at the funny pictures.  I love that he can make a site change easier for her, and his hug afterwards makes it much better.

EA as teacher, Daddy as student in a children's museum.

Counting my blessings today...

Jessica

Sensor bribery

It's been a very busy week, but I wanted to blog about this in case other D-parents encounter this very strange parenting dilemma.  I never would've imagined I would need to prepare my sweet EA for this situation, which thankfully, turned out well.

EA has a sweet seatmate in her 1st grade class who has become her good friend.  This little girl is always peering over EA's shoulder while I check EA's BG, enter numbers into the sensor and deliver boluses.  For a few days in a row, EA brought home little trinkets as gifts from her seatmate, which made me suspicious.

"EA, are you ASKING for gifts?  I sure hope not!"

"No, Mom.  But my friend says I have to keep letting her touch my sensor if I want to keep getting gifts.  I want to keep getting gifts, so I taught her what to do and she checks it for me."

Say, HUH???  This alarmed me for two reasons:

1.  I don't want other children touching EA's D-equipment because it's expensive and they could possibly give her a Bolus.  EA agreed that other kids probably think her pump and sensor are a toy or video game, so they want to touch it.  Thankfully, no one has yet touched her pump.  I reiterated to EA that no one but she, her Teacher and I should be touching the sensor and the pump.  She agreed and told her little friend, who has complied.

2.  I don't want my children EVER to feel they have to do anything for gifts, money, candy, etc.  I explained very carefully to both girls that they should always do things that are good and right and that they WANT to do.  They should never do anything because someone is giving them a gift, etc.

Thankfully, EA told her seatmate who no longer touches the sensor.  She does look at it and read it when it beeps, but EA is the one to punch buttons.  I wanted to be careful not to make too big of a deal about it, so kids wouldn't back away.  There have been a number of times her friends have heard the sensor beeping, heard EA tell them that she's going low, and then the friend told the Teacher.  I love this and am very thankful for that, so I didn't want to crush that helpful attitude.

May God give us all wisdom for these parenting dilemmas that are complicated by Diabetes! It's worth the extra steps to keep everyone happy, healthy and well-adjusted.

Take care!

Jessica

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.