ID for our Pump Bag

I recently learned the importance of keeping ID in EA's Pump Bag.  For some time, it's been in the back of my mind that I need to put our contact info in there, but since it's always with us, it didn't seem very important.  I mean, the bag is our life line...I am more conscious of it than my own purse!

The girls and I went into Manhattan to the Central Park zoo with a friend, and ended the day with dinner at Korea Town.  It was a long day and we were all exhausted and ready to get home.  We had schlepped quite a few bags all over the city and our dear friend graciously carried my heavy backpack for most of the day, which included EA's Diabetes supply bag.  We parted ways at the train station at Herald Square and I took back the back pack.  When our train finally came, we boarded and sat down.  Just as the doors were closing, my oldest daughter, EL jumped up and started banging on the train doors and yelling, "our bag, our bag!"  I jumped up in time to see our backpack still sitting on the train platform seat, while our train quickly gained speed.  Cue wailing children in a crowded train hysterical over the loss of their new summer sandals and EA's D-bag.  I was glad I had my morning Bible reading and prayer time, because I know God's grace helped me to stay calm during the next 2 hours.

We crossed over to the uptown train at the next stop, went back to the station, hoping the bag was still there.  However, I knew it might not be there, since it would look like a suspicious bag and be turned in to police, or it would be stolen.  The girls had calmed down, but when they realized the bag wasn't there, they started to wail again.  For my oldest, I think it was a taste of reality that not everyone does what is right and bad things do and can happen.  We found two very big and gruff looking NY Police Officers who were amazingly kind and helpful to us.  They spent over 30 minutes helping us look over the platform, in garbage cans for discarded items and tracking down the cleaning crew.  During this time, the children continued to cry and people slowed down to stare at us as we stood speaking with the policemen.  This might have been the only time I was glad EA had high Blood Glucose, because I had no testing supplies, no juice, sugar and was an hour away from home.  I was very very glad she was wearing the Dexcom on her body, yet another reason I'm glad I don't tuck it into my purse or backpack.

I did a detailed lost and found report with the NY transit, but the only identifying item in our backpack and Diabetes supply bag was the newest copy of Diabetes Forecast.  So, I am in the process of replacing the supplies in the bag and the bag itself and I will have a nice big ID within that new bag.  My children have calmed down and gotten over their aversion to riding the train.  Despite the inconvenience of losing the bag and supplies and shoes, it could have been much worse.  EL could have dashed out of the train and been separated from us or she could have been harmed in the train doors.  My purse, wallet and ID could have been stolen, or EA's BG dropped without sugar and glucagon to bring it up.  We are thankful for the blessings in the midst of the difficult night, including the kindly NY Police officers.  In the meantime, we continue to discuss ways to be safe in NYC and how to be careful with people but also kind and helpful to those who need help.  I now carry a spare juice in my purse should we be separated from our D-bag.

How do you prepare for emergency situations?  Here's to a safe summer for all D-families!  :)

Jessica

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