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fighting4lyli

Lyli's Story

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fighting4lyli

Last spring my (most would have referred to her as) overweight daughter started to do Girls on the Run and training for her first ever 5K which she ran in under and hour.  In the weeks that she was training I began to see amazing both changes in her.  She was slimming down, her legs began to tone and she herself began to eat healthier (not that she never made bad choices, but she ate less now) increased her water intake and began to look at the scale closely.  Summer was here and no more running, but she remained active in the pool and other summer fun, she seemed to drink all the time but it was summer so I didn't think twice about it.  She began to get obsessed with the scale numbers dropping which concerned me.  I felt at 9 years old she shouldn't be so concerned about numbers on a scale.  The weight was literally falling off of her at this point.  She went away for 2 weeks for the 4th of July and when she came back my aunts said something to me about the amount of water she was gulping down.  Lyli has always been a big drinker so I told him it was not a concern.  By the beginning of August I was growing worried.  Lyli was getting up during and after meals to use the restroom and I just knew that she had an eating disorder.  We started questioning her about it.  I would even get up and listen at the bathroom door when she would go in.  Finally the numbers on the scale had reached a point where I couldn't ignore it anymore.  She has lost over 40 lbs in less than 8 weeks.  I made an appointment with the doctor and b/c she technically wasn't sick things didn't happen as quickly most.  They sent us that day for non fasting bloodwork (Wednesday) on Friday she called me and stated that Lyli's glucose was at an "alarming level" and that we need to get a non fasting panel.  That Saturday morning bright and early we headed in.  It was all she could do to hold in that sugary sweet mess for an hour but we got it done and got home where she ate some breakfast and slept most of the day.  On Monday the doctor called with the results and I still to this day can only remember bits and pieces of it.  I remember her saying that Lyli SHOULD be sicker than she is...that we needed to pack and immediately head to A. I. Dupont Children's Hospital and plan for a lengthy stay.  I hung up the phone and cried.  At that point I kicked into Super Mom mode.  I was able to arrange everything for work and home (I have a 6 month old son at the time) all in the drive to pick up the baby, go home and pack for all of us, and then head to my MIL's house to drop off the baby and pick up Lyli.  We were at the hospital an hour later.  They came in to check her sugar and it was 534 and she watched as they stuck her for her IV.  They started to go over the lab results with me at that time which was all greek b/c I didn't even know what A1C was never mind that is should be 16.8. 

 

The next few day were filled with education boot camp.  By the next morning Lyli was taking her own sugars and drawing up her insulin and by that night she was giving herself the injections and she has ever since. In what should have been a 4 - 5 day stay we blew through in 2.5.  She was/is amazing.  There is a saying that I stand by now, "I never knew a hero until my daughter became one."  She does have her moments, and I am sure she will have her rebellion later in life, but she continues to rock this.

 

She started school 10 days after diagnosis.  Though I was terrified on what this was going to be for her she has continued her life as normal.  Just with a little extra effort.  She began her Fall season of Girls on the Run and will be running her 2nd 5K in 2 weeks.  She has only gained back a few pounds but that is all muscle mass that she lost.  At her 6 week follow up she had brought her A1C down from 16.8 to 8.1 and we are hoping for the 6's at our 3 month check up next month.  We have been battling hypoglycemia for the past week or so but she is fine with that...skittles is her choice of carb. :-)  The doctors say that this probably means she is coming out of her honeymoon period and once we have gotten to the year mark we can talk pump which she is very excited about. :-)

 

I am the only one that continues to struggle with this from time to time.  I get down on myself thinking I should have saw it sooner.  Maybe I could have done something.  When she has her out of control days I can't help but feel out of control too.  I wish so very hard that I could take this from her.  It is a mother's job to protect her child...I couldn't protect her from this and that is why I struggle.

 

Thanks for any that read this. 

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Stl-T2

Aww.  There's nothing you could have done really to spare her this.  Don't be hard on yourself.  You're lucky enough to have an awesome kid.  Just enjoy the person she's becoming.

 

Hugs!

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Java

pretty awesome for such a youngster to have such determination!

 

i totally understand your wanting to take it from her and bear it instead of her........i'm sure you are a great & supportive mama and she is fortunate to have you

:)

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janice21475

You have done a wonderful job documenting her introduction to Life with Diabetes. When she is older I believe she will cherish your keeping this record for her to study when she is a little further from it. I imagine right now she is absorbed in just living it, but some day she may have time for reflection.

 

You both are doing great!

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macksvicky

Wow what a trooper. There are grown adults that don't do nearly as well as she has done. Just be proud and enjoy your little girl :)

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fighting4lyli

Thank you all for your kind words.  I know there was nothing I could have done, just hard on myself as I am sure all parents are.  Lyli is a trooper and phenomenal kid.  She has really tackled this head on.  She does her carb counting and carb to insulin calculations (with supervision of course) basically all on her own.  She takes charge of educating people...including a gym teacher that was telling children that diabetes comes from being over weight...although she could have been more tactful in that situation, but what can I say...she has her mother's temper.  LOL!  She is truly amazing!  Thank you for reading Lyli's story and I look forward to getting to know you all of you. 

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JanetP

I think motherhood comes with huge loads of guilt.  I'm not an official mother, but my family has always called me "the Mother Hen".  Lord help me if I had had my own children.  What you feel is normal, you always want to protect the ones you love from pain and harm. Lyli is very fortunate to have such a concerned, supportive mother and as far as she goes, she is one tough little trooper.  Good for her! It sounds like she is not allowing anything to get in her way. YOu must have done a good job rasing her if that is her attitude.

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Tanikit

You did a good job - you organised everything and got her the care she needed with a baby to look after too and you will continue to get her (and her brother) care and to support them both for the rest of your life - that is what a mother does. Thanks for sharing her story. I was 12 when I was diagnosed and I don't think I ever realised how it must have been for my mother at the time and possibly still is some what even though I am an adult with two small girls of my own now. My Mom told me many years later that what she had thought a while after my diagnosis was: "No one will want to marry her and she will never have kids of her own."  Even as a type 1 diabetic myself I am not sure I would pick it up in my child as soon as I should. I am always watching and yet don't want to be paranoid or test them unnecessarily. I was ill for at least 3 months before anyone picked it up in me despite me telling the diabetic specialist in our town a month before diagnosis that I was drinking way too much. Its not an easy diagnosis to make.

 

Your daughter sounds like she is doing very well. Give her a hug and let her express her feelings - sometimes being a trooper is not always possible - some days are hard and some are easy - its a life long diagnosis, so take it each day as it comes and give yourself time to express your own feelings too because for you some days will be hard and some days easier :)  

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