Tuesday, June 22, 2010

One year ... a different kind of anniversary

And not one that we will be celebrating.  I wonder if anyone other than me will even remember this date.  One year ago today, our world was changed in ways that I couldn't have anticipated.  Joshua was diagnosed with Type 1 Diabetes.  This photo was as we entered the hospital.



I didn't know much about Type 1 prior to this date.  I had suspected that he had this disease as it fit the symptoms he was displaying.  It became very clear while we were on vacation that something was just not right.  Here are some of the common symptoms  that Joshua displayed. 

*frequent urination (sometimes every 15 minutes)

*excessive hunger - food is not getting through so they are literally starving

*mood swings - I really only noticed this in hindsight.   I've heard this from a lot of others too!

Those are the biggest ones.  He didn't feel well.  He threw up one night at the beach (too much sugar at his brother's birthday party).  I called the doctor while we were at the beach and made an appointment for the following Monday asking them to check for diabetes.  I was concerned, but truly had no idea.  I had no idea how hard this would be.  A friend told me the same thing after visiting.  She told me that she heard what life was like, but really had no idea how much time and energy it took to deal with it. 

More than 90% of diabetics are Type 2.  Most of the information that people have or know about diabetes is true for Type 2.  Yes, there are some similarities, but there are many differences.  Type 1 used to be called Juvenile Diabetes.  Sometimes I wish it still were as it distinguishes the two kinds a bit more.  Here are some facts about Type 1.

*Type 1 does not occur because of anything you have done.  It is an autoimmune disease.  Something goes wrong in the body and it starts attacking the pancreas.  Usually by the time of symptoms, there has been damage to this organ.  Eventually it will stop working altogether.

*In order to live, a person with Type 1 needs insulin.  This is not a crutch, but is giving the body what it needs to be able to function.  Left untreated, a person with Type 1 will die.  It still happens - even in our country.

*In the early part of the disease, most people have a "honeymoon".  What a name.  This means that the body is still producing some insulin.  The needs for insulin during the honeymoon period are small and some may not need it at all.    Joshua is still in this period.

Though the last few days have given me reason to wonder if he may be coming to the end of that period.  I expected our time at the beach to have more lows.  When we were there last fall, it happened often.  There weren't as many this time and maybe being on the pump helped.  What I started seeing though were unexplained highs - mostly in the mid-morning.  We could typically get him back down though.

On Saturday, the day we left the beach, we tested mid-morning and saw something we had never seen before.  No number on his meter.  Just words.  High Glucose.  His number was over 600!  Just like when he was diagnosed.  I have no idea how this happened.  :(  We fought most of the afternoon to get his numbers back down to normal.  I seriously thought we might be headed back to the hospital.  I'm thankful we didn't have to.

Yesterday, he again had a high mid-morning number.  Then two hours later.  He was 47!  Not good.  It also makes me wonder what is going on with him.  I talked with an endo and we have a plan for the next couple of days.  I'm trying to troubleshoot and figure out where there might be a problem.  As someone said, it could be so many things ... hormones, activity level, stress, foods, phase of the moon, change in tides, etc.  (Just kidding about the moon - it is just an expression that sometimes it just can't be figured out.)

Would you pray for wisdom for us as we try to sort out how to handle all of this?  The plans I was to try are not working and I'm calling our endocrinologist first thing in the morning.  I had to give him a shot tonight.  He didn't say anything, but wasn't thrilled about it.  I asked him later how it was and he told me it hurt.  I hate hurting my kids.  I know that he would hurt much worse without it though.  I'm just ready to get him back in a good place with his numbers.  It really affects him to have such bad high numbers and I know too that it can affect his health.

So, as we mark a year of diabetes, what can I find to be thankful for?  I know I'm to consider it all joy when I face trials.  (Isn't it harder though when the trial is that of a child?) 

I'm thankful that his disease was caught early. 

I'm thankful that none of his lows have put him in a coma.  (Something he heard a medical person say one time and still scares him.)

I'm thankful for the excellent care he has received!

I'm thankful that with insulin he can live and do most things that he wants to do!

I'm thankful for the pump which has given him *and* me a lot more freedom.

I'm thankful for JDRF and the advances that are continually being made.  We do hope that one day there will be a cure!

I'm thankful that God can use this to help us be more sensitive to others.  To be more understanding of physical difficulties.

I'm thankful that we are all having to learn to eat in more healthy ways.  Still something that we need to work on!

I'm thankful for a brave little boy who has learned to deal with far more than any little boy should have to. 

I'm thankful that we serve a loving God.

I'm thankful that one day his body will be healed!

I'm thankful for this amazing little boy.



Blessings

Leslie

12 comments:

  1. If you need a friend to talk to about diabetes, I'm here for ya! I'm also diabetic, and am considered to be brittle (extreme highs and lows for no apparent reason). I'm Type I or Type II depending on who you talk to since I was diagnosed initially when I was pregnant, but am now insulin dependent with complications. The consensus was that I was an undiagnosed diabetic long before they caught it. It can be a scary disease and sometimes it helps just to chat with someone about it. Thoughts and prayers are with you! And just so you know...one of my diabetic buddies just finished 30 marathons before he was 30 and did an ultramarathon across the Sahara. His name is Soren Lilleore, he works for Novo Nordisk in Denmark, is a Type I diabetic, and he runs like this to let people know that diabetes doesn't have to limit them. Here's a video interview which might help encourage you...http://www.youtube.com/watch?v=BkcyFzx_5mc&feature=related

    God bless you on this journey!

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  2. Oh, Leslie, what a year you've had! I pray that you'll be able to figure out how to get his numbers back to normal.

    And what a blessing that insulin is available!

    May you be filled with peace.

    Annie Kate

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  3. I can't believe it has already been a year since he was diagnosed. For most of us that year has flown by, not sure if you would say the same though. I am so sorry that he is still having so many problems trying to regulate his blood sugar. We have a family in our support group that has a daughter with this disease, but I believe she has Type 2 and she has a pump also. I see all the things that her mother has to do and worry about and she is regulated. I can only imagine what you guys go through on a daily basis. You will be in my prayers.
    Blessings
    Diane

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  4. My dear friend, what a trial you are going through. I know this is so hard. We keep praying for your family. Thanks for mentioning the ear plugs. I am going to try and look those up.
    Blessings,
    Dawn

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  5. Sweet friend, I will acknowledge this day with prayer for you and your precious son.

    Love you Leslie.

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  6. I want to let you know that I will pray for your son, wise choices, and knowledgable physicians.
    Almost one year ago my cousin's 8yr old was diagnosed as well and since then I have really been paying attention to the request of the juvenile diabetes foundation. I keep hearing the the background that they really do bellieve a cure is coming soon. I will pray for that cure to come soon for him as well.
    Praise Be To God that you are there to support him.

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  7. Praying for you! He's looking a lot healthier in that final photo! You're doing good Leslie.

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  8. No words......just sending hugs and prayers for you both!!

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  9. You do have much for which to be thankful! Praying for you as you figure out what's up with the recent numbers!

    Michele

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  10. Wow, I haven't been on your blog in a month or so and I will say I am going to pray for your little one and you, My son has PKU a disease that has to monitored all around food all of his life, so I do understand the huge burden!! I enjoyed reading your blog post! Thanks so much!! Kayla

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  11. I'm praying for you and for your sweet son ((hugs))

    Kristin

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  12. Great stuff here. I seem to be constantly in search of thought provoking posts on exactly this subject and you have "delivered". Thanks very much.

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