Embracing Life & the Child with the Disease

Where Have We Been?

Well, I have repeatedly put off blogging regularly again because it’s been over two months since my last post (other than the one random one last week).  So I think I’ll just give you the run-down in short form . . . at least my short-form . . . may not be so short. 

My last post was on November 9 . . . my gosh, it’s almost been THREE months! 

  • NOVEMBER 16 was Ryan’s quarterly endo appointment.  Not so good.  Not good at all.  A1c was 8.8.  I look at that number and get sick to my stomach.  I can’t believe I even shared it.  I think I only shared it with one d-mom (thank God for her).  It sent me into sudden downward spiral of depression in dealing with d.  All I kept thinking is I’m working my rear-end off trying to get these numbers under control and I am not only failing, but I’m hurting my son!  A large part of the reason I quit blogging.  Just wallowing in self-pity.
  • DECEMBER 9 was our initial pump class.  Jay, Ryan and I went for six hours of training and we were to come home for our weekend of saline trial.  They did take an A1c to get a starting point, almost a month after that awful one that left me full of despair.  8.2.  That number was such a relief!  At least we were headed in the right direction.
  • DECEMBER 13 we returned to the hospital for our “GO LIVE” class.  Jason had to work and so it was just Ryan and me (at least at the beginning).  The first thing we did was take a stinkin’ test that I had to pass in order for Ryan to get the pump.  For those who know me, I am NOT a test-taker.  I stink at it.  Ryan took the test too.  I missed three.  He missed two. Then, I was so scared to put that first pod on him, attaching him to insulin and controlling it with a machine.  The CDE had to watch me fill the pod and affix it to his body.  My hands were shaking so badly, I had to stop and gather myself, take a deep breath and fight back tears.  But I did it.  Then as they were going over all the basics and all the intensive logs we were going to have to keep to figure basals, in walked my knight in shining armor.  Jay left work to come sit through the class with me.
  • DECEMBER 17 We celebrated Ryan’s dx anniversary.  It is hard to come up on that first year. Every month on the 17, I would get sick and my mind would go back to that devastating day, that hospital visit, that learning that it’s the rest of his life to live like this.  So we decided to put a positive spin on it all . . . we decided that in the Lederer household, December 17 is a holiday.  A day to celebrate Ryan’s life and the life/contribution of the whole Lederer family.  It was a real bonding experience. The boys didn’t go to school. Jason took off work early. We went to a movie and out to dinner and even had a cake to celebrate all that we’d accomplished in the year, how God protected Ryan in the beginning and has made a way for us to adjust to life this past year. I put a book together of letters from family, friends and church family praising Ryan for being so brave and Ethan and Aaron for the way they pitch in and support. D doesn’t JUST effect Ryan, it has meant a lifestyle change for us all. It really was a wonderful day and we’ll look forward to that family time every year. 
  • JANUARY 11 we made our way back to Children’s for a follow-up pump class.  We got a nice pat on the back and lots of praise for our hard work.  It was wonderful!  And the best part was the A1c they took – 7.4.  These numbers should not be that important, but it was so very encouraging to know we were doing something right in this new world of pumping!
  • JANUARY 12-16 Jason and I flew to Baltimore for his sister’s wedding . . . yes, we went ALONE!  We left the boys at home with my mom and guess what?  We ALL survived.  Ryan did great.  My mom did great.  I managed to come home with my fingernails still in tact.  Now I know I can be away from Ryan and d still behave, Jay and I might have lots more travel time and weekends together.  But that was a big hurdle to get over.  I left the reigns of d in someone else’s hands and we all did well.
  • FEBRUARY 3, today, his sugars are still doing very well.   He still loves the pump.  And we are experiencing our third consecutive “ice” day here in North Texas.  The weather is crazy.  And it’s killing a lot of the Super Bowl festivities trying to go on in the metroplex.  AND we are supposed to get snow tonight . . . hoping they are wrong! So, there you have it.  The basics of where we have been.  Christmas was awesome and not the nightmare I thought it would be to be learning the pump in the midst.  And life is easier and more flexible.  Sure, we’ve had a few hiccups along the way, but this is good and we are thankful.

Now, you all say a huge prayer for us tomorrow.  Meeting a new endo (changed because of location; still in the Children’s network, just closer to home) and get that wonderful A1c number again.  But no matter what it is, we are better and Ryan is okay . . . but it sure would be nice to have a little affirmation, wouldn’t it?

So, now that I’m caught up . . . expect to be seeing me on a regular basis again, eh?  Hold me to it!  It’s GREAT therapy!!!


Comments on: "Where Have We Been?" (10)

  1. How funny. I just thought of you this morning wondering how you’ve been.

  2. Thank you for sharing your thoughts. Having a good result with the pump is such a good relief. I know I cried with the first A1c after S was on the pump for a month. It is always a scary but good transition. Our children are amazing! By the way I am very glad you are comfortable enough to take a trip and still have d behave. We definitely need those breaks and often. My only guilt is that S doesn’t get the breaks but for now she is still young enough (5yrs old) to not manage all the craziness that we adults see.

  3. It’s so good to hear from you again! I’ve missed you. I know its hard to not feel like your job as a pancreas is being graded when you get your A1C but you have to pick yourself beck up again and keep pushing forward. I know all too well, we have been there and it’s not easy.

    I’m so glad to hear things are going well with the pod. The pump is so freeing isn’t it! Keep up the blogging,I love reading yours! ((Hugs))

  4. WAAAHOOO!!!! That 7.4% is a beauty 🙂 Prayers for more beautiful things tomorrow!

    So happy to hear things are going well! We celebrate 7/25 by having ice cream for lunch. It’s become our tradition and we love it.

    So happy to see you blogging again. Welcome back!

  5. Congrats Amy! Sounds like great news all around. I’ll be thinking of you tomorrow. I know it will go well. 🙂

  6. Ahhh…I have missed you Amy. Glad to hear that things are going well…and I will be thinking of you on your Endo appt. girl. You are doing right by you, by Ryan, by your family…pat yourself on the back. I heart you!!!!

  7. Great post hun. I love reading them and seeing the great comments from our newest friends!

  8. Kerry Cracknell said:

    Oh wow, you’ve had a busy few months! Good to see you back. You’re doing better than me – I started blogging late last year, did a few and then life got in the way again! I must revisit it. I might steal your idea here and do a quick run-through of what’s been going on 🙂 Anyway, I am SO glad Ryan is doing well on his pods. That is such wonderful news. And that improvement in his A1C is just brilliant! Well done all of you for achieving that. Now I’m going to catch up on your latest post that just popped up in my email! xxx

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