Embracing Life & the Child with the Disease

Endo Appointment Rescheduled

Well, as you know, our endo appointment was scheduled because this past Friday we got a lot of snow on top of the ice we’d had all week. 

We were supposed to see a new endo.  We live north of the big city and the hospital/clinic is at the southern most point of the city making the commute very stressful for me because too often our appointments are right in the middle of rush hour coming or going and even if not, I HATE driving through the heart of the city.  I was wanting to see an endo that sees patients a few days a month at a clinic closer to home.  Last Friday was our initial visit with him.  After I made the appointment with the new endo, I discovered a few things about my old one.  First, he is head of endocrinology at Children’s Medical.  Second, he is very heavy into diabetes research/cures/advancements.  Third, we were very fortunate to get him because he has almost gone completely away from patient care and we were just placed with him at dx.  But, most importantly, when we had a scare with my oldest son in another area of the endocrinology field and had lots of questions, Dr. W made a phone call to my husband and was awesome in explaining such a hard-to-understand issue we thought E was having (E is in the clear, by the way).  So, all in all, I was sort of second guessing my decision to go with a new endo.  But the new appointment was made and it was going to be more convenient . . . until . . . the new clinic did not call to reschedule the appointment like they said they would.  So when I called, they have me the run around just to get a new appointment set, not to mention the call was disconnected 5 times during the fiasco.  Yes, I did say FIVE times.  I asked what all the issue was about just rescheduling an appointment and she said it was because Dr. F was trying to re-schedule his appointments all day last Friday into a two-hour window this coming Friday.  WHAT?!?!?  Fast food style endo appointments. Isn’t that what we all want our D-care to be?  I.THINK.NOT.

I got off the phone, called Dr. W’s office and asked for an appointment fully expecting it to be two months or so to get in.  The scheduler said, “How about tomorrow at 3:40.”  SCORE.  Yep, I’ll take it.  I was frustrated to be driving downtown, but after getting over that, was somewhat comforted by going back to the familiar and to a great endo. 

And for the moment you have all been waiting for . . . the A1c.  Let’s let Ryan share.

That’s our best ever.  We had a 6.8 while he was still honeymooning.  But the pump has been a true Godsend.  Dr. W gave us lots of praise, talked directly to Ryan about how well he is going.  Then he sat back on his doctor stool with wheels and said, “The number won’t always be so good.”  I appreciated that.  He was kind of preparing us for the roller coaster rides that are inevitable.  He didn’t say it this time because I believe he was allowing us to revel in our job well done, he really prefers a child Ryan’s age to be between 7.0 and 7.5.  That would mean that we aren’t experiencing a lot of lows.  And to be honest, we had definitely had our share.  Which partially explains Ryan’s weight gain.  Yes, he has gained a little too much weight.  Dr. White warned us about that back in Sept when we were talking about the pump.  The freedom allows him to eat more, and he has.  But he also said that the more he is below 180, the less calories he is peeing out.  More control, means less peeing of sugar and calories.  And with a more controlled bg, the more likely the chances that when the sugar swings, like we know it does, it can go low.  And when we go low, we treat with sugar carbs.  The two together can easily equal Ryan’s weight gain.  Not enough to diet.  But enough to consider lower carb snacks.  I think that when spring hits and especially with summer, he’ll even out.  It’s just the timing of pumping and winter and controlled sugar.  I’m opting for a little belly and more glucose control. 

Jason went to the appointment today because I was nervous about driving because of our weather.  We had some more ice this morning.  Dr. W said we were his third patient for the day, and it was 3:40!  So, Jason asked him about research and the progress of a cure.  He was very honest about not seeing anything in the works right now that would be that cure.  He talked about mice trials and the advancements made, because progress is being made, but he made no cure promises.  He talked about prolonging the honeymoon for early onset dx (which Ryan is obviously not a candidate for).  He was very honest and real.  And I appreciated that.  But he talked most positively about technology and how quickly its progressing.  That by the time Ryan is an adult and caring for himself that the advancements would be great.  He gave us some food for thought.  Back when he was interning, 35 years ago, he was working with children dx’d with leukemia.  The survival rate then was somewhere along the lines of 50%.  Now, the survival rate is near 90%.  He said 15 years ago in endocrinology that he would have never recommended an insulin pump for Ryan – too new, made for adults, etc.   Now, insulin pumps for toddlers are just the norm.  He acknowledged that T1d is hard, a “pain in the tail” at best, but manageable and can be done successfully.  And he said all this in a most comforting, most encouraging manner.  He took the time to “get it” and tried to offer the brighter side of what we have no control over, what we cannot change.  And isn’t that a part of the process?  Accepting what we cannot change.  I.LOVE.HIM. 

So tonight I am thankful for a good A1c.  Sometimes we just need the encouragement realizing it is just a number, not a report card.  I am thankful for all the headache yesterday because it allowed me to keep the best endocrinologist for Ryan (and for this Momma Pancreas).  I am thankful that Jason was able to go with us for a change.  Simply, just thankful.


Comments on: "Endo Appointment Rescheduled" (8)

  1. Everything happens for a reason A!! I truly believe that. Way to go Ryan and Mama Pancreas. You are a great inspiration to many. (hugs)

  2. It sounds like the snow and thus canceled appointment may have been a blessing. I’m so happy to hear such good news after learning about the dark period you were in. I hope the light continues to shine and the very worst is all behind you.

    I find this weight gain theory interesting. I do not find this at all. We treat our share of lows, but Caleb’s weight has maintained it’s proper proportion. It’s something to think about. Hm.

  3. LOVE IT. I can just visualize this whole scene played out with your creative real words of TRUTH.
    Love it-praying- love you;happy tears today for you each one.

  4. God has a way of pointing us in the right direction! It sounds like you have a great dr., and even though it isn’t easy to get there, that is probably a minor detail! Love Ya!

  5. First off…Congrats on the A1C. I know the work that goes into it for you, for Ryan, and for your family. So, pat yourself on the back Amy.

    Your MD sounds down right “dreamy”!!! (In hot and heavy Endo sort of way) Like Lorraine stated…the snow was a blessing in disguise. Also…no weight gain on Joe either…I was thinking the same thing as Lo when I read that part. Is everything else ok? Or do you just think he is growing out and then up? My daughter does that a bit…

    Love to you!!!!

  6. Good endos are GOLD! I’m glad you have him! Congrats on the awesome-tastic A1C!

  7. Thanks for being happy for me and the encouraging words. They ALL mean so much!

    @Lorraine and Reyna regarding the weight gain . . .I think I’ll blog why I think what Dr. W was saying really does apply to Ryan and his situation. I probably could have written it better instead of making is sound like the “rule” for everyone, but I do think it makes great sense for Ryan and possibly explaining some weight gain, maybe not all of it, however. 😉

  8. awesome news! I think you are a wonderful mom and doing everything within your power to do. God will do the rest. Ryan is in His hands and what a great place to be! I am proud of all of you. Love, Momma L

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