Saturday, February 27, 2010

A Long Post Short

Since I am so behind in my posts I am going to try and keep this long post short but informative.

1) I had the pleasure of hosting a play date last Friday with Joanne and Jessica. Joanne and I were super excited to meet Jessica, L and P (I don't think Jessica posts her kiddo's names in her blog so I will use their initials here). They did not disappoint! Jessica is just as wonderful as she seems on her blog and on FB! L and P are the cutest and sweetest children you could meet. L is wise beyond his years! My eyes filled with tears as he told me all about his diabetes and how happy he was to meet Elise and Nate. Just sitting there chatting with this 3-year old boy made me realize how strong and resilient our T1 children really are. It was fun and insightful being around a little one that could verbalize his T1 feelings to me.

Ms. Elise did not disappoint either. She is always so delightful to be around. I often forget that she is only 2 years old. She is also wise beyond her years and so very sweet that I just want to hug her all of the time! She thinks I'm a little nutty!

Elise, Sophie, Nate and L played beautifully together. I cannot wait to get them all together again. Good times! 

2) OmniPod Training was very educational and I feel totally ready to start this next part of our D journey. I am so blessed that Jessica and I are going down this path together.  I honestly do not think I could handle this huge change without Jessica and all of the other supportive D Moms cheering me on.  Jim is still out of town so I am pretty much doing this on my own.  My mom is attending the training with me but she doesn't live with us so it will be me doing all of the nighttime checks!  I'm already exhausted just thinking about it.

3) BLOG TROUBLE! While we were wrapping up the pump training class our endo, Dr. T stopped by to say hello and discuss my request to switch Nate from H to N. She agreed, we got our new Rx, and all went well with that part of the visit.  Before we got out the door she mentioned that she had been reading my blog and had some concerns.  Me - - WHAAAAT?  Can you imagine the look on my face?  Priceless, I'm sure.  
Here are the bullet points of the conversation:

  • In the post The Hard Stuff she was concerned about Nate's medical information being in a public forum.  Although I did not say it, I thought to myself that if anyone wanted to steal Nate's medical problems I'm quite sure they would bring them right back!
  • She was not too thrilled that I had published an email from a CDE in A Good Response but we both agreed -- my email, my property.  I decided to remove the signature line from the email for privacy.
  • Dr. T also thought I should have asked permission to post pictures from our visit that included medical staff. I had not really thought about that before posting pictures of CDE, Kim teaching me how to do Nate's site insertions. 
  • Since we were chatting about things that were not making us happy I decided to mention that I honestly thought it would be easier to get in to the White House and visit the president than to get an appointment with her.  The funny thing about this was that she AGREED!  She said they are hoping to expand the staff but in the meantime we would just have to wait.  
On the way home from the hospital I could not stop thinking about all of Dr. T's comments.  Although I have a pretty tough exterior I am pretty insecure and was fretting about the entire situation.  So, when I got home that afternoon I sent an email to the Diabetes Educators email address (this is the email address where I communicate with all of the CDEs).

Here is what I wrote:

Hi Angie,

Thank you for the great class today.  I look forward to working with you and the others during this transition onto the pump. Will you please send me the cover sheet and intensive log that I will need for pump start?   Thanks!

Beth,

I want to apologize for publishing your name on my blog.  I removed it today.  I hope I did not offend you in any way by publishing your email and your name.  If so, I sincerely apologize.

Kim,

The pictures we took of Nate’s site insertion include some with you in the shot.  I am happy to take them down if you do not want them on our family website.  I also would like to apologize to you if your pictures on our site are not ok.  I should have asked you 1st - - - I just didn’t think.  If you look at our family site which is partially private and partially public you will see I photograph everything!!  


I would never want to offend anyone.  I blog about Nate, his diabetes, and my frustrations with diabetes; it is not meant to be hurtful or mean-spirited in any way.  It is just how I feel at any given moment.  As you all may or may not know it is very difficult to have a wee one with an illness and often frustrating when dealing with a large hospital such as Children’s Dallas.   

I think the pump training has been wonderful and would like to thank everyone that has called, emailed and helped me through the beginning of this transition.  I look forward to working with you all in the future.

I would have sent this to each of you privately if I had individual email addresses but since I do not --- I hope this is ok.

Thank you -


and here is the email response I got in return:

Hi Laura, 
 
I'm so glad you enjoyed the pump class today and 
I truly hope the pump will help Nate's blood sugars.
We want to let you know that you have not offended any 
of usin any way and we completely understand why you
have a blog.We are definitely here for you and want 
to fully collaborate as a team through Nate's diabetes
journey. You are more than welcome to keep the pictures
and email on your blog. Please continue to release your 
joys and frustrations on your blog but for confidentiality 
to not include last names.  We truly care for you, Nate
and your family and have enjoyed working with you. 
We look forward to this next journey of pumping, and 
again let us know what we can do to help. 
 
Your Diabetes Educators and Friends


Ok, so you can call me a dork but this email made me so happy.  This is what I have wanted all along.  I have longed for the folk's over there to know me, to know Nate and to feel like we are on the same team.  Team Super Nate!!  I am hoping that going forward we can all work together for Nate's best interest.



Will post on Monday about Pump Start Day - - - with pictures!








11 comments:

Hallie said...

Yay Laura! It's a wonderful feeling to have a team of nurses, CDE's, and endos behind you! You deserve to be treated like more than a number- and if your blog helped in this at all, HOORAY!!! Keep blogging and sharing the good, the bad, and the ugly with us!

I'm so happy for you and Nate and your family to begin this new chapter of living with a pump. (side note- when I first typed this it said pimp instead of pump and that made me laugh!). It doesn't magically fix everything- there are still good times and bad- but it is soooooo much better than MDI! I hope you love it as much as we do!

Love the lunch you had, too! What a special bond our kids have! I'm so jealous! I hope that one day that playdate will include me and Avery!

Tracy said...

So glad you had a fun play date! And that you get to go through the pump start up with someone else using the same pump! Yeah!

I like the email you sent and the response you got from the CDE's! And you are definitely NOT a dork! I would be happy getting an email like that too!

Can't wait to read about and see pictures of pump start up on Monday! :)

Meri said...

Hello rock star mom! I am so proud of you...starting the pump...and without your hubby at home! You are going to do great. Easy peasy lemon squeezy, right? :)

How wonderful it is that you gals can get together. I wish I had that years ago. It makes my heart smile for all of you!

Good luck next week!!!

Hallie: Pimp? Pimp My Ride is one of my hubby's favorite shows. Maybe we can pitch a new reality show...Pump My Kid. (That sounds awful! But I'm not deleting it! I feel rebellious tonight!)

phonelady said...

Okay Laura I dont get a good feeling from this dr you use just by the words she used . I think the more appropriate word would be hyper anal intensive LOL !!! I have never seen or heard of a dr being so uptight about a blog and is her face in any of the blog NO !!! so one asks to ask theirselves why is she so upset by something that clearly did not do any harm . Oh and btw that is part of the hypoctatic oath if I am not mistaken . first physician do no harm . My goodness when i read your blog the first thing that came to my mind is what is this dr so worried about ?anyway just my two cents on this blog sorry if I offended anyone.

Jill said...

YAYYYYYY! I'm so thankful for CDE's that stand behind you :) THANK YOU Children's Dallas CDE's!! Being able to express your feelings in your blog is the whole purpose for it, good & bad. It's nice that others see it for that! It's also wonderful to be able to share pics...can you imagine our blogs with no pics? We'd never get the full effect of "family" ;) Can't wait to see more pics!!!

Joanne said...

I am so impressed by you, Laura... You did a great job standing up for yourself and Nate! And I love how you also emailed the CDEs, and their response! Bravo, Momma, bravo!

I too had a great time with you guys and was sad I had to take off early. We need to do it again, soon! Elise keeps talking about Sophie, Nate and Liam.

And I just need to say this again Laura... you are a ROCK STAR! I can't imagine doing everything myself, yet you are and doing an amazing job. I am in awe, sista!

Jessica said...

So blogger at my comment, but long story short- so stoked we get to do this together, even more stoked that I met you and Joanne and feel so much more connected and supported than I did a couple of weeks ago, and am so proud of you for standing up for Nate and not cowering when your doctor confronted you. Great email response from them! I hope things stay as good as they are with the CDE's.

Hallie- your pimp comment was all too appropriate, since our local omnipod rep (LOVE her) told my son to "pimp his pod" with the stickers. Ha ha! I'm waiting for that one to bust out at preschool. Too bad Nate wasn't there to learn a new word, huh Laura? :D

Heidi / Jack's Pack said...

Hi Laura,
I'm Heidi. My six-year-old son has T1D, too. I just read your post and could totally relate to your experience with Dr.T. I recently wrote something on my blog about the administrators at my son's school. Previously unbeknownst to me, a teacher at the school reads my blog, and when she saw my post regarding the administrators, she showed it to them. My husband and I were then called into the assistant principal's office for a private meeting, during which he slammed me for writing about the school, even though I have never once mentioned the school name or the administrators' names. It was one of the most awkward moments of my life! I can imagine how you felt talking to Nate's doctor. Kudos to you for following up with an email, clearing the air and making the connection you wanted to make with the CDEs! You are so not a dork. I would have appreciated that reply too. Good luck pumping!


Hallie and Meri, Pimp and Pump My Kid--ha ha! :)

Shamae said...

Hey chic! So great play date! That is awesome!! I'd love to see some pics!

Second, I think I would be totally bugged if someone commented on the content on my blog. I just would. Weird!! Glad you got it all worked out though! I know our CDEs read my blog. They've never said anything about it!

2 Green Eyed Girls said...

I'm so glad you ladies all got together with the kiddos - there is something very comforting being with other parents that understand the way we watch our kids. I think it's great that you've all found each other! We have Dr. T as well, and I have been more outspoken with her about my frustrations with what goes on there. I doubt she's read my blog, but now I wonder. Takes a certain set of you know whats to mention it to you though...WOW. Glad you handled it the way you did.

Diabetes Super MOM said...

You are just too cute!! I love your blogging..

I am glad your trying the pump out, and not getting frustrated just yet.. it takes time.

That makes me feel so much better they emailed you back and good responses too.
Keep up the good work!