Fun Friday - A great web find

I have just finished perusing a blog "liked" by a friend on Facebook.  Parenting. Illustrated with crappy pictures is so true and so funny. The pictures are crappy but they are real. She could be talking about my life. Do you have a favourite parenting blog? Is it funny or serious or both?

Parenting. Illustrated with crappy pictures made me truly laugh out loud not just LOL for the sake of it. I hope it can brighten your day too.

Admiring our differences - Diabetes Blog Week

I am a mum of D child. But I feel different in the PWD blogging world. Yes, I mum of a CWD (child with diabetes) but it is rare form. When my baby was diagnosed I felt very alone.

So I started out by reading blogs of other D-mums (& moms). But I didn't find any one in the same situation. Reading blogs usually leads to reading more blogs so...That led me to blogs of PWD. I have learnt so much. What it feels like to have a hypo or when you are HI. I can’t know that because I’m not one of you in the D world for myself. I found out ideas for hypo treatments, recipe ideas & supplies to make D life easier and brighter. I admire those that are coping with D by themselves, those that are there for their children, those who there for their D spouse or partner. So I have been admiring the differences. Nearly everyone in the DOC is in a different situation to me.

I have since found others who like us are dealing with a rare form of Diabetes. There are only just over a dozen D patients being treated orally for Neonatal Diabetes in Australia. It can make you feel quite on your own when you know there isn’t anybody else in your state (Queensland is pretty big) with the same condition. But it is great knowing that there are others in the DOC which get it because their child has the same rare diabetes and even though they are in the US we are connected. http://www.babieswithdiabetes.com/ We are both passionate about finding others who could benefit from this relatively new discovery. Our children were diagnosed young (very young) usually before 6 months of age, no autoimmune antibodies and low birth weight. They have a single DNA mutation which causes there body to not produce insulin.

I am still learning so much reading blogs and hopefully I can share a bit of our journey as well.

Letter writing day - Diabetes Blog Week

Dear Doctors/Paediatricians,
I am angry. I am mad. I want to scream at you for not seeing that my daughter was sick. But as today’s topic for Diabetes blog week is to write a letter I will do that instead. The rage I feel thinking about what could have happened to my little girl if blood tests hadn’t finally been done can consume me sometimes. But God is gracious and He kept her in His hand. He protected her when even I couldn’t.
I have wanted to write to you for a while now to tell you of my disappointment with the quality of care my daughter received while your patient (understatement). She was a sick little girl when we came to you but you were dismissive of my concerns. She is my fourth daughter and I knew something wasn’t right. I knew it in my heart. But it to convince doctors like you with a feeling. She was so much smaller than my other girls. It just wasn’t right.
Yes she did start to put on a little bit of weight after she started on the Neocate formula as well as breast feeding. But the gains were smalls and each week as I checked her weight at the health clinic it went up a bit, down a bit and back up a little. Each kg took months and months. She would sweat when she fed like she had run a marathon. Her heart would races. I wondered if there was something wrong with her heart. No.
I told you her number of feeds and that she was weeing a lot. No red flags for diabetes there!! No, she looked to happy to be really ill. I would just have to accept she was going to be much smaller than my other children. You treated me like I was paranoid and only referred me when I insisted on some action.
She had to go through a gastroscopy because maybe she wasn’t digesting her food properly. When I think of putting my 7 months old daughter through that I weep. But I had to try and get some answers. Dr Gastro who said it wasn't diabetes, since when did you specialise in endocrinology? Argh.
I know that some of you wanted to help, you had concerns but you didn't know what to look for. I know you cared.
It makes me so angry to think of my little girl suffering for months and months as we waited for appointments, waited to see if the formula would make a difference, waited for tests. How much longer would she have survived without DKA and worse? When my GP finally rang with the test results and said go to the hospital right now I wasn’t shocked I was relieved we had an answer. One I had searched and fought for 6 long months. I am angry but mostly disappointed that a simple finger prick could have saved so much time and given her health sooner.

I will be posting for Diabetes Blog Week

I have joined up with others over at Bitter-Sweet. I hope it will be an interesting week in Blogdom. I'm looking forward to reading other DOC (Diabetes Online Community) blogs during the upcoming week. We can learn so much from each other.

First diaversary - One year on from diagnosis

It is one year today since our family changed in an unexpected way. Last year DD#4 F was diagnosed with diabetes. After months of worrying, wondering and wandering (between doctors) we were given an answer to why our little one had "failed to thrive" as the doctors put it.

It turned out to not be a straight forward diagnosis of Type 1 but a very rare form of Monogenic diabetes. Neonatal Diabetes was her new diagnosis after genetic testing. Particularly as mutation of the Kir6.2 or KCNJ11 gene - R201H. We found out in September and I promptly started blogging away. Partly because I couldn't find much online about babies with diabetes when Miss F was initially diagnosed.

It's not a club I would haven't picked for Miss F (& our family) to join but I have met some some great people through this journey. I'm sure we will meet many more. The DOC (Diabetes Online Community) has been great ask questions and find out how others cope with different things. Those in real life have been equally important to us getting through this first year.

Thanks for you encouragement, support and prayers as we have made our way. I am thankful that God lightens the load as we share with others.

Join me for WEGO Health’s Webinar: Navigating Your Health Narrative!

I just registered for WEGO Health’s exciting new webinar and I wanted to share with everyone.
I think it might help me work out how to post better about Neonatal Diabetes and DD#4.


Here are the particulars:
What: Navigating Your Health Narrative Webinar
Who: Health Activist Panel with Lisa E, Erin B, Jenni P, and Amanda D
When: Thursday April 21st 8pm EST in the US (the webinar will last one hour)
 I haven't worked out the time here in Australia but I will look up the archived version.
Where: Sign up here and you’ll get all the details

The webinar is for anyone from seasoned bloggers to blog-readers who want to start their own blog. The webinar will cover the basics of blogging and include more advanced tips and tricks for promoting posts, managing your time, and establishing your blog “voice” and how to raise awareness about your condition through blogging.

By signing up you’ll also have a chance to ask specific questions for the Health Activist panel that will be answered during the live Q&A portion of the webinar. You’ll get access to the archived version of the webinar!