Monday, August 29, 2011

A bit behind

I haven't posted for a while. Sorry for the silence. Any opportunities I have had I haven't been able to get my thoughts together.

I'll go back to where I left off. Jelly Beans - Diabetes Camp. It was great. All the girls had a great time. They made friends and hung out. Miss C even started swapping clothes with her new friends! She is not even 8yo yet. I am glad that they had a such good time. They spent a bit of time fascinated by who had diabetes and who didn't and then it wasn't even an issue. Miss E who turned 4 yo last week has said to me a few times since camp "Some of the kids had pumps."  I was worried that DH wouldn't enjoy camp but he met lots of other parents and learned a few things too. I met some lovely people and got to touch base with other I had met before, including a mum I "met" on the Munted Pancreas forum. It is great to talk to people who "get" diabetes.

For being surrounded by children with Diabetes (CWD) I saw very little testing and no injections. I know that some were using Multiple Injections a Day (MID) but I didn't see any sign of it. I saw a few pump controllers out for boluses, particularly when the Freddo frogs were handed out during Diabetes bingo. The girls loved all their prizes.

The sessions for parents were good. It wasn't all so new like last year but I felt guilty that we don't have to struggle daily to keep Miss F's BGL in range. As long as we test and dose with her glibenclamide her BGL should be good. I want everyone to have our miracle.

During one of the session I did have an opportunity to present information about Neonatal Diabetes and other forms of Monogenic diabetes. I really liked to be able to talk to a group of interested individuals about this new diagnosis of KNCJ11 - R201H. Most of these families know other CWD and other PWD so getting the word out may lead to some others having their T1 diagosis changed or at least investigated further. Getting to do this session reinforced my decision to try and become a Diabetes educator. I sent e-mail out today to the UK Diabetes Genes group looking for some advice on the process.


Wendy said...

Hey Melissa. I'm so glad the camp went well. I know how it feels to mostly dwell in a world of people who "don't get it" (whatever 'it' is) and then the joy of being with people who do understand. It is such a relief.

I'm wondering if you couldn't put on your sidebar some simple definitions for people like me who drop by periodically, but cannot remember all those abbreviations and diagnoses. I feel like I'm reading a foreign language, but a simple definition would help.

The idea of becoming a Diabetes educator sounds great. I hope you're able to move in that direction without too much trouble.

Melissa said...

I'll try to add some of the abbreviations and things sometime soonish.

Jules said...

sounds like it was great. of course i knew it would be, i guess im just not there yet (as you know). the thought of socialising on top of managing R when not at home makes me want to cry!! ive always been a perfectionist and not being able to 'manage' D is a huge blow. guess we are all on our own journey. im so proud of you making that presentation, its a real specialist role, that you have first hand experience with. afterall, you made it possible for us to get R tested also. Keep pursuing it - education is the key.