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.

Friday, August 12, 2011

Jelly beans - Friday Fun

Well. I do love jelly beans but the best bit about today's jelly beans is that it is Camp Diabetes - Making a difference for kids with diabetes.

I have almost finished packing for our weekend away. I still need to check my list but I think I am almost done. Packing for 6 is quite an exercise. But I am really looking forward to the weekend of meeting other families dealing with diabetes. And sharing our story of Miss F's rare form of diabetes and her new treatment. Our story of Neonatal Diabetes might not make a direct difference to anyone on camp but hopefully it will help spread the word to even more people of this rare form of diabetes.

Everyone is looking forward to the weekend away.  Have a good weekend.

Thursday, August 11, 2011

Not quite what I was expecting

After a busy end to last week I thought this week was going to be slower. The school fete went well. To me that means that most of the things I baked sold before lunch time. It makes me happy that the effort I putting into baking was appreciated. I had fun baking, decorating and packaging up, unfortunately I also had a really late night. As a consequence was so tired the next day I thought I might go to sleep standing up at one stage. I didn't manage to get any photos but they did look nice.

On Monday I only spent 1 hour at home from school drop off to school pick up time. I went from school to the hospital (didn't actually get the medicine) to home for 5 minutes (I didn't get the girls out of the car) to get lunch for Miss E for daycare. I then picked up a friends child to take them to daycare as well. I then went straight to a (rescheduled to an earlier time) physio appointment, taking literally a minute to drop Miss F at a friends house first. Back to friends to collect Miss F and a quick game of UNO before heading to the hospital again to actually get the medicine this time. Finding a car park at the hospital is hard if you don't want to pay a large amount of money for the privilege. I found a 2 hour on street meter and was glad.

Parking at the hospital is really that bad. It's just that I have to do it every week for Miss F's medication.

I then came home briefly for Miss to sleep and then it was back to school for pick up.

Then rest of the week has been a bit quieter. Plenty of washing and meals to be made but that's normal.  Today, I took Miss E & F to the library for story time. Miss F only bolted once. Thankfully Miss E noticed and averted any incident.

Tonight I am packing for Jelly Beans Camp. It is the diabetes camp that Miss F and I went to last year. It was great to meet other D parents and learn soem more about D. This year we are all going. Miss E has been telling people about it all week. The older girls are really excited so I had better get back to the packing so we can actually leave on time tomorrow.

Friday, August 5, 2011

Too busy for any Friday Fun

Tomorrow is our bi-annual school fete. I missed the last one as I was in hospital after having Miss F. It should be fun but I have been baking and making things all day.  Unfortunately my DDs have not co-operated like I hoped. Too much "helping" and not enough actual helpfulness. My parenting skills have been tried today and found wanting.

Miss F sampled too much of my baking and ended up with a 11.2 BGL before dinner. Oops. I'll try to give a report after the fete and let you know how MIss C & D go in their class performances.