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.

Busy weekend & the Highland Gathering

Our weekend was so busy that I have spent the last few days trying to work out which part to blog about.

The main part other than remembering the death and resurrection of Christ and observing this at church was travelling to the Maclean Highland Gathering.

My DH grew up in Maclean and has talked about the Scottishness of the town and the Highland Gathering each Easter we have been married, I think. I had had an aversion to bagpipes and want to spend time with my extended family at Easter.

This year we compromised we went down but only stayed one night so we could have lunch with DH's family on Good Friday and lunch with my family on Easter Sunday. My compromise was the fact we actually went and DH's was that it was only one night.

I am happy to say that I enjoyed the time away. DD#2 D really enjoyed watching the Scottish dancing. She asked me to look up a local school so she can learn. The parade through town was nice and the band competition was impressive. They also have a Highland Games which was quite fun to watch.

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!

The term is over.

We have successfully made it through Term 1 for 2011. It has been a very long term for our girls. I had a parent/teacher interview for DD#1  Miss C yesterday. It went pretty much as expected. She is doing fine. I wanted to know how to motivate her to do her reading so we discussed some possible strategies. She doesn't have a problem with her reading, she likes reading in class but she doesn't want to do her home reading.

As DD#2 Miss D is in Prep there is no interview until next term but I wanted to know how things were going as her kindy teacher was a bit worried about how she would settle this year. I tried to make a time with one of her teachers but our availability didn't match up. We ended up having a chat after school last week and covered most of what I wanted to know. The rest can wait until the week 5 interview next term.

Now to keep the girls occupied for the next week.

Sad WA news story

Girl dies in boarding school A year 10 student with diabetes was found dead on Sunday morning. I can't imagine how her parents feel. It is always a fear for parents of children with diabetes. No matter how good their control is things can happen.

Disappointing outing

Today we ventured out after church to the Planetarium. DH wanted to go yesterday with the 2 oldest DDs but we decided to make it a whole family outing. We had difficulty getting a car park and then we found that the show we wanted to see "Secret of the Cardboard Rocket" was sold out. It is one of the children's shows.
We had no idea that going to the plantearium was such a popular Sunday outing. We now know it is wise to book ahead to ensure a seat.
We ended up going through the tunnel there which has telescope images and looking at their small display area before heading home via the KFC drive thru.

First Words

This makes me sad. DD#4 F has diabetes and that means testing her BGL at least 4 times every day. That makes me sad enough.
She is 20 months old and not really talking. She has a few words that she says sometimes. Mama, Dada, Nana (Banana, not her Nana) and Ella (a family friend). Last night she said "inger". Now the only reason I know it was susposed to mean something is that she had just crawled up into her highchair, put on the table and then stuck out her pointer finger and said "inger" because she knows she has to get tested before she gets her dinner.
Now I am making myself cry. I know we have it a lot better than others with diabetes because it is Neonatal diabetes rather than Type 1 and she has responded to oral medication and some mutations don't but I really didn't want one of my little girls first words to be about testing her BGL.
Another friend whose little boy has diabetes too posted about him being able to say "test" and now DD#4 is nearly able to do the same.

Last night's experiment

Our little medicate or not medicate experiment with no dinner last night went well. I tested DD#4 F BGL at 11:17pm and it was 3.8 (69). That was boardline for my comfort levels so I set my alarm for 3am. When I tested her BGL again at 3am it was 6.6 (119) and then 5.4 (97) at breakfast time. Beautiful numbers really.

This experience adds to my knowledge of how Miss F responds to her medication. Hopefully this will help in the future as we get used to this new regimen.

First time for medication and not eating

Tonight DD#4 F went to sleep in her highchair before eating her dinner. For any of the other girls it would have been no big deal and putting them straight to bed. But with Miss F I had a dilemma because of her diabetes.

1. Do we wake her up, test her BGL, give her medicine and feed her dinner?
2. Do we test her BGL and put her to bed with no medicine and no food?
3. Do we test her BGL, give her her medicine in her sleep and put her to bed with no food?

If she was still on insulin the only option would have been to wake her, test BGL, insulin, food and then bed. No real choice there. But she has been on glybenclamide (glyburide) for 4 months. This is the first time she is missing a meal.
We picked option #3. So I am about to do her late night BGL test to see how the experiment is going. Hopefully it is not too low so I don't need to wake her for some food. If it is OK we will see how it goes overnight.

Missed a dose and feeling silly.

Last night I tested DD#4 BGL before I went to bed.  It was 11.1 (200) which is a bit high for her. I hadn't given her the medication at dinner. I asked DD if he had given her dose of glybenclamide as he tested her then. But no. So that was why she was a bit higher than usual. Out of the 4 last readings over 10 (180) 2 have been missed doses, 1 explained and the other must have been food on finger because the other hand was 3.3 (59).

I am so thankful for the good control we have had so far on this new treatment. We don't really know what the future holds as it is a bit of an experiment. Only a dozen or so people are using this medication for this condition in Australia and 500 or so around the world.

Glad it's Friday

I'm not sure why but this has felt like a long week. Maybe it's becausewe are getting to the end of the school term. Maybe it's because I have been tested by some challenging behaviours in my DD's. Not sure. But I am looking forward to the weekend. Even though it's mostly the same duties with less schedule.
I think the whole family it looking forward to the Easter break. Twelve weeks is a long school term.