Thursday, March 31, 2011

Why I blog?

Christy from  My 2 Sweet Babies has invited me to share why I blog.  She was asked to do the same by someone else on the DOC (Diabetes Online Community).

I tried to start my blog in January 2009. I made it as far as one post. I started again on the September 2 2010 the day I found out DD#4 F had Neonatal Diabetes.

So my reasons for my blog have changed from my first attempt in 2009.
My 5 reasons are:
1. Share our life - a few of my friends have blogs and I love to hear what they are doing and what they are thinking about. So I hope some of them might like to hear what my family and I are doing as well.

2. Educate about diabetes  - one of my best friends from uni has diabetes so I thought I knew a bit. I have a science degree in biology. I think I did know everything I wanted to know about it. Having a baby diagnosed put me on a steep learning curve for everything I needed to know to keep my baby alive.
I tried to find information on the web when she was first diagnosed about babies with diabetes. I didn't find the families stories like I wanted to hear. This is part of our story with diabetes.

3. Educate about Neonatal Diabetes - it is so rare and the change in treatment that some can undergo makes such a difference. I just want to find everyone who can benefit. Just this week I have contacted I person diagnosed at 6 months to ask if they have heard of it and advised them to look into it for themselves. I would love to become a Diabetes Educatorfor Monogentic forms of diabetes one day. Doctors need to know more about it as well.

4. Connect with others - I felt very lonely when F was diagnosed. I didn't know anyone in a similar situation. She was just under 9 months when diagnosed. When we got home from hospital I called JDRF and Diabetes Australia Queensland to try and find some support but it was hard to get someone who had even heard of a child under one year being diagnosed. Introducing solids while counting carbs isn't really what I would call fun. Finding the DOC has really helped. Hopefully my blog will help others even if it just that they can see that I have gone through soem of the same struggles.

5. Record things - I have never been one to write a diary but I liked the idea. So now I get to play around on the computer and have a record to look back on.

If you would like to share why you blog please do. I don't like to tag.

Wednesday, March 30, 2011

Getting things done.

I have been getting things done this today. Yes, it's a little sad that this is worthy of a post but it's true.
I have been having trouble getting "things" done lately. Motivation has been low.
I have folded a load of washing, and put it away. I have done two loads of washing and the first is currently drying.
DH did ironing for me last night while I went to the gym and I have put those items away. He is a gem.
I have started preparing the salad for our Community group dinner tonight.
And I made a phone call that I have been meaning to do for over a week.
Yay me.
It helps that DD#4 F is asleep and the others are at school and day care.
I still need to make something for supper. Maybe a chocolate cake.

Tuesday, March 29, 2011

I had to be wicked again

It is such a great show. I have been here and here. On Friday I lined up with my 4 DD in tow to try and win $35 tickets in the Wicked lottery.  We were in the area anyway as I have to pick up DD#4 F's medication from the local hospital pharmacy on Friday afrternoons. We waited for 30 minutes for the draw. We didn't win any tickets.

DD#3 E was very disappointed. Big bottom lip came out and general sad face. I wasn't too disappointed. I just started planning another opportunity to try and win some tickets.

Well after church on Sunday I got DH to drop me and DD#1 C off at QPAC for another try. First we had lunch and went for a short vist to GoMA. We didn't past the Ground Floor, there is so much to see. We headed back to QPAC and put our names in the draw. Having two of us there increased our chances. I won two tickets. I called a friend straight away to see if she could come. Unfortunately she couldn't make it but her sister (also a good friend of mine) came along. Even though the seats were sight restricted it was fabulous. The seats were in the second row and one the opposite side to the previous two times I went so I got a different viewpoint.

I also bought the US soundtrack two weeks ago. I am not obsessed. A few other at the lottery draw had seen over twenty times.

Wednesday, March 23, 2011

Hitting new lows??

DD#3 F, otherwise know as our little miss with diabetes, likes to keep things interesting.
We have been cruising along since changing to oral medication as far as her BGLs go and her last HbA1C was great.

Today I got her up from her nap at 2pm for a late lunch. I wiped and dried her hands as I usually do. The the reading was 2.8 (50), I checked again 16.6 (299). They couldn't both be right. Yikes. So I tested again and again 3.7 & 3.5 (67 & 63).
So she was low. Not too low. But the difference between the first 2 readings threw me.
I don't know if she put her finger on or in something when my back was turned between tests but it was weird the other 2 tests were on her other hands.

F hasn't had heaps of lows, which I am very thankful. Even when on multiple injection of insulin every day we only had a few real hypo incidents. If it wasn't under 3 (54) I just gave her extra food and/or reduced her dose of insulin.

Now I am wondering about what causes the slight lows she has had while on sulphonylureas. Does the specific mutation make a difference in how likely lows or highs are? F has the KCNJ11 - R201H mutation one of the most common to cause Neonatal diabetes.

The lowest BGL reading F has had have been after high carb meals. Today 2 small bananas at morning tea. I have been wondering if it is her body overshooting with insulin to conteract the sugar in her system. End result a bit low with the BGLs. Any ideas? Fellow science brains?

Monday, March 21, 2011

Having fun

I really enjoyed seeing Wicked again. Such talented performers. Maybe I have enjoyed it so much because I hardly ever see musicals but I really think it is because it is a really good show. Going a third time might be over doing it.

I have just finished reading Emma a couple of days ago. I was rereading it for a book club that my community group is starting. I own the movie - Gwyneth Paltow version. I usually read books fairly quickly, so the 2 weeks it took me to get through Emma felt like a long time. I found it had going reading the early English and working out what was being said.  But I am looking forward to discussing it wiht the rest of the group although I don't think I'll be very literary in my contribution.

Also I'm looking forward to catching up with a friend tomorrow for morning tea. I could say we are going out for coffee but neither of us drink coffee but it should be good to catch up.

Friday, March 18, 2011

Time to be Wicked again

I'm really looking forward to seeing Wicked again tonight. I enjoyed last time so much I got DH to agree to me taking DD#1 C. I think it would be too scary for DD#2 even though she would love the rest. My mum and one of S-I-L and a few other lovely ladies are coming out as well.

So thankful that DH can look after the other girls.

Tuesday, March 15, 2011

Finding out more.

Over the last couple of days I have been trying to find out more about Transient Neonatal diabetes. As F as Permanent Neonatal diabetes most of my investigations so far have been about this type. I have lots of journal articles and some websites.

We have increased her dosage slightly since her endo visit two weeks ago and her BGLs have been more even. As things have started to settle down slightly with F I am keen to find out about the other types of monogentic diabetes.

I have also tried to contact another Australian family whose daughter has the same mutation KCNJ11 - R201H. I hope to hear back soon. I have really appreciated the contact I have with families in the USA. It would be good to make contact with more of the families here and have a small network in Australia.

Saturday, March 12, 2011

Being a Purposeful Woman

I had a great day today. I spent the whole day at the Women of Purpose conference. DH looked after our 4 girls.

It was a really encoraging day of really good teaching. The speakers with interesting and entertaining. The topic was Living Grace. The first speaker Maxine Cook spoke from Ephesians especially of God's grace to us. That tied in really well with things I have been thinking about at bible study and church as we are looking at Ephesians at Sojourn Bible Church as well.
The second specker Gillian Davis shared about being bearer of grace to the world. Great stuff. Both of these women gave me a lot to think about.

Downloads of the talks will be available at the website.

Wednesday, March 9, 2011

Weekend Away

We finally got away for a weekend. You might have read here  about our planned camping trip, well it still didn't happen. The weather wasn't looking good for the past weekend so DH booked a cabin at Big4 North Star Holiday Resort.  It was great. The weather wasn't.

There is a kids club for 3-12 year olds. Our 3 older DD's had a good time playing on the indoor playground and doing the organised activities. DH and I got to have a bit of down time with only one active child to look after.

DH got in some fishing at Hastings Point. I think it was the real reason he wanted to go away for the weekend.

The Resort also has camp sites with ensuite bathrooms so it might be somewhere we head back to for actual camping in the future.

Thursday, March 3, 2011

Back to school

It was back to school today for D. She had 6 days off from school for sickness. So many days. It was nice to have her at home. She is so sweet. As she started feeling better D wanted to thank me for looking after her. And give me little gifts (a coin, a fake gem). So cute.
I asked the teacher this afternoon what she missed. They are now focusing the letter P. She said that D is up to speed. Which is good, but it is kind of sad that you can miss more than a week of school and not have missed a thing. I know it only early days and it's prep but I would like her to really make some progress this year.

Tuesday, March 1, 2011

Diabetes clinic

As I said in my last post F had a Diabetes clinic appointment on Friday. I had downloaded her BGLs from the Xceed monitor to the CoPilot software to be able to show the doctor just how her levels were going. I went armed with print outs But I was most looking for to finding out her HbA1C.
This is the value which tells the doctors what the blood sugar control has been like over the past 3 months. It tests how much sugar has stuck to the haemaglobin cells. These cells live for about 3 months.
Three months is also how long since F transferred over to the sulfonylurea (Glybenclamide or Glyburide in the US).
All the articles I have read have about KCNJ11 mutations said that patients can get HbA1C levels of about 6 or lower on the oral medication. So going on F's averages I was hoping for 6.2.
It was over 16 at diagnosis, 9.8 after 2 months on insulin, 7.8 in September 2010 and 8.3 when admitted for the transition in November.
It was 5.5 on Friday. I was so excited. It's almost "normal". It may go up and down a bit as she grows and we change doses but it means that the drug is working. Her blood test the previous week was to check her C-peptide levels. C-peptide is what is left over after the body makes insulin from proinsulin. We also got the results for that it was 0.7. I'm not sure of the units but the doctor said it was normal levels.
The glybenclamide is helping her body to produce insulin.

I am so thankful that God has provided us with our own little miracle. I am thankful for the endo team at the Mater. I am thankful for Professors Frances Ashcroft and Andrew Hattersley for working it out.