Tuesday, December 20, 2011

Gingerbread house - School holiday fun

We have finally finished our gingerbread house. It is not quite as pretty looking as I had hoped but I'm trying to be OK with that. I bought a kit from Coles and added some extra lollies. I love Freckle chocolates and so do my DDs. And the make get roof tiles.
Side view of fake chimney

The front yard has a Christmas tree, a Snowman and a Gingerbread "person". You'll just have to believe me.

The school holidays have been trying my parenting skills. The four girls are full of beans and tiring me out but we have sqeezed in some fun. The girls aren't used to be all at home for more than two days in a row and have taken a bit of time to learn to play well with others. Hopefully things will continue to improve. I'm sure people having been praying for me as then have gotten better since taking to friends from my church community group. I'll have reinforcements of the adult kind from next week as DH is taking two weeks leave.

The photoes are taken with my nice new camera in my nice new kitchen. Hopefully I'll get some kitchen photos up soon.

Back view

Monday, November 14, 2011

A more accurate diagnosis - Not Type 1 - Neonatal Diabetes

Dealing with diabetes is hard. Looking after a newly diagnosed baby is harder. How much was she drinking at a Breastfeed? I guessed. I had no idea of how she was feeling. I most probably missed lows and highs because I didn't test at exactly the "right" times but we made it through. After Miss F was discharged daily phone calls to the on-call Paed endo and more education session at the hospital were the new "normal". Miss F reduced her number of feeds in weeks after diagnosis so much. From 5 breastfeeds and 3 bottles every day to 3 breastfeeds and a bottle if she was low in a just a month or two.

We gradually reduced the calls to the endocrinologist and started making decisions about insulin dosages ourselves. I worked out how much food she could have for snacks without making her blood sugar spike with her long acting insulin and how much short acting insulin she would need to cover her meals. I tried to keep the times of her breastfeeds fairly constant to make that as predictable as possible in amongst balancing the carbs of her meals and insulin doses. It was quite hard to come up with low or no carb foods suitable for a baby that has just started solids. As I introduced foods I had to worry about how much of it she ate and if she spat some out.

We had to lance her skin at least 5 times a day to test her blood. Usually it was more because if she was low you would need to check again later to check that the apple puree or juice we had used to treat the low had helped bring up her blood sugar. If she wanted to eat something we would need to check her BGL to see if she needed more insulin to cover the food or try to work out if she had enough insulin in her system to cope with extra carbs. Sometimes I would look at her beautiful little legs before I put an insulin pen into her but know I had to do it to keep her alive.

I had certainly never heard of Neonatal Diabetes but I remember asking one of the diabetes educators at the first education session after hospital admission if there are other types of diabetes. Ones not caused by an auto-immune response but with something going wrong in the pathway to producing insulin. Little did I know how close to the truth I was.

When she was diagnosed with diabetes I felt we were given lots of information about managing diabetes in children but not infants. I think there was one page on toddlers in the book we were given. Most of my search for information centred around infants with diabetes. I searched and searched the internet. I came a across a bit of information about Neonatal Diabetes. After looking at some of that info I thought it sounded a lot like Miss F. Low birth weight, Failure to thrive, urination, presentation of symptoms before six months, etc. One things I wasn't sure about was if she tested positive for auto-antibodies at diagnosis.

I wanted to her to get tested immediately but I had to make an extra appointment to see a Dr at the Clinic to be able to discuss doing DNA testing as I didn’t want to be waiting the 3 months to the next appointment to get the ball rolling. I asked about her antibody results. Once the Paed Endo #2 looked at her initial test results and saw that she had no antibodies they were happy to do the tests
At diagnosis one of the younger doctors asked Paed Endo #1 if they would do DNA testing. He said not yet. I didn’t even know why DNA testing would need to be done. So the tests were done and the wait began. I did more searching for information about the various forms of Neonatal Diabetes. It became clear to me that some forms responded to oral medication and other didn't. So I spent a lot of time praying that it would be a type that responds well to oral drugs. The more I read the more I was convinced Miss F would get a positive result I just wasn't sure which type of Neonatal Diabetes it would be.

Breast feeding a baby with diabetes made it a bit harder as she stopped taking each feed. I had to make sure she was getting enough other food so it wouldn’t affect her blood sugar levels.
While we were waiting to the DNA results Miss F had her first birthday and we definitely wanted to celebrate her making it through her first eventful year. At her first birthday party we had to test her BGL and give her more insulin before she could have even a piece of her cake.

Also while we waited Miss F and I went to Camp Diabetes. It was so helpful meet other parents and receive more education. The JDRF peer support person I was assigned encouraged me to go on camp and meet others. It was the best advice I have received.

After I was given the positive DNA results for KCNJ11 (Kir6.2) R201H our next appointment was made for late December. I asked Paed Endo #1 if I would have to wait until then to find out more and he reassured me that they would be in contact before then. I then came home and could focus on the particular mutation Miss F has in my search for information. I found a number of articles about the successful transfer of patients with KCNJ11 mutations (Some with the exact R201H mutation) and also protocols for transitioning patients. When a doctor called they said that transitioning would be discussed at the next appointment (nearly 3 months away). I said that didn’t seem right as I had information on how to transition and knew that patients with the exact mutation had transferred. The next phone call lead to some e-mails back and forth with articles and protocols and selecting a date to transition.

I have had to search for information about Neonatal diabetes myself. The hospital hasn’t given me any information about Neonatal diabetes except to point me to the UK group who discovered the gene mutations. I guess they know that I am an informed adovcate for Miss F but it would have been nice for them to be actively supportive of my search for information.

I have a Bachelors degree in Science and a Graduate Diploma in LIbrary and Inforamtion Studies so my searching for information wasn't just google. I searched medical journals online and anyway I could get access to articles including going to the campus libraries so search myself. The more I found out the more targeted I could be in my search for information.

I contacted the UK group and found out about their Neonatal Diabetes Open day held in August 2009. I have received some information from them. I also asked them for contact details of others with Neonatal Diabetes particularly in Australia. They have been able to give me details of a couple of families in Australia. Privacy rules have been a bit of a pain with this as they had to contact the doctors would had to contact their patients to see if they were happy to to be put into contact with me. I understand privacy and patient confidentitally is important but it sure can slow communication down.
I also contacted the Kovler Diabetes Center in the USA and have joined their study and forum. I have spoken to one of their doctors and he was very helpful explaining things and answering questions. Finally I could ask question directly with someone who had some experience with Neonatal Diabetes.

I have been able to talk to two families here in Australia whose children have Neonatal Diabetes. One of the children has Transient Neonatal Diabetes and doesn't currently require any treatment. The other child is now on oral medication.

Last November Miss F was admitted to hospital to transition to oral medication. We used a CGM to monitor her BGL during the transfer. They gradually decreased her insulin and increased the glibenclamide over a number of days. Her pancreas started making its own insulin. We no longer have to monitor every bite of food Miss F eats but she will require still medication to keep her alive for the rest of her life. We still monitor her BGL 4 times a day.

If she was born and diagnosed even 6 years earlier we would have had to wait for this discovery. The first person to transition from insulin to an oral sulphonylurea only did so in 2004. Miss F’s BGL control has been a lot better since changing over to oral medication. Her HbA1C (measure of glucose on Haemaglobin- which indicates control of past 3 months) has gone from 16% at diagnosis, 7.8% (after 7months on insulin therapy) to 5.3% (after 9 months on glibenclamide). Her BGL is more stable and doesn’t fluctuate so high or low.

Monday, October 10, 2011

The highs and lows of Swimming, and Sick ,Sick Sick.

The weather is warming up here and DH took all the girls swimming yesterday. When I tested Miss F for dinner just an hour after they got back from the pool she was 3.2 (57.6). (Anything under 4 is a hypo or low.) She seemed fine but I gave her extra carbs with her dinner and her normal dose of medication. When I checked her before I went to bed her BGL was 5.2 (93.6). She had eaten afternoon tea before going to the pool. I know that many T1s have problems with swimming and lows. Has anybody had any experience with this and Neonatal Diabetes? Thankfully everyone had a great time swimming, so we will just have to learn how to manage swimming, medication, food and BGLs. Always learning.

Miss F is now 26mo and has been on Glibenclamide (Glyburide) for just over 10 months. Things have been going well for the most part. She has had some non-symptomatic lows when sick earlier this year but we have gave her some apple puree and her BGL has come up. When she was sick again recently I reduced her dose to half normal dose and didn’t have the same problem. I then gradually increased the dose as her BGL numbers increased. It was a vomiting bug duing the school holiday break and it is quite funny to watch a 2yo vomit, take 2 steps and vomit some more. But then I had to clean it all up. Not so funny.

The rest of the house also were to varying degrees and varying symptoms. We had to cancel three playdates and the children that were well at the time went a bit stir crazy being quarantined with the sick people.

Thursday, October 6, 2011

Missing in action.

I have even more busy than usual for the past month or two. We have had two birthday's and have organised a kitchen reno on top of the normal things to keep a family of six running.

We have taken some progress photos of the kitchen, so I will share those soon. I need to get them on the computer first. Actually getting the kitchen put in seems to be easier than picking all the appliances and features. There are endless choices (some are out of the reach of our budget) for cupboards, colours, benchtops, drawers, taps, sinks. You get the idea.

One of the things that has happened in the last month is on the diabetes front. Something that added just a bit extra stress each week was heading to the hospital to get DD#4 F's oral medication. We get a suspension for the ease of given an accurate dose and being able to change the dose easily as she grows. The hospital will only give the suspension a shelf life of 1 week as they don't have test data for for any longer. My local pharmacy starting compounding a month or two ago so I thought I would see if they could make it for us. Long story short. They can and have. We are on to week 4 of our first bottle and all seems to be going fine with her BGLs. They only problem is the cost. I put in claim to our private health insurance this week but I don't know if it will be covered. It costs more than 10 times the hospital phamacy price to get it from the local phamacy BUT it very convenient. The jury is still out if we will be able to continue to get it locally long term.

DH has just gotten back from his bible study and he wants me to tell you all how special he is. DH is special.

Friday, September 2, 2011

Remembering the Ekka - Fun Friday

I'm still playing catch up for August so this post is about the annual Royal Brisbane Show (Ekka). Our family went on People's Day Wednesday 10th August, which is the day of the local public holiday. We only decided the night before that we might go so I had a search of the official website to see what would be the main attractions that we would want to see. We quickly decided that seeing the fireworks would be a highlight so we would go later in the day so the children wouldn't get too tired.

We decided to not tell the girls about the plan in case the weather wasn't suitable. We had planned for a kitchen designer to visit us about lunch time as well so we planned to fit things in the day OK. We wanted to leave for the Ekka at about 2:30pm. The kitchen designer did a very through job and by the end of his visit DH was hurrying him up so we could get going. He left at 2:15 and we were out the door by 2:30pm. I don't think we have ever gotten ready to go out so quickly before.

We entered near the children's sideshow alley so some rides for the girls were first on the agenda. We then headed to the dog pavilion and then the Agricultural Hall (with big displays made of fruit & veges). I remember seeing similar displays as a child. We then headed for some afternoon tea and then Animal Boulevard. There were plenty of animals on display, horses, fish, birds, ewes giving birth, beef cattle, dairy cows being milked and an animal nursery. The 4 girls really enjoyed seeing all the animals. While we were there we saw a family from school and mum who was in my Mother's group when Miss C was a baby, I haven't since her for over 6 years. A few more rides were then on the cards. Dodgems were a favourite for DH (big kid) and Miss C.

I then persuaded the rest of the family to look at the cooking and crafts displays. The decorated cakes were impressive and the other baking made us all feel hungry. I enjoyed looking at the sewing and handicrafts. The girls were interested for a while but we skipped the painting and photography sections.

Strawberry ice creams and show bags were next on the agenda but the lines for both meant a change of plans. It was time for dinner. At least one Dagwood dog (corn dog) was consumed but we didn't give in to the pleas for fairy floss. After dinner we searched for seats in the stands around the arena to watch the night program. We ended up walking to the opposite side of the arena to get seats in the third back row.
Once the family was settled I headed back to the other side of the arena to get Strawberry ice creams. I really wanted one. It would make my Ekka experience complete.
This is the official description from here.  The Ekka Strawberry Sundae is mouth-watering top to bottom-from the crunchy wafer cone to the smooth vanilla ice-cream, sweet chopped strawberries, delicious awardwinning handmade gourmet ice-cream, swirls of fresh cream and topped off with a tasty fresh Queensland strawberry.
 I search for another stand with a shorter line but I ended up in the long line waiting for 6 ice creams. I then had to very gingerly walk back to our seats, with strawberries threatening to fall and general ice cream wobbles. I am saw I was a sight. I made it back and ice creams were consumed as we watched a precision driving team, motocross stunts and Monster trucks. I could not believe how exciting my DD's were to see these motorised acts.
I missed on the National anthem and some cattle mustering. The night was finished off with a great fire works display. Miss F had the best smile on her face. She really loved it.

I am really glad that we made the effort to go with all the children. I haven't been since before children and DH took DD#1 C & #2 D 4 years ago so they didn't remember it this time. I was almost due with DD#3 and could barely walk, so I didn't go that time. I remember going with my grandparents as a child so I hope the older girls might remember this when they are older. Great memories for us anyway.

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.

Friday, July 29, 2011

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.

Tuesday, July 26, 2011


Yes. I'm sore. But it was worth it.

Monday, July 25, 2011

Trying something new - Zumba

My baby Miss F is nearly 2years old. When she was a new born I remember feeding her at night and watching TV to pass the time. Midnight, 2am, 3am there isn't much on except a lot of bad television programs and infomercials. Zumba infomercials always seemed to be on. And ads for Proactive.

Zumba ads then made into daytimes spots and then Zumba was at a gym near you. Up until tonight I hadn't made it to a class. I looked at the kits in Target and was tempted but managed to keep my money in my pocket so far. Local classes have been at inconvenient times.

Tonight I went to Zumba at my gym. I tried to go last Tuesday but I had the wrong night, oops. A friend posted about her recent Zumba experience saying it was a waste of an hour. But my class was a great workout. It got my heartrate up and my body moving. The instructor and the other participants were enthusiastic and having fun. I worked up a sweat and think I might be sore tomorrow. It don't think the difference in our experience is just the she's fit and I'm not. I think I had a great instructor.

Now I have to work out if I will go back and pay the extra money each week. Zumba classes aren't included in the membership or just buy the kit and do it at home?

What would you do?

Friday, July 22, 2011

Friday Fun - Family movie night

Tonight was a family movie night. After dinner I moved the couch into optimum TV watching position and put a Hi-5 DVD into the player. Not my choice but all 4 DD's were happy

The Hi-5 DVD was part of the haul of books and DVDs we brought home from the local libarary this afternoon. Not sure how far Hi-5 have made it overseas. Let me know if you have heard of them if you aren't in Australia.

We have lots of children's books at home, particularly picture books, but it is great to head to the library and temporarily added to our collection. There have been soem that ended up such favourites that I bought our own copy. One of these is Muddled Up Farm by Mike Dubbleton. Great rhymes, great pace, my DDs love it.

Have you borrowed anything from the library and then needed to buy your own copy?

Friday, July 15, 2011

Fun Friday - Coco

Disney has announced a new character, Coco the Monkey with Diabetes.
Coco is going to be part of a series of books, starting with "Coco and Goofy's Goofy Day". It a collaboration between Disney and Lilly Diabetes. Coco is newly diagnosed and still learning about BGL checks, insulin and eating well. And her friends are learning she is still one of thema nd can do the things they do.

It sounds like a great move to educate and entertain.

Thursday, July 14, 2011

National Diabetes Week 10-16 July

This week is  National Diabetes Week here in Australia.

A quote from the Diabetes Australia web page "Each year Diabetes Australia celebrates National Diabetes Week to raise awareness about diabetes in Australia. The campaign aims to educate Australia of the risk factors for type 2 diabetes and how type 2 can be prevented."

It makes me mad on behalf of people with Type 1 Diabetes that the focus is so fully on Type 2. Prevention is great but Type 1's need a cure and not more people telling them that they should have looked after themselves to avoid the disease and that they can't eat that.
Another focus of National Diabetes Week is Eye health and getting your eyes checked which is important for anyone with Diabetes. I can't argue with that. Diabetic Retinopathy is a real danger when living with D over time.

As a mum of a CWD who isn't Type 1 or 2 I get annoyed with the lack of information about Monogenic forms of Diabetes. I know it is rare but an accurate diagnosis has changed our life.
Most sources of information about Diabetes only include Type 1 & 2 and somtimes Gestational. Some forms of Monogenic Diabetes can be treated with oral drugs - glibenclamide (like our Miss F), some don't really any treatment and some still need insulin but knowing can help get better treatment and outcomes.

Rant over.

Any ideas on how to make a difference?

Saturday, July 9, 2011

Great week

During the past week my oldest three DDs have attended the Kids Club at our previous church. The theme was Jungle tales and they have come home with Jungle dioramas, Lion masks, stocking tales and animal vests. My girls love to make things so the craft was a hit with them. The teaching time was parables from Jesus and they were keen to tell me what they had learnt.

It was such a blessing to see the people running the program keen to share Jesus with the children. My girls raved about their groups leaders. Miss E wanted to go again on today (Saturday) even though we all went to an end of week BBQ last night to round off the week.

Thursday, July 7, 2011

Playing with diabetes

Today was full. Today was great. Today my big girls, DD#1, 2 & 3 went to Kids Club in the morning and we brought 2 extra girls home for lunch.
When the other girls had gone home I made a quick decision to join the Diabeanies play date that I had hoped we could go to but hadn't counted on. I had to wake Miss F from her nap. Pile the girls into the car and drive to an unkown part of the city. I did have to stop a number of times to check the street directory. Miss C even commented on the number of times I pulled over to check.  "Are you stopping again mum?" "Yes, I am.". Anyway we got there and I had a great time. Meeting up with other D parents is great. They get it about BGL checks, and Doctors and just "get it". The know where you can get skins for your meter in Australia. Level Living, by the way.
I think the children had a good time too.
A lovely Diabetes Educator that I met on a Camp was there too, it was good to catch up with her and tell her about Miss F and how she is going on glibenclamide (glyburide).
I also had a chance to tell a few others about Felicity's type of diabetes and her treatment. I like to tell as many people as possible hoping that it will make to the right ears eventually and help change another life.

Saturday, July 2, 2011

Litter, litter, everywhere.

I wasn't going to post about this particular holiday activity. I thought it might seem a little strange that this was our first family activity this school break. But my friend post here about the litter problem in her part of the world so I have decided to share.

After walking through our local park last Saturday I was shocked by the amount of rubbish. I usually drive past this reserve as there is no play equipment and it is really just a gully with a small creek between two roads. Local high school students walk through it each day. My theory is that the buy food at the local shops and then drop the rubbish when they finish each as the rubbish only starts after a certain point in the park.

Any way the point is that Sunday I bought small gloves and rubbish bags and Monday I took my 4 DD's to the park to clean up. I may have added a small amount of motivation by offering some chocolate eggs when we finished but the oldest 3 girls were very keen. Poor little Miss F was kept strapped into the pram as I didn't want her eating the rubbish or running into the creek.

They enjoyed themselves and filled 3 kitchen sized bags with rubbish. The park is cleaner and will most probably stay that way until Tuesday week when students return to school. But we had our own Clean Up Australia Day for the holdays.

Now if I could get them to clean up the house.

Wednesday, June 29, 2011

Crossing ice skating off the list

Today I went to a local shopping centre with 5 children. Four of them were my DDs and one was my niece. I did have my mum with me (I'm not totally crazy). She brought my niece with her as she was baby sitting for the day.

Getting back to ice skating. The first day of the school holidays my DD#1 C put together two lists. One was "Things to do" and the other was "People to catch up with". As soon as she started listing things I knew that they were ambitious lists. She wanting to go iceskating. I said that that just wasn't going to happen. The seed of this idea was planted by my DH who took all 4 DDs to look at the iceskating in the CBD 2 weeks ago.

Skip to tonight and iceskating can be crossed off her list. It has been accomplished. I am surpirised that the opportunity presented itself but pleased that I could help a wish come true.

So the shopping centre had a small rink and 45min cost $10 or a certain spend at participating stores. So after my mum and I completed our shopping we could getting 3 free sessions and only had to pay for one. DD#4 F had to miss out as I thought she was way too young and I don't even think they would have let her one the ice. I wasn't going to go out there, so the girls were on there own. They only fell a few times and had a great time. A success.

DD#1 C also gets to cross off seeing cousins as well.

Saturday, June 25, 2011

Toy Sales - Fun Friday

I just love looking through the Toy Sale catalogues here. Myer, Big W and Kmart catalogues are all available now and Target is not far behind. My DDs don't need anything really but it is fun to look. And I do have some nieces and nephews to buy birthday and Christmas presents for sometime.

A friend has been posting about toys recently and has included some solutions to excess  and simple gift ideas. I love most of the ideas but I am still having heaps of fun looking through the catalogues and searching for ideal gifts.

Wednesday, June 22, 2011

Lows and sickness.

We have various sicknesses in the family over the past couple of weeks. Ranging from the sniffles through to vomiting and diarrhoea but nothing too serious or lasting long enought o warrant a doctor visit.

But the most surprising and worrying thing has been the lows DD#4 Miss F has had. In the last 7 months since transferring to glibenclamide (glyburide) from insulin I have become used to F's BGLs being pretty even. I am still testing at least 4 times a day but the numbers don't move too much. If she is sick they usually go up slightly.

This time is has been different. She has gone low. Not really low but 2.1, 2.6 and 2.4 have been seen over the weekend. So Saturday around midnight found me spooning apple puree into Miss F. She was 3.5 at breakfast which was reasonable I thought. I then halved her dose and got some better numbers for the day.

I have also only given her her suspension after I have seen how much she has eaten as she has been only eating smaller amounts. Yesterday one BGL reading was 10.1, so I have since increased the dosage to 2 thirds her normal dose as long as she has eaten.

In amongst this all I was trying to extend the time we use her bottle of medication last Thrusday and Friday. The pharmacy recommends using each bottle for only a week. I would dearly love not to have to trot off to the hospital each week. So I will have to experiment a lttle bit again when she is well. Now I don't know if the lower numbers I was getting mean that the suspension is fine to use for up to 2 weeks or more or if F's BGLs were lower because she was getting sick.  Back to the drawing board.

Friday, June 17, 2011

Bouncycle?? - Fun Friday

I saw this Bouncycle "bike" in a catalogue today. I'm not sure what to make of it. It does look like fun.

There are now trikes, balance bikes (no pedals), bouncycles, and normal bikes with training wheels that are all marketed at pretty much the same age group. Am I supposed to buy them all. Not likely. There might be something else that I have missed.

Will my girls suffer because they missed out the "gross motor development as well as balance and co-ordination skills"? Actually maybe I should get one. 

If you have one, no offence is intended but I just don't think we need another bike.

Wednesday, June 15, 2011

Boxes, boxes, boxes

Today I spent a couple of hours sorting through boxes. Some I haven't opened for at least ethe 9 years we have lived in this house. I am aiming to avoid featuring on a episode of "Hoarders". I am gradually filling our recycling bin and creating a pile of things to give away. In amongst it all I have found some gems.
  1. A locket that I recieved when I was confirmed at 13
  2. The "key" that was signed at my 21st birthday party
Mostly it is just stuff but I surprise myself sometimes at how tightly I hang on to the things of this world.  I need to remind myself that my heavenly home will have all I need and that I don't need to keep everything here.

Friday, June 10, 2011

Fun Friday - Lots of books

I bought this book 1001 Children's Books You Must Read Before You Grow Up from the school book club a little while ago. Today I started check it out. It is a great list of books from childhood favourites to recent publications. I can hardly wait to see what books my DD's will decide are their favourites.

I loved the Anne of Green Gables series and hope to introduce my DD's to them when they can read that well.  I must check if they are in book. Yep, It's there.

What book was your favourite as a child? Is there one you really want your children to like?
Image from shop.abc.net.au

The Initial Diagnosis

The start of F's D diagnosis story is here. Failure to Thrive is not what you want to hear about your new baby. As a mum you want your baby to grow and thrive, so to hear that that just isn't happening is a bit crushing. From the 12th October I weighed Felicity each week at the Child Health Clinic. She was so small and her tummy was so big. She seemed to be drinking ‘enough’ but not gaining weight.

Throughout this journey I knew I was right there was something wrong. God gave me confidence to keep pushing the doctors for answers. I now wish I had pushed harder and got answers for my DD sooner but I did what I could.

In November we went to Paed 1 and although she seemed reasonably healthly he agreed she wasn't "thriving". He sent us for a test of her stool. He thought is was most probably a cows’ milk protein allergy as she was put on formula while I was in ICU. The test came back positive for alpha 1 antitrypsin for he said that something was irritating her digestive system. I started her on Neocate LCP formula on 7th November 2009 and excluded dairy and dairy containing products from my diet so I could continue to breast feed as well. She did gain weight a little bit more on this formula but not much. I tried to get to see Paed 1 again before Christmas as I didn’t think she was really responding to it but he didn’t want me to come in again. I decided that we would try annother Paed after Christmas.
In January – I went to Paed 2 as I was still very concerned about her not again weight and having very bloated looking tummy. He referred us to Paedatric Gastroentrologist.

In February - Paed Gastro did Gastroscopy at just over 7 months old. She was so small they couldn’t get the camera through the duodenum so they took pictures and a few samples. Tests came back clear. A friend with diabetes came with me to the hospital that day and actually asked the Paed Gastro if it could be diabetes but he said no. The tests ruled out most digestive problems so we were sent back to the Paed 2 to see what he said.

22nd  February I did a test weigh before and after a feed at the child health clinic just to check she really was getting enough milk. 330g after a 15 minute feed She is definately getting plenty of milk.

By March Felicity was having 5 breastfeeds and 3 formula feeds per day and not really growing consistently. One of the GPs suggested a urine test for diabetes insipida but I was unable to ever get a sample. Nobody actually suggested testing for Diabetes Mellitus.

In March - Went back to Paed 2 - He said she is most probably just a small baby. I insisted on more tests I knew things just weren't right. He gave me a referral for blood tests, and possibly urine and stool samples. He said to introduce gluten containing foods (to check for coeliac disease) and then do the blood test after about 4 weeks. I introduced gluten to her diet and wait about 4 weeks. Then I had cracked nipples and I didn’t want my blood to mess with results.

In the month of waiting I also followed up on Felicity’s urine output which seemed a bit high. I got an email from the child health nurse with details on 19/4/10 I had weighed nappies for a few days prior. Felicity output of 7-10 ml/kg/hr was a bit high. Normal is 2-3ml/kg/hr The Child health nurse said it might be nothing but to mention it at the next doctors appointment. She was very helpful but I don't think she wanted to worry me too much.

I made an appointment with our GP to ask if they thought any other tests were necessary. I just wasn’t confident that Paed 2 would include enough stuff as he didn’t really think tests were necessary.

On 28th April 2010 I finally got to the GP and they rang Paed 2 and asked if separating testing and adding a couple was OK. We got the blood tests done before going home. Blood tests on an alomost 9 month old baby are not easy. F was particularly small for her age as well. I found it pretty distressing. I went home thinking that it would be good to get some answers soon. I was not expecting to hear back too soon though, tests take a couple of days usually.

BUT I got a call that night about 8:30pm from our GP to take Felicity to hospital her BGL was 29. EEK!! I was home alone with 4 sleeping children so I called my DH at work to come home ASAP.
I was surprised it was Diabetes but not that there was something major wrong.

I somehow had the presence of mind to pack a bag for hospital and have a shower before DH got home. I made a couple of calls to our parents. Both sets insisted that they would come and look after they other girls. I thankfully said yes to my mum and DH and I were both able to go the hospital.

F put on more than 1000g in less than 3 weeks after being diagnosed with diabetes. She was no longer starved for food from the inside. Even though it was a huge thing to deal with and lots to learn I was thankful for an answer to our search.

Tuesday, June 7, 2011

Insulin for Life and more fridge space

Yesterday I finally posted off our extra insulin. I have kept 4 vials of Novorapid but the rest of the Novorapid, the Levemir and Protophane are now on the way to helping someone else.
As I showed in the photos during Diabetes Blog Week we don't need all the supplies that we used to since DD#4 F transitioned to glibenclamide (glyburide). Sending the supplies to Insulin for Life Australia has been on my to do list since January. I finally get to cross it off the list. And I get some space back in my fridge and pantry (the diabetes supply shelf is less crowded now.) I also sent off some pens, needles, lancets and lancing devices that we don't use.

I posted a while back about the need for insulin and other diabetes supplies both in developing countries and after disasters in first world countries. I'm glad that our surplus can help someone in need.

Friday, June 3, 2011

"Our" park open again - Fun Friday

Our local park opened again after the January floods about 2 weeks ago. We have been stopping there after school drop off or after school pick up nearly every day. It is so great that it is open again. The girls really enjoy the flying fox and spiders web. I like that they are having fun and being active.

So many parks are still closed including some of our favourites but I am very thankful that "our" park is open again.

Do you have a park that you call your own? What do you enjoy most about it?

Tuesday, May 31, 2011

Endo appointment

I spent a couple of hours last night trying to download the reading from DD#4's Optium Xceed meter. The Copilot works great to give an overall view of what the BGLs are doing. But the meter didn't what to talk to the PC and I had to reinstall thedriver software. I finally got some lovely printouts (graphs, pie charts, etc) to show the doctor.

Well I was expecting good things from today's appointment. I wasn't disappointed, thankfully. Hb A1C 5.3 yay:) I feel like I have passed a test but really all it is is the appropriate treatment for my daughters rare condition is working effectively. We have tweaked the glibenclamide (glyburide) dosages a little since last appointment to 2.75mg breakfast, 3.75mg lunch and 2.75mg dinner. The increased dose at lunch seems to cover lunch and afternoon tea better than the 3 equal doses we had previously being using.

It seems so weird to be thankful that F has a rare genetic disease one little Arginine peptide changed to a Histidine at the 201 codon but it has made the management of her Neonatal diabetes easier.

I also found out that DD#3 thought that her sister didn't have diabetes anymore. The new treatment certainly isn't a cure but is a miracle. Still praying for a cure for Type1 and the monogentic forms of the disease.

Friday, May 27, 2011

Fun Friday

I had a great time today listening to
Wicked. I loved the musical and I love the CD. Listening to it takes back me to the show.
This is the original (US) cast recording but the Aussie cast aren't going to make one.

What is your favourite musical?

Monday, May 23, 2011

Missing out on the fun

DH and DD's C, D and E went to the Planetarium on Saturday afternoon. I stayed home with F for nap time.
We booked ahead for the show after the disappointment of last try. The family ticket is usually for 2 Adults and 2 children but it was cheaper for our 1 Adult, 3 children family as well.

They all had a great time and saw Secret of the Cardboard Rocket. DH has been raving about and planning the next outing already. He keeping telling me useless interesting facts such as "while Mercury is a hot planet it's dark side is freezing"-knew that, "Venus spins opposite to the other planets" - had to look it up to post, already forgot it.

They also went to the Botanic Gardens and followed the Hide 'n' seek Children's trail. The girls thought it was also great fun.

So Saturday was a good day of family educational and active fun. Hopefully I will get to go next.

Edited actual space facts as I keep getting the names mixed up. Oops!

Friday, May 20, 2011

Fun Friday

I felt a bit blogged out after Diabetes Blog Week. I have decided to try a few theme days to help me get things going again.

So here we are on "Fun Friday".

I visited a blog recently and saw this great case that their daughter had been given.


I am seriously tempted to buy one. It is such a cute testing kit.

Monday, May 16, 2011

What I've learned - Diabetes Blog Week

Topic: What have you learned from other blogs - either this week or since finding the D-OC?  What has your experience of blogging the DBlog Week topics with other participants been like?  What has finding the D-OC done for you?  If you'd like, you can even look ahead and tell us what you think the future holds!

This week has has reminded me how many great blogs there are out there. I have visited a few this week I haven't been to for a while and been blown away by how well others express themselves. I have visited many others for the first time and and am happy to have found them.

Finding the DOC has been a mental life saver for me. When I have needed to know others are going through the same things the DOC has been there and I appreciate more than I can express. The same, same feeling that I get as I read is a comfort, as well as wishing that others didn't have to go through it.

I know my DD will grow into a strong confident women because I can see those that have gone before and succeeded. Both because and despite of Diabetes.

Saturday, May 14, 2011

Saturday Snapshots - Diabetes Blog week


Our supplies while DD was on insulin

Insulin - Levermir, NovoRapid and Protophane
3 Insulin pens
box of Needles
Large sharps bin
Small sharps bin
Glucogon and Syringes
2 Optium Xceed meters
Glucose Strips for meter
Blood Ketone Strips for meter
Multiclix Lancer
Lancer drums
Diabete-Ezy Test-Wipes
Basket and bag to store it all in the pantry

Our supplies on glibenclamide (glyburide)

Glibenclamide drops (shelf life 7 days- stored in fridge)
Oral drops syringes
Optium Xceed Meter
Glucose Strips for meter
Multiclix Lancer
Lancer drums
Spare Glibenclamide tablets
3in1 tablet cutter/grinder/storer
Apple puree to mix in tablets.

The tablets are a back up. We had power blackouts for 4 days when Brisbane flooded January 2011.
We need to be prepared for that type of situation. 

Our back up supplies

Insulin - NovoRapid
1 Insulin pen
10 Needles
Small sharps bin
Glucogon and Syringes
Extra Optium Xceed meter
Blood Ketone Strips for meter
Basket to store it all in the pantry
We have these supplies just in case DD's BGL goes so out of range insulin or glucogon is necessary.  As time goes on and we are more confident on how she responds to different sicknesses we might not keep all these things but at the moment I like to be prepared.

Meeting Awesome people - Diabetes Blog Week


Today topic is to focus on the good things diabetes has brought us.  What awesome thing have you (or your child) done BECAUSE of diabetes? 

An awesome thing I have done because my child has diabetes is meet some great people (both in real life and online) whose lives have been touched by diabetes. People with diabetes, parents of children with diabetes, spouses of people with diabetes, doctors (yeah, I’m glad I have met a couple of them). I have met a whole bunch of great people that I would not have met otherwise.

My DD and I went to Camp Diabetes with some great educators, nurses, parents and children with diabetes 3 months after diagnosis. I learnt a lot and for the first time met others dealing with this thing- diabetes. I found it amazing how there is a bond with people you have just met because of the shared experience. We may not have had exactly the same things happen but we all know about the shock of diagnosis, the ups and downs of BGLs & the ups and downs of diabetes. We know the fear of hospitalisations, the fear of bad lows (is there a good kind?) and the dread of diabetes complications long term. Through our hospital I met Julie (her son is one month younger than my DD) check her blog over at Bittersweet - Our baby & Type 1 diabetes is has been great to chat to someone with a child of similar age. Not many children are still being breast feed when they are diagnosed. :)

Reading others blogs and participating on boards helps with tips, ideas and generally knowing you aren’t alone. I sit nodding in agreement, crying in the pain shared and strangely comforted by others need to vent.

I am usually shy about meeting new people but the desire to better help my daughter has meant that I have made contact with people on the other side of the world to help my daughter. Thanks to the Kovler Diabetes Center in Chicago, US and the Diabetesgenes.org in Exeter UK for their information and the support to make contact with other patients. I have called strangers whose children have the same rare Neonatal Diabetes, just to hear that they understand and have been there. I have met awesome people (Hey, Christy) who have inspired me to educate others about Neonatal Diabetes.

If I can get the word out that not everyone diagnosed as an infant has type 1 diabetes but they may have Neonatal diabetes and be able transfer off insulin and get better BGL control and long term health because of us. That would be awesome too.

Thursday, May 12, 2011

10 things I hate about you, Diabetes


So today let’s vent by listing ten things about diabetes that we hate.

1. You are so complicated.

2. You are so demanding.

3. You have robbed my daughter of “normal” now and in the future.

4. You mean that my DD’s BGL is not “normal” so have to make her tiny fingers bleed multiple times a day to check it. That isn’t OK.

5. Someone actually blamed by daughter being fat for her diabetes. She was diagnosed at 9 months and was under weight at the time. Argh.

6. You mean we have to carry around extra things. Meters, medication.

7. You mean I have to go to the hospital each week to get the glibenclamide (glyburide) drops that treat my DD’s rare form of diabetes.

8. You can be scary.

9. You mess with peoples’ heads.

10. No, my DD is not growing to grow out of it. Also argh.

Wednesday, May 11, 2011

Diabetes Bloopers - Diabetes blog week


Today’s topic for Diabetes Blog Week is Diabetes bloopers. Things can and will go wrong and sometimes they are funny.

When packing for our 7 day summer holiday I carefully calculated how many strips we would need and then added a few more for good measure. I added extra cartridges for the Multiclix finger pricker and some blood ketone strips just in case. I packed DD’s medication separately as the solution needs to be kept cold. We packed the car and headed on our way. We stopped for lunch on the other side of town just so we could actually get going and start our holiday. When we stopped for lunch I discovered that I had left the carefully prepared testing supplies at home. I was able to use the spare test kit that I had remembered for lunch but is only had a few strips and I really don’t like using the spare Easy touch pricker.
There was no way DH was going to turn around and go home for the testing kit so it was off to the nearest chemist. I went inside and found that it wasn’t a NDSS (National Diabetes Services Scheme- Australia subsidy scheme for Diabetes) pharmacy which meant I would have to pay full price for the strips and new Multiclix.

That was an expensive oops.

I could also tell you about the time DH and I both thought that the other had given our DD her insulin at breakfast, so by lunch time her BGL was HI but hey things happen to the best of us.

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.

A letter of Thanks - Diabetes Blog Week

This is a much more positive post than the last one. But it is another letter I have been meaning to write for a while. I might even send this one. :)

Dear Professors Ashcroft and Hattersley,

Thank you so much for your work and how it has impacted our lives.
Just over 12 months ago my nine month old daughter was diagnosed with diabetes. Without your research she would still be requiring insulin to keep her alive. Six months ago she transferred to oral treatment with a sulonylurea (glibenclamide or glyburide). Our lives, her life is better because of your individual work and your collaboration.

Professor Frances Ashcroft thank you for your work focusing on ATP-sensitive potassium (K-ATP)channels and how they work in insulin secretion. My daughter DNA mutation means hers don't work as they should.

Professor Andrew Hattersley thank you for leading the genetic team in Exter to identify activating mutations in the Kir6.2 gene causing a form of diabetes.

Even though she was older than the 6 months old usual cut off for Neonatal diabetes diagnosis she had been sick for at least six months. She had no beta-cell autoantibodies detected and had been a low birth weight baby (2.6kg). So she fit a few of the criteria for genetic testing. I am so thankful that we did the DNA test even though getting a blood sample drawn from a small baby is traumatic. The outcome for our family has been great.
I don't think it is very often that parents would be praying for a positive result for a DNA mutation but we are thankful.

She has a R201H mutation of the Kir6.2 or KCNJ11 gene. Her blood glucose levels on the oral treatment are good. And her HbA1C after 3 months on her new treatment was 5.5 down from 7.8 in September.

So, thank you, thank you, thank you.
Basically I can't thank you both and your teams enough.

Best wishes for your future research,
Melissa (a grateful mum)

Tuesday, May 10, 2011

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.

Saturday, May 7, 2011

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.


Thursday, May 5, 2011

The need for insulin.

Lately the have been lots of reasons that PWD (people with diabetes) need extra help. Flood, earthquakes and tornadoes have played havoc with peoples lives. Possessions have been taken away from them and their day to day life has been put on hold.
The thing is that PWD have special needs when it comes to food and their medication. They can't not eat and they can't miss their insulin.

When communications are down, power out and supplies low it make life for PWD. People with other disease have their own challenges as well but since DD#4 Miss F was diagnosed any natural disaster makes me think of those PWD that are in the midst of it all.

The most recent of these are the tornadoes in the US.  I just read this article Alabama PWDs Need Your Help over at Six until Me which outlines the needs of PWD and how other can help. Send supplies if you are able to the Huntsville JDRF office.

An organisation the helps out PWD that don't have access to diabetes supplies in normal circumstances as well as during disasters is Insulin for Life Australia and the Insulin for Life USA.

Wednesday, May 4, 2011

Family Fun - Camping

Our family took the opportunity this past weekend to go camping at Lake Somerset. The Holiday park had a children's movie on Saturday and Sunday nights. This helped to occupy the evenings while we were there.

The children had a great time. There was mini golf (a free game per day) and a play ground. Great family fun. We made a quick drive to Kilcoy on Sunday for a few extra supplies and DD#4 had a nap in the car. No napping in the tents for our Miss F.

One extra challenge on camping with Miss F is her medication needs to be refrigerated. We decided to take her back-up tablets instead. This meant grinding up the tablets and slipping them into something tasty. She loves fruit puree so she didn't mind at all. But BGL testing and medication adds an extra things to do at each meal time and feeding four DD's while camping can be challenging enough. DD#3 was not so good at using her lamp as a table and wore a bit more of her food than usual.

Miss F's BGLs weren't as good as the usually are at home but I guess cutting up and then grinding them it as exact as using the solution at home.

Over all it was a good experience and we look forward to spring to head off camping again.

Thursday, April 28, 2011

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.

Wednesday, April 27, 2011

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.

Wednesday, April 20, 2011

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!

Thursday, April 14, 2011

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.

Tuesday, April 12, 2011

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.

Sunday, April 10, 2011

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.

Friday, April 8, 2011

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.

Thursday, April 7, 2011

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.

Wednesday, April 6, 2011

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.

Sunday, April 3, 2011

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.

Friday, April 1, 2011

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.

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.