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.
Monday, October 10, 2011
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.
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.
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.
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.
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.
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.
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.
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