Tuesday, November 30, 2010

Out of Hospital

F has successfully made the transition to oral medication. Glibenclamide is a drug usually used in treatment of Type 2 diabetes. But for the past 6 years they have been using it for patients with some forms of Neonatal Diabetes.
F hasn't had a needle since Thursday evening and I'm so excited. It really wasn't nice to have to give her needles even though it was keeping her alive.
I am so thankful that our prayers for a smooth transition were answered. I was quite anxious for a while in the lead up.

Tuesday, November 23, 2010

In hospital now

F is in hospital now and received her first dose of the oral medication (Sulfonylureas) this morning.
We are praying that it works. She (& I ) will be in hopspital until Friday at least.
They up the dose each day but it might take a few days to see any effect.

The work on the bathroom is continuing and seems to be going well.

Monday, November 22, 2010

Off to Hospital

Monday is admission for F.
It is the day for assessments by doctors and OT. The actaul transition of medication starts first thing on Tuesday. We are hoping and praying it works and all goes smoothly.
I asked that she have a continous glucose monitor because I have no idea when she is low or high by behaviour or signals from F. I hope that it will make things safer.
All prayer for a successful transition are appreciated.
Hopefully no more insulin soon.

Thursday, November 18, 2010

Wednesday was a big day.

C went to school. E went Day care after we did a grocery shop.

AND they starting pull apart our bathroom. Some of you might know the bathroom history but we are finally getting things fixed after last years botched reno.
But the job has become a lot bigger. As they started pulling things out they realised that they really need to start again. Which equals expensive.

I have arranged to visit with a mum from the diabetes clinic today. Her son is only young too so it will be good to talk to her about their experience.

Monday, November 15, 2010

Hospital time soon

F was supposedly to be admitted last week to transition to the oral drugs but she had Hand, Foot and Mouth so they didn't want her in hospital. But in the last week I have spoken to Dr Greeley from the Kovler Diabetes Center and another family in Australia whose daughter has the same mutation (R201H). F's Dr hasn't treated anyone before so I'm trying to get as much information as possible from others. So the time has been productive anyway.
Dr Greeley says that he is unsure how long her transition make take as even though she is young she was undiagnosed for a number of months and they haven't had experience with that.
F is now due in hospital next Monday to try to transition off insulin. It's going to be an exciting but nervous time for us.

Tuesday, November 2, 2010

Making contact

I have been finally able to make contact with some other families with children with the exact same mutation. One of them has already replied answering lots of my questions about them starting oral drugs. Such a blessing to have someone who has actually gone through it with their child to ask questions. Not just doctors who don't have a personal stake in things.