Update

Hi everyone! Darcy is making great progress with the change over from insulin to oral meds. We still need to keep a close eye on her sugar levels as she has been going too low lately. For those of you who remember the lovely time when your little one drops the midnight feed, we are pretty much there but are having to make sure she is up and force her to feed as this is a prime time for her levels to drop too low. Oh, how we would love to just sleep... we will be starting weaning soon as hopefully by having her eat in the evening might give her enough fuel to last longer through the night. As well Darcy's oral medication is hard to get a hold of ( one pharmacutical co in the UK can will manufacture it ) and it has a very short shelf life (about 3 weeks) so I will have to give her crushed tablets when she is in Canada so she needs to be ready and able to eat!

As a little family outing we went to a zoo/ animal park for rescued animals last weekend, it rained and was freezing but we had no ques! We saw the tigers and wolves and elephants but the monkeys and gorillas ect. were all inside staying warm and dry.

The weather has improved now and we have some lovely sun shine which is just what we need as we now have an allotment plot to grow our own veg! We have been on a waiting list for one as they were full up and couldn't of been happier when we were told that some poor fella has done his back in and can't keep up the plot. We will take it slow the first year and just grow the easy stuff, we will keep you posted on the fruits of our labour.


Hopefully I can load some pictures on this blog it wouldn't let me last time. Nope and I even tried adjusting my firewall not sure what is up if anyone has any suggestions drop me a line.

Progress report

Darcy and I spent 2 days in Hospital last week. She was starting her new medication and as they didn't know what her reaction would be we had to be there for observation and for quick action in case she needed a glucose drip. She was ready for it all but didn't need it in the end. The good news is after 5 days on the new medication we are now able to drop her insulin one unit!

Darcy is 1 in 2 Billion!

Darcy is 1 in 2 billion. We have just found out that she has a condition called Monogenic diabetes, which is a mutation (R201H) on the KCNJ11 gene, this means one or two things, firstly her cells can not release the insulin that she produces and possibly as well she can not produce enough insulin for normal regulation of blood sugars. This disorder is very rare and even more so because of her age at illness (9 weeks). She is the 4th person in the World to have been diagnosed with this under the age of 6 months. She is new territory for all of the Dr's looking after her and luckily for us the research centre that advises and discovered this form of diabetes is based in Exeter. Please look at this link for more information http://www.projects.ex.ac.uk/diabetesgenes/
Here is what has happened to date:

• Feb 4th I brought her into hospital, she wasn't well I could tell she was dehydrated and her breathing was rapid.
• They thought she had a chest infection which was going undetected, as she would no longer feed she needed to be put on a drip, at this time they took a blood sample for a blood gases test.
• She had a chest x-ray and a second blood sample as the Dr did not believe the 1st set of results from her blood gases test.
• The 2nd test showed and confirmed the results of the first her blood pH was life threateningly acidic and she was in an advanced stage of Diabetic Ketoacidosis
• She started to undergo treatment for Ketoacidosis, this consisted of slow re hydration and electrolyte replacement, insulin being administered, monitoring of all fluids leaving her, hourly blood glucose monitoring and regular blood gases testing,a s well as monitoring all of her vital signs.
• Darcy recovered and we spent the next 8 days in hospital getting her stable and preparing for the care that she would require at home. (twice daily insulin, regular blood glucose monitoring and the occasional fast acting extra insulin injection)
• All the while this is happening, Dan is waiting for results from his MRI as he had a mild stroke in Jan and we had no idea what might be needed for his treatment. Fortunately for us he has what is known as a TIA or mini stroke and a migraine at the same time, he is fine and had no further complications.

It has taken almost 3 weeks from discharge for us to get the genetic results and are relieved by what they show, it means that starting next week we will be trying to move Darcy off of the insulin onto oral medication. Hopefully we will be successful, not everyone is but we won't know until about 5 weeks after starting the change over.

In the mean time she is a happy little girl who is quickly putting on the weight she lost. Her big sister Holly is very quick to let others know that her little sister is not well , and is convinced her current cold is worth a trip to the hospital . Lets just say they have a fantastic play room on the ward we were on and Holly would like nothing better than to spend all day there!

I am sure you can imagine our life is a bit hectic at the moment so we can't get in touch personally with everyone which is why I have put the info on to a blog (when I got a spare minute). If you do have any questions don't hesitate to drop us a line and we will get back to you when we can !

A HUGE THANK YOU TO ALL WHO HAVE SUPPORTED US AND HELPED OUT DURING THIS DIFFICULT TIME ! YOU KNOW WHO YOU ARE AND WE COULDN'T OF MANAGED WITH OUT YOU !