Clinic visit

On the 20th F had a review appointment at the hospital. I was very happy to be able to tell the doctor how well things have been going since transferring to oral medication. She has been able to eat a lot more and has great BGL's. I don't have to restrict how much fruit she eats or "carb count" every bit. F is loving eat. Even refusing more pasta, which totally unheard of while on insulin.
Today we were able to give her all sorts of Christmas goodies and she loved it.
Our next appointment is at the end of January.

Merry Christmas!!

It's most probably a bit late in the day to wish everyone a Merry Christmas but I have finally had time to sit at the computer.
It has been a very full day of family meals and DD's unwrapping numerous gifts. It fun to see which presents make a real impact. It's sometimes the most simple (bubble mix) and I'm left wondering why we go to the effort of getting the some of the other bigger gifts.

A day full of ....

Busyness.
Today my mum came to visit and we spent the morning doing Christmas shopping. Then it was a quick lunch with the children in the food court and one more store. All the shopping meant that we had to go directly to F's appointment. Nana entertained the other DD's at the local library.

Good news.
The appointment for F was with the Physio and Speech & Language Pathologist at the Child Health Centre. They are happy with how her gross motor skills have come along since first seeing her at 7 months. She wouldn't take weight through her legs at all. She wouldn't bounce when held standing on my lap but now she is walking and crawling up stairs. Only slightly behind "normal".
I still have some things to do at home with her to help her wih her fine motor skills and to actually get her "talking". I think she will be fine. Now that her diabetes is diagnosed and better controlled on the oral drugs she is healthier and happier.

Bad behaviour.
Taking 4 children to a shopping centre for 4 hours lends itself to all sorts of opportun9ities for the DD to misbehave. I was reminded why I don't do it often. I was also remind why my kids are banned from standing on the edge of the trolley. A bad accident was very narrowly averted.
There were times when I was reminded that they can behave will but they were few.
It is times like these I question my parenting skill and just have to pray to strength.

Bathroom nearly complete

Our bathroom saga is nearly over. Everything looks great and there is just a couples of things to finish off. DH needs to do some painting over the Christmas break.
It has been an expensive renovation. Paying twice is never a good idea but the bad job done before is now in the past.

Things going well

It is now 3 weeks since I went into hospital with DD#4. F's treatment is continuing to go well. Her blood glucose levels have been great. I no longer have to starve her to keep her levels in check. It been great to not have to worry if she grabs a piece of fruit herself.
I'm having to get used to not needing to have her BGL at 7 or more at bed time. It is not going to go down during the night like when she was treated with insulin.

When F was diagnosed I couldn't work out what good God could have in His plan for us with years of diabetes ahead. But we have had our own miracle in this new treatment and I am so thankful. I just want everyone who could benefit from this treatment to find out about it.
Even the support we have received from our church has really shown God's love for our family.

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.

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.

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.

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.

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.

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.

Try not to catch

DD#3 is sick and I really hope that #4 doesn't get it. E has slept for for nearly 24 hours. I don't think that would go well with diabetes. Sure to bad things to glucose levels.
The kids are going a bit stir crazy with all the wet weather too. I'm glad that DH is on holidays this week so he can occupy them a bit.

More hypos, more doctors

F has been having a hypo nearly every day for the last 3 weeks. Not bad but when I treat them she ends up too high. Just frustrating really.
We went to the GP today to talk about how I'm not dealing with the new diagnosis very well. My emotions are not going so well. I get anxious thinking about transferring her from insulin to oral drugs. I don't feel like the doctors are willing to talk to me about her treatment.

Anxious wait?

Since I last posted I have had a couple of conversations with a Dr at the Diabetes Centre. It seems that F's diabetes might be able to be treated with oral drugs instead of a life of needles.
I have done heaps of research about the KCJ11 mutation that she has. I'm so glad for my studies, both have been very handy for this research.
Now we have wait to do the transition. The Dr's only wanted discuss options in December but I wanted to make a move earlier. Now that they have agreed I got nervous.
So we covet your prayers as we wait and then that the transition goes well and works.

Different direction

Well, life has taken a little bit of a different direction since I first posted here. My youngest DD was diagnosed with Type 1 diabetes 2 days before 9 m.o. So lots of updates here will reflect our life with diabetes.

Today, her diagnosis was changed slightly. I had pushed for some genetic testing because of her early onset of symptoms. I was given the results today. She most likely has a form of Permanent Neonatal Diabetes Mellitus. I am trying to get my head around this information, even though I suspected it.

I now feel like I need to find out ALL about this type of diabetes right now!