Bit bummed!

Erika took Scarlet in last week for another MRI and at the same time had a blood draw done for Von Willebrand. The scan is the same as last time which is good, there was one difference that was there the first time and they attributed it to the diabetic coma, it wasn't there in November but there's a little back this time (a fluid name that I'm pulling a blank on). So back to the neurologist in a few months to check on development, although she's doing just fine development wise right now. The big bummer is she tested positive for Von Willebrand, type 2b we're assuming since that's what Erika has. :(  It's an inherited bleeding disorder. Erika has it, Dave has it, Grandma B. has it.  So not only does she have diabetes she has the bleeding disorder, quite the bummer for a diabetic!!!! It does explain why she bleeds when she's teething, not a lot but there is definitely bleeding! It also explains the easy bruising when insulin shots are given. So over the years she will simply have bruises that seem to come out of nowhere. To this day Erika has bruises that can get huge and yet she has no clue where they came from. The poor kid! I babysat her today and she's either getting sick or teething. So she's on short lasting insulin since that triggers ketones without fail and sends her sugars skyrocketing.

On another note we are having the most gorgeous Spring we've had in a very, very long time! The daffodils are in full bloom, the tulips are in full bud so probably will start blooming soon. My honeyberries are blooming. The really bad part is the snowpack is pathetic this year so I have a feeling this will be a really bad summer water wise, unless we have a cool wet one. We'll see what the next several months bring! But I do think I'll be planting my lettuce soon!! Today was in the mid 60's and this weekend is supposed to be around 70! April weather in March.

The thought that has just really stuck with me is time reveals what the days conceal. I can think I'm doing so good but in reality I'm struggling inside to do what's right and if that struggle ends in defeat and not victory time will reveal that unwillingness for my Father's will to be done. Sure, for a time, the defeat can be hid but after a while it becomes quite obvious. I'm also very thankful for the assurance that no matter what happens, as long as I am willing for his will, then all will be work out exactly the way it should.

Tomorrow I'm going to be posting my garden pictures once again. :)

Cold, ear infection, diabetes....

What a week Scarlet is having! :(  She started getting sick with a cold this last week and it has now turned into an ear infection. Erika took her to the doctor today and they gave her an antibiotic. Unfortunately Amoxicillin apparently has a fair amount of sugar since her sugar levels are now around 300! On top of that she's had ketones all day ranging from small to large. Large is NOT good! Her breathing started getting rapid and she was getting the beginning signs of ketoacidosis. Erika has to give her short lasting insulin shots every two hours until the ketones are gone. It's going to be a long, long night!  So much for diabetes doing well! We sure are hoping that she has the temporary and not permanent diabetes!

For those that don't know, ketones happen when the body is breaking down it's own fat for energy instead of using insulin. Ketoacidosis is the beginning signs of the diabetic coma coming on. So it's been a pretty scary day for Blake and Erika! Last I heard the ketones were still fluctuating quite a bit but the ketoacidosis signs went away.

We believe part of the issue with Scarlet getting ketones so easily is that she's so small. She's a year old and 18 lbs. That's in the +/-20%, her height (26") is in the 1% range and head in the 38% range. She's really nicely proportioned but has obviously got the small size of my family!  She seems to get ketones if she's teething, gets her shots or is sick or a combination there of. Unfortunately she just got her shots last week so that may have made her more vulnerable.

Scarlet Update #2

We finally got the results for what type of diabetes that Scarlet has. It took 10 weeks and is indeed neonatal, she has a gene mutation that has led to it. Everything pointed to that but they needed to do the genetic testing to make sure. Next to no weight gain the last month in the womb, urinating A LOT, somewhat cranky over all but not horrible. The one thing that I would say sticks out is that she didn't smile real easy. She'd give a twitch of the lip but to REALLY smile and laugh, she rarely did that. She was sick almost all the time, she might have went a week at time without being sick. Her body just got to the point that it couldn't handle it anymore and when she got the flu from Teagan at 7 months it caused her ketones to build and sent her into a diabetic coma. I'm going to take a guess that it took so long due to the type of neonatal diabetes that she has. There is a 1 in 300,000 to 500,000 chance of neonatal happening so it's very rare and for being so rare there are 5 different types! She has the type that could possibly be temporary, but it's rare that it is temporary. I guess the typical age is around 18 months to 2 years that it goes away if it is temporary. But it could possibly come back when she gets older; it would act as type 2 diabetes. So it sounds like to me her body may still be making some insulin, unlike type 1 diabetics. If she were to ever get pregnant she would have gestational diabetes, of course that's only if it were temporary. She could possibly end up on an insulin pump if it doesn't go away. Even if it is temporary she will need to keep track of blood sugar her whole life.

She is such a happy little girl now! The only time she really has issues is when she's teething and sick, or gets her shots and is teething. Those two instances have triggered ketones. Then she's pretty cranky. Erika and Blake have done an absolute wonderful job with managing the diabetes. You learn to play with the long lasting insulin a bit if you know it's going to be an active day the next day. Give a little less so there's sugar to burn and then the sugar doesn't get near as low as it would have otherwise. Scarlet went to the babysitter at 160 the other day but by the time her morning nap came and went she was down to mid 50's! The babysitter then gives her food that will bump her sugar back up. It really doesn't take a lot though! Except, as in instances mentioned above, she rarely even needs the short lasting insulin. Probably because of the type of neonatal diabetes that it is.  Below is one of my favorite pictures so far! She is so HAPPY!!! (She's the black and white dress)