From 3 to 5

Warren and I have had a huge weight lifted off our shoulders with the knowledge that Alyssa is able to maintain her blood sugar at an acceptable level for up to 4 hours and ready to see how she could go up to 5. As I said yesterday, due to the vaccination, we didn’t want to push Alyssa last night in case she wasn’t well but she had been coping really well after her immunisation with no obvious issues, so when she slept past 4 hours we tested her blood sugar levels at 4 1/4 hours and it was in the high 4s so when she settled we decided to test again 15 minutes later and her levels didn’t change much.

After she’d fed and fallen back asleep, we let her go past 4 hours again this morning and her levels actually rose again instead of going down. Alyssa has actually maintained her levels up to 4 3/4 hours which is just awesome.

Tonight we’ve put her to bed at about 11, having fed her at 10, so we’ll set the alarm for 3am (five hours after the last feed) and see what her levels are like. We’re not too keen on pushing it past 5 hours and it’s likely she won’t last much longer than that without getting hungry but to think she’s surviving fasting for up to 5 hours is such a tremendous bonus in our situation.

Today was so calm without the stress of watching the clock for that 3 hour mark. She’d naturally start looking for a feed well before 5 hours was up, so knowing we had that much time before needing to worry was just wonderful. I’m very confident that if she manages to sleep right through until 3am that her blood sugars will be fine and we’ve decided that we are willing to go tube (naso-gastric) free as we haven’t used it, other than for her antibiotics which she will take orally, in two days now.

It does make you start to wonder what this genetics testing will reveal though!

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7 responses to “From 3 to 5

  1. Great news. Is it possible she does not have GSD? If so what caused all the problems?

  2. It is entirely possible and this all leads us to wonder but until we get the genetic testing back we can’t risk anything other than the strict management plan for her feeding. There’s still something wrong with her liver so if it isn’t GSD, we can only hope it’s not something worse…

  3. That would be an amazing weight off your shoulders, not having to watch the clock so often!

    Hopefully you’ll get some answers soon.

  4. That’s such good news that you don’t need to clock watch every 3 hours anymore!

    Be interesting to see what the test results show

  5. Yes something must not be right even if it is not GSD

  6. In East Augusta now but made sure I saved the web page so I could check how Alyssa is going. So please that she seems to be going over 4 hours which is the norm for babies. Genetics is very weird and I hope you don’t have to wait too much longer to hear the results.

  7. Fingers Crossed

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