I've been meaning to update the blog for quite a while now, but have been so busy! This will be a long post!
First off I am so happy to say that our grandson Charlie will be home more often now, and in December the guardianship is dissolved and his parents take permanent custody of him! The guardians live 5 hours away and did not allow us to have contact with him, so this is a very exciting and long-awaited development! We have all been praying throughout this ordeal. God is always faithful!! I will post pics below.
As far as the Ketogenic diet goes, we raised the fat:carb/protein ratio from 3:1 to 3.5:1 last Wednesday. The seizures are better than they were prediet in number, duration, and severity, but he still has multiple a day. We no longer count, but I would guess around 50-60 a day. The first 2-3 days after the ratio increase the seizures were very low and mild, and the focal seizures were pretty much gone. Then they went back up again, and I'm really not sure why. It could be that for 3 days before the ratio increase Levi was refusing bottles so he didn't get as many calories. We have been thinking all along that a calorie decrease may help the seizures. This is just one more instance that points to that.
He has decided that bottles and formula are a thing of the past. He refuses to take anything from a bottle, and will not take the formula at all. So he is drinking from a sippy cup and eating 4 solid meals a day! This is going very well, except we have not been able to meet his fluid requirement, but then we never have been able to. He is doing remarkably well with a cup, and each day his fluid intake increases.
He is sick today, so we are using "sick day" guidelines. This means he can actually drink dilute pedialyte (which he loves and can't have anymore) and we are hoping he will be able to take sugar free jello at mealtimes. Poor little guy threw up with his first bite of breakfast. So we are cuddling and relaxing today.
He's awake now, so I'll save the rest of the updates for later. Enjoy the pics below :)
First off I am so happy to say that our grandson Charlie will be home more often now, and in December the guardianship is dissolved and his parents take permanent custody of him! The guardians live 5 hours away and did not allow us to have contact with him, so this is a very exciting and long-awaited development! We have all been praying throughout this ordeal. God is always faithful!! I will post pics below.
As far as the Ketogenic diet goes, we raised the fat:carb/protein ratio from 3:1 to 3.5:1 last Wednesday. The seizures are better than they were prediet in number, duration, and severity, but he still has multiple a day. We no longer count, but I would guess around 50-60 a day. The first 2-3 days after the ratio increase the seizures were very low and mild, and the focal seizures were pretty much gone. Then they went back up again, and I'm really not sure why. It could be that for 3 days before the ratio increase Levi was refusing bottles so he didn't get as many calories. We have been thinking all along that a calorie decrease may help the seizures. This is just one more instance that points to that.
He has decided that bottles and formula are a thing of the past. He refuses to take anything from a bottle, and will not take the formula at all. So he is drinking from a sippy cup and eating 4 solid meals a day! This is going very well, except we have not been able to meet his fluid requirement, but then we never have been able to. He is doing remarkably well with a cup, and each day his fluid intake increases.
He is sick today, so we are using "sick day" guidelines. This means he can actually drink dilute pedialyte (which he loves and can't have anymore) and we are hoping he will be able to take sugar free jello at mealtimes. Poor little guy threw up with his first bite of breakfast. So we are cuddling and relaxing today.
He's awake now, so I'll save the rest of the updates for later. Enjoy the pics below :)
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