So far so good! The boys were a bit more sleepy today. I was told that could happen as their body reacted, and sure enough they slept most of the morning. That also happens to Landon and Nolan after they’ve been overstimulated, and I would consider a routine day in the hospital with blood sugar, blood pressure, checkups, and frequent voices and lights over stimulation for these two. That said – they are of course handling it like champs!
Their ketones are being read from their urine, and they are now officially in the “large” category. (That’s the goal). So they are in ketosis.
Their bicarbonates did some strange things, but no one is sure why. In fact, their readings on Monday were so odd that the Drs think they had a bad reading. They are 24 hours in to the diet, and their levels are evening out nicely. So well in fact, they are going to stop checking blood sugar, so that will save their sweet little fingers and toes from being poked every 4 hours.
The boys saw PT today and got in some good stretching. I asked about an incline stander, and she gave me some good leads to discuss with our local outpatient therapy.
Speech also came by. Lots of good news here. I’ve expressed that one of our goals is to get back to feeding the boys by mouth for a snack or two, or a small meal each day. They are fully capable, but are out of practice. So we will continue to practice. I have been pleasantly surprised by what some of our feeding options will be. Keeping meals “in ratio” is crucial. The fat and carbs are measured down to the tenth of a gram. They are allowed to have items with carbs more than I realized, but we’ll be adding in fats to balance them out, using things like butter, oils, or creams.
Today the boys had applesauce with coconut oil. Tomorrow’s treat might be avocado (which naturally falls within their ratio) thinned with a little water.
They had their vision check up to keep us in compliance with Sabril requirements.
Respiratory therapy checked in.
They also got baths.
Here are a few photos of my heroes, and my first finished product for Crochet for Lissencephaly! (If you don’t know what I’m talking about, click here.)