Day Two, Part One

Thank you all so much for your messages of support! It helps so much to know that we are not in this alone. A special shout-out to the fabulous women of the Preacher Mamas who put together an amazing care package for Micah and even some things for me--he's already had so much fun with what he's opened. Micah's Sunday school teacher also sent a special bag with things to open each day--thanks, Marlene!

Well, two of the three of us got a good night's sleep last night. Luckily for me, I was one of them! Micah also slept his usual 12 hours, even sleeping through one of the two vitals and blood sugar checks. David, on the other hand, had a rough night trying to get comfortable on the pull-out bed--not surprising. We can't both sleep bed-side, so I stayed at the Ronald McDonald house, hence the good sleep. It is a beautiful old house on a quiet street about two blocks from the hospital. A shuttle runs on-demand to and from the hospital, so I didn't have to walk late at night. My cosy room is on the third floor, with a bathroom right next door. The house also has a large kitchen and several other gathering spaces.

Micah's breakfast went much better than either of the first two meals--hooray! He ate the butter, cream, sausage and peaches very well. He has been pretty tired this morning so far, probably because of having eaten fewer calories yesterday, and probably also because he is in ketosis! This is what we are aiming for on the diet and means that his body has begun to burn fat for energy. We'll continue to monitor his blood sugar to make sure it doesn't go too low. The lethargy should abate in the next few days as his body gets used to this new way of getting energy and as his calorie intake returns to normal.

The biggest struggle this morning has been to get him to take his meds. He is used to having them "hidden" in applesauce, morning and night. I put hidden in quotes because the mixture ends up being less than half actual applesauce. He has a skewed impression of what applesauce should taste like. Since he can't have applesauce, or at least not much of it, and because his liquid meds have sugar in them, he has to take pills instead. So far we've tried adding the powder to his flavored water, but I think the pills make it really bitter, so he has not taken them well. We are going to try having him just swallow the pills--they aren't that large. We'll hope this goes better and doesn't take 15 minutes to do!

He has had two clusters of seizures this morning, but it's really much too early to tell whether the diet is doing anything. The attending epileptologist and her crew (a fellow, two residents and two interns, and yes, I think I kind of know the difference thanks to Grey's Anatomy, I'm sorry to admit) stopped by to do rounds--it's quite a room-full of people!

We're looking forward to having David's sister and her family visit from Madison, Wis. today. It will be great to see them again, and Micah will enjoy the diversion of having cousins around.

As we continue to be here, and see many, many sick children--children who have clearly had major surgery, or who walk the halls or are carried by their parents while hooked up to IV towers, children who are in the Neuro-Constant monitoring unit--I am grateful that our boy is doing pretty well right now. Yes, he has a major seizure disorder, but we're still in non-invasive territory. It puts our very real struggles in some perspective and makes me grateful for the health that Micah does enjoy at this point.