Back to the grind

I got a nice break over the weekend and took Tobin to NJ and NY for a family wedding. It was really odd to be traveling with just one child, no stroller, and lacking several bags full of diapers, bottles, meds, etc. It was also my first time on a plane in 2010 which is very weird for me, as I used to consider myself a frequent flyer! Tobin did great on the plane both times and was very patient and great at waiting for the fun (dancing and cake) to begin during the wedding. Apparently the ceremony is "boring" but he likes the part where they kiss at the end although he didn't quite understand why they needed to kiss. He then asked me when he is getting married and I said , "well, as soon as you find someone to marry I suggest you ask her (or him)". We'll see how that works out.

We were both very happy to see Jason and Oliver when we got home. Jason was making keto cheesecakes for Oliver for the week (and had already measured out tons of butter, oil, cereal, and miralax for the next few weeks, yay!). Oliver was asleep. He woke up shortly after we came home and had a seizure :( Not a great way to greet me but it's not his fault. he was very quiet but I just knew that he wasn't napping anymore so I went into his room and he was shaking and looked very scared. He had some very mild spasms around his face only and then burst out with full spasms /screaming a minute or so into it. Luckily his cluster only lasted a few minutes and ended on its own without any intervention needed from us. It's sad to say but if every seizure were this "easy" it would be a little easier for us to handle. The long drawn out hour long seizures are very hard to take and they take a big toll on Oliver and he's just exhausted the rest of the day. After yesterday's brief cluster he just snuggled up into me and lay very still. I was worried that something was wrong but after looking at him closer it seems he was just happy that I was back home. We had a nice long cuddle and then he started cooing and seemed ready to play for a bit while I made his dinner. We tried a new meal last night. Scrambled eggs with LOTS of butter and cream and a tiny bit of applesauce on the side. He did ok once we figured out that we need to puree the eggs to make them easier for him to eat.

Apparently, on Thursday as Oliver went in for his flu shot, he was found to have a minor ear infection. Most of the time the doctor wouldn't treat it but would watch it to see if it got worse. of course, since Oliver has neutropenia he insisted on antibiotics. We told him Oliver's neutropenia had pretty much "resolved" for now so he left it up to us whether we want to start the drugs. on Friday Oliver had a pretty nasty seizure that required an extra clonazepam dose so Jason decided to get the pills and try it. because of the diet, Oliver can't have regular sugary amox, so they put it in capsule form. Since he's been on the pills we can smell the antibiotic in his urine, which is weird and his keto stix (urine testing sticks) have been testing really low despite his diet being the same. So either the pills are changing his ketones because they aren't carb/sugar free or they are altering the color of the ketostix because it's coming out so concentrated in his urine. odd. We have a call into the keto team to figure it out. Hopefully once he is off the antibiotics and is feeling better we will see less seizures and get back on track with his diet...just in time for his 2nd flu shot (flu shot booster). So who knows if that shot on Thursday was the cause of the seizures. ARGH!

My goal is to get him off the clonazepam by Thanksgiving. I really want that drug gone (but we'll use it as our rescue med for now) on a daily basis. I don't want to make too many changes at once so we'll wait for him to come off the amox and for his 2nd flu shot to be done before we go taking away the clonazepam. I just don't know what it's actually doing and if it's helping or hurting at this point. I would also like to get rid of the vigab just to see what Oliver's "baseline" is in terms of seizure activity and development with only the diet in place. THen we'll decide if we need another medication or a diet adjustment.

So we're back at work, school, daycare and back to the grind but we all had a decent weekend. Jason enjoyed our free HBO all weekend long and Oliver got a lot of daddy time which he loves. Despite a few seizures he had 2 good therapy sessions on Saturday and did lots of cooing and talking to us last night.