We had a good visit yesterday with our neurologist at the Children’s hospital. I arrived early so we could knock out a couple of unfinished labs in preparation for the ketogenic hospitalization.
12:00 Depart! Enjoy a beautiful day driving, listening to our travel cd (thanks Barb), and singing. Landon joins in. Probably in an effort to drown me out. I completely understand.
2:40 Arrive. Circle multiple floors of the garage convinced I’ll find an open space before finally driving up to the 7th floor. Pack the boys in to their stroller, and realize we will need a different option very soon. They are so big!
2:55 Landon refused to pee last time, so we still needed his urine lab. When I rolled in the lab techs recognized us and were very relieved they didn’t have to draw blood this time. (Our boys are difficult, and Landon in particular tends to end up with multiple pokes by multiple people.) They are thankful we just need to bag Landon. I run the sink for a moment and tell him to think about that sound.
3:15 Time for a Pre-ketogenic diet EKG to establish a baseline. This went very well. It took far longer to hook them up than it did to get a test. The boys were relieved to have a quiet moment to stretch. Sorry boys, we can’t keep these stickers!
3:30 Cafeteria. I grab a snack, and make 3 phone calls trying to get their Synagis (RSV) medicine authorized, and shipped. That took 45 unsuccessful minutes. Not only are we having trouble with preauthorization (on a prescription they are 3 doses in to) but the pharmacy is having trouble separating the files and keeps authorizing Nolan but not Landon. Twin confusion!
4:15 Landon is still bagged and dry. I tell him to think about water falls. We head up to the appointment.
4:30 Neuro appointment. Somehow, the appointment was only booked for Nolan. Landon gets added of course. The twin aspect causes confusion again.
This was a routine neuro follow up, but we of course discuss the upcoming keto plan as well.
We discuss how great the boys have been doing since coming off of Topamax. Increased alert time, more vocalizing, better tone and more intentional movements. Landon demonstrates all of this. Nolan pretends to be asleep. Fortunately I have video to show him “talking”, smiling, and kicking on his piano.
We discuss their increased secretions and drooling since going on to Onfi. If you combine that with the recent congestion concerns, it is worth keeping an eye on, but not worth dropping or lessening Onfi yet.
We discuss recent seizure activity. I unfortunately had multiple videos I could provide of Nolan. I’m glad I caught things on video of course, as that is worth far more than my description. But the increased and changed seizure activity was disappointing. We make a plan to let Nolan try Keppra again, but want to wait so that we know whether or not the keto is helping. We can’t make multiple changes at once or it muddies the waters.
This part came as a surprise – Nolan technically failed his blood work last week. His liver function was abnormal, and a healthy liver is a pre-requisite to the ketogenic diet. The theory both the DR and I have is that his illness last week (if viral) caused the abnormal reading. If that’s the case, his liver is probably fine, and he is still a candidate…we just have to prove that is the case. So Nolan needs more blood work after all.
Landon’s blood work – couldn’t even be read. They had such a time getting it last week, that it hemolyzed. So…he also needs more blood work after all.
5:55 We show back up at the lab to get blood work for both boys. They are notoriously difficult patients, and it is 5 minutes until the lab closes. They are as thrilled to see us as you would expect.
6:20 The tech was as successful as anyone ever is, and has what appears to be good blood samples for both boys. Landon is still dry. So I get a “to go” sample kit and will try to get a sample on our way in next time. We load up and head back to the van.
8:30 Because of the timing, I need to stop and administer PM meds on the way home. Nolan is alert, loud, and smiley. Landon is wet. I am amused.
10:05 Home! Change the boys and “wipe off” the hospital. They are tuckered out and stretch in the most adorable way when they get in to their beds.
It was a long day, but we did the vest we could. (See what I did there?)
We had the vest day.
These are my vest jokes.
But you’re not here to see my mug – so here are the cutest patients around!
Thanks for keeping up with our boys! Next big updates will be the blood results, and how (and if) that impacts the keto plan.
Aunt Pam said:
Nancy/John Arnold said:
thanks for the Neuro Update…..love seeing the boys as they grow….continual prayers for a miracle….. ❤ ❤
They are so precious!!! You have the best sense of humor in a situation that is challenging. I commend you for keeping that sense of humor!! Nothing like a good laugh…and cute boys. Hang in there mama!
Lisa Lockhart said:
I really enjoy reading the info about the progress on your boys and family. It is uplifting to see that you and Justin are so positive with your difficult situations. I can see God in you!
Another amazing day in the life of the Awesome Twosome!!!