It’s been a crazy week… and it’s not slowing down.
Last week was a mambo jumbo of activities for us making it one hectic week. I’m proud to say we survived it, though not without some issues. Still looking back, I think how much worse our week could have been but thankfully it wasn’t as bad as I originally thought it was.
Mid-week we had our MUSC check-up with Neurology for Laycie and Jackson. Laycie had a Pulmonary Appointment this day as well, but it was cancelled since she had not had her sleep study yet. Our Neurology appointment was scheduled together for her and Jack though and it went amazingly well.
I must stop here to say that I absolutely, totally and completely LOVE our neuro and the MUSC Children’s Pediatric Neurology Unit. We have been using this same office for 34 years now, as they were also my pediatric neurology team as well, though the doctors have since changed to be replaced by new neurologists. As a parent, we have been using this office for 11 years and though we’ve had ups and downs with care, changed neuro’s a few times, we have always had a wonderful experience with their office. Very rarely do we run into issue with them and that makes such a wonderful difference. The staff truly cares.
That said, we went into our appointment and I was ready to go to bat with my thoughts and ideals but that wasn’t needed at all! The doctor brought to point many of my thoughts before I could even mention them. He had recently cared for a family who’s children have severe issues with Breath Holding Spells with seizure, much like Jack suffers from. He saw my urgency for treatment of Jackson’s disorder and the same fears in this family that I have for my son and for Laycie who also has Epilepsy. He agreed that most likely Jackson’s Breath Holding Spells are a trigger for Epilepsy in him and he also agreed to continue treatment as needed, instead of removing medications.
Talk about God’s blessings! I completely felt them on this day! I left this appointment feeling like we finally had so many answers and a treatment plan that truly fit to us!
Our crazy day wasn’t over though, as that night we had a sleep study for Laycie at MUSC. The study was to check her for sleeping disorders and also do an updated EEG for our neuro. The study was from 7pm-6am and I feel she did really well. Some of the wiring was upsetting for her but she managed through it all. Daddy was there to pick us up bright and early the next day so we could head home. We are still waiting the results of this study to see how she is doing.
Later on Thursday, Laycie had two partial complex seizures happen unexpectedly. The toil of the busy day before hit her like a freight train. These are the first seizures we have noticed since her last breakthroughs last June and I feel they were directly related to the extra excitement for the week. There were no signs of them coming and I am hoping that her EEG showed some activity for the doctor the night before so that he can treat her appropriately.
Since Thursday, things have been busy at home. The week was relaxed. Sunday was a lazy day, with rain keeping us from getting much done.
Today, I’ve spent mostly on the phone. I had some business and personal calls to make, caught up with email, and just got things in order for our medical appointments. I did some odds and ends I needed to get done as well.
Tomorrow, Jackson has his first Hemotology appointment at MUSC. He frequently bleeds a lot from even the smallest of bumps so we are taking him in to see if there is some sort of issue. He bruises extremely easy from the smallest of bumps. If you didn’t know better you’d seriously think my sweet baby boy was abused and this concerns me greatly. So while we were at our Neurology appointment, the neuro referred us over to get him looked at.
So this has been our busy week update. So much is going on that it’s hard to keep up but we are managing. Please keep us in prayer for all of the issues above.