It’s official…sadly, summer is over but the big sibs were all smiles when they headed off to school this morning and, even more importantly, were all smiles when they came home this afternoon. Rudy and I visited his classroom today and we really enjoyed meeting his new teachers and school nurse. He will start his first day bright and early tomorrow morning and because he’s back in Goleta, he won’t have a long bus ride anymore…he’ll be just a couple of minutes away from home! Yay! His annual IEP meeting won’t be until late September so any decision to pursue a blended schedule that would include time at La Patera (our neighborhood school) won’t be considered until then. We’ll have to wait and see. 🙂
Our last two weeks of summer were filled with a number of doctor appts and lots of “to do’s” but we managed to squeeze in a little last minute fun too…
Our appts with the endocrinologist, neurologist and cardiologist were all pretty routine. Rudy’s relatively new endocrinologist announced she is leaving the area so our appt with her was our last. I’m sad because I really like her but a new endocrinologist has already been hired to take Dr. C-V’s place and will be settled before Rudy’s next scheduled appt so he won’t skip a beat in his thyroid care.
You may recall that after Rudy’s febrile seizure episode in late June, we weaned him off Trileptal and started him on Depakene. Well, the Depakene gave him serious diarrhea. I thought maybe that would subside once Rudy’s body adjusted to it but we battled it for several weeks with no improvement so Rudy’s neurologist has switched him to phenobarbital. I have to admit that the switch to phenobarbital is concerning to me and Rolf as our only reference to the drug is “One Flew Over The Cuckoo’s Nest” but the pharmacist assured us it’s a pretty commonly prescribed barbiturate. We’re keeping a close eye on him as it, too, can have undesirable side effects including irritability, lethargy and behavioral changes but it’s really the only other option to treat febrile seizures so I’m praying his body responds well to it. He just started it this week.
Lastly, our visit with the cardiologist showed little to no change in Rudy’s heart function…no better, no worse. There is no plan to schedule a heart cath this fall but Dr. Harake would like us to touch base with Dr. Alejos at UCLA to discuss the heart transplant a bit more. Our consult with the heart clinic in May was supposed to include him but he was out of town at the time. Dr. Harake feels it would be helpful to talk with him directly as Dr. Alejos is the one with whom Dr. Harake has been communicating so we’ll seek to make that connection sometime soon. I was able to make appointments with the UCLA dentistry department AND Rudy’s ENT on the same day (yay!) so our next trip to UCLA will be on September 23rd.
So, maybe we’ll have a quiet school year (knock on wood!)…regardless of what is to come, I’m so grateful everyone got off to a good start today…
Happy School Year Everybody!!!