Appointment Update

Peyton saw her neurologist in Chapel Hill on Friday and wowed him with her new abilities.  She grabbed a toy he was holding and she was quite alert during the visit!  He was pleased with the small developmental steps she has taken.  We discussed the recent seizure increase and we have decided it is a good idea to increase her Onfi Dosage (Onfi is the only seizure med she currently takes).  She has gained some weight in the past 3 months and this could definitely be affecting her seizures so we are going to double her dose.  This will take about 6 weeks to complete.  We wean up her dosage by 1/2 a tablet every two weeks.  We started the increase on Saturday and maybe saw a tiny bit of improvement on Sunday, but this morning has been tough.  Please keep her in your prayers and pray the seizures slow back down again as we increase the meds.

We met the new dietitian and really really liked her.  She is enthusiastic and knows a lot about the diet and knows a lot about all the latest research for the keto diet.  We reviewed Peyton's current calories and we aren't going to make any changes right now except maybe trying more solid foods so she can improve her chewing skills.

These heavy seizure days are hard on her and hard on us, too.  Things have been going so well lately and BAM!!, the seizures act up.  I hate and despise seizures.  They are mean and awful and one of the worse things that happens during her seizures is that she smiles really really big, so it's not a real smile, it's a seizure smile and I hate it.  It just seems so cruel and I don't understand why that has to happen.  These are some bumps in the road and I know things will settle down, but the bumps seem harder now that we don't have the amount of bumps that we used to.  We keep adjusting our normal and the normal keeps changing.

So, lots of good, bad and ugly to go around, but overall, things are more positive.  I will leave you with a real non-seizure related smile she gave us as we were leaving for Chapel Hill on Friday.  These are the things that keep us moving forward.