Kelly, Kate and I travelled down to Stanford Hospital in Palo Alto yesterday afternoon. We arrived early and had some time to 'get the lay of the land'.
We met with the Nurse Practitioner and Doctor and asked many questions. The upshot is that we're going to proceed with the diet. We are shooting to start on Monday Dec. 15th with a 3 day hospital stay at Stanford to get the diet going. There is a lot of training (for us) and observation/testing for Kate during our stay. Other than that, it sounds like a fairly 'low key' hospital stay (compared to what we're used to!). She won't be on monitors or confined to her bed, which is nice. Sounds like the worst part is not being able to feed her from Sunday afternoon until Monday (short starvation) when she has her first 'keto' formula.
One of the biggest challenges we face is weaning Kate off of breastfeeding. She has to be fully weaned onto regular formula before the diet starts. Obviously, this is a big decision and very emotional for Kelly (and I, to a degree). We are working to start weaning sometime in the next few days.
Kate has a swallowing study next Friday (12/5) to help determine if she has any issues with her swallowing reflex (she gags a lot on spit, medicine and milk). As long as the results don't indicate a need for a feeding tube (yikes!), we should be ready to start the diet on the 15th.
Kate's seizures recently have been very minor and some days we didn't notice any (others we noticed over 10). We feel that Keppra and phenobarb are doing an adequate job as we wait to start the diet.
Even with all the challenges, we know there is A LOT to be thankful for this Thanksgiving. One of those things is all of the amazing support our family has received this year... THANK YOU!!!
Happy Thanksgiving from the Mackuras!
17 years ago
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