Not The Party We Expected...

Taylor had an okay night last night. She woke many times crying but as soon as I plugged the soother back in she settled right away. I feel 100% better than yesterday. Had more than 4 hrs of sleep, showered, and got a latte and breakfast downstairs! All the makings of a good morning. What surprised me though is that Taylor went back to sleep this morning and slept oh so peacefully until nearly one o'clock! She was awake for a little over half an hour then she fell asleep again. She slept alot today. Not sure if she's just catching up, or if it's something else?


While she was sleeping, the pediatrician came to see me. That was an interesting conversation. The first part was around figuring out what is responsible for Taylor's cries of pain. She said that the final report from the ultrasound was back and the only thing it indicated was that the texture of the liver looks consistent with it being inflamed. She talked to the GI (gastrointestinal) people and asked if they ever see that in kids who are on the ketogenic diet, they said no. They said what they do see sometimes is increased fat around the liver. She is going to try and sit down with the Radiologist to look at the ultrasound again and determine if that could be what they're seeing, versus inflammation. One of the things that the bloodwork on Thursday was run for was liver enzymes, which came back normal. She wants to repeat it tomorrow, in case something was just starting to happen and hadn't shown up yet in the blood.

The second part of my talk with the pediatrician was in figuring out why Taylor has stopped eating and drinking. She wants to have the OT come down on Monday to try to feed Taylor orally and observe what she's doing. Another interesting thing she said was that some kids who are aspirating (taking food or fluids into the lungs) sense that something isn't right and will just stop eating. I told her that there was a question some time ago as to whether or not Taylor was aspirating but a swallow study was done and it confirmed that she wasn't. This may need to be re-investigated. She may also get the GI docs involved to look at whether or not there is inflammation in the esophagus causing pain when Taylor eats. I believe this would involve a scope.

Grandma & Grandpa came to visit this afternoon and check in on the little pumpkin. We were supposed to be having a birthday party at home today for Taylor, just a small one with my parents and a couple of Taylor's little friends. Being in hospital is certainly not the party we were expecting to be having today! I have a beautiful dress that I've been saving for the occasion...a sleeper is not what she was supposed to be wearing! Grandma & Grandpa brought her birthday present here instead, thank you so much for the beautiful clothes and the visit. Can't wait to get her out of hospital attire and into the cute stuff!


Kim, Martin & Sophie also came by today. Sophie was expecting to go to Taylor's birthday party today. She was kinda sad it was cancelled so she thought she should bring the party here. They arrived with her present, a birthday balloon, and cupcakes. I'm still in shock over how dainty Sophie was sitting in the chair eating her cupcake. She ever so gingerly ate the sprinkles one by one, then gently licked all the icing off and delicately ate the cupcake. I've never seen a toddler eat a cupcake so nicely before. It's like she took her time so that she could savour every single morsel. I should have taken a picture! Then, standing next to the crib on a stool, Sophie leaned closer to Taylor and sang "Happy Birthday" all by herself with 5 adults standing around watching her. SO impressed! It was very sweet. Thanks for the visit you guys and the adorable purple track suit.


Later this afternoon Dr. Bello stopped in again. He was pleased to see Taylor a little more contented, and having fewer seizures. We should not need to start Clonazepam to bring the seizures down. I asked him how the current EEG compares to the one before she started the Ketogenic diet. He said it shows perhaps a 20-30% improvement. Clinically though (the seizures that we actually see), we have seen about a 75% improvement.

I met my friend Carol through this crazy journey we're on, whose daughter Annika has the same seizure disorder, global developmental delays, etc. Annika is also Dr. Bello's patient, also on the Ketogenic Diet, her and Taylor are so very similar and Taylor has been following Annika's path. In my conversation today with Dr. Bello we were talking about this a little bit and he brought up a very interesting piece of information. A couple of his patients from when he was in Minnesota, who were very similar to Annika & Taylor and had no diagnosis like Annika & Taylor, were put on a drug used to treat Parkinson's Disease. With it they achieved significant seizure improvement, and significant developmental improvement. This sounds like a very huge piece of hope for us. He's going to set up a meeting with us and I guess we'll soon find out more. I am SO intrigued.

Carol came by tonight to visit and I shared this with her, she is also very excited to hear more! She brought me some yummy looking leftovers which will be my supper tomorrow, halloween candies, microwave popcorn, a drink and a piece of homemade apple pie. Honestly Carol, how do you have the time?! You continually amaze me with all that you do. Oh, and by the way...YUMMM...ate the apple pie tonight with my tea. Your pastry is divine.