Updates since last post:
· Progress
o Seizures— Better but still having Seizures. Otis has been on the ketogenic diet now for over a month and off Vigabatrin for about 3 weeks. His seizures are back down to 25-55 a day with an average of about 34 a day. They aren't where we want them to be yet...zero...but it is much better than the 200-300 a day that he was having while on the Vigabatrin. As far as number of seizures go he's about where he started before we started all treatments back in Sept. That last thought can be disheartening--however, he is doing MUCH better developmentally than he was in September.
o Development—Great strides. Otis is still behind on his development, but he is working hard and we are so proud of him.
§ He is holding his head up much better these days. He still needs support most of the time, but he is close to holding it up on his own!
§ He was checked out by world renown Ophthalmologist Linda Lawrence today as she visited the Kansas State School for the Blind. She was very encouraging, having only positive comments and prognoses for Otis. She said that she thinks he just needs some more time and guided practice in order to catch up visually. Our first Doctor visit that was 100% positive--what a great feeling!
§ I was washing bottle parts two nights ago when Kathy yelled for me to “come upstairs”. I wasn’t sure what was happening, but her voice was full of joyous wonder! I rounded the corner to Otis’s room to see Kathy reading a book to him and he had his hand on her mouth. He would take it off and put it back…he was reaching out to her with his hand--something he hadn’t EVER done. We’ve had times where he would have a hold of something very briefly, but nothing like this…it was AWESOME! So she wanted me to try. I sat and read to him and sure enough he started to reach for my mouth and grabbed onto my beard. He has since been reaching for things with that left arm regularly. It is wonderful.
o Cuteness—High levels of cuteness continue to pour out of Otis Flynn. We are now seeing smiles DAILY!
(we plan to post many more photos soon of our 6 month old boy, so please stay tuned...)
· Treatment
o He is still on the Ketogenic Diet (KetoCal formula AND baby food, made by carefully measuring and weighing quantities regular baby food with very specific amounts of oil, heavy cream, and/or butter)
o He was completely off all drugs from Dec. 16th to Dec. 31st.
o He started an anticonvulsant (zonegran) on Dec. 1st to take in conjunction with the Keto Diet.
o We are gradually increasing the dosage of the zonegran and he will be on his full dose Jan. 15th.
o After Otis is on the full dose for a few weeks we will reevaluate his progress.
· Christmas—We had a whirlwind Christmas spending Christmas Eve with family in Salina and Christmas day with family in Baldwin. It was great to see and hug our family. We are so happy to spend time with our family. We love you all so much.
· Outlook—Hopeful. We are so proud of Otis’s accomplishments. We are all working hard to adjust to our new “normal” and feel blessed daily for the support we get from all around. We feel supported by our friends, our family, our coworkers, and some people we've never met before. Through friends and friends of friends, we have heard of complete strangers to us who are praying and pulling for Otis. It is a roller coaster ride, one moment we are laughing and the next we are crying or vice-versa, but we have lots of love in our life. We share lots of love with the people we spend our time with and the people we are closest to...although some of you are far away, we feel your love. Thanks so much to you all!
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