In the beginning........ yes, I borrowerd that line from one of the best written books known to man. It starts with the life of my little man, Corey. Corey is my grandbaby, born March 31, 2006 to my daughter Courtney. Corey has always been a very vibrant, happy, joyous & healthy baby up until he began having seizures one day without any warning. We have been at Cook's Childrens Hospital in Fort Worth for the past five weeks and we still do not have a diagnosis. In the beginning.....(see I knew I would use that line again) we arrived at Cook's at 10:00pm on a Wednesday night. By 3:30am Thursday morning he began to have a seizure. They perfomed a spinal tap and a catscan to assess the situation and try and find what was causing this to happen to his little body. By 6:00am he had a very strong seizure that lasted approximately 13 minutes. At this time they had to give him meds to stop the seizures that also stopped his breathing. That lead to us having to put him on the respirator. He was eventually coma induced to allow his brain to rest and avoid further damage. He was on two coma inducing meds along with two seizure controlling meds. As of last Friday, they have started lowering the Pentabarb (coma med) in hopes that he will wake up somewhat and be seizure free. Since Friday, he has made great progress in waking up and has start moving his body a little. As of yesterday, his eyes were fully open and his body movements were very strong. That brought great hope to our hearts as it was the first time we had seen his eyes or any body movement for 4-1/2 weeks. As with any illiness there will be bumps in the road - we encountered one of many at 11:30 last night. Corey began to have small seizures again. Rather than up his meds again, we have opted to try the Ketogenic Diet which works in most kids to control their seizures. We still have a lot to learn about this diet, but with all the diets I've tried in my 42 years, it will be a piece of cake (not literally)! We have been on an emotional roller coaster of not knowing where he may or may not progress. The doctors always tell you the worst and you always hope for the best.
I will continue to use his blog to provide daily updates on his recovery and I hope you visit the blog often.
Thanks to each and everyone of you that have offered up prayers and are continuing to pray - he is definately a precious child and we love him very much!
Reflections on Kendall’s Kindergarten Year
10 years ago
Thank you for setting up the blog to keep everyone posted. In our journey with Kendall, the blog has been a place to vent, and find encouragement...
ReplyDeleteAs I'm sure Liz told you, we have have been on the Ketogenic Diet for 7 months. We started it when Kendall had up to 100 seizures a day and failed 7 meds. It is very complicated, but when you have lots of family support, it is definitely doable! 2/3 of kids have seizure relief and 1/3 have seizures completely gone. Though it may take some time to work (it took us 6 weeks to see results)it is definitely worth it.
Please, please, please let me know if you need any help. We had great support with the diet from our dietician at Cooks, but found a lot of people (both in the ICU and floors) are not very familiar with it. Don't forget to remind EVERY SINGLE person who's new to his case that he's on it. Also, there is a ketogenic diet yahoo group that is amazingly helpful! And of course, the Charlie Foundation website. (and ask your dietician for a copy of the book, they have tons.)
OK, that was probably TMI...I'm just really passionate about the diet! Oh, and kids proving Dr.'s wrong :)
Corey (and your beautiful family) will remain in our prayers. Stay strong.
xoxoxox
Thank you Jocalyn. I am going to post Kendall's blog on Corey's if that is ok with you. Just reading Kendall's blog gave us great hope that things can and will get better. I will also keep Kendall in our prayers.
ReplyDeleteIt may take me a little bit to get her on there as I'm not really good at this. Trying to also get the column of links you have for support and medical information.
Thanks Courtney for letting me know of this page. We love all of you and never cease to pray for Corey and you all. God is a God who can not fail. We commit all matters into his hands. His grace will abound for Corey and you. God knows exactly what is needed and he will provide. Some great pics on here. We only wish we could be out there with you guys to help in any way. We are informing all, every time we get an update. "And we know that all things work together for good to them that love God, to them who the are called according to His purpose. (Romans 8:28)" ... We don't always understand why God allows things to happen the way they do sometimes, but we can know for sure, he has a plan and he is in complete control here. The Lord is nigh unto all them that call upon him, to all that call upon him in truth. He will fulfil the desire of them that fear him: he also will hear their cry, and will save them. (Psalm 145:18,19). We love yall and call on us anytime and know we are praying without ceasing. Terry Vickie and Jessica.
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