All that to say, he's ready to go home!
The seizures? .... I know that's what you really want to know about, isn't it? ;)
Eh. Could be better. Could be a lot better. Luke usually doesn't get too upset when he seizes. A little foggy...a little out of it. Only twice can I remember him crying hysterically over them. Today was one of them. Oh yea, it was a doozie. Usually I count them....Today I lost count. The cluster seemed to go on and on. Luke screaming, me crying and the poor dietician just standing there. She had come to give her last instructions and say goodbye. I appreciate her so much and have learned a great deal from her the last two days. I had envisioned giving her a big hug and a great big "I think we're on our way to seizure freedom" smile by now.......
Instead, I'm standing there with a seizing child and can't hear a word she is saying cause my baby is screaming so loud. This post is for those of you who like the raw honesty. There it is.
So, we wait and we pray and we go home with high hopes that his new menu will help.
Did I mention we need a miracle? We do. Infantile Spasms aren't something you can just be treated for and then be on your merry way. The more we learn about it and the more we see Luke suffer from it, the more we realize that whenever and however it happens, seizure freedom will be a miracle.
Thank you to each of you has prayed this week. Really thankful Luke is tolerating the diet and that we get to go home this soon! Still feeling a lot of peace......and hope.
Hi and I'm glad I found your blog. My little one is doing the ACTH now with good results, but not completly seizure free. I'm expecting that we'll probably try the keto diet next, so thanks so much for the info. I hope and pray this helps your sweet Luke. I hate so much to hear he had such a bad cluster...
ReplyDeleteHi Kristi, I just found your blog but Mark and I have been praying for your boys since birth! Just wanted to reconnect with you and tell you that. We love your famiy very much and have supported your parents on the mission field now, since 1993! Can't believe how time flies. So sorry for all your trials with Luke but God is giving you a TESTIMONY! Mark was given 3-6 months to live at the age of 19 (Football Captain, in the prime of his health). He was healed in the hospital, the night before major surgery to remove the masses surrounding his heart and lungs. They never did that surgery. This TESTIMONY launched his ministry at 20 years of age and we've been married now for 28 years! So, be encouraged dear, God is giving Luke his TESTIMONY! I love you. Susie
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