Sunday, January 13, 2013

Leah update

Last Thursday morning I watched a miracle happen. It was 3:00 in the morning and Leah was at her worst. She was seizing over and over and her breathing was getting worse. Right when the doctors were getting ready to put her on a breathing machine, she all of a sudden completely stopped seizing and her breathing got better. I witnessed a miracle.

Another miracle I have witnessed is how we were inspired last year to put Leah on the ketogenic diet and today she is back on the ketogenic diet. Yes, she is back on the diet. First time she got on it I had to fight and fight Dr. Morita to put Leah on the diet and now last Friday Dr. Morita walked into ICU and looked me in the eyes and said "let's put Leah back on the diet". I couldn't believe my ears. The doctor that wouldn't put her on the diet is now telling me to put her on the diet, I was blown away. There was a reason we were inspired to put her on the diet. God knows what's best for Leah!

So we are back on the diet. She is now receiving it through a feeding tube. We are thrilled!!! Yes, Leah's body at times had a hard time on the diet. They are investigating why she had such high levels of calcium on the diet. An endocrinologist is doing some blood work on that and also looking into why she got her fractures. Neurology is also having some more genetic testing done. I thought we have exhausted all genetic testing but apparently not. She is also having a swallow test done to see if it's safe for her to drink a bottle.

Honestly, we are holding up well. We have been through the worst hell of our lives this past year. We can seriously handle anything. We are exhausted and we really want Leah home and we do want our life to continue. This is harder on our kids than it is for me and Chad, they want life back to normal. But overall they have been amazing kids. I told my kids we will take them on a big vacation when things settle. I also told them that they are stronger people because of this challenge and that if they can get through this challenge they can handle anything in life. They said "yeah mom and now we can help other people through their challenges". That comment made me so proud of them!

Leah is on an uphill for now. I am so grateful for all the prayers in her behalf. The prognosis is probably not good for Leah. We still don't know what's wrong but the doctors say the outcome will probably not be good. We are going to give her the best life possible until that day comes. The ketogenic diet gave her the best life. The doctors know that the diet worked for Leah and they saw her come back to us when she was on the diet. Medications don't work for Leah, who knows why.

So we continue on...with our chin up! Life has been hard but we can feel the love and prayers from all of you. Thank you so much!

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