Tuesday, April 17, 2012

The Lo Down - from May 20, 2007


So a lot has happened since I last wrote. So much in fact that I am going to give it in bullet points as to speed things up...don’t worry, once I get caught up I will once again regale you with my Shakespearian wit. In the mean time...

1. The Ng-tube was coming out once a day, so we removed it to see how I would do on my own.
2. I gained enough weight while out of the tube to keep moving forward. However, if I don’t keep it up we will have to put in a g-tube, which is a pretty major surgery.
3. My legs are doing great. I went through a stage where I did not want to move my left leg, but that seems to have passed.
4.  I have made it through the transition of seizure meds. It looked good for about a week when I was seizure free, but all that changed on Mother’s Day. For five straight days I had a major seizure each day. They were some of the biggest I have ever had. Dr T gave us a new med that Daddy is supposed to give to me if they last over 4 minutes. It is a “back door” med, if you catch my drift, not fun. Daddy gave it to me once and it knocked me out for quite a while. Good news on this front...since Thursday I haven’t had one. Praise God!
5. To top it off I got a fever on Monday, which actually cold be the trigger of these big seizures. It lasted for a few days and gave me a weird rash on my face, back, and tummy. The fever is gone now, but I have some sores on my mouth that are causing me to not really want to eat much...which is pretty important for me to be doing.
6. Dr Fitch put me on an antibiotic to try and get rid of my fever, but it has caused me to have diarrhea, and like the sores on my mouth, not good for gaining weight. The di-di (Mommy’s term) has given me a tremendously bad rash on my bum, which, subsequently has made me MAD! Pretty much for the last 48-72 hours I have been one ticked off baby and have let my parents know it. I stay up screaming all night, and its not the good screaming like when you go to an Alice Copper concert either, it is the non-consolable, I’m ticked and not going to take it anymore screaming. Mommy and Daddy are REALLY tired, but hey they should have voted for Doolittle!
7. What we as a family are looking for: Complete healing. Strengthening of my mind and body. An end to all seizures. More immediately, healing of the sores on my mouth, a regained drive to eat and following through on that drive, stopping of the di-di and healing of the rash, and rest and peace to our house.

Thank you so much for all of your prayers and concern for my family. Not only do we greatly appreciate them, we desperately need them. May the Lord bless you and keep you.

Grace (I’m not Princess Di, I’m Princess Grace darn it!) Crocker 

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