Rasmussen's Encephalitis Confirmed in Pathology

There's that crooked grin!!

I wasn't so sure how to title today's blog, because so many GREAT things happened today, so I went with the one thing that touched me the most...the pathology results. I'll get to that in a minute...but first HORRRAYYY !!! Jessie is out of Intensive Care!! The PICU was great, but we are glad to be gone. The regular rooms are so much more private and comfortable and with much less activity.

Jessie is beginning to eat and drink!!! Horray!!! Although, we believe that she has lost some of her muscles that control swallowing, on the left side, so it is very scary for her to swallow, and she chokes sometime. They assure us that this can be overcome in therapy. I believe that she is learning to control this on her own already. She had part of a hot dog today and some mac'n cheese and she did pretty well with it. Watery liquids are the hardest for her.

Jessie got to see some folks back home last night on the webcam. She saw all three of her brother's teachers and their kids. Thanks Mrs. Moorehead, Mrs. Johnson, and Miss Huckabee. She really enjoyed the visit and so did we. What a great way to keep up with our Aledo friends.

Jessie got to talk to her brothers today as well. She smiled and cried. She misses them so much, and so do we.

I had all my hair cut off today. I figured if Jessie had to do it, then so would I. I'm quite handsome with the hairless look, if I do say so myself. I had to beg Kristi to not do it too. She was ready to hit the barber shop with me. I will post a picture of "Mr. Baldy Waldy" as Jessie would say.

Finally, and on a much more serious note, we got the pathology results of Jessie's brain tissue today. It was conclusive for Rasmussen's Encephalitis (RE) and a very severe case of it, especially in the occipital lobe (visual cortex).

You're probably thinking that is pretty insignificant since we already knew that she had RE. True, but Rasmussen's was only confired clinically (MRI, PET, EEG). It cannot be definitively confirmed without a brain tissue sample. We chose not to do a brain biopsy before surgery, because they are so unreliable. Good tissue can be right next to RE tissue, so it is very difficult to confirm even with an open-brain biopsy, not to mention the risk that you incur.

So, we relied on Dr. Chacon's (Cook Children's) and Dr. Vining's (Johns Hopkins) expertise to make the right diagnosis, and we made the hardest decision of our lives. No parent should have to make the decision to remove half of their child's brain. But we did, and today confirmed that we made the RIGHT decision. Do you see what a big deal that is? If the results had come back inconclusive, we would have had to live with that the rest of our lives. How could we live with that? Luckily we don't have to.

I would like to praise God tonight for guiding us through this awful journey and for giving us the peace of mind tonight that we so desperately needed. I would like to thank Him for all of you who have supported us and loved our family so that we could make it through each day.

I pray that the news tonight gives each one of you some peaceful rest tonight.

Cris