We met with his 2 epileptologists yesterday, along with hospital's rehab doctors, hospital child life coordinator, and his neurosurgeon. Several things. Because of his rapid degeneration, they are concerned about Rasmussen's encephalitis so waiting for results of Thursday's 3T MRI to see if that's a possibility. If so, will need to do surgery quickly.
That MRI (it's a very high resolution MRI, done at a different hospital) will
also show if damage on left side (seizures happening on right frontal lobe).
Also, 95% of people withOUT epilepsy have speech only on one side. It's slightly more
common in epileptics to have speech on both sides. Weslee is right handed so his
speech should only be on left. But because of his speech regression, concerned
that he might also have speech on his right. Going to do a "Wada Test" to
determine that. It'll take 4-6 weeks before that can happen, although I'm
pushing for quicker.
The epileptologists said this is one of the more complicated cases they've
seen, with many layers and quick progression.
Talking about a hemispherectomy (see: http://www.youtube.com/watch?v=Qckrx9DdNfg and http://www.youtube.com/watch?v=rsHpXNIgobI, and another story: http://www.youtube.com/watch?v=D0njlDSFie4 and http://www.youtube.com/watch?v=pVTWDuwDkoc), whether or not the grid mapping is done.
Basically, he could be absolutely fine after the surgery (regarding epilepsy)
or he could be a vegetable.
Make-A-Wish Colorado ... we had to go into town this past Saturday so we went to Best Buy so Weslee could spend his MAW gift card on movies. Had a tonic clonic (grand mal) seizure in the store. Huge thank you to the passersby who stopped and asked if they could help. I'm thinking we'll spend the rest of the gift card online.
Keeping him safe and happy while being confined to the house is difficult, but my priority. I need to find someone in this area to take over the Friday Farmer's Market ... perhaps even change it to a different day. People can still special-order baked goods, eggs, and produce, and pickup by appointment. I do still intend to bake but once he's in the hospital, it's going to be difficult to do from the hospital room!
Once Weslee's in the hospital for surgery, people can arrange to pickup eggs and produce from Hubby. No baked goods because he's really not good at that!
Your continued support and healing thoughts are appreciated. Thanks.
BTW, I'm falling apart.