I'm sitting in the hospital room, next to my son. He has to stay flat on his back for another 2 1/2 hours before he can sit up and leave. Preventing a stroke from the IV in his groin.
So the Wada test showed that he does indeed have speech on his right side as well as the left. According to his neuro doc, that does mean he will have a "speech deficit" after the surgery. No clue how much and if he'll be able to talk at all. Just that he has speech on the right side.
Meanwhile, I'm looking for speech recognition programs and a device/tablet to get to go with it. We plan to use the next 2 weeks to record him saying certain things, and if he can't talk at all after the surgery, then he'll carry this tablet with him all the time and type what he wants to say. Then the computer will say what he types, IN HIS OWN VOICE.
Surgery in 2-3 weeks. I'll know exact date tomorrow. That's not much time to enjoy my son and his beautiful deep voice.
Anybody want to help me find a device and speech recognition program? Something cheap but that will do what we need it to do?
Help?
I took lots of footage and pix today. Will try to post tomorrow. Gotta get through today and handling what's to take place. Your continued good wishes and thoughts are appreciated.
Showing posts with label Children's Hospital. Show all posts
Showing posts with label Children's Hospital. Show all posts
Update for Weslee's epilepsy
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.
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.
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