Well we've had another busy week. Reagan and Cole both had neurosurgery appointments with Dr. Myseros. We reviewed the CT results for Cole and he said, "he looks great - his ventricles are teeny tiny". Unfortunately there's nothing we can do to stop them from getting too small. There are programmable shunts, but our surgeon didn't choose to use one because they can cause additional complications. We discussed our concerns about Cole being exposed to too much radiation and Dr. Myseros said there's a new "quick MRI" technology available at Children's Hospital that is now available. It provides all the advantages of the CT and MRI without the radiation or anesthesia. One school of thought is that if there is a malfunction we would notice the symptoms so why expose him to the radiation if we know he doesn't have an issue. Dr. Myseros said the malfunctions can often happen so quickly that you end up in an emergent situation requiring surgery when a scan might catch it in advance so it can be watched more closely and planned to prevent more injury (or death). And with that, we will plan another visit with Cole next year for a quick MRI. Wow - a full year - what are we going to do with all our free time?!
This was Reagan's first appointment with Dr. Myseros since her surgeon, Dr. Yaun, left to take over the Neurosurgery Department at Children's in OK. He hammered me with questions about her history and reviewed the MRI from April. He is in agreement that her seizures are likely from the scar tissue from her original surgery. We did discuss a few areas of the brain that have spots of abnormality but he doesn't think those are the issue given they were there in her first MRI and she was seizure free for almost two years. He did sound hopeful that we will be able to avoid another brain surgery given the medication is currently controlling her seizures. Although he is happy with her current motor and cognitive function, he was unwilling to wager whether she will need to be medicated for life. He said he fully trusts Phil (Dr. Pearl). So we will continue with the plan to keep her on Trileptol for another year or so and then try to wean her. We also asked about electrical stimulation therapies and he said he isn't familiar with them but Dr. Sally (Sarah) Evans is very good and he trusts her opinion. He does support the constraint induced therapy program so we plan to move forward with that in March. He asked us to come back in a year. Wow - a full year - what are we going to do with all our free time?!
Great news for Reagan today - she graduated from Tots 2 to Tots 3 at Swim Kids Swim School. She was very excited to stand on the stool, ring the bell and pick a toy from the treasure chest. In case you're wondering what skills she mastered, she is now able to put her head under water, open her eyes and float on her back. Unfortunately we will need to take some time off to participate in the UVA rehab program but hope to get back on the schedule in April.
More to come next week!
No comments:
Post a Comment