The past week has been a whirlwind of appointments for Brady. I've been working in the weight room every day until noon, and we've tried to schedule most of our appointments in the afternoon. Ali and I have talked often about how fortunate we are to have some flexibility with our schedules. We don't know how two parents working full time would be able to make it all happen.
Brady had an EEG test last Monday. The nurse placed 28 electrodes on his head about two inches apart. Each electrode was dipped in a conductive jelly. She then placed some cotton around each probe to act as hair and then taped them in place. She then wrapped his head with a cloth bandage to hold everything together and connected him to a computer monitor and camera. This process took about 15 minutes.
She then recorded his brain activity for two hours. The nurse made notes any time he moved or talked. Brady fell asleep on my chest for around 30 minutes. The rest of the time he was laughing and cooing.
We were supposed to meet with the neurologist last Tuesday to go over the test results. She had a family emergency and needed to reschedule our appointment. However, she called us to let us know that his test came back perfect. This means we might be able to start weening Brady off his seizure medicine in the near future.
We met with a physical therapist from Gillette last Tuesday. She worked on Brady's arms and legs. She also worked on him rolling from front to back and back to front. She sat him up and tilted his body to the side to work on neck strength and reflexes. She was impressed with Brady's progress from the last time she saw him.
On Friday we went to Amplatz for Brady's four month checkup.
We first met with a physical therapist who evaluated Brady. She said Brady had some tone on the left side of his body, but it was minimal. She was very impressed with how much he was laughing and talking.
We then took Brady downstairs for a swallow study. They started by feeding him a liquid with the same consistency as our thickener at home. They used an x-ray machine to take quick pictures of him while he was eating. It was interesting to watch the sucking movement several times before he actually swallowed something. We could watch the fluid moving from the back of his mouth and down his esophagus. Everything looked great. They then moved to a liquid with no thickener. Brady also took that without any problems. They then fed him some rice cereal from a spoon and he did that perfectly as well.
They recommended that we could try feeding him milk without the thickener. We tried that on Saturday, but it seemed like Brady had more reflux issues (the doctors warned us about that). We went back to the thickener on Sunday and he seems to be eating better again.
After the swallow study, we met with two neonatologists who worked with Brady during his hospital stay. They gave us the most positive report we've received to date. They aren't at all concerned about the dark spot on the back of his head. They don't think he'll have any vision problems at all from that injury.
They explained that the brain in that location has a lot of plasticity and recovers from injuries very well. Brady did see an eye doctor two weeks ago and everything is perfect at this point. We will meet again with an eye doctor in 6 months just to be proactive with any possible vision concerns.
They are more concerned about the dark spot on the right side of his brain. The right side of the brain controls the left side of the body. In all of our other appointments, we've heard about increased tone in all four limbs. On Friday they said it was only on the left side and it was only a very slight difference. Ali and I have noticed that Brady's left eye also seems to be droopier at times (especially when he is tired). We don't know what this means for his long term development, but we'll continue to learn more through therapy and our observations.
Yesterday we met with Brady's pediatrician. Once again, he was very impressed with Brady's progress from his last appointment. He said cognitive development is most important at this point and Brady was showing off for him (talking, cooing, laughing, etc.). He also said Brady's tone was minimal on the left side.
We are going to start feeding Brady rice cereal this week. We are also going to reduce his overnight feedings by one hour each week. The goal is to eventually get him eating enough on his own to get rid of his feeding tube.
Today we met with the therapist from the school district. She also was impressed with how Brady is looking and acting. Brady is bringing both of his hands together, bringing his hands to his mouth, grabbing at toys, etc.
All in all, it was a busy week filled with lots of hope. We fully believe in the power of prayer and continue to be amazed at Brady's progress. We can't thank you enough for all of your love and support.
Have a fun and relaxing (and cool) 4th of July!
With love,
Tyler, Ali, Ava, Casey and Brady
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