After the flurry of appointments a couple of weeks ago, things have settled down a little bit. We're really enjoying our time together this summer as a new family of five. We've spent a lot of time around water and have enjoyed a number of gatherings with family and friends. Brady has done remarkably well considering we haven't had a consistent schedule, and most of his naps have taken place in a car seat moving from one summer activity to the next.
About a week ago we received a message from our home care nurse telling us that Brady has reached the point where she no longer needs to visit. Ali is happy to have one less appointment to schedule. :)
We finally had our follow up appointment with the neurologist to go over the EEG results. She said there were no signs of seizures during the two hour test. In addition to seizures, they look for symmetry in brain waves, and there was some abnormal activity due to the injuries in his brain. The neurologist said she expected that to occur and she's not overly concerned by it.
The last time she saw Brady was about a month ago, and she was amazed at how much better he looked. She said he only had minor tone issues in his wrists and ankles, and she was impressed by how well he moved and interacted with her.
The neurologist said we can start weening Brady off Keppra (his anti-seizure medicine). We have moved from .5 ml twice a day to only once per day. We will eliminate it completely in three weeks.
We also started reducing Brady's overnight feeding assistance. Previously, Brady was connected to the feeding machine for 12 hours each night. We are reducing it by one hour every week.
We're hoping that reducing the nightly feeding amount will improve the amount he eats by bottle during the day. We've noticed that Brady isn't very hungry in the mornings. It makes sense that he wouldn't want to drink milk when he wakes up because he's being fed the entire time he's sleeping.
The biggest advantage to his overnight feeding is that Brady has slept through the night since he was in the hospital (sometimes we need to wake him up after 13 or 14 hours of sleep). Once again, this makes sense because he never wakes up hungry during the night.
We started feeding Brady rice cereal last week and will start introducing new foods every week from now on. Brady does a good job eating solid foods and is also doing much better with his bottle feeds. We've noticed that he's showing very few signs of reflux now. It's quite common for him to drink an entire 70ml (2.5 ounce) bottle in about five minutes without stopping (it previously took us about 30 minutes with several stops for reflux issues).
Brady is now 16 pounds, 8 ounces. He continues to be above the 75th percentile in height and weight.
Brady is seeing a physical therapist from Gillette every other week. She is working with him on rolling over, sitting up, balancing, and the first movements in crawling. She is also working on keeping his hands open. Brady still has a tendency to tuck his thumbs under his fingers in a fist at times. We are ordering new splints for him to wear at night to help with this.
The occupational therapist from the school district visits every week. She is also working with Brady on how to roll over, play with his toes, interact with toys, and maintain proper body position during tummy time. Since those sessions take place at our house, Ava is always excited to learn new activities to do with Brady.
Last Sunday was a very special day for our family because Brady was baptized. It was a great time for us to reflect on these past five months and be thankful for the countless miracles we've witnessed with our son.
We keep running into old friends and acquaintances who tell us that they're following Brady's story, have been touched by his journey, and are praying for him every night. We've also been told by several people that Brady's journal entries have helped them reflect on what's truly important in their lives.
I guess that's Brady's way of thanking you for all of your prayers, words of encouragement and support. Please keep them coming. :)
With love,
Tyler, Ali, Ava, Casey and Brady
Sunday, July 22, 2012
Tuesday, July 3, 2012
Happy 4th of July!
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
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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