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
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