The Busy Life of Benjamin

Easter is a very busy time of year for our family, and the kids stayed with us for every festivity. From a Spring Crawfish Boil, Sirmon Family Easter, Easter egg hunting, birthday party, and an Easter Day full of activities including a beautiful day at the Horse Races, Benjamin, Lennon, and Isla had such an eventful and fun weekend. The kids had so much fun, especially seeing the horses, but maybe too much excitement led up to last week. (This was the first time we had to camp out at the hostess stand so we could charge Benjamin’s batteries)

Benjamin was a little under the weather last week, but after bloodwork, urine analysis, respiratory swabs, and a CT Scan, he was diagnosed with tracheitis and given antibiotics. The trach we put in Monday was one I had to clean since we are only receiving one a month now. This illness may help us get a few more. On a positive note, Benjamin’s CT Scan was much improved from December. His continued progress is a sign of that.

I was extremely worried though when he started to get sick since his left eye was starting to turn out on some, and this hasn’t happened since the shunt placement. This isn’t happening as often now, so hopefully it was just from fatigue from being sick. It was mentioned that we should monitor for possible seizures, but I just don’t feel like that is the cause.

I know taking Benjamin out puts him at more risk for illness, but I refuse to leave him at home. He is a part of our family, and will participate in activities with us…within reason. His face just lights up every time we transfer him into his wheelchair. He likes to go just like his momma.

This week we received a stander to try with Benjamin and he loved it…for short periods. 🙂 Lennon and Isla loved seeing their brother “standing.” Lennon was ready to push him around the neighborhood. Now we will start the process to try to get his own stander. This can take a while, so we must be patient. Hopefully, insurance will push it through without a fight.

Benjamin continues to do new things every day. He is signing ball, more, and all done, more consistently now and has started nodding yes a little. (Nodding no is still his favorite.) We have been playing ball. Benjamin is able to grab the ball with two hands, and he rolls it back on his legs. When he is supported in sitting, he likes to kick the ball. I would definitely say the ball is his favorite toy right now. Benjamin is also moving his mouth more trying to bite on pretzels and fruit loops, and can click his tongue on the roof of his mouth. He frequently makes kisses with his mouth, but on occasion, he will kiss the back of his hand to blow kisses. Benjamin also started coloring this week. He tends to make dots with his left hand and scribbles with his right. I am so proud of his ability to grip the crayon. Benjamin has also discovered the girls’ princess microphone. He makes cooing sounds so he can hear himself louder. We have to wait until the girls are gone to do this since they aren’t the best about sharing stage time. 🙂

Thanks for all your prayers about nursing. One of our two nurses was able to come daily. This will work until she moves out of state in May, but hopefully by then, we will have someone trained and ready to fill in. We will be so sad to see her go.

Please keep Benjamin in your prayers in two weeks. April 25, Benjamin is having his tonsils removed and a few “other items” descended. We are taking out his tonsils with the hopes of improved swallowing, but there is no guarantee. If he didn’t have to be put under for his other surgery, we wouldn’t have risked putting him under for the tonsils. After lots of thinking and praying, we decided to go for it. We know there is no guarantee that it will help with his swallowing, but when I think about what I would want for myself, I would want to be given the opportunity to possibly eat, drink, or even sit without being covered in drool. We don’t plan Benjamin’s care expecting a short life expectancy, we plan his care giving him the best chance for a great (not just good) quality of life.











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