It is so hard to believe that Santino is already two years old. The last two years have been a whirlwind of heartache and excitement all mixed together. I have been meaning to write an update since the summer, but just could not bring my thoughts together to write something meaningful. So much has happened since I last updated in April.
After Santino’s procedures in April, his doctors said we could start capping his trach. We did this for several months, and then he went in for a sleep study. His sleep study looked really good, so his ENT decided we could remove his trach. This happened on July 23rd right in the doctor’s office. I was very surprised because I thought they would want him in the hospital for observation after removing it. He said he was doing so well that he wasn’t concerned. We drove home that feeling overwhelmingly shocked, excited, and nervous. Santino was just fine and showed us he was ready!
In September, he had a surgery to close his stoma. It is looking pretty good, but may need to be revised because there is some scare tissue stuck to his airway. As long as he does well though the respiratory season, we will not address this until he is older.
Now that he is breathing without the aide of a trach, he is really making great progress in other areas such as movement, eating, speaking, etc. He is working hard on trying to crawl when we make him!!!! He says over 100 words and repeats everything like a parrot. The kids love having him say funny things! We are also pushing the oral feeds. He seems to like food, but is not too hungry. We saw his GI doctor on Monday and she prescribed some medicine to help with his appetite and motility (moving food through his GI system). She also changed the way we are feeding him through the g-tube in order to allow him to have less feeds during the day. He is eating almost an ounce at a time and loves to try new things.
Now that Santino is 2 years old, his Physical Therapist says he needs to be standing for socialization and bone density. Since he is not able to do that yet, we are going to consider getting him a stander or a gate trainer with long-leg braces. We are leaning toward a gate trainer in hopes that he will someday walk. Because he cannot put weight on his legs due to lack of strength and coordination at this time, we will need to use long-leg braces to keep his legs straight. This will allow us to teach him the mechanics of walking, but he will have a long way to go to build up the strength. We are hopeful that it will be possible.
Birthday Celebration
Walk With Me
We would love to have you join our team and walk with us on February 20th.
Year of Strength
This year is a year of strength. I pray that Santino continues to become stronger with each day.