How is Lively doing?
Lively is stronger. He is able to shift his weight so that he can move around with a combination of rolling and pivoting while sitting. He can get onto hands and knees and back into sitting. He's acting like he's ready to go somewhere. He even tries (and almost succeeds) in pulling up to standing. Needless to say, we are thrilled with this progress.
A few weeks ago, Lively also figured out how to swallow again. He still does not take much food by mouth, but some days he is able to swallow up to an ounce of pureed food per sitting. Again, we are overjoyed by these steps in the right direction.
Last week, Lively had another swallow study. His first was in May, over 5 months ago, and at that time, he aspirated thin liquids. We were told that we had to thicken his milk so that he could manage to get it into his esophagus instead of his trachea. However, Lively completely stopped taking anything by mouth around this time, so for months, despite offering food 3 to 5 times a day, he got all of his nutrition through a tube. Because he started wanting to eat again, Lively's surgeon and his OTs ordered a new swallow study. I hoped for good news.
Lively aspirated applesauce. Previously he only aspirated thin liquids. Now he's aspirating purees too.
So why is this happening? We don't know. Lively was able to breastfeed, drink from a bottle, and eat stage 3 foods with no problem 6 months ago. A lot has happened between then and now, but we still don't know why he can't swallow properly. Everyone is baffled.
I have hope, on so many levels, that Lively's brain and body will continue to heal. I hope that he will crawl and walk and run. I hope that he will write and type and play the piano. I hope that he will eat pizza and cupcakes and drink milk from a sippy cup. I hope that he will go to a "regular" school and take AP courses, that he will have lots of friends, that he will be athletic and artistic and scholarly. I hope that he will turn down his scholarship to Harvard to attend U of M, that he will live in a dorm and come home to do laundry on the weekends.
On another level, I try not to hope these things, so that if he doesn't get there, I won't be disappointed. Or devastated. We're coasting right now. We've been out of the hospital for over 2 months. Lively has graduated to a G-button. He is interested in eating. He is stronger. These things give me hope. Also, he sucks applesauce into his lungs. Did he have another stroke? Was some swallowing mechanism damaged during one of his multiple intubations? Don't know.
I wish I could have faith or hope or the kind of certainty that some people have that everything is going to be alright. I do hope. But I don't count on everything working out. The world doesn't seem to be working that way right now. So we coast, and I try to relax as much as I can, and help Lively make as much headway as possible before we hit another bump.
When Katie's son Lively was diagnosed with infantile spasms in February 2010 at 6 months old, she and her husband Pete were told, "You have a long road ahead of you." You can read more about her family's journey down that road at Highway Lively.