So, it's been 10months since Henry's Gtube surgery. He's finally adjusted! He's able to take bolus feeds during the day, and continuous feeds at night.
We've also started giving him a muscle relaxer to help with his muscle tone issues. The side effect has been that his anxiety level has been reduced too! He doesn't startle at loud sounds like a truck driving by, he is easier to stretch while doing PT, and he hasn't had 4hr crying jag since starting the medication! He's also been sleeping through the night!!
Things aren't perfect, but they are getting better. Henry has had to have two adjustments in the last 5mo because he's started to grow. He's wears prescription diapers - depressing to think that he may never be 'potty trained' - but we are thankful that insurance covers the cost.
His vision has improved. He tracks a little better, and initiates eye contact. He even played 'peek-a-boo' with his vision therapist!
His strength has improved too. As his gtube site healed, and we discovered a good pattern for the gtube guards, his soreness went away. He was able to apply his core muscles to movement and expression.
When a person doesn't have a vocabulary for communication, and muscle tone is unpredictable, they come up with all sorts of ways of getting their point across. He likes to bend in half and make a loud roaring sound to get our attention.
A year ago, things looked miserable. I had so little hope. But as time passes I become accustom to Henry's abilities and have adjusted my vision for his future. There is a lot of planning involved in his care, and keeping organized is absolutely necessary. I have been able to accomplish more in the last year, than I thought possible in a million! Noah and I are proud, stressed out parents with a vision for our family. With careful planning, and hard work, we'll make our dreams come true and help our children find the way to theirs!