First things first, we did get final reports from Cincinnati. Basically, we found out Cohen has more lung problems that we thought. We knew they were weak, but not to this degree. More testing will be done next month in this area. For now, he is on 4 daily lung meds that are controlling things really well.
As far as his G tube, we are doing intensive feed therapy trying to wean him and hopefully, at some point he will be fully an oral non-tube eater. It's a slow process. He still aspirates some, but not near as much. He has alot of learning to do. I have faith he will, because if nothing else he is the most determined person I have ever been around.
Determined.......Cohen has really shown us his personality the last couple of months. Now that his ulcers are not being aggravated by the G tube he has no pain when tubing. (A HUGE HUGE RELIEF) He literally is a different person. He is chatty, funny, laughy, and smiley. I can already see strides in his development.
Cohen has had RSV recently and a bad cold all winter. He has been much better for a few days now, and I hope this beautiful spring weather can help him stay well. His fevers got over 105 and his cough was scary. So glad he is better. ER trips were becoming a little too normal for us!
All in all, we are doing well and hanging in there. Spring is usually not my favorite time of year, I struggle with allergies, but this year I am excited about it and can't wait until summer.
PS----Ames and Calee are doing great. Calee has started piano and is loving it, something she has wanted to do for years. A piano in our living room may be in our future! She also stays busy with dance and musical theatre classes. I loved having her on spring break last week. She is so good and helpful with the boys! Ames is growing and changing everyday. He seems like such a big boy lately. He still loves anything with tires, and is into firetrucks in a big way.
Hope all of you and yours are well. Thanks for reading and caring about us=) Love ya! Oh and here are a few pics from my phone, I need to get out my camera----have been slacking on that too!
|Cohen and Ames at MDO|
|Cohen trucking down the hall with his walker|