1 week at home

Well, it has been a week since we left the hospital. if we make it another day, we will have set a new record for days at home and out of the hospital!!! Samuel continues to do really well, he is getting used to his G tube and is much happier without the NJ tube, the tape on his face and the tube in his nose. We are working with PT, OT, speech etc to keep Samuel on track. With weeks in the hospital, Samuel's ability to play and explore were very limited. At this point, Samuel is able to do most of the things he should, but is having trouble with tummy time and rolling over due to the tube in his stomach. However, even in this week, he is getting stronger, is able to sit up, and is almost able to be on all fours. We have a big appointment with the GI and Resp. Drs next Thursday, so we are hopeful these are uneventful appointments.I have gained so much empathy for folks who have children with an illness. I worked as a hospital chaplain and think I was pretty empathetic, but this life changing event has given me a new perspective on everything. How earth shattering a "minor medical crisis" can be. How everything you planned for, all the hopes you had for the coming months can be taken in a moment. But, the grace and love we have received from our forum family, from church family, friends and others has shown me I am not in control, I can't be in control, and I can rely on others--this was HARD!! I really like to plan and be in control, and I HAD to let go, because all control felt like it was taken from me.Thank you all for your continued prayers and support. This is NOT how we expected to spend our first two months home, and I long for "normal" times again. But, I'm trying to take all this in and appreciate the love we have found from those around us. Thanks again __________________