I relieved Rob this morning and had a hard time kicking him out of the hospital and back to work. Today has been pretty good because I have had lots of one on one time with Charlie (ie. patting his bum time). We changed the formula yesterday back to Enfamil and we are going to give it one more day to see if we think it has made a difference. So far he has had less residual stomach acid and less liquid poop but I'm not conviced that it has made him feel completely better. Dr. Jackson will probably try the venting G-tube tomorrow and if that doesn't work we will go to the G-J tube. We went to OT this morning with Neale and she put him in a stander. This looks like an ancient torture device but is a contraption that actually beneficial for him. Some reasons it important for Charlie to be in a standing position is it increases bone density, helps digestion (gravity pulls food down), promotes head control, makes him use his torso muscles. Neale mentioned some more but I can't remember them all. She thinks he should work up to 30 min. 3 times a day. He didn't hate it but didn't love it either. When he was completely upright, his head flopped forward but he was able to turn it a little to the side by himself (the right side of course).
8 comments:
I'm glad you got to spend so much one on one time with sweet Charlie! I ove the pictures of PT. I can always see improvement. I'll bet Charlie felt strange being in a standing position. I hope the formula works and Charlie has a little relief. My prayers continue to be with all of you! Your strength is amazing!
oh my. you gonna have rob rig one of those up for you at home? how on earth do they expect him to do some of those things at home???
glad you had a pleasant patty patty day. love that little man.
I am so impressed and proud of you guys as a family. I find that keeping count of everything, via pictures is a big deal. My son was in the hospital for 30 days (nothing compared to you guys) for a major reconstruction of his heart. We were not sure if he would survive, but it was important to have pictures of everything. He is now doing great and i cannot wait to show him the pictures of his "beginning" when he is older. Keep the great work. you guys are an inspiration to all. And Rob, you are right, the small stuff just does not matter any more!
All I can say is...whoa.
He is seriously moving along isn't he? You know, you could use that stander with a 3 year old 30 minutes three times a day too, just to get them to chill for a bit and for you to sweep the floor, or mop, or nap...
Wow. So good to see Charlie moving forward. You all are in our prayers.
Good JOB little man . You are in my thoughts and prayers. Keep up the good work.
Rob and Angel, you and your family constantly impress me with your good attitudes. Even though I am SO excited for Charlie and how far he has come, I still almost cry every time I read his blog. Maybe I'm too emotional (pregnant and all), but it still breaks my heart to see all he's having to go through. It does give me perspective (and hopefully it will still better sooner than later) and my Noah's issues will seem smaller somehow.
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