Therapy was so great today. Neale had Coop on his stomach and because he didn't like the floor pushing on his tube he bent his knees up to be underneath him. His face was still planted on the floor but this is a big deal because he did not posture (arch his back and straighten his arms and legs) in order to get out of a postition he actually did the opposite of postureing. We were so excited that I didn't even get a picture of it.However he did great at this move as well. Neale had him laying face down on her leg and as he got mad he would push his arms straight to lift his head off. He was able to bring his head up to baseline while pushing his arms straight, but then it would flop backwards. 
It's a lot of work for a body that has been through so much and does not move like it used to but it is still my favorite part of the day because I always see progress. After he worked out with Neale Charlie had a enema to clean out his system then a bath and then a clonadine induced nap. By 4:00 he was ready for another workout with Janine. Charlie worked on helping roll his upper body (arm and head) while his lower body is being rolled by Janine. She also noted that he is starting to grit his teeth (he only has 4) so he will probably be fit on monday with a mouth gaurd.
Snuggles with Janine after a good workout.
Trying to get Coop to help pull his head up when being lifted off the table
Bicycle moves with Janine. Janine would irritate his feet one at a time and Charlie would pull it away like he was riding a bike.
So he is now taking another nap in Grandma Cheryl's arms after working so hard. The ear surgeons came by today and took off his bandages and said his incision looks great. We did not see the GI doctor yet because he had to order some special tubing to convert the g-tube into a j tube. When that arrives (maybe monday) he will come talk to us and get him scheduled for changing over. Charlie seems to be tolerating his feeds and is up to 50cc/hour at full strength. The plan is to work him up to 80 over the weekend so when we go home he doesn't have to be fed at night. Rob had to work in Oregon this weekend so I just wanted to share what was happening in Char's room while he was gone. Charlie misses you!
This Bronco outfit is from Shannon- "the hog doc"
19 comments:
Me, Anni, Matt & Amanda WOOHOOED out loud when we read this post. So exciting!!!!!!!
Charlie, you are my hero! What a great day, I bet he is exhausted. I love Charlie steps.
THIS IS THE BEST POST IN A WEEK!! i love it and i love him and i love neale and janine for working so hard with him. i hope he's up for a nice cuddly night with gramma c. angel - he is an amazing boy. i know you know that.
YOU GO CHARLIE!!!!!!!!!!!!! What a little stud muffin.. :*)
Great Job little Man. I don't even know you, but I am happy for your progress you are making. Mom keep up the great work and your strength is
amazing. Charlie have fun with Grandma tonight! Our family thinks about you a lot!
Happy for a good PT day. He looks so much better. "Hopin & prayin & wishin" (from an old song for you young'uns)
So--whenever I try the bum pat on passers by they just think I'm being fresh-what's up with that?
What progress! Your post sounded very positive today. I loved it! You should nickname Janine and Neale, Hans and Franz.
I LOVED the pictures! What great progress. I am so glad Charlie is responding so much more. It is so good to log on to this blog and read about how many people are praying for your family. thank you for sharing your experience with all of us. You give me strength through your example. I hope Grandma Cheryl has a good night loving on Charlie.
Connie
Ang, I am so proud, you all look so good! Especially Charlie (no offense). I love the workout photos...he looks an incredibly strong lil' man. I have a purell dispenser and some refills I will get to you Mon-and some other ant-bac goodies and signs to help!! Love you all tons-Andrea
Love all the great pics of Charlie's progress. He is so darn cute. I am so glad he had a great therapy session!
Congratulations on a great day! I don't get to read often (that's changing now that I have internet access from home), so I haven't seen the changes daily. It's still exciting, though, to see how far he's come. We pray for your all daily. I think you're amazing how well you handle all you are going through.
When all the aunts, uncles, cousins, grandmas, grandpas, etc., get tendonitis from the bum patting, know there are lots of us out here that are warmed up and ready at a moment's notice. I think with five kids, I'd even dare say I might be near qualified!! You guys are amazing!!!
i love reading such great news! Charlie is amazing...he is such a fighter and is working so hard. And I am sure he knows you are sitting around routing for him...that has got to be such an amazing amount of incouragement!!! Go Charlie!!!
I'm so excited that Charlie is making more steps!!!! He is such a little fighter. I'm so proud of you guys. You are all so amazing. I love the bum pats, who woulda thought that would make him calm down? I love it!
Sara
Yeah for big Charlie steps!! Amazing progress. It sure gives a new sense of optimism. Keep up the great work, Charlie!!
I wasn't sure if I should write but now I have to - this latest entry about Charlie's therapy is amazing and inspiring. My name is Leane and I live in Los Angeles and I am a friend of Dave, one of Charlie's nurses! Dave's wife, Karen, (one of my dearest friends) clued me in to your story earlier this week. I checked out the blog, read about your story, and I have been truly moved by all of your strength, faith, humor and courage. This story has brought me to tears on more than one occasion already ...and I have to say all of you have been and will remain in my thoughts and prayers. I have a 10-month-old blonde, blue-eyed boy named Tommy so seeing Charlie battle through all of this has hit me in a powerful way....Your family seems truly extraordinary and the way you are handling this journey is an inspiration to anyone who hears of your story....thank you for sharing it.
Yeah Charlie. That is wonderful. I am so excited for you guys. I know how great every little thing can be. Keep the faith and know that we think of you often. Kayden hated being on his belly after getting the button in, but that is not the case now. Keep up the good work and celebrate every little thing because they are nice to look back on when you are going through bad days.
WOW, Missouri is so glad to read this post. You can see the fight he has in him. Great Job keep up the hard work.
Awesome job Charlie.Ihaven't logged on for awhile. you Mom Dad and Britt aredoing an awesome job.
Post a Comment