Update #36

Chase is feeding tube free hallelujah. He is continuing to eat like a champ.

He was agitated most of the day yesterday, last night & all day today; so, after discussing options with the doctors - he is back on some meds for it. Hopefully his agitation will decrease because of the switch. He is also on a med that helps with his tone. What that means is that his muscles pull tight; the Med helps his muscles to relax so that he can continue his therapy. His speech therapist said something that stands out to me - she said "During this time, medications are so important as he progresses." I couldn't agree more. It's imperative to keep him comfortable and his body calm while he re-learns.

He has rubbed up his legs a bit from his casts (ouch!) so that is no good. We put some ointment on it and band-aided it. He gets his braces Monday - they are Army design.

He started pooping while he was eating and we tried to rush him to the potty. He didn't make it, but definitely let us know he was going. Sorry to post about this, but it's a big deal that we can tell what he needs and he is doing.

It's hard for me to see my son agitated and not have the ability to communicate his feelings. The staff here says it's a double edge sword because the agitation is good because he is waking up - or his brain is - but not good because the agitation affects his therapies.

So, the hope with this change in meds is that he will have the ability to do his therapies, not be agitated and rest when necessary. His agitation was getting in the way of not only his therapies but his resting period and even sleep. So, he was a grumpy, agitated, over-tired boy. He is resting now... So that's a blessing. I took him on a walk to see the "puppet fish" (his cousin Addie names them that - they are large painted fish that go around on a cable). He was watching them and fell asleep.

The staff is encouraging saying that chase is just working through his Rancho 4. There's no skipping, he has to go through this, but I have faith that he will come out on the other side. I have so much hope for him. I remember just 2 weeks ago when he was being wheeled to "the floor" and was barely awake; his eyes were barely slits and for only short periods of the day. He was healthy enough to leave the PICU and just barely breathing on his own. He is now eating and pottying on his own - we try to let him use the urinal but until he gets more communication it's difficult.

His physical therapist said that chase is doing amazing and she reminded me how early we are in his recovery process. He will be a different kid in just a few weeks. I'm amazed already by his progress.

His speech therapist said that he said "yeah" today and that his words will build as his trunk and head get stronger. Chase is so so brave. I would be terrified and I'm 32. He is scared and frustrated that his body won't do what he's asking. But the more we talk, and he talks to his "helpers," the more he understands that they are helping him re-learn. And he is!!! He is amazing! It took him only a week to learn how to eat. He's amazing.

He tries so hard to speak, and it will come. He pushes himself so, so hard in therapy and it's encouraging to hear the therapists comment on what a hard-worker he is. All of the nurses (including the PICU nurses) are amazed at how handsome he is. We agree - and now that his feeding tube is out, he looks like our chaser. He is amazing.

Thank you all for all your continual prayers. We feel them and we need them. Thank you for all your prayers, thoughts and fasts - and for putting his name on the temple roll. Thank you thank you thank you.

Slow & Steady,

Jen