The first half of the day was very slow going. If I could drag out the word "slow" like the way I'm saying it, might make it clear how slow going Cale was. Maybe like, s-l-o-w? Hmm...anyways, he was so tired and didn't want to do anything! Psych was so great yesterday, but today it lasted about 2 minutes. It's just the roller coaster of progress. Even during RT he was so tired and not really wanting to do anything, but we did play UNO and he actually made a couple plays with little help from me, that really impressed us. The afternoon was a little better for him. The schedules were all changed around so, that made things a little off, but he actually did awesome for OT, which was moved from 10 to 2 and then he did great with ST. Patricia (ST) heard Cale laugh at me today which was so good! Ahh! I love when he laughs!!
Today was the Family Meeting. I was kind of dreading it all day, while still trying to be positive about it. I was expecting to hear what they are thinking as far as how long we'll be here and what they're thinking with Cale medically. Again, so far these kind of meetings have all been "bad news" kind of meetings, but things have changed lots for Cale, and I have to remind myself Who is in control. Well, they ended up saying they still are not sure what it's going to look like. The social worker said that Cale is changing daily, so at this point it's still too early. I am totally fine with no date or guesses as to what everything will look like. I am completely flexible and willing to take every day as it comes! It was a good meeting and I'm starting to become really close with all the staff. They are all so great here!
One of the things that we talked about in the meeting and then more in depth later with the Speech Therapist is the apraxia. Ugg. I hate that word. It's a battle that Cale is up against. It's a problem in every area of his recovery and it's so frustrating! Here is a definition from Wikipedia:
Apraxia is a disorder caused by damage to specific areas of the cerebrum, characterized by loss of the ability to execute or carry out learned purposeful movements, despite having the desire and the physical ability to perform the movements. It is a disorder of motor planning which may be acquired or developmental, but may not be caused by incoordination, sensory loss, or failure to comprehend simple commands (which can be tested by asking the person to recognize the correct movement from a series).
This comes from Cale's injury not only being Severe Diffuse Axonal Injury, which is damage that occurs over a more widespread area, he also has very severe damage to his left frontal lobe. This is one of the reasons for the fight and struggle between the left and right hand. The Apraxia is just annoying to me right now. Everything he is doing involves the motor planning. I wanted to write some specifics about it, and a little more detail, so that you can all join with me and be praying against it! Other than it's another part of Cale's injury and it's all sad, right now I just feel like it's an annoying pest. Too bad a fly swatter won't help with it...
Cale and I read John 3-4 today. I know I keep saying it, but I LOVE getting to discuss scripture with him! John is an awesome book for basics and foundation. I was asking Cale questions about salvation and if he believes that Jesus died on the cross for him. I know that he believed all of it before, but who knows what he understands or remembers. I spent some time on John 3:16 and went through all of it, God loving him so much that He sent his Son to die on the cross to save him. Cale seemed to understand and agree with all of it. Another verse that I talked to him about was John 3:30 "He must become greater and greater, and I must become less and less." Such a humble verse. It's not a popular thing to become "less" but that's what we are called to do. I love how this verse is worded in the Message "That's why my cup is running over. This is the assigned moment for him to move into the center, while I slip off to the sidelines." WOW. I talked with Cale about how right now, all that we're going through-EVERY step in this recovery, how we need to step aside and let God shine through. It's all for His glory and it's going to be worth it.
I got out of the hospital for a few hours tonight! A group of wonderful ladies took me out to dinner. It was very special and my tummy is VERY full! It amazes me so much when I meet people that don't know me or Cale personally, but they are reading the blog and praying for Cale. I was talking to two of the ladies on the drive back to the hospital and one of them commented on how many people are reading and the other said that I knew, but really, I don't. I know so many of you are great about telling me, but so many times, I let thoughts of how it's been so long and are people really still reading? Are they still praying? It's a blessing to be reminded that yes, people are! Thank you!
I meet with the ENT tomorrow at 2:30 so please be praying. The ENT doctor took Cale's case to the tumor board today, and from what I had heard before, all the options that had been listed of possibilities of taking care of the tumor were all going to be going backwards for Cale. It's just not a fun thing to think about, but how great it will be for Cale once that's all taken care of. I know the process of doing that isn't going to be fun, but what a blessing once it's all gone! I named his tumor Gus.
I'm not sure if I've put this song on the blog yet, but it's set as my alarm on my phone so I wake up to it every morning :) I was reminded again by a discussion with one of the ladies of how even now, I know it's going to be worth it.