Fun Times at SCVMC

Hey Kids! Hope you are all having a blessed Easter. Today has been a good day to reflect on what Christ did for us on the cross, and to reflect on what He has been doing in Jamie’s life the last few weeks. I am constantly amazed that each year, I come to an even deeper understanding of what it meant for Him to bear our sin on the cross. I think it must be that each year, I come to fuller understanding of how sinful I really am.

These last few weeks, we have seen Jamie continue to grow in her awareness. It is truly remarkable to see! The mixing of the languages is virtually gone, and she speaks when she wants to. She does have some trouble finding the right words, but does a great job when you give her choices. I have also seen an increase her ability to find the right words on her own over the last few weeks. She tells stories and can sometimes go off on a tangent, and make stuff up. It can be pretty entertaining.  For example, we were talking about where Ryan and I went on our honeymoon, and Jamie started telling us about where she went on her honeymoon! I said, “Jamie, I don’t think you’ve had a honeymoon yet.” To which she responded “Yes I have, I just didn’t tell you. I got married.” We had quite a good laugh.
Jamie is also doing SO MUCH better eating! She barely needs any prompting when it is meal time, and is eating good portions of each meal. This is such an answer to prayer, so thank you all for praying! Jamie hasn’t needed any supplement through her peg tube in over a week! Woohoo!! This is just one more step towards independence, and we love it. We will be asking this week about when the docs think it is safe to take the peg tube out. We have learned that the tube can also make her feel full and bloated, and that may have been a contributing factor to her feeling full when she couldn’t possibly have been. At any rate, our ultimate goal is for the peg tube to be out before Jamie is discharged. Each day that she eats without needing the extra nutrition, this goal becomes more and more real.

Over the last week, Jamie’s moods have been a little roller-coastery, but we can generally predict that she is grouchiest in the afternoon. She has a packed morning of therapies and activity, and so she is kind of wiped out by the afternoon. With her fatigue, comes a little more grouchiness and unpredictability (sounds like me!) Overall, she has had a very positive week, has been very cooperative and better at verbalizing her feelings (as opposed to hitting or the like.) She has the most trouble with behavioral issues during the overnight shift. After talking to the staff, we are fairly sure that this is a combination of things: none of us are there, and they wake her up to go to the bathroom. However, we haven’t heard any reports this week about behavioral issues at night, so it sounds like things are calm for the moment.

Next week, I am going to ask Jamie how she feels about posting a picture of her here on the blog. I have hesitated posting a pic because I was never sure how she would feel later if she saw it on the blog, or how she would feel now thinking that something was posted. She has made a few comments lately about feeling handicapped or disabled, so we know that she is very aware of her injury and that it limits her. She did share something really insightful on Saturday. A nurse came to evaluate her from the Dept. of Labor (because J’s insurance is now through the DOL) and Jamie told us “You want people to treat you like a person, not a pet. You don’t want people to just stare at you and only see your injury.” I thought this was SUCH a profound statement. It made me a little sad to know that she sometimes sees herself as disabled, but I also can’t help but appreciate what comments like this mean as far as her higher thinking and self awareness. At any rate, I am going to ask Jamie how she feels about sharing with you all what she looks like (which is normal, except for her short hair.)

I have also been talking to Jamie about her hair.  The back is growing out a bit, and she messes with it a lot, so I ask her if its bothering her. She has said a few times that it does. I told her today that her friend Jamie does hair, and has offered to come cut her hair if she would like. She said “sure I’d like that, but I don’t want to tip her.” Ha! I think she is getting too used to all the free food and service at the hospital…

Please continue to pray for the next step in Jamie’s treatment. We are in the process of researching step down programs and other options for Jamie’s upcoming discharge. For now, Jamie’s discharge date is actually April 13th (whoa!) but we are talking to her care team about pushing it back at least another week, if not a little longer. We are trying to balance it though, we know Jamie is kind of done with being in the hospital setting, but we also know that she would benefit from the intensive therapy for a little bit longer. We would like to see her gain a bit more cognitive function and independence before discharge, so that she can be more independent. Please pray for guidance for all of us as we navigate this next step! The next few weeks will see us meeting with and visiting different facilities and care groups to really figure out what is the best fit for Jamie.

We had a fun time today celebrating Easter. We dyed Easter eggs, and Jamie did a great job. She didn't really care for the little metal holder used to dunk the eggs, and would just grab the eggs and pop them into the dye. It was pretty low key, but still a good way to work on her attention span and ability to focus. While we were dying eggs, we chatted about the holiday and I asked Jamie if she knew why we celebrate Easter, and she told us it was all about Jesus! She went on to talk about Mary and a corpse, which was kind of funny. Also, Jamie told me today that I am her favorite. And then Ryan butted in and asked her “But is Lailah the only one who asks you if she’s your favorite?” Jamie said “Yes, that’s why she’s my favorite.” She also told me that I am the most fun. So there. hehe.

Love, Us.