I am so lazy! Actually, I am just very busy. I recently went back to school. I am so glad I made this decision, but it does take away from my blog writing time.
Drew's parents and I are also aggressively preparing for Drew to come home next month. We have a lot of work to do to make sure that the transition is successful. It is all very overwhelming at this point, but I know that it is the best for Drew.
There is a lot I could say about Drew. Actually, writing these updates is quite a daunting task, considering that Drew is continuously making small but noticeable gains in a variety of areas. Of course, I am not complaining!
I will try to highlight some of the recent developments:
First, I want to mention that Drew and I had our anniversary on September 9th. Last year, of course, Drew was lying in STC with his fists clenched and his eyes closed. Our two year anniversary was actually the day that I was told by four doctors that Drew would remain in a permanent vegetative state. However, this year I was blessed with many reminders that doctors are blockheads and that Drew and I are on our way to a better life.
A few days before our anniversary, my mother whispered something into Drew's ear. He then proceeded to look at me and point. Apparently, she had asked him if he wanted her to buy flowers for me. Well, she did, and she also bought a card for him to give me--and to sign. Yes, he was actually able to sign the card himself! His dad wrote out the words for him, and he copied them. He wrote "Love, Drew" on the inside and my name on the outside. It looks like a kindergarten child wrote it, but it is legible! I thanked him about fifteen times and then started making plans for our future anniversaries. We decided that next year we will do something nice at home with Drew's parents. Then, the year after we will go out somewhere downtown, like we used to do. He agreed--I got thumbs up all over the place.
Again, Drew has been slowly improving in virtually all areas. His PT is working hard to help him learn to sit up straight and to keep his head up straight. We have seen improvements in posture in just the past few weeks. His PT is also working on helping Drew increase mobility of his legs. Drew *always* throws his legs off of the bed now--he even throws them over the bed rail. At one point, I got yelled at by a head nurse because she thought I was being delusional and throwing his legs off of the bed myself and then just leaving him to lie there all helpless. I have to admit, I used to do this! I used to put Drew's legs off the bed and then command him to put them back on the bed. I always knew he could do it. And now he can. Now, of course, we are trying to get Drew to do more bending of his legs on his own. It will come--I just have to torture him some more. Hah.
Drew is also doing well with OT. They have been working on re-learning Activities of Daily Living, such as washing, brushing teeth, etc. Once Drew gets home, I will walk him through this routine every single day until he is completely independent. Currently, he seems to have trouble with getting stuck on certain parts of an activity. This is a common trait of patients at his current Rancho level (5) and will subside as he progresses further. Also, he is still severely limited by the fact that his left arm does not bend. However, we will be able to get an operation to repair this eventually.
As far as SLP goes, Drew is working very very hard to learn to swallow again. He finally has regained a functional swallow, but he can only swallow about eight sips of liquid before his throat muscles become overworked and start to twitch. His therapist is 90% sure that he is able to swallow without any liquid going into his lungs. If he continues to do well, Drew will move on to eating applesauce. The other day I asked Drew if he believes he will be eating solid food soon. I got a very immediate and enthusiastic thumbs up. I believe him, too. Drew has a long way to go with this, but I love his positive attitude!
Regarding actual speech, we have seen very little progression. However, the therapists are working on helping Drew to communicate in other ways while the speech neurons are busy sorting themselves out. Drew is now able to communicate yes and no via head nods. Drew has learned some basic sign language. Also, Drew is being trained to use the Dynavox computer. A woman evaluated him a few weeks ago and was very impressed with his ability to operate the machine. The fact that Drew is able to use this at this point speaks volumes about his current cognitive ability and his potential to make a full cognitive recovery.
In general, Drew is doing very well on a cognitive level. He shows evidence that his short term memory is returning, he answers questions correctly, he is able to identify letters and words, he exhibits problem solving ability, and he communicates consistently. Unfortunately, we are seeing that Drew has some very serious physical deficits. He is not paralyzed, but some of his muscles have not woken up yet. While it is frustrating to watch, I am not worried. There are a lot of therapies for this type of problem. Many patients are able to overcome such deficits.
I would rather have my husband functioning fully on a cognitive level but confined to a wheelchair than the other way around. While Drew was still in a deep coma, I read several horror stories about patients who woke from their comas and regained mobility but were never able to even remember their family members. I have witnessed several patients like this at USH. One man appeared completely normal, but he thought he was at USH to inspect the building. He would always grab the visitor sign-in sheet and say, "You are interrupting my work!" He was serious. It is tragic.
Drew, on the other hand, appears to have a pretty good grasp of who he is and what is going on around him. I don't think he understands what has happened to him just yet, but that will come in time. In the meantime, it means so much to me to know that Drew still knows who I am and that he still loves me. He hugs me, kisses me, and signs "I love you." If you ask him who he is married to, he points to me without a second thought. He also loves to point to me, motion "come here" with his hand, or point for me to get into the bed with him. It is truly amazing that even catastrophic TBI could not destroy the bond that we have.
