On friday Sandy took me and my Mum Whale watching at Dana point since she is leaving tomorrow, we saw a blue whale, we where VIP guests, and I got to drive the boat. and today me and Chris Adams went rock climbing again
I also got to se My Dad on saturday he seemed really awake and alert
P.S If you ever get the sweet and spicy noodle bowl at the lazy dog cafe it goes well with teriyaki sauce.
“Life is a journey, not a destination.” —Ralph Waldo Emerson
One thing we are finding when we visit Vernon is that he is on his own timeline. (If I’m honest, I suppose he always has been.) Sometimes he is alert and ready to engage and other times, he can keep his eyes shut for most of the visit…almost as if he isn’t ready to deal with his physical circumstances at all. We have noticed also that sometimes he seems to need to reset for a bit before opening up again to whatever is happening around him. Waking up from brain injury is exhausting work.
On these visits, its important to remember to accept him wherever he is. It is always encouraging to have a story for that day, to see another progression, but this time is about him, not me. He can do this how ever he needs to and at his own pace. This is a great exercise in learning to love a person unconditionally.
According the the RANCHO LOS AMIGOS SCALE (which charts the 8 levels a tbi patient might progress from coma through recovery and rehabilitation) I would say Vernon is between a III and a IV. This is fantastic because just a month ago, I would have said he was still between II and III.
Level III – Localized Response
Patient reacts specifically, but inconsistently, to stimuli. Responses are directly related to the type of stimulus presented, as in turning head toward a sound or focusing on an object presented. The patient may withdraw an extremity and/or vocalize when presented with a painful stimulus. He may follow simple commands in an inconsistent, delayed manner such as closing his eyes, squeezing or extending an extremity. Once external stimuli is removed, he may lie quietly. The patient may also show a vague awareness of self and body by responding to discomfort by pulling at nasogastric tube or catheter or resisting restraints. He may show a bias toward responding to some persons (especially family, friends) but not to others.
Level IV – Confused/Agitated
Patient is in a heightened state of activity with severely decreased ability to process information. He is detached from the present and responds primarily to his own internal confusion. Behavior is frequently bizarre and non-purposeful relative to his immediate environment. He may cry out or scream out of proportion to stimuli even after removal, show aggressive behavior, attempt to remove restraints or tubes, or crawl out of bed in a purposeful manner. He does not, however, discriminate among persons or objects and is unable to cooperate directly with treatment efforts. Verbalization is frequently incoherent and/or inappropriate to the environment. Confabulation may be present; he may be euphoric or hostile. Thus, gross attention to environment is very short and selective attention is often nonexistent. Being unaware of present events, patient lacks short-term recall and may be reacting to past events. He is unable to perform self-care (feeding, dressing) without maximum assistance. If not disabled physically, he may perform motor activities such as sitting, reaching, and ambulating, but as part of his agitated state and not as a purposeful act or on request, necessarily.
“Do not go where the path may lead, go instead where there is no path and leave a trail.” —Ralph Waldo Emerson
We have yet to see Vernon crawling out of bed or scream, but I guess when we do we can be delighted at the progress. It would be very much like Vernon to find out about this chart and do something completely different…just to spite it. I’m warned he might start swearing and yelling out of frustration, but so far Vernon’s laid-back attitude is serving him well. We are noticing that when he does try to speak, his words are often jumbled and phrases hard to decipher. I saw this sign today in the hospital and thought: “yes we could certainly use an interpreter right now!” But it doesn’t matter: once again, its about him practicing his speech, rather than being fully understood. He doesn’t seem to be too frustrated over that yet.
One thing that did happen today, on our second visit to his room (he was too tired to respond much when we took him for a roll outside this morning) is that he was able to say some simple and understandable words, even though they weren’t the correct answers. He said that Justine was 2, Maki was 8, and he was 32. I was so pleased to know that he was at least answering with numbers when I asked the ages. That has to be a very good sign of un-jumbling the words and concepts in his brain.
“What lies behind us and what lies before us are tiny matters compared to what lies within us.” —Ralph Waldo Emerson
I’ve been a bit amiss on blogging daily this week, so a HUGE thank you to Chris, who updated this morning…that was great. I love all the connecting elements so much. Chris has been an amazing friend to Vernon and our family at every step of the way.
This was Back-To-School week…just as it was for so many others. For us it was also Maki-recovering-from-jet-lag week, Maki-getting-back-into his-world week, Maki-getting- to-see-his-dad-again week, Me-getting-used-to-normal-schedule-again week, and Vernon-realizing-he-is-in-a-wheelchair week.
Along with that, it was Justine’s first week of school ever. A fantastic local church school has offered us a generous scholarship for her Pre-K year. I am so grateful, and Justine loves it when she is there. She does have a little ‘shyness’ (her words) each day as she is getting used to the new schedule, but I think that is probably typical. I also know she is completely ready for this!
Maki started yesterday with total 8th grade confidence. He is such a middle-school pro now. Strangely, he is having less trouble waking up early than the ‘baby.’
I love how everyone these days publicly shares the first day of school picture. Here is ours.
With apologies to both these great kids, I haven’t been the greatest at starting out strong. I realized half way to Brea on Thursday, that I hadn’t given Maki any lunch money on his very first day of school. The guilt bugged me a little at first, but I figured he was resourceful enough to bribe some buddies for a little extra cash if necessary. (I did dream about it in a weird way last night though…so I guess its unresolved.)
Then today, after packing Justine’s lunch, I left it home. With arms so full of stuff on the way out, I don’t know HOW the lunchbox escaped me. Anyway, it wasn’t the end of the world. It was just another realization of how much I have to get used to with TWO children going to school every day. Other moms can do it. Ah, what examples they are!
Vernon used to take Maki to school in the mornings while I would stay home with Justine. That was the luxury life. Anyway, we can do this. My new school goal is to keep them from starving. And that they get decent grades. (Hopefully, grades aren’t given in preschool!)
As for Vernon…who is not in the carpool at the moment…he is also moving along in his studies.
The speech therapist has actually been able to get some recognizable dialogue from him. He has been trying to convince her that he has four children and furry white cat. I guess I should start looking around?
Yesterday I had the pleasure of accompanying Allison on the drive out to visit Vernon in Brea. I am in the lucky position to be able to work from the passenger seat on occasion and from the waiting room. I hadn’t seen Vernon in 2 weeks. I was also lucky enough to go rock climbing with The Maki for about three hours that evening.
I’ll keep it real short. First, my visit to Brea.
– Vern could communicate with yes and no nods of his head.
– Vern can speak, apparently quite a bit to the speech therapist (not while I was there because he didn’t have the proper valve)
– Vern still has a sense of humor
– Vern is moving his left arm and leg a lot, his right side is a bit behind the left
– Vern can sit up very well, not completely on his own.
I was extremely impressed with Vernon and his progress. I can’t imagine what it will be like soon when he can actively communicate through speech.
NOW, onto another highlight of my week…the rock climbing gym. A few highlights.
– I am apparently still out of shape, walking into the gym doesn’t change that…news to me.
– also news to me…on a route difficulty scale of 0-6, 2 is nearly always too difficult for me
– In truth I am more capable that I expected
– hanging out with Maki is a lot like hanging with his witty old man
So, my takeaways from yesterday.
– I can’t wait to grind out a few more routes with Vernon & Maki, these guys are both on the upward swing and I’m stoked to be able to hang around with both of them
It was as if Vernon knew Maki was coming today and had prepared for it. Though the hospital front desk wasn’t thrilled about three of us going in at once to visit him, I managed to convince her this was a special occasion. And that ended up being the case. When we got to the room, Vernon was sitting up by his bed, waiting patiently in a wheelchair. I could hardly believe my eyes.
The physical therapist had already taken him out of the room to visit the gym earlier and we were told we could take him out to another part of the hospital.
What? Really? Wow! This was so unexpected and such a delight on the first day Maki had seen his dad in person all summer.
Vernon was able to say Maki’s name as well as a very clear, albeit quiet, “I love you.”
He then took Maki’s hand and raised it to his lips to kiss it.
It was an incredibly touching, spontaneous moment.
We were then able to wheel him outside for some fresh air, something Vernon hasn’t experienced for a very long time. He seemed to like it, but it was probably quite overwhelming, seeing his son, experiencing the sunshine, a wheelchair, sitting up, moving—all in the same morning. These things may have been more significant for us. We were so blessed to be there with him on this day.
A day when so much felt new.
Maki and Synnove arrived today.
While I was waiting for them at International Arrivals, I thought about how many times over the years I’d been at an airport with his dad, either dropping Maki off or picking him up. I thought about how he’d visited America for the first time 8 years ago…his dad pulling him atop a rolling suitcase. And then when I saw him, I thought: “Gosh, he has grown this summer!” And how wonderful that he is arriving with his smiling mother, when his dad can’t be here. How much our family dynamic has already changed in positive and unexpected ways since May. Life is strange and heartbreaking and beautiful.
Welcome back, Maki. We’ve missed you.
