So we have left Herrick. It is a mixture of many feelings but we miss those guys. Those walls and those people had become our home, safety net, and family. These became the people we depended on and those who we could trust to keep Todd safe and improving, they were our advocates and army. Today began the new therapy team and they are off to a great start…..it is new. We again are amidst a full and demanding schedule of therapies but we now have the advantage of our home turf. New in the world of TBI change can be distressing for Todd. So we are trying hard to get him some rest and me too. It is the fourth day and it is expected to take at least a week to find our footing. Our home and therapy studio are coming together and Todd is happy to be home…..but as with anything in life not knowing what is next can be challenging for the best of us. It feels like we were standing on the edge of a high beautiful rock formation just above a cool pool of water and are now in the air between the jumping point and the cool water below. Thing is even when you hit the water you can’t really see what is below.

 

Before we left the hospital we took Todd on a field trip to himself experience the beauty of the gear wall…. that and the video have allowed Todd to first hand feel and see what can come from all the love and caring that surrounds him. It was an amazing sight to behold. It was quite a treat for us.

Special Note: We are still filling positions for a regular caregiver team so if you know anyone special in this arena, that can bring a smile to our Todd’s face please send them my way. Short shifts mostly am/pm ………mid day is covered by therapy. I thought I would let you know in the event that something good could come our way on this front.

If you have any leads call me or email me at mizalex@yahoo.com. Thank you.

Is there a word that means thank you mixed with awesome? Thank you falls short. Gratitude does not seem to carry the same weight mixed with the fantasticness of you people who have stood by us and came out this Sunday. You are an amazing bunch of people. I loved the meeting those individuals who stand behind the people who stand behind us. The smiles and power of love manifest itself into this amazing wall of gears and an event so unique…… I really reminded me of how alone we are not. What a beautiful web of friends and family we have woven.

Some of you heard me speak of Todd and some missed it. My next post will talk of the amazing place we are post surgery.  Many faces I saw in photos but never crossed their path……how did that happen?! To you all I thank you for being now part of our success story, our miracle, and our healing. IT is a long road to recovery but because of you all we are now able to do this at home.

…….and in a show of amazing solidarity there I stood among friends, family, and therapists from both our hospitals (our own personal army). There are days I want to stay in bed and pull the covers over my head and there are days when I walk around smiling at how amazing and resiliant Todd is. Together our personal army has helped us in ways that are less than transparant, less obvious to the untrained eye.

So I thank you all for your many individual gifts. We will never forget and we will never take for granted.

With love from the unstoppable team.
Alexandra (and Todd)

p.s. don’t think I didn’t notice that I set you up for the “booger on the wall story” and then failed to deliver. I was nervous. I owe you one though!

The last couple of weeks have been full of ups and downs.  I now have the first opportunity to share with you some of the highs and lows of this roller coaster.  On June 15th, Todd was admitted to the hospital with a 103˚ fever. The weeks leading up to this moment were not without concern but they had all seemed to fade away or found some explanation that quieted the mind temporarily. The antibiotics Todd was put on did their job, while the search for the cause of the fever was thorough. The fever was on its way down by the next day and we were released back to rehab by end of the week Thursday. The staff was so relieved to see the ever inspirational Todd and our room was active with the rounds of docs, nurses, and therapists sticking their faces in to welcome Todd back. Clearly this team is going to be just as happy as sad to see us head home.  They all are rooting for Todd!

Tuesday came around as did a follow up CAT scan and the comparative results of them. Looking back it appears that we came to the US with a slightly clogged shunt. The pressure has been building ever so slowly and things were coming to a head. The fever could be considered a gift…. Something which had people looking closely at Todd in a way that he hadn’t been examined in some time, this does in no way suggest he is getting anything but excellent care in our current facility, but there are so many grey areas. Mostly we have been on cruise control you could say. With brain injuries there are no answers, no road maps to guide and provide dependable answers…  it is without a doubt a path riddled with discoveries, challenges, and both small and large battles.  It is impossible to determine at times what is a result of the injury? What is a result of the massive medications? …..and so on. So the team here must examine every approach and issue individually, systematically isolating each in a process that can take a great deal of time and attention.

Tuesday as I returned from lunch the doctor told me Todd would be going in to surgery the following day for a shunt revision procedure. I was in such a state of disbelief I actually phoned the neurosurgeon’s office myself to confirm we were indeed on the schedule for Wed.

We were.

Wednesday was the longest day in quite a while which really didn’t end until I went home for a shower the following day. In the beginning of the day Todd’s surgery was almost bumped to the following day but with some patience and perseverance we made the day’s schedule. Todd was most likely the last surgery of the day. The surgeon removed and replaced the primary shunt and removed another shunt in its entirety. The shunt that was removed was the first one to be surgically placed during our time in Amsterdam. To see it gone is most welcome change for Todd.

Wed June 25, 2008. The day some big problems found a SOUND resolution. As the days have gone by we have found a fresh, new Todd remerging. Drugs gone, shunt gone. Now we can really get to work.  We are seeing some amazing transformations and we are just a few days post op! Can’t even wait to see what comes by the end of the week, never mind the following week. Todd is happier and more clear than I have seen him in a long time. We both are.

Some have said in response to these last few weeks, why wasn’t this found sooner and I will tell you that it is all in good time. Things must be ruled out systematically and Todd was in a good and solid place when this discovery was made. He was slipping away but strong and ready and understanding of what was going down. It was just in time.

Our trajectory remains the same ……we will head home but the discharge date is now up in the air. We need to make sure Todd first receives all he needs for us to succeed at home…and more importantly that he is medically stable and safe. We are back under the watchful eye of the rehab facility with a lot to look forward to.

 

 

Time is moving forward and our days remaining at the acute rehab facility are numbered. Every single day Todd is stepping up to the plate. He may be tired but never a day goes by that he doesn’t flash a smile (and now a wink) and try something new and different. Things that were once impossible, now are expected from his therapists and myself. Here in our rehabilitation world the OT, PT, ST, Nurses, Todd and I are a team. We make decisions to work together towards new goals and they are really ramping up the demands on us. We, each day work hard to towards the goal of healing and independence. It is easy to forget how far we have come when you look at how far you have to go. As Todd gets stronger our days fill up with the increased demands of healing and recovery, but looking back helps keep you grounded. Throughout the day I remain part of the team…. helping, learning, assisting and developing communication, and best of all making it fun and doable. (Kisses are a great motivator!) As the sun sets I return home only to return first thing in the morning to share our coffee together and begin the next day. Our days our full and at times very exciting. Without a doubt we have had our ups and downs, but the good far outweigh the bad. This is very extreme brain injury with a hardcore path of rehabilitation in front of us. This is uncharted territory and unfortunately there is no hand book. It is a most demanding time for us both and the most important ingredient is to keep Todd both safe and protected.

The morning starts with Occupational Therapy and we are still working now until 8 at night if you can believe that. There are breaks in place throughout the day but now Todd is consistantly awake and involved and initiating. His words are sliding back in, he tries tirelessly each and every day to reclaim his voice, and best of all are the remarkable strides he has made in physical therapy, which is his afternoon appointment. This is the very guy that when we landed could barely move any body part without assistance is now on the paralled bars and finally gaining the strength in his neck to hold his head up and nod yes. Each therapy discipline has had great moments that get shared up and down the halls with therapists and nurses ……..all of which are rooting for us. Good news and achievements travel quickly around this place.

The meds are being tapered down in a very conservative and measured approached. The valproic acid will be all but gone at the end of the month. With attention already turning to the Dilantin. The 3rd medication will remain untouched to assure Todd has no additional complications……I think everyone can agree he has had enough of that. Once these medical issues have been addressed we are eligible for the next step.

It is the dedication that Todd and I have shown that will make the next step doable for us. Last week Todd and I (accompanied by part of our team) left the facility (by car) for a brief but overdue visit to our home for an evaluation. We passed with flying colors and with a few adjustments and a couple of new things fabricated (by non other than our kick ass friends) our home will soon be ready for Todd to leave the hospital environment. It has been over 8 months since Todd was home. We are nervous and excited for this big big new step.

Concerns? Questions? of course. Rest assured we have been subjected to many and have demonstrated extreme confidence, realism, and knowledge. We explored alternatives like subacute facility, which is considerably farther than umm a zero mile commute, and another name for a nursing home which is not the best place for Todd or nearly as delightful. We have full support of the staff in the decision that has been made. It is hands down best for both us. I imagine a lot more peace and rest and relaxation for us both…cause the work is already a piece of our puzzle. (Because I am there each and every day all day there is not question among our team and advocates as to whether I understand the demands of taking Todd home) The therapists during their home visit found our home to be one of the best they had seen for making this transition. We will be returning to home under the watchful eye of Rehab Without Walls, Todd will at our home receive the therapy he has been getting now. We will have the OT (Occupational Therapist), the PT (physical therapist), the ST (Speech Therapist), NeuroPsychologist, and social worker. The scariest part of this equation is the increased expenses once you leave the facility environment (although inevitable) with all that team we will no longer have the nursing component. This will be out of pocket…. But a small price to pay for Todd to sleep well at night and be home. Todd still needs 24/7 care and I will require home care professionals to manage this.

That said, in an amazing show of solidarity, creativity, community, and friendship the next event is well underway. In July (again super kick ass) friends have outdone themselves in an event the speaks volumes of Todd and the people who love and adore him. A kinetic sculpture and fundraiser come together as one! So it is more than clear that we can and will bring Todd home…..it is more than a possibility. While Todd will not be able to come and see what has come together in his name I will!….. and I will bring back every little detail I can to show him. This will be a unique chance for me to hug so many of you that I have not seen either at the hospital or in my cameo appearances in the outside world. (Which is actually called having dinner.) We are, dear people, a rare breed. Neither the hospitals we have been at/or staff have witnessed such committment in a community of friends and family. (OR at least to be super duper correct it is a most uncommon occurances, I have seen it with my own two eyes) Clearly, Todd did a few things right along the way. The intention of this fundraiser is to support and facilitate this transition. Thanks to some fancy footwork and involvement of a nonprofit all donations will be tax deductible….. doesn’t that sweeten the pot!

In time I see cooking dates, artistic explorations of all sorts, and all kinda of things but I am currently focusing on now and the next few months. Soon there will be increasing opportunities to share and help Todd develop and relearn or just laugh and smile. I see home as a place to connect.

We are making plans. Big big plans……and arrangements. These preparations are keeping us busy and build on an already demanding schedule….. I will try to keep you all more in the loop, not keep you wondering for so very long.

p.s. fresh pics of Todd coming early in the week.

It was my intention to share with you the schematic framework of Todd’s day. The writing was well underway, providing the understanding and interpretation of what the day’s work consists of…..how does one recover from a traumatic brain injury? What is does a slow path mean exactly (of course there are no concrete answers for anything which is difficult for us and how we like to process information) and what is Todd relearning? Well I have been cut off at the pass………by none other than Todd.

Returning to the states has been a full plate. …..our days as a team our considerably longer than what we had grown accustomed to. Many things that we must accomplish in a week, or even a day will never even reach the page. We are both busier than ever, in Amsterdam we were healing and surviving. Now Todd is recovering and that, as we are learning, is a great deal of work. Tackling the simplest of tasks, which we all take for granted. The layers involved in the simplest moves are obvious once dissected but I would guess most of us have not deconstructed the amount of various movements in a chew and swallow or even smile for that matter…..or how laying in bed for a great deal of your day will affect the muscles in your feet and ankles thus your step and stride. How a step is not just moving your foot forward but requires both a lift (requiring the building of strength) and the shift of weight.

Last week’s highlights took us all (therapists included) by surprise. The first occurred while Todd and I were messing around with range of motion while in his chair awaiting the therapist for the first morning session. I have taken to coming in a bit earlier (around 9ish) to start some stretching and movements to increase the benefits of the day. While Todd was in his wheelchair I dropped his hands by his side to stretch out his shoulders and loosen things up a bit. Todd’s hands found their way to the wheels of the chair and then without any prompting he propelled himself forward for the distance available with one full roll. It was not far but what an amazing moment it was. We couldn’t’ wait to show off! Not only did he do it once but he did it again for two separate therapists! Indeed Todd had it in him to (with assistance in repositioning) move forward enough to hit their shins at the urging or challenge of these very needed individuals. This was Todd’s first opportunity to strike back! And boy did he step up to the plate! No bruises were given with the gentle tap he was able to muster but a glorious confrontation of sorts. What a guy. Sometimes these days it’s when you aren’t even looking that the most amazing moments can occur. Now this may sound good but that is just a drop in the bucket.

You thought that was cool?! Listen to this. Setting: We are in physical rehab, which is our major afternoon therapy. (This currently consists of standing frame (which stretches out his legs and drops his heels), to holding himself up on the parallel bars (with assistance), to the assisted walking with the aid of the LiteGait (which takes his weight when he is strapped in to the harness). He is currently in a 3 assist situation with this contraption which is me + two therapist if not three. Well we were on the parallel bars Todd holding himself up……. right got that picture? All of a sudden Diane (our lead physical therapist) shouts “He is moving, All right gang here we go Todd is walking! Alex follow with the chair!” So I am behind while Keany is in front (two more one on each side) and Todd is moving one foot in front of the other! “Go Todd!” we are all shouting enthusiastically. All of us were in shock and I had tears of joy streaming down my cheek. When Todd made it to the end of the parallel bars I was there with his chair for him to sit down softly and rest. What a smile. Todd did this one more time, and that time his mom Annie was watching quietly from a chair. TODD IS A ROCKSTAR! I say it every day….. and I will continue to. Is this a turning point?

I think of Todd’s recovery much like the old fashion barn raising. Where the community comes out and together they work as the structure is built, erected, and solidified. We are witnessing a contemporary version of that which I guess we could call a Todd raising! Tomorrow is the next grand effort (from Vale and team) to assure our survival through this most challenging time! Thanks to you all, bills are getting paid, we are being fed, and we can focus on being together working hard everyday. I have been starting to see and run into to people more and more as the weeks go by and how amazing it is to see the love and also hear accounts of how Todd has influenced and inspired so many people! Keep the faith …….it is a wild ride we are on and we do not know what is ahead or where we are going to land next……but we do know it includes Todd,…HOW GREAT IS THAT!?

(I cut this from a post) Vale wrote:
We’re thinking about Todd daily and following his recovery!_Don’t forget about the “Pranks Film Festival” coming next week. Special Todd Blair Benefit night is Thursday April 3, 9PM at the Roxie Theater 3117 16th at Valencia, SF. Mark Pauline has agreed to a live Q&A with Vale — also will show some of the machine demo tapes by Marian Wallace: Maker Faire 2007; SRL V1 at the Lab, 2003; and the fabulous dual screen Berkeley Art Museum show, taped by Scott Beale and Marian. Also will show a Mark Pauline interview — taped in the ’80s.ALSO the after party at “the Homestead” (corner of Folsom/19thSt.) will follow this show. Hope to see you there! Check the Todd Events page for more details and more on the copious other shows April 1-3. We’ll be giving away a Pranks hardback AND Pranks Film Festival shirt as door prizes. Money from this show to Todd Blair and Alex, so tell your friends.

And now in the true fashion of this long time communication another voice from Todd’s bedside. Here’s Johnny: (he has been quiet lately)

I’m sure y’all will excuse the my lapse in writing. I’ve had a bit of catching up to do since my trip to Amsterdam, but am now able to balance everything out enough to be able to hammer out a few words. I have been helping Todd here and there with his range of motion exercises and sharing some art books with him (which he devours attentively), but this morning was a truly wonderful therapy experience with Todd and his Recreational Therapist Tamara. Alex has described the machine that helps Todd practice walking (the Lite-Gait – – I thought it was some sort of sci-fi transporter device when the therapists were first talking about it). Its cousin for arm movement is a frame which uses counterweights and slings for wrist and elbow to make his arms “lighter”. The plan for this morning was to use this machine, and then Tamara said, “Let’s bring the machine up to the rooftop garden.” With the help of the counterweights and some light guidance by us, Todd was able to pull a marker out of one of the planters and lift it up to read. We then went through some fluid Tai Chi like movements, which, although strenuous, got Todd very strongly focused and calm. By the end he was doing most of the work. I can’t tell you how wonderful it is to see this progress — hands grasping, eyes focused, mouth mustering words (and apparently coaxing out a few here and there). And all this surrounded by lovingly planted flora, amazing view of the Bay, and a facefull of non-institutional air for Todd to feast upon. Stay tuned for another update next week – – I am planning on bringing in some Japanese brush painting fixins so we can get a little Sumi going on.

Love and hugs and stopping to smell the lavender.
Johnny

Coming soon……..I am already working on the next entry…..IN A DAY. Keep an eye out. Alex.

Oh yeah and I have some good photos of that guy we are all so proud of. What a determined, tenacious, spirited, bright light!!!!!
LOVE HIM.

Each and every day there is progress. The last week has been a bit more demanding trying to keep up with the inevitable changes and demands posed by a nurses strike (the end of which is in sight). I spend considerably more time at the hospital which means at the moment I rarely leave. It does help to be more involved with the unfamiliar nursing staff and tonight I left to rest at home and check in briefly. That, alongside with our busy schedule has kept me a bit quiet……routine as it turns out is beneficial to us both. Routine this week is a bit out the window but we are all working hard at the hospital to ensure Todd gets everything he needs and more.

Watching Todd heal (slowly) is without a doubt a huge gift and also requires a very clear and honest perspective. It is a bit like watching a snail cross the highway, without markers or references you could easily not notice or forget how far we have come. The steps Todd is making are small, amazing and steady. He is gaining strength and best of all he is more and more attentive! It is a beautiful thing to see Todd shining through the slowly lowering massive dosages of a triple combination of epileptic medications. (We are weaning one off, by lowering the dosage incrementally each week) The seizures remain at bay, we have very little idea of what lies ahead in the next chapter, but we celebrate the day-by-day progresses and achievements. Todd is gaining weight and strength and his therapists are often amazed. I say regularly to Todd that we continue to exceed most all their expectations……..and will continue to do so. We have gone through months in bed, ICU three times, induced coma also three times, and now Todd is… with the aid of a cool apparatus that takes up the majority of his body weight, walking down the hallways and stopping nurses and patients alike in their tracks! He is completely over most soft squooshy mooshy foods and is more in search of good flavors and familiarity. This week’s hits include his morning cereal (just as at home, crunchy is good) and tangerine juice, also brought him some delicious market hall ravioli ( a dependable fav at our house) and ice tea for lunch, enchiladas also went over well. He seems to favor savory over sweet, and his texture preferences sometimes come as a surprise to his therapists but not to me and those that know him. He is a texture kind of guy, likes guacamole but hates avocado from which it comes …that kind of thing. He is sooo ready to move on and we do everything in our power to provide him with the opportunity to do just that! His smiles are more frequent and this morning when we woke up together, side by side, I was greeted with the first sentence in weeks. Todd is still without a doubt as charming as ever! Every time I am faced with doubt or frustration I remind myself that there is no way we have come this far to be even remotely close to done, I also don’t believe that Todd would fight so hard if he did not feel clearly and strongly that he could come back to the life he loved so much.

The other thing I often say is …….we have an army behind us that have every intention of making sure we make it through. Thank you for that.

There are still so many people we would like to see and touch and truth be told I don’t even know where to start. Just keep checking in with us or me please….mail and email is a good place for us all to start.

Now I have to see if I can get my right boot off with a somehow broken zipper without resorting to scissors or an exacto knife! (Thanks to my handy dandy Leatherman the boot did make it off without any permanent damage, phew!) Just when I was contemplating how many days my socks could last, and how to take a bath with my right foot still clad in leather.

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