36 hours free and counting

Toren had a really great day hanging out with Kristen yesterday... the weather was so grand they even got to go out for Ice Cream... amazing for the time of year.

He went over the my mothers for dinner when I taught Yoga, and all in all is doing better than any day since the surgery. As we speak he and Helaini are getting their feet done!! Then they are off to bake with Rabbi Jonathan for the farmers' market - this is incredible and positive progress. Hopefully OT, Speech and PT will start up again very soon.

How did we get here - is the question Toren asks again and again. There are so many ways to answer - but I know that one truth is that we have been carried to this point on the wings of generous prayers.

Thank you

Martina

Home again - Thank God

Well here we are back home, it feels wonderful and strange, and familiar all at the same time. Toren is doing really well today. The journey home was tiring - but he was thrilled to get back into his own space and greet his four legged friends.

We are trying to pick up our routines as quickly as possible, while still acknowledging that transitions leave us a little unsteady. The doctors are hopeful that much of what we have been seeing is still related to the recent surgery and the trauma of long seizures in September. Toren has made considerable strides, and has learned some new and very useful skills in terms of supporting his through the anxiety of the side effects that look similar to seizures. While he has had some seizures with changes of brain patterns, the changes are not the same as his previous seizures - which might indicate that the surgery indeed did the job and that the brain is reorganizing in a more healthy pattern. We continue to pray, to give thanks to all who have helped along this lengthy journey and we are looking at ways to enjoy each day, a give back.

With love

Martina

Smiling through the bumpy ride

Good morning Dear Ones

It is the early hours of Monday morning... another week starts with so many questions swirling around us. I have spent the last two nights in my own bed - or maybe in Winston's bed - hard to know which! It has been both wonderful and tough to be home... being in my own space and on my own is so unfamiliar and yet good. Being so far away from the kids while this journey remains so uncertain has increased my sense of helplessness. But as usual no upset is in isolation from many blessings

The dogs greeted me with much attention... and Tara make a wonderful welcome home dinner... everyone should have friends that express their love in that old fashioned way - a splendid dinner...

Sunday morning Cynthia and I took a relaxing walk before Sunday School and it was so good just to move, even in the rather chilly air... Winston thoroughly enjoyed chasing for his found ball on Skidmore fields.

The kids in my classes on Sundays all asked wonderful questions, inspiring me to think wider and deeper, and supporting me on my own journey towards balance. I am so lucky to have the chance to engage with them, learn with them and from them. We explored profiling and its merits and challenges. They are a fine assortment of decent people. What a blessing to work in community.

I got to see my mother, visit for a while with Helaini's friend Jeff.... take the dogs to the dog park... Winston was well behaved with all the dogs... but enthusiastically jumped on every human... several times. (our next focus for appropriate behavior!!!)

I got to putter around the house, do laundry, get healing and loving hugs from dear friends, visit and giggle with my mother. Chat through my anguish with wise friends without restraint because I didn't need to keep it together in a public setting.... all this said, I also got to miss my kids... and grieve over the pain of watching them both struggle with this challenge our little family has been facing for what feels like so long now.

Toren remains in good spirits most of the time. It is harder for him at the hospital because he is sharing a room, and while the young man is a fine person... Toren is very vulnerable to distractions and stimuli these days... therefore it adds to his stress. He was so thrilled to be with Helaini and to hang out with Jeff on Friday night and Saturday morning. Friday was another determined attempt by several folk to get an IV into Toren's reluctant veins. The veins won... no IV - and Toren was so compassionate to the nurses. He never got cross not after multiple - over 8 attempts (I stopped counting then) to get access. The access is important because if Toren ends up having a major seizure this is part of the way we need to stabilize him. The doctors have left his medicines alone this weekend... because on Saturday he had a seizure that looked like all the others clinically but actually manifested differently in that his brainwaves were clearly disrupted. This complicates the picture on so many levels. What we do next will be discussed this morning once I et back to the hospital and we all meet with his doctors. While this journey remains full of unexpected challenges and turns. I remain confident that we are in the right place and supported by warm and wise medical personnel. My father would say you might not know the right thing to do, but you certainly know what the wrong thing is - so don't do that. It is good advice that serves me well in these troubling times.

I found myself writing this blog with deep quiet sorrow. It is hard for me to share less than encouraging and positive news. I know that you are all pulling for Toren's highest and best interests... it is so hard to know what those are. Thank you all for holding us in your hearts and prayers. We all feel very loved and blessed, and that helps balance the confusing whirlwind of emotions that rush through us... it might indeed be one of the reasons these emotions keep moving... you are sending a tide of love and hope in our direction keeping universal energy flowing through us, therefore we are not stuck in a pool of hollow depression... but travel through those places.

May your days be blessed, and may you each know how much your caring and communicating sheds light into the darkest of places.

with love

Martina

Moving in the Right Direction

Good Morning all...

Toren had a good night, he is resting right now having been soundly beaten at Blokus, though he wasn't feeling so great while we were playing... so I am not sure how truly triumphant the win should be!!

He has only had a couple of very brief episodes today.... and last night - so apparently adjusting the medicines is working. Toren is also doing a good job of thinking positive thoughts when the tremors start, and that seems to prevent them from snowballing. We have had some very good conversations with one of the doctors opening doorways as to how we might move forward from a psychological perspective... starting to work on what Toren wants his future to look like. It is a good place to put attention and effort. The only way to change the past is to use it to reshape the future more positively, then all that has happened in life becomes of service, rather than good or bad.

Eve and I went out for a lovely dinner and then a walk last night... that was refreshing and centering as well as good old fashioned fun.

Today we are feeling upbeat and positive, this blip might indeed be a refocussing of our energies towards the future while we continue to embrace and enrich the present.

Fiona is coming to spend the morning tomorrow... then later in the day Helaini is planning of coming down and joining us. My plan if all goes well is to head back to Saratoga on Saturday evening and teach my Sunday class... and walk my dogs... long long walks on brightly coloured leaves. Come Monday the doctors anticipate discharging Toren... and if that is the case then I will drive back, pick everyone up and we will all head North together.

Thank you all for the calls, the messages, the notes, and the offers of support. I know my dogs are being well taken care of thanks to Kristen and Tara... which is a huge relief. I am excited at the prospect of sleeping in my own bed in just two more nights.... The A/C is on in this room... and it is rather chilly to say the least.

Blessings

Martina

Teasing Apart the Challenge

Dear Ones

It is Wednesday morning.

Both Toren and I are more tired than a couple of days in hospital merits, but it is the length of the whole journey that is wearying.

He is having many episodes each day... they are tiring in and of themselves. They appear not to be seizures - but some sort of other convulsive event. It is possible that this is a response to the medical cocktail. The last 36 hours have been about observation, and data collection. Now today, hopefully we will start to get a clearer picture as to how to proceed... because this is really unpleasant for Toren... and is clearly leaving him distressed, confused and he is loosing some small parts of his very hard won recovery. That being said... he beat me at Blokus once yesterday, and is still very chatty and aware of what is what... he is very upbeat most of the time.

Yesterday was a long day... but Eve joined us for dinner and Toren was thrilled to see her, we caught up a bit, it was the perfect close to our day. Dr. Doyle came by and visited. Toren was delighted to see him... concerned with his health and wellbeing (the doctors) - so very Toren - but he was very clear that he wanted to let Dr.Doyle know that he feels the surgery has made a positive change, and he feels safer for it. It is pieces of clarity and expanded vision during the day that make being here so important to me. Toren is truly grateful for so much, he is inspirational, living in the now, but also dreaming, and working towards an even richer tomorrow. He was as thrilled to see the kind lady who delivers his meals on HCC12 as the familiar faces of doctors and nurses, giving her a big hug, wishing her a good afternoon off.

Thank you for the messages, the calls, emails and the offers for practical help. Right now we are holding steady. Visits down here are so long - just the car ride from home is 7 hours plus round trip, I am reluctant to drain anyone's resources, and yet company definitely helps a lot. That being said, Eve will most probably come by tonight again, and that will be great. Fiona hopes to be able to get in for a while tomorrow... and if we are not homeward bound by then.... well... come visit me at wherever they put me in the padded cell!!!!!

In truth, Helaini will come down for the weekend if we are still here... I hope that we come up with a medical plan - start to make some changes, and then head home keeping close contact with his wonderful doctors, and of course that somehow, we get another miracle and these convulsions stop.

Toren is resting peacefully as I write this, the sun has risen, and I can see pigeons flying around from balcony to balcony. The trees on the rooftops here are still green... so strange after all that colour at home. We had a kindly roommate who left yesterday... Toren was sorry that he didn't get to wish him well.... he was meeting with Dr. Doyle during the departure. He was a young man in his early 30s his mother too was by his side. This honor - to be there for those one loves, is humbling, there is so little one can do, it is truly an act of being human, versus - doing human.

I feel renewed determination to live wisely, and generously. To be as kind to myself as I try to be to others. There is so much to learn in this simple white walled room, overlooking this temple to material aspirations, built on the foundations of thousands of hopes for the freedom to be. Ah.... well here comes the breakfast tray.

blessings

I have been staying here - that is the right choice for now.

Ups and Downs

Last night we came back to NYU for some follow up video monitoring. Over the past week Toren has started to have seizures again. They are mild, compared to his past history... but have been increasing in severity and length. He remains conscious during them (which is very good news), but one's limbs shaking for 10 - 15 minutes again and again during the day and waking you up at night is exhausting, scary and painful. On Sunday night he seized for over an hour on and off.

When we got here he had a CAT scan and then got hooked up to the video EEG. The drive down took quite a while, and thank goodness for David calling me and insisting I had company on the ride... it would have been too much to drive with him seizing next to me, and not having someone to hold him and comfort him. Helaini, of course came to the rescue, traveling down, handling frequent rest stops with me... seizures - equal frequent bathroom breaks. She also administered his meds on the way down, and mine (chocolate - not covered by insurance - go figure, it must be because it is preventative not just curative)

Kristen was wonderful yesterday. She was so supportive, calm and level headed, and is going to care for 'the four legged kids' while we are down here. Tara was really good at helping me keep it together yesterday as we figured out what was the best course of action. I am so blessed to have friends and family to help strengthen us. It is so important to know that one's back is covered. I slept at the hospital in a cot.. it was just fine. I have already received reminders that homes are open to us, and that dear friends are available day and night to talk through things, or just to listen and comfort.

While I know that this could very well just be a bump along the path to recovery, it is very painful. Toren is so good natured about it all, worrying more about disturbing my birthday weekend than his own discomfort. He keeps apologizing for the upset and concern. We assure him that he is a beloved priority, and that he merits our continued support. I am drained and hanging on. While I feel loved and cared for and held up by all of you who love and care for us, I equally feel very alone... Helaini is so brave and strong, but it is tearing her up to see me saddened, and to see Toren struggling. She is only 21 and it is so much to deal with. I feel the weight of single parenting most strongly these days, because in the end the choices the decisions fall on me, I can reduce their weight by leaning on those who love us, on resting into the cushion of faith when I am too weary for human comfort. But I would like to be able to let go a little more... ahhh well - not today Scarlet

The medical team has been wonderful, readily available, and supporting us during the week and weekend. I am confident we are in the right place with the right people. And hopefully we will know more sooner rather than later, and that what we know will allow the very determined Toren to continue along his journey of recovery.

Well... enough whining... it wont fix it... sky has lightened and in sharing and reaching out I feel your love holding us up. Today is yesterday's tomorrow - it will for sure home some unplanned joys.

with love

m

Home 9 days - still blissful

Well first I guess I need to apologize for the gap in writing - it has just been so very busy, and while Toren did not have a particularly bumpy landing coming come... it was tough for me to navigate. I am finally not exhausted. Toren has had OT, Speech and PT a number of times each this week. He has had dinner at Cynthia and Tara's homes, gone grocery shopping with me and his sister on different occasions - the walker makes that possible and safe. He even went on a couple of drives... and sat out last Shabbos in the sun on our deck playing games with his dear friend Emma. Kristen is with us 4 days a week, Helaini comes for the weekend and does another overnight on Wednesday. We are finding our feet. Toren is in remarkably good spirits and works hard at all his therapies, he has started to do his own dishes again YES!!

He helped Helaini cook dinner the other night... all this little steps add up to more freedom and comfort for us both.

Last night we tried something new - Toren slept in his room alone - it was perfect - he made it through the night and felt so happy to wake up quietly on his own terms. He even managed to be showered, dressed and eating breakfast by 9:15am - after having pushed to do his toughest vestibular exercises yesterday night before bed.

We laugh a lot, sometimes over the faux pas that his speech challenges offer us as light hearted relief. Every single day we are overwhelmed with the blessings of community and friendship and family, whether it is sitting, talking in through with a dear friend over coffee... or e-mails, or my yoga students welcoming me home. It was so good to get back to teaching, to practicing, I am looking forward to Shul services so very much tomorrow morning.

Today and yesterday the weather has been glorious and I have taken several long walks with Winston in the windy warmth of autumn sunshine.

We finally have approval to do the work on the house, and so that is the next exciting project to manage along with Toren's continued recovery.

Marvin has managed to fill in for me to help with dog walking, and freeing me up to run errands. The occasional meal prepared by friends has helped me feel supported and cared for. All in all, life is much better coming into this Shabbos than last. We are blessed and are all better people for this journey... and that makes getting up in the morning more manageable.

Right now Toren is out buying a few bits he needs with Kristen, then he has OT and is necessary post OT nap, to be followed by the treat de jour - a visit from Jack. These visits from friends and family brighten up his days and really leave him feeling loved and cared for and connected to the larger world, and our community.

Tonight we will gather at my mother's for Shabbos dinner - a change of scenery is always a good plan.

I wish each of you a weekend of joyful renewal, and sunshine.

With love and appreciation for the place you have made in your hearts and lives for me and mine.

Shabbat shalom

Martina

Home & Reunited with Dogs

Today has been full

Thanks to the support of the hospital and the skills of Toren's dedicated Service Coordinator -

The County visited and increased his personal support hours today (this is incredible and amazing - when the system is worked by caring people the results are impressive). And visiting nurses came in and set up his case for in home PT, OT and Speech Therapy. The Speech Therapist was oh so smart - Toren will not be able to trick her, and fake her out. She had a great way with him, and with me too

Melinda visited this morning, so I got to shower, and organize the whole visits thing, Toren so enjoyed just hugging her and spending breakfast in her company. Marvin was great, having installed shower safety bars yesterday, he chipped in again today and collected the dogs from the wonderful Melissa... they are happy and healthy and clearly well cared for - and also thrilled to be home!!

The wonderful Tara had left delicious food in the fridge - what a treat, and later this evening she will hang here while Toren rests, and I take the dogs for a serious walk... important for both them and me!

The pharmacy was in shock yesterday as they filled all his scripts... making phone calls to confirm the dosages... that are over recommended limited. Still it was all handled inside three trips... which was fine because Helaini stayed until it was all handled. She even did the last trip to pick up the final medication.

Mummy had made Toren his favorite soup - which he loved at lunch time today. She had stocked the fridge with Helaini and even gotten flowers for me.

Then when we got home last night, there were balloons on the beds, and chocolate and dog toys too... as well as a Welcome Home balloon on the front steps.... Tara sure knows how to touch our hearts. Toren and Gracie (Tara's dog) were reunited last night.... it was so lovely... they just cuddled each other.

Today also brought, phone calls, and messages, of support and welcome... as well as a lovely arrangement of fall flowers from our North Carolina family. We are so blessed, and feel truly loved and supported. You should know I am keeping the phone on vibrate so it doesn't disturb Toren (so yes that makes me tougher to reach... but I will listen to voicemails, read texts and return calls within a day or so) ... and we are trying to schedule visits so he doesn't get too overwhelmed and exhausted. He is very gregarious as you all know, and short visits, timed wisely is truly a treat and so healing, however, too much and he is wasted for hours.

HOME SWEET HOME

We are all simply thrilled to be home.

I have already done battle with CVS to issue all his meds.... the kitchen table is quite loaded with little brown containers with white lids ....

Cocktails are numerous times a day...

Toren has already snuggled with Gracie and can't wait to see ours tomorrow.

We have ordered Gluten Free pizza and then Helaini will head home and we will hit the sack... Tonight I get to sleep in Toren's room...

Friday night Helaini is sleeping here - so I get to sleep in my own bed!!

Horray:)

love you all - more news tomorrow

Wednesday- Day 30 - Prepping to go HOME!!

Wow - what a full few days.
Toren got to walk further and stronger yesterday than any day before.
I got trained in all sorts of new skills - including driving the wheelchair over curbs, bump, etc. Not as easy as it sounds!
I am now checked on on supervising Toren doing the vestibular exercises that make him feel so very queasy - isn't that grand!! Still it makes the world of difference.

Toren is having a shower, and then planning to wear street clothes - what a treat.
Helaini is parking the car, and then it is simply the gathering of the last pieces of paperwork and filling prescriptions before hitting the road for home.

We have said many of our goodbyes, and it is strangely bittersweet. The caring, the support and the true investment in Toren's recovery has been amazing. We have been so blessed.

The last two evenings have been spent with Fiona visiting us, it has been so wonderful to see his face light up when he sees her. We are blessed with family, with friends and community... it holds us up, pulls us forward, and gives us strength and hope when ours falters.

Going home is full of its own challenges, but I am confident that will the support we have we will go from strength to strength. As we speak Marvin is hopefully installing shower bars for Toren. His wheelchair is being delivered to Saratoga... my mother is making favorite treats for Toren to eat... And already we have tentative plans for a special visitor on Shabbat, and dinner with dear friends at our house on Friday night .... the balance of the next few days is dog play and settling in - and of course the key element in recovery - SLEEP - that is for both of us!!

More progress. Monday day 28

Today Toren was chirpy and bright and worked outrageously hard in therapies. He walked several 100 feet without his walker. Which is amazing. Right now he is happy to resting in bed. He is very excited about going home and also about seeing those he knows with two and four legs. More news to follow

Saturday Night - Almost home...

Toren had another good day today... last night ended with a trip to the succah, blessings and the eating of challah... Toren looked at it and said "I can't wait to bake with Rabbi Jonathan again" It took a lot of effort for him to get that full sentence out, but it was so very heartfelt. Toren is so determined, every day he makes progress.

Today he had OT, and stood up by himself for 10 solid minutes while throwing balls into a basket... he even picked up some of the ones he dropped - a seriously exhausting challenge given the state of his balance systems!

His jaw was so set during the activity that later in the afternoon he had increased muscle pain in the jaw...

He had a whole hour of speech therapy today and he really is making daily progress... he has so many skills that he has gathered along this 2 year (and then some) journey - and they help him face the struggle to find words, to deal with the frustration, and the asking for support. He inspires us, hugs us, and thanks us - daily.

At PT today he managed to walk a whole flight of stairs taking reciprocal steps going down - this is incredible - he is so aware of the journey ahead, and the distance he wants to travel... but he is very humble about the effort he is making, or the progress he has gained. It is touching... and makes us want to cheer even more as he conquers the mountains that which we take for granted.

I am writing this from my own bed in Saratoga... it was so hard to leave the kids in the city - but I know that Helaini will give Toren her utmost support and attention, she is amazing. Toren's continues to be seizure free on his exotic cocktail of anticonvulsants.... and this is a blessing. For dinner tonight he had a salad from a great salad bar by the hospital... it was the first time he has been able to chew something that crunchy... he was delighted... his eyes were shining and he said it tasted soooo good. He is looking forward to returning to home cooked foods.

Friday afternoon - almost Shabbat

Today has been another full day of wonderful, hard won progress. Toren's determination is inspiring and his challenges are complex. He has earned the respect of everyone who has worked with him. The staff have been a true blessing... he is well cared for and treated with dignity and kindness, and just enough compassion to soothe.... and enough pushing to encourage him to move forward. Today he took no midday nap, just rested while socializing with Lindsey and Terri before they headed home to Western New York.

Helaini is back here and that is wonderful. I am going to be in Saratoga to teach Sunday school and then head back here, so I doubt I will do much connecting with folk... but then we will be home on Wednesday late in the day. We have been advised to keep Toren's life as structured and simple as possible, he is very fragile and vulnerable, and stimulus is very overwhelming... so we will see how easily he adjusts to home, with his wheelchair and walker to make getting around a possibility.

These last few days have consisted of meetings and trainings for me, planning for getting home. I am so excited as is Toren... he crosses off each day and counts down with a two thumbs up when he gets to the end of it.

It was hard to say goodbye to Lindsey, Terri and their friend Peggy - but Lindsey is planning to visit for a weekend once in a while come October - which is great news!!

Toren is so looking forward to seeing friends and playing with his gang of dogs!

We will figure it all out one day at a time.

We even went to the Succah here last night... and we will again before shabbos so he can wave Lulav.

Shabbat Shalom

Thursday morning - day 24 - on a roll

Toren continues to make progress. He is so determined to get home asap. We have a calendar up by his bed and each morning he crosses off the prior day... so he can see it getting closer and closer.

Today I got here by 7:30 he was already, up dressed and showered, and in a good mood. The access aide from last night was great with him. He walked with some support to the sink... a good 15 ft and stood to clean his teeth and walked back. This is incredible, all that balance and energy. We hardly ever consider how complex the systems are that keep us upright and moving. One of his wounds is looking good, the other one is slower to heal... Toren's need to scratch it might indeed be a contributing factor!!

In PT today he was really pushing himself, and his progress is profound... he was able to stand with his feet touching for a few seconds - a serious leap..

When doctors ask how he is doing - he answers with that classic Toren candor - the right eyebrow lifts, and he say "I do not feel great" When they look concerned he lifts his hands and says "I feel better, but I do not feel great" The smiles follow!!

The care here in Rusk has been wonderful too... we have been so very blessed. Toren has really enjoyed getting visitors... he is truly tired of hospital life so visits with Eve yesterday and Terri and Lindsey over the past two days and Emma before that - have been a boost to his spirits. I have been fighting a bit of a cold... but holding my own. I moved into the very sweet and snug apartment on 39th Street... it was a nice walk this morning before all the UN hoopla starts.

Last night Lindsey treated us to theatre - we went to Mary Poppins - I just smiled from start to finish - it was simply delightful and a lovely diversion. What a wonderful gift the Frasers have been in our lives.

Toren appreciates messages and cards, even when he can't always place names or faces, it helps him feel loved and supported.

His memory is getting clearer, and this morning he asked how I liked the show, and how the new apartment was - this is so wonderful.

The MRI still shows swelling and we will know more as the weeks progress - and the brain settles down from the trauma of the past month. Today Toren worked on taking apart a telephone - right up his alley - and suddenly a lot of work!

He recognizes the gaps and it hurts him - but he cuddles me tight and talks about getting home and playing with the dogs, and being among friends.

Tuesday - two really good days in a row

It is Tuesday night, the end of day 22... what a ride we have had, but today was also a really good day... Toren is working so very hard to make progress. On my arrival each day after a hug and a good morning kiss - he asks The Question - When can we go home to Saratoga... Today we addressed that question with his team... and we have a target date... Sept 29 - Next Wednesday - it is tentative, but everyone is confident that if he keeps making progress at this rate. He will truly be ready to go home and do all the rest of this journey from home. He is so excited.

Today he walked a whole flight of stairs... it was exhausting for him, but he was so determined to do it. He also took on his vestibular exercises with grim focus... and it was better than yesterday. He worked hard at everything... his nap at lunch time was so sound, he slept through lunch - drinking an Ensure to get him through his afternoon therapies.

For added delight today his dear friend Emma came in for a visit... he couldn't stop beaming. He also really enjoyed reconnecting with our friends Lindsey and Terri from our May trip here. It was so good to have all this distraction. He was so ready to sleep and hear the Shema tonight. Tonight he has his room to himself again... so he is very relaxed.

In keeping with that flow of positive progress today I got in touch with a connection from my friend Inbal in Israel and I have an apartment to stay in very close to the hospital for what I believe will be the balance of our stay here in NYU. We are so blessed... in too many ways to count... and today it is gloriously obvious - I can feel it without the energy of seeking the blessings.

I enjoy so much hearing news from friends, even when I don't respond directly.

Thank you for your notes, your wishes, directly and through my mum and other connections. We really do all feel held up. The caring community sent a lovely gift, it lifted our spirits - and Toren didn't even want to share the chocolate - all the more for me!! - My medicine of choice.

Tomorrow I am planning on lunch out with my dear friend Eve... and more time in the evening with Lindsey and Terri... but it will be a busy morning of packing and cleaning this apartment for the next folk. I am off now to buy clothes for another patient whose family is overseas... it is wonderful to be able to do something for someone else.

Have a good night.

With love

Martina

Monday - An all round good day

Hi Dear Ones,

We have had an all around good day today.

Toren seems clearer headed, and his speech is more focused more often... it does a heart good. Helaini was with him first thing, so I had a lazy morning, laundry, puttering. Then while Toren was being worked hard by OT and PT his girls went out for breakfast at the Moonstuck Diner. It was nice just to sit and shmooze. Toren ate well today enjoyed chatting with me during his two hour break between therapies... He chatted about Lindsey and Terri - friends from our visit in May. He was so excited to know they would be visiting with us for a few days. He is cuddling right now with Helaini, it is so good for us all to just hang here together.

Toren worked so hard today in PT and OT - he was able to stand unassisted for 1 whole minute - this is huge progress. He also did managed to walk a little without support... amazing. I am so very impressed by his determination - Every morning he asked to go home to Saratoga. Each day we talk about how working hard and resting well is the pathway to us getting home. Sometimes the very same thing makes me want to cry with both joy and sorrow. He has been through so much, and the journey is far from over, but he is so patient with us, grateful for all the help we try to give, always thanking Doctors, Nursing, Therapists and general staff - so much so that it warms our hearts. He has a serious challenge with his balance right now - so he needs to do exercises that stimulate the vestibular system... the result of the exercises is to make him very dizzy and queasy - at least in the short term. Such a tough gig - the exercise to get well makes the symptoms worse in order to help.

He was so disoriented.

But was willing to do it again when it was required... he is so courageous.

On Wednesday I have to give up the apartment for the next family that needs it... I am in the process of deciding what is the best choice for me. I imagine that we are going to be here for several weeks yet.

I send you love and appreciation.

Martina

Sunday Night - Day 20 draws to a close

Good evening dear friends

So today was a therapy free day for Toren.

He got to have a real lie in - he didn't really get up until gone 10am... and then only for breakfast... He went back to bed for a stretch to let the headache medicine work its magic... Then it was time for a shower and for Helaini and I to encourage him to go for a tour around the building... he held up for a short while and then more rest... before and after lunch.

But after dinner we played games, went for a walk along the corridor and toured the lobby. He was much clearer today and thoroughly enjoyed his mid day foot massage... He scars are less itchy without the staples and they are looking less angry with each day - even with Toren's fingers working on them.

He is clearer headed today and a little less dizzy - reducing one of his meds. is helping. It is nearly 8pm, and he is snuggled down for the night... therapy starts at 8am tomorrow morning.... so we will be getting an early start to the day.

Shavuah Tov

Martina

Erev Yom Tov - G'mar Hatimah Tova

Good afternoon all,
Toren has had a very good and tiring day.
The stitches are OUT - great
The scars are a little inflamed so he is on precautionary doses of antibiotics.
As of tomorrow we will start to wean him off Dylantine (one of 5 anti-seizure meds in his cocktail!!)
If it goes well, he could be off it within 2 more weeks - that would be good... it might be contributing to his virtigo and confusion.
He worked hard today - 2 hours to PT
2 hours of OT and a therapy appointment.
Right now he is cuddling his sister and resting...
Soon a shower - and that first head/hair wash - soooo exciting... a real shower!!
Then he is going to attend services to help make minyan... such a mensch!
Bless you all
M

Progress & smiles

Good Evening dear ones
It has been such a full 28 hours, it is hard to know where to start - so this is a very quick over view... maybe more later... but I am a little tired in a good way.
Toren moved to Rusk at about 4pm... on Wednesday
Room was small, no rooming in (for me) - a sitter/personal access aide was on board for Toren...
He was anxious to be in a new setting, roommate was not a good match...
Toren was sad I was leaving, and didnt really grasp the whole idea of rehab.
He had a rough night (I actually slept really well... a rarity)
By the time I arrive at 7:45am today (I left after 10:30pm) Toren was very sad and rather shut down... transitions are hard for him.
Toren, felt queasie, sad and frustrated.
During the night, even with an aide he was able to sufficiently mess with his PIC line so that by 4am - the doctor on call had to remove it - this has several ramifications - A) Toren was relieved of an irritant Good - B) He knows he can do that Bad C) There is no easy access for blood draws or emergency medication if he seizes... (Bad) D) We have to make another set of decisions - semi-permanent port - new PIC - nothing - Central Line (hard to know if this is good or bad - but it adds another dimension - hooray!!)
We had lots of therapist evaluations today, meetings with rehab docs, and learning the ropes...
We had a wonderful - absolutely perfect access aide for Toren today... (Thank God)
Melinda visited - wonderful - I now have clean laundry again - Toren has new clothes - we went to MACYS (very big - lots of people - not so good)
I feel more like me... walked on the streets, sat in the garden for lunch... Toren is bright and perky - he WALK UP # STAIRS TODAY AND BACK DOWN - THIS IS AWESOME PROGRESS,,,
He has loved visiting with Melinda, and his access aide...
He got to wear street clothes and crocs.
He is making progress each day - we are blessed, blessed, and blessed again.
The nurse today was incredible and responsive... the therapists and bright and young and pretty - very motivating... they are kind and very thorough...
We are in good - no excellent - hands.
Prayers are answered every day - I happen to like to answers we are getting these days!!!
Thanks for being there - for writing for cards, for emails, for blog comments - you are a pillar of strength - I can feel you holding me up as I hold Toren.
With love
Martina

Continuing the journey - Rehab today!!

Just a quick note

Toren had a better night. He is feeling off color today, head and stomach aches. This morning he was resting and feeling sad, and confused. I am sure that moving rooms was disorienting to him... as will today's change. However, once we are at Rusk Rehab later today and he adjusts I am confident he will make his usual leaps, he is both determined and willing. By 10:15 he felt a little brighter and so we went for our longest walk yet. He seems much stronger and steadier. He is speaking more clearly and able to focus more each day. Praise God.

Thanks for your reaching out to us, with words and prayers and visits. It makes the world of difference.

with love

Martina

Day 15 Draws to a close - more progress

Today was a very good day - with some bumps along the way.

Toren has a really rough night last night - I stayed with him, he was either wonderful and resting or trying to leap out of bed, or trying to remove his own incision staples !!! What fun - I got very little sleep... but he didn't get sedatives - which is progress in a warped sort of way.

Today he walked many more times, and further, and stronger. He is talking up a storm, and more of what he says is clear and on topic... and obviously quite a bit is still disjointed and confused. He has no understanding as to why we are in the hospital, why he had brain surgery, or any recall right now of having Epilepsy - sounds good to me!!

It was painful to explain it all to him, and watch him try to grasp what I am talking about. He was delighted to see Rabbis Linda and Jonathan, as was I - it was tough to see them leave. We had a lovely Middle Eastern picnic for lunch - Toren enjoyed it too. A nice change from hospital food.

Toren has PT and OT again today, and he is starting to read more and write a little. This is wonderful progress.

He is very willing to do the work... and even when he is tired can be coaxed to do just a little more. He has spent more of the day in the chair than in bed. Right now as I write he is in the shower, and then we are moving out of ICU onto the floor.

The other highlights of the day, include several falls - one hard enough to warrant a trip to CAT scan!! He seems fine enough. The falls come from his enthusiasm to get up without assistance or any warning, but he is still rather unsteady on his feet - to put it mildly.

The other progress is that we are in line to move into Rehab, we met with their intake MD today and hopefully tomorrow that will happen.

Lots of action... well off I go to pack up our stuff.

Blessings

Martina

Monday afternoon.... Day 14 - More Progress

Toren is now seizure free for over 48 hours - a big step in the right direction. He is tolerating the very high doses of meds with relative ease... meaning his liver is handling it all. Right now I am watching him and Helaini cuddling/resting in his ICU bed. He is happy to be free of the EEG - and is being very responsive to instructions not to remove the staples in his scars. The staples will come out on Friday... thank God. Today Toren managed to feed himself most of his own lunch -this is wonderful progress. It did require a fair bit of clean up - but honestly so what!! He managed to walk the length of the ward with his Physical Therapists... also amazing progress. He has very limited stamina - but given what his body has been through it is to be expected. Today before lunch - his girls gave him a shave, he looks so fresh, and was thrilled to be able to dress in his own PJs. Before dinner Helaini and I are planning to walk him around the ward again. Either tomorrow or Wednesday we hope he will be stable and strong enough to move to Rehab here at NYU. Almost all his meds are now in pill form. We still have a journey ahead of us, but for now we are able to dwell in this quiet place of appreciation. The hospital staff as a whole has been wonderfully supportive. The apartment from FACES has been an incredibly generous blessing.

Our family is so fortunate to be held in the prayers and hearts of so many. Today and yesterday Toren asked when we would be going home to Saratoga Springs and our dogs. It too is a wonderful sign of recovery.

I look forward to getting home, to sharing Shabbat with friends, to walking the dogs, and to seeing the faces of our own community. May the days between now and Yom Kippur allow you to make whatever peace you need between you and yours. And for any misdeeds, intentional or accidental in this past year... please forgive me.

May you be written in the Book of Life for health and contentment, peace and success in all your endeavors.

And may you remember to pray with sincerity.

With love

Martina

Monday morning - day 14 - holding steady

So this is the last day of week two.

What a ride.

Right now at 8:30am Toren is resting the breakfast tray is waiting.

He had a really rough night - Helaini and I slept at the apartment, we were so weary.

It was most probably not the best choice

Toren is driven crazy by the itchiness of the EEG and the incision staples. He was so restless and agitated during the night that the nurse ended up administering a sedative twice. Obviously we will not be leaving him alone at night again at this stage.

He had such a solid day yesterday, he was so very co-operative and really making good strides. It is another stage of the journey, and sometimes I miss call his needs. I feel like I let him down last night. But still I have had a couple of nights in a bed, so that should hold me for a spell. We are going to be considering removing the EEG monitor today.

Linda and Jonathan will be visiting tomorrow morning - which will be lovely I am sure. Fiona is coming over tomorrow evening. And Melinda is coming on Thursday, so we have lots of support and breaks. Helaini leaves for Albany tonight, it has been so wonderful to spend the last 4 days with her, Toren lights up when he sees her.

With love and gratitude for your prayers and concern.

M

Day 13 - More Progress

Hi Friends,

Sorry for the delayed writing - we are so very tired.

Toren did a great job today, he ate well, gave hugs and kisses, enjoyed a visit with his cousins Sarah and Hannah. He walked around the bed to the loo(with assistance)... twice today, sat in a regular chair for over half an hour - several times. He is speaking more clearly and more frequently and yet again I am thrilled. He is very loving to Helaini and I. Tonight he has a fever again - so his cooling blanket is back on.. hard to know why - he might just be exhausted. He is able to follow many more directions during the Neuro checks. Hopefully we will leave ICU soon and then we might make it to rehab later this week, if all goes well

Your prayers and notes, touch our heart, hold us up when we feel too weary. We are truly a very blessed and fortunate family.

More details tomorrow.

With much love to all

Martina (and children)

Shabbos - Day 12

Toren had a very good day yesterday that tired him out quite a bit though. Friday included PT, and by the late afternoon the task of standing that seemed so imposable in the morning was accomplished with great pride. Toren was able to eat, with the help of mummy and his wonderful nurses. He had some applesauce, pudding, jello and even had pasta for dinner! He is now taking more of his meds orally and following directions much better. Toren had a restless night last night. He managed to throw himself out of bed but not to worry he did not incur any extra injuries, internal or otherwise, from the event. Our dear friend Cynthia came for Shabbos and offered to stay the night here at the hospital which was truly a blessing, giving both mum and I a full nights sleep and some time together just the two of us. Toren had a breakthrough seizure this morning that manifested in his legs and is now back on the external EEG and has been resting all day due to the Ativan they gave him to resolve the seizure. Toren had a fever today and is on a cooling blanket now which seems to be doing the trick and we are keeping in mind that with every two steps forward it is only fair to take one step back. We know you are all behind us and can feel your love and support, it makes the world of difference given our emotionally exhausted state of being. We are happy to be together though for the start of the new year.

All my love

Laini, and mum sends her best

Erev Rosh Hashana

So as day 9 winds to a close Toren is resting comfortably - considering. He is very very exhausted, it is a struggle for him to speak, clearly his mouth and throat are sore. He has only one IV attached to his PIC line... Toren has had PT and OT today, tasted a spoonful of Jello (the feeding tube has been removed). He also said ouch in response to the question "are you in pain?". When I held the phone to his ear so he could listen to Rabbis J & L voices - his face brightened. I think he is tired of listening to my voice - How can that be??!! - No need to respond to that question.

I will not blog or be on the phone during the first day of the Chag... I send you my love, and my deepest gratitude for keeping us in your hearts and prayers. We might have a long journey still yet ahead - but this day has been full of progress. With help Toren will go from strength to strength.

My mother and I are siting here quietly simply enjoying looking at our boy!

L'Shana Tova.

M

CELEBRATION TOREN IS OFF THE VENT

This is a quick note

About one hour ago he came off the vent and off the anesthesia - he is breathing fine - trying to talk

Praise God

Thanks for your prayers

More news soon

M

Good morning dear ones,

Today is erev Rosh HaShanah - it takes conscious focus to relate to that here in the timelessness of Neuro ICU - I imagine many of you getting ready, making food for those you love. Such simple pleasures. And yes I know some of you are rushing and feeling pressured.

I want you to know that I am with you in spirit, I sense that this year will be full of many things, ups and downs, challenges and triumphs - I have also come to truly appreciate that peace is not an external thing, no matter how much we acquire or accomplish - peace comes from a rare mix of action and acceptance. I wish you all peace of soul and the power of wisdom. May your days be full of blessings that you have the ability to notice, and be nourished by.

Toren appears to have been seizure free since midnight (ish) on Monday night.../ wee hours Tuesday morning - this is wonderful news - Praise God. Toren is so strong he has spent many moments - trying to sit up - and/ or remove the various throat/nose tubes, this is my retribution for having pushed him to workout!! (Krit & Helaini I hope you can truly appreciate the humor in that). He appears to have developed quite the tolerance for Propofol - the anesthesia!! - and is way more active on it that the nurses expect. (So very Toren) Right this moment he has been resting comfortably for an hour and a half... having tossed and turned for several hours.

Eventually I left here last night to sleep in the beloved FACES apartment bed!! What a gift... so now I have the quietude to be present to todays challenges.

Last night they started tube feeds, which quite honestly make him restless - but are necessary at this point. Hopefully today the Epilepsy team will start the wean from that and his brain will stay quiet and he can be taken off the vent... it may take several days. Everyone on the team wants to go slowly to protect him. The doctors are wonderful and very informative. Each staff member brings something unique and important to his care, to our view of how to best support Toren in healing. The nursing staff are an inspiration - it makes me even more respectful of the choice of career that Helaini is following - these women are truly angels of mercy. This hospital is so family friendly - I never feel like I am unwelcome, or intruding - it is a wonderful culture - they allow us to help and is soothes my mothering soul to be able to keep caring for my beloved son.

Our friends Rabbis Eve and Elliot came down last evening and gave me a break - I showered and changed (everyone was in favor of that!!) Elliot brought me a Makzor in case I don't get out to join the several communities that have generously offered to welcome us. I am self medicating with Cadbury's Dairy Milk - and yoga in the cracks(okay more chocolate than yoga)... both serve a unique purpose. There is a wonderful salad bar across the street, and I have a fridge full of goodies thanks to Fiona. I even made myself a little veggie meal last night - So yes I am taking care of myself, which is as many of you know tricky for me!! Thanks for the encouragement!(read nagging) Marvin is very kindly driving my mum down today - he is too under the weather to visit Toren himself. They will stay overnight and then head home tomorrow late afternoon. Helaini will be back early on Friday for four days. It is easier when we are together, our little trio.

Thank you all for reaching out - I read every e-mail and comment several times, it helps - I share what you write with Toren... Please send me emails about your lives, or the world at large... to distract me from this world, and to help me feel part of your lives. I send you love and wishes for a joyous and healthy new year.

Martina

Today is the beginning of Week 2!

Toren is resting quietly. It is 7am... he had two wonderful nurses with him last night. The care here is amazing. While he had his morning bed bath, etc. they wisely sent me packing... It is very hard to leave him. I did a little bit of yoga - which settled me, and then I got to walk around the block, and see the sunrise - the sky was full of pinks and purples, I even got to pet a very cute 5 month old puppy - so here we are waiting.

Toren only had one clinical seizure yesterday night at around 9pm. This is better than the night before, baby steps. His blood pressure has become a bit of an issue - it is too high - hard to know why given how many medications he needs right now to stay stable. They are treating it as needed. Even though Toren is still on the ventilator he is breathing over it much of the time... which is good, it means his lungs are working well and he is strong. Today the doctors hope to reduce his anesthesia slowly today.

Yesterday, Toren was much more active, in fact he has a restraint loosely on his left arm, because he started to remove one of his tubes!! He has moved his right arm and leg more in the past 24 hours, which is wonderful news. Also, he has opened both his eyes. While none of this is on command, it is a good start. So while the progress is slow - it is enough to keep us positive. I remind myself every day - that Toren has pulled through before, that he is strong of spirit and body, and that the prayers of many friends and family around the globe are holding us up.

It is strangely peaceful to sit here with just Toren,

Helaini left on the evening train, and will be back on Friday, it was very hard to encourage her to go... but she is holding a stake into the future, and that is so important for us all. It is hard to imagine that tomorrow is erev chag - hospital stays distort time. Friends have called, and sometimes I even pick up - but it is all about timing... nothing personal, email and blog comments are shared with Toren I am sure he can hear me on some deep level this support pulls him forward.

With love to you all - thank you for gracing our lives with your presence - we are very blessed.

We are very blessed to be here, to be so well loved.

Monday morning, bumps in the road

Good morning my friends,

Just before our Indian food arrived, Toren had another clinical seizure, it was mild. The doctors boosted some more phenobarb and increased the anesthesia a little higher (this is the propofol we are trying to wean him off). He had a peaceful night until around 3am and then started to have a couple of mild clinical seizures, raising the Propofol again settled him for several hours and then at about 7am he had another mild seizure. Right now, he is resting quietly. The doctors feel we are making solid progress... with these clinical seizures and only 2 subclinical seizures overnight. Today the plan is to do nothing more - or less and see if he can be stable on these doses. Then start the weaning process again. The good news is that he is withdrawing to pain on the lower doses. This a positive for checking 'normal' brain function. He is moving his right leg a little more... so that too is progress. Helaini will go home tonight. She has classes on Tuesday and Thursdays. She will be back for the weekend. I will miss her. My mother and Marvin will come down and give me some support over the next few days. I am trying to sleep a few hours each day/night in the bed at the apartment - which helps my body. I need to start spending a little bit of time outside each day. But it is hard to leave Toren.

The weather outside is beautiful again, so I am hoping everyone can be enjoying a glorious last weekend of summer.

Helaini stayed with Toren until 4am - I got back here after 5 wonderful hours in a bed... and took up the holding of his hand, and chatting with our beloved boy.

Thanks for the well wishes.

Martina

Sunday evening - more progress

Today has been a really good day. Only good news.

Toren is often breathing over the vent - which indicates his lungs are strong and that he is coming steadily out of the sedation. He is on about half the dose of anesthesia that he needed to be stable yesterday at midnight.... this is wonderful - we have both felt tiny squeezes of his left hand when we are holding it - this is so heart soothing for us both. Being with him we can feel his strong spirit and his determination to pull through.

The plan is to keep slowly decreasing the propofol (anesthesia) during the night, while increasing the doses of his anti-seizure cocktail! Strange Toren get's cocktails in hospital - but we are surprisingly sober. Today Fiona stopped by with more liquids - and bless her - clean laundry!!

Eve and Elliot visited and that was lovely - they brought more books to read. Our friends from Shul the Silverman's were also here - being a very generous gift from the Sisters Ami. We feel so very supported.

Yesterday's visit from my friend Jonathan was very healing for me... if gave me that chance to cry just enough to take deeper breathes. Lisa and Fiona were amazing. We must be one of the most blessed families. My mother will most probably come down for a visit early this week... and Marvin think's he might be able to come down and let me get a chance to sleep while Helaini is in Albany, at classes.

Each day one of us takes a long nap... we juggle our way through the night - last night I slept/dozed in the room. Helaini went to the apt at 4am and returned well rested and clean before noon... I then went for my nap and had a lovely long hot shower.

Toren radiates such a strong energy - he seems peaceful most of the time. His ability and determination to pull through fills the room. This hospital has the most caring culture. Even the maintenance staff ask how he is doing.

To all of you - please comment, send emails, it helps us to no end to be upbeat and hopeful and feel held and loved.

Bless you all.

with love

M & H

9:45am Day 6 - Good News

Good morning...

Toren has an easier night, no clinical seizures, and only 4 sub-clinicals. For the balance of the night he was stable. He is s strong, and his chest is clear and his vital signs are solid. There was some concern about the bladder/kidneys - but in the end it was just the Foley that needed to be replaced.

This morning the Epilepsy Doctors decided to start to very slowly reduce his anesthesia. He appears to be tolerating the changes... this is wonderful progress and we are so relieved and grateful. We know there is still quiet a journey ahead of us, but this is the first step... and one we were not completely certain we could get to.

The two nurses in the last 24 hours have been amazing, attentive, proactive and wonderfully compassionate as well as intuitive. It is exciting to see the powerful impact of a cohesive and dedicated team. They are so very good at including the family.

The lead doctors on the case gave us cell phone numbers to reach them directly for when things got rough, and we not only used them, but were thanked for doing so!!

We are in the right place, with Toren's angels in overdrive.

For your, prayers - messages - emails and blog comments - which we share with Toren - thank you all... it makes such a difference - it is easier for us to respond to writing communications than phone calls - after all this is ICU - and we have been engaging with a significant number of talented medical professionals!!

lots of love

M & H -

11pm Saturday Night... its been a rough day.

All day today we have cycled from relief to anxiety and back again. The medical team have been trying to managed the seizures and with each change(increase) in anesthesia and anti-seizure medicine they make progress for several hours as many as four - and then the tide turns and the dragon rears its head again, and Toren's seizures break through the medical barrier... and the team consults and explains and makes significant increases in dosage and Toren's brain and body get some respite before the fight begins again. Helaini and I are both sleeping here in the room tonight. The doctors have already put a plan in place for the next onslaught if it comes. We feel your prayers. We had visitors today, lots of powerful and positive messages and support... I will share more about the day next time we write. Wishing you all a peaceful start to your week.

All our love,

Helaini and Martina

Shabbos - Day 5

Dear Friends,

It is shabbos morning. Marvin stayed with Toren until 3 or 4 am - all seemed quiet. He stopped by before he left. His being here allowed Helaini and I get to a decent enough night's sleep. And for that we are very grateful. I got here a little after 8:15 and Toren has been having clinical seizures even on the propofol and fentanyl - these are anesthesias. He has had 12 clinical seizures since then... 9 in half an hour and then the doctors increased the propofol and he has improved. Now he has had 3 in the past hour. The team is consulting and studying the data to decide how to proceed.

We are understandably anxious

Prayers are welcome

Friday 4:30pm - News from the OR

Toren went into the OR today deeply sedated and still seizing. The hope was that a short time on anesthesia would break the seizure cycle. After quite a few hours of trying the dedicated team was not able to keep him seizure free. So as I write the wonderful Dr. Doyle is completing the removal of the electrodes, and doing the bone work to close up the openings in the skull.

The experiment gave us more information, however, it was not the information that we had hoped to receive. While Toren had the resection on Tuesday, it was not sufficient to stop seizures, and the remaining seizures are defuse scattered around the whole left side of the brain. Far too many important valuable areas of the brain to allow for further resection to be considered.

What does this mean... well it is early days yet.

First we get him stable and recovered from these challenging days... we take stock, we change the medicinal cocktail.

We are so disappointed, and sad... and yet we remind ourselves... that a change has happened in the brain, and Toren has a brain that is highly reactive to change... it is dramatically reorganized differently than the 'standard' brain... maybe with time, another reorganization will take place and Toren will heal with the same miraculous gift that has graced our lives until this point.

Toren has gone through so very much, and the loving supportive community around us has held us up.

Thank you for all you have given us.

Shabbat Shalom

with love

Martina & Helaini

Still in the OR - NO SEIZURES

The waiting game continues...

Now having stopped the seizures with high and fast doses of Anesthesia the team wants to try and wean him off very slowly and see if Toren's brain remains quiet. If that works they will keep the electrodes in place... Otherwise they will need to remove the electrodes. Your prayers for the highest and best for Toren - and continued skill and wisdom for his medical team would be greatly appreciated.

With love

~Martina and Helaini

Friday morning - back in the OR

Dear Ones,

We are waiting in the recovery room. They decided to take Toren back to the OR to try and stop the seizures with General Anesthetic. If it works they will keep him under and on a vent for 24 hours and then start to lift the sedation and assess the state of his brain/seizure function. If they can't stop the seizures then they have to remove the electrodes and close the brain - we remain confident that this team is exactly who should be working with us. Please keep Dr. Doyle, Alison and all the team in your prayers and hearts. We are grateful to have you behind us, sending love and light.

Fiona and Lisa where on point to support me yesterday, plying us with food and companionship. Helaini is back in NYC having jumped on the bus last night... she is full of positive energy even on very very little sleep.

Jonathan was willing to be a sounding board for me very early this morning.

Marvin is going to come down for a visit today, which will give Helaini and I a chance to breathe some fresh air before he goes back home to be at work early tomorrow morning.

I will post again soon.

48 hours after surgery

Toren is resting, in a deeply drugged sleep. It is almost 11pm on Thursday night... we are back on the Epilepsy floor - in the same 4 bed nurse monitored unit as last time. We are in the other window corner. The doctors are working diligently to stop the endless seizures... to quieten the brain and in essence let is reset - much like rebooting a computer. This team of doctors and nurses are amazing, the open interactions, the questioning of the situation, the willingness to explore all the options, the humility is awe inspiring. Even while the doctors remain very concerned, I feel this sense that we are walking the right path... he looks to healthy and strong... all his vital signs are perfect, and yes it is alarming that the seizures remain so out of control. So fear or faith, it is a choice, I choose faith.

We have come so far,

Day 3 - Thursday Sept 2nd -More Info

The plan as of now...

Somehow stop the seizures - more medications... let Toren's tired brain and body rest for 24 hours and then slowly peel back the medications so that he can seize again, hopefully with a clearer pattern, similar to his prior seizure pattern and then the doctors can come up with a plan of action. Mapping, further resection/s, vassal dilator, etc. etc.. Because of the Tonic seizure activity we are staying up on the 12th floor - Neuro ICU - at least for the time being.

Your prayers and messages make a significant difference. I am in awe of the staff here. We are so very blessed to be in this place, supported by all of you, seen and unseen... and in so many different ways.

I find myself in a place of strange peace, the knowledge that we are doing what we can, and that God will handle the rest is soothing. The unseen - ness of this path we travel is its own strange blessing. The candor and inclusive style of Dr. Carlson and Dr. Doyle and his NP Alison is truly inspiring. However, this journey plays out. I know without doubt that angels are walking the path with us, and that we are held up by the love and kindnesses of so many.

Day 3 - Thursday Sept 2nd

It is Thursday morning I started writing this at 8:30 - but have been fortunate enough to have various meetings with doctors and nurses. Right now at nearly noon, Toren is sleeping quietly even though he is have a lot of sub-clinical seizures - which means we can see the seizures on the EEG but not in his body. He fairly well drugged up with sedatives, anti-seizure medication and pain killers, topped off with some antibiotics and medicine to lower his blood pressure. He has been so kind and brave, but is obviously periodically very uncomfortable physically and emotionally.

It was another long night. Toren has been having increasingly longer and more frequent mild seizures.. so the doctors can collect lots of data and that will help them figure out how to address the 2nd and maybe 3rd focal point/s. Toren had a restless night, but still managed to get some real sleep. He is still unable to move his right side in any significant way.

We remain confident that this is not the result of a stroke... they did all the MRI/CAT scan's yesterday and right after surgery. We have seen this before after seizures... how much rehab it will require remains to be seen... but we know that Toren is determined and strong.

He is still unable to really talk, but lets us know he has needs (and we are often able to understand what to do for him).

Toren gives waves to all who enter, and hugs to many of his favorite nurses. He enjoys holding hands and giving us hugs. He is often aware of the onset of the seizures, and lets us know with sounds, or hand waves.

Helaini and Mummy left yesterday early evening and Fiona spent most of the evening with me, plying me with liquids, foods and much needed distractions. I am so lucky to have friends who have been email, commenting, texting, phoning and visiting. It helps.

While I am rather tired (Fiona will come in this afternoon to give me a chance to go back to the apartment to sleep.

Toren's drains are out - which is a good thing - I got to help by holding his good arm - it was my work out for the day. His doctors and nurses have been so wonderful and supportive and clearly remain determined to keep me involved in the conversation about what to do next.

It is strange to say - but brain surgery and post operative experiences are not as horrific as I had imagined. In my world I feared it would look a lot like our crisis in the ER and ICU after an uncontrolled episode... He is far less uncomfortable, and less vulnerable. more later

The Morning After the Surgery

Is it 11:30am... I have finally made it back to the apartment to take a break, and get a little sleep. Helaini and Mummy are with Toren, bless them.

Toren had a rough night... he didnt get to recovery until around midnight. The surgery went well. All the grids, stripe and probes are appropriately in place. The left front temporal resection was also completed successfully. The was some complications upon waking him. He was hard to rouse... very hard, enough that the did an emergency CT scan before bringing him to recovery. He is post seizure... that was the problem. He has what we hope is only temporary loss of mobility in his right leg and hand, he is struggling to speak, but has said, YES, NO, STOP, MOVE and OK - and clearly recognizes his family and reaches for us, and hugs us with his good arm. He is in a lot of pain, which the doctors are trying to manage. He is clearly confused, and exhausted, Thank God however, he is stable... now we wait for more seizures, to get more data about the 2nd focal point. He is still in Neuro ICU and we might move to Epilepsy floor later today, or tomorrow... For added excitement he lost his IV access at about daybreak... and it was impossible to find another vein.... okay they found one, but it only lasted 5 minutes. So then we went down with Alison, Dr. Doyle's very wonderful and capable NP and got a PIC line put in... and then to MRI just to check how things look today.... Now that he has a line in, he can get his medications.....

The left side of his face is swelling slightly....but his color is good and he often reaches for us, to give us a hug to his chest.

Thank you for all your well wishes and prayers... we will keep you posted

Toren's surgery was successful. He is stable, although he has had a rough night, and is in the Neuro ICU. As soon as Martina gets a chance, she will blog more details.
- Fiona

8 hours into the first surgery

We have moved waiting rooms, now we are waiting outside of the recovery area, Toren is still in surgery. About 1.5 hours ago Dr. Doyle was starting to put the grids onto the second half of his brain. We are all playing Rummikub - I am channelling my angst by getting out fast twice... off we go for a 3rd round. Once the surgery is complete, they will wake him up in the OR and keep him there for a while to check that he is stable before moving him to recovery for 4-6 hours... then we will go to Neuro ICU. This will not be a short day!!

Surgery Update

It is 4:30 and the news from the OR is that Toren is very stable and that they still have a long way to go... the original estimate was about 8 hours... however, longer isn's a bad sign, they are thinking that they are about halfway through. It is a very complex surgery working on two separate areas of the brain.

We are doing rather well, much calmer than I anticipated, Mummy is having a rest now, Fiona has spent most of the day fully supporting us, plying us with liquids and foods, and distractions. We are very blessed, Eve, visited for a while which was wonderful. The first 8-12 hours after surgery are rather critical, so he will be very closely monitored. I will be staying with him tonight while he is in the Neuro ICU. Mummy and Helaini will use the apartment as necessary. Again and again, we aware of our blessings each one of you reading this, expanding the circle of concern and prayer are holding us up.

Thank you.

PS: we have some great photos, hopefully we will post them later in the week... Toren fully shaved his hair last night... he looked good... with just the goatee/van dyke.....

He just went into the OR

So it is just gone 11am and Toren has gone in for his first surgery. We met with all the doctors and nurses. What a wonderful team. We are very fortunate and blessed. Toren has been so positive and upbeat, while owning his angst.

The first surgery is more exciting than we had expected. The medical team has been able to ascertain without doubt, one area of the brain where the seizures originate and they will be removing that today, as well as placing depth electrodes, and a grid. The secondary areas of concern will then be more clearly observed and appropriate actions considered for the second surgery. Please keep Toren, Dr. Doyle and his whole team in your prayers... surgery will be about 8 hours, or maybe longer. Thank you for all your reaching out to keep us strong.

Today is the Day

We are heading over the to hospital

we went out for a lovely dinner last night Mexican food and frozen Margaritas

We are blessed, NBC interview went just fine and Toren was amazing

Thank you for all your blessings

and your prayers

Helaini and I both have cell phones up and running

Surgery Update

Hi all,

Toren's surgery has been moved just a couple of days... it will now be on August 31st, 2010 and we will be in the city from August 30th. Just a little over two weeks to go.

We are anxious and hopeful.

M

Heading back home, Wada is behind us!!

Well yesterday went very smoothly until Toren became disoriented and had garbled speech after the Wada... so he had a second angiogram which cleared any concern of stroke. We all spent the night up in Neuro ICU - I have decided to consider it a test run for September, now we better know the lay of the land!! While it was a long night it was made easier by Fiona's company in the afternoon and evening and having Helaini along to share the journey. Boy is it great to have a trained professional on board... she is so good at this stuff, asking tough questions of the doctors and checking details with the nurses.

This morning he is is a little wobbly but very perky and his memory and speech is close to his current baseline... so home we head.

I am looking forward to a quiet shabbos dinner and sleeping in my own bed. We are all emotionally drained from the curveball, and we are very grateful to have had the support of friends, and a place to stay in the city to help us ride the wave.

Shabbat Shalom everyone.

Martina

Things are falling into place

So today we were lucky enough to have confirmation that the apartment right in the hospital complex is available and reserved for us from Sept 1st through Sept 22nd. We are so grateful. One piece at a time the puzzle is getting put together.

Thank you all for your messages, it means so much to know we are supported and held in everyone's prayers.

M

September 2nd - Surgery is Scheduled

Well we have a date!

Toren is also on the wait-list just in case a date opens up in July. We are simply grateful to be moving forward.

And yes we are wondering how we will manage the next 7.5 weeks... Still it does give us a wonderful summer to play and do fun things, and get Toren in the best possible physical condition to face surgery.

The next step

So we spent Friday afternoon at NYU getting more detailed information, which allowed us to confirm that surgery is the right option for Toren, it is actually the only real option, other than waiting for the next seizure and the damage that it could cause. The doctor was wonderful and clear, very open about the complexity of Toren's condition and of the complicated nature of the surgery. Still we move forward, and pray that Toren's guardian angels are well enough rested to get him through this next stage.

We are all scared and anxious, but equally determined and sure of the path ahead. Helaini being with us for the consult made the world of difference to me.

On Wednesday Toren will have more MRIs and on Thursday he will have the Wada - a brain angiogram.... We are lucky enough to have the Rudin's apartment to stay in on Weds and Thursday nights, if all goes smoothly we will be home on Friday in time for Shabbos dinner.

Details around surgery dates are still unresolved, hopefully we will know more today. If we are very fortunate it might be in July - otherwise we have to wait until September, which for so many reasons would be challenging for us all. Still it is clear that these things unfold ways beyond simply the obvious to my mortal comprehension.

As of now they will do a grid and strip study on the left side of the brain, with depth probes in the three specific areas that are suspect on that side... that will be the first surgery, then we wait, and hopefully the data gained allows them to do a surgery that will either eliminate the seizures, or at least reduce their severity. The doctor candidly said he has about a 50% chance of a successful outcome with this surgery. However, we all know statistics are one thing and reality is somewhat different.

Right now we are doing what we can to be as organized as possible for the next long haul. Life is sometimes about gathering good memories around you to cushion the challenges. So Friday night we got together with the McNeills and the Westchester Zobels and enjoyed a chatty dinner. Saturday we lazed around at Eve's and visited with her and Elliot, enjoyed a lazy shabbos lunch in the mid afternoon. Eve and I took a walk and caught up. Yes later we all dipped in the pool, and soaked up some rays. Helaini and I watched movies on Saturday night. It was good to just have a change of scene.

Yesterday included picking up a poorly Winston, he has a tummy bug! He is a little under the weather. But cheerful enough, in his sweet puppy way. We all went to the lake with Mummy later in the afternoon, and it was perfect. Toren swam quite a bit, he is determined to be in the best shape possible going into the operations.

This morning I did my usual early morning walk, having been awakened 3 times during the night - poor Winston!

Then we went off to daven at Shul... it was so lovely to be in our routine again.

This is a strange time for us, an in between time... we are trying to stay present, to soak up the rich sweetness of our lives, while looking ahead at a tough journey and planning for it, without allowing it to diminish the joys of today. We are in a limbo, and we are so grateful for the love and support we receive. Everyday another blessing unfolds, or several. On Friday we got to see a new friend, another family traveling a similar path. There is a unique connection built between those who sit and watch and pray for the well being of their children, for closed doorways to pop open by the miracle of skilled medical teams. It is hard to find words to express it all... but in uncharted waters, the similar journey of others allows specks of light to pour into one's own path, and then walking forward into uncertainty becomes a little less impossible.

Blessings to all

Martina

NYU here we come

So tomorrow, Friday July 9th we head down to NYU for all the pre-surgical testing, and for the consult with the neurosurgeon. We are excited and anxious. By tomorrow evening we will know much more, we might even have the actual surgery scheduled. Toren is being a trooper, we are all packed heading out the door early early. Thank goodness for good friends, Danielle is taking Winston for 3 whole days, hopefully the two puppies hers, and mine will tire each other out. Tara is going to water my garden and look after Lilah and Tapuzi... Helaini's ferret. The kids are excited to hang out with their cousins when in the city, and I am looking forward to chilling out at Eve's a good book, and a pool with great company... we will make a mini vacation out of this trip down. Which is good because next week's testing won't be such a cakewalk!!

Dates... We are on our way again

Persistance really does pay off... we are going down this Friday for all the pre-surgical testing, blood, etc.... and then the Wada test (that's its nickname - for the doc who first performed it) on the 15th.

Today I try and set up the tentative surgery date hopefully the week of July 19th. We are all excited and anxious and hopeful, woven together, with a vast array of other emotions sprinkled in there. We know this is a tough ride ahead, but we also know we are blessed beyond measure to have the people in our lives that help hold us up during these times.

This next week is all about getting ready again, tying up loose ends, setting ourselves up powerfully for the next step... oh yes and having fun. Yesterday we went to the lake for an hour or so in the late afternoon. It was perfect, except that Helaini didn't round out our little family foursome, she was babysitting. I am thinking we need a couple of air conditioners for post surgery when dashing off to the lake might not be an option!!

Stay cool and keep holding highest and best for us in your prayers.

With love

Scheduling Tests

So as predicted many people are away on the Friday before a holiday weekend. Sooo all I know differently today than yesterday is that the pre-testing for the WADA (which is itself pre-testing for the surgery) has to be done within a week of the WADA and at NYU itself. That being said, we can't get to the woman who schedules the WADA until Tuesday... so with God's grace we will know more on Tuesday. We will not be in New York as we had planned on Tuesday... but hopefully later in the week for the testing... In the meantime we are determined to enjoy the weather, and each other. Helaini will come up from her house in Albany to join for the Shabbos dinner at Savta - the rest will unfold. Enjoy your families and keep praying for patience for us, and speedy responses from the doctors.

Surgery Approval... now what

Thank you all for your lovely notes, it helps face the challenges. We feel so supported as we address the combination of excitement, fear and impatience, heavily laced with deep appreciation for all the blessings that truly litter our paths.

So here we are in Saratoga Springs, we just had his 6 months review for supportive services... Thank goodness all that will be in place during surgery, and post.

We are waiting again, this time we are waiting for the pre-surg medical clearance, the WADA, and a date for the surgery, if of course his WADA test supports working inside the left side of the brain.

The WADA test is safe, but invasive, and very important. It will determine how memory and speech patterns move across his brain. Still while waiting we moved Helaini into her new home, a shared house in Albany, she is so excited... off on the next piece of her own adventure.

It is hard to know if we are talking days or weeks, but hopefully this will move forward quickly. Until then I guess it is daily follow up calls with the doctors, and the hospital.

Please send up a prayer for speedy responses.

Day 18 & no meds on board

There are long gaps in my writing because it is hard to communicate in the face of the waiting at the brink. The seizure did not give sufficient data for a surgical path to be clear... so another seizure is required. As of last night Toren is off all his seizure medication. Now we wait again... and pray that this seizure will also be manageable and give the necessary info to the doctors. Toren is amazing -truly an inspiration... he remains steadfast and upbeat. He is on two consecutive nights of sleep deprivation and playing scrabble with me.

The Morning After

The sun is shining brightly through the windows and Toren has just had a thorough neuro check... the doc found no obvious losses from this seizure. Wow!! He had a hearty breakfast, having missed dinner last night, except of course the 2:30am munching on part of the dinner he missed. Understandably Toren is very tired, 2-3 minutes of seizing is very high energy drain, however he is also alert and aware. He is so pleased to have finally had a seizure, and to have come out of it so well. The doctors will round later this morning so we will be able to understand more about the nature of his seizures and how to respond.

For now Toren is happy to simply rest quietly and feel the relief of making it through. In the wee hours of the night when he really came round he still a little confused, but when he was told he had a seizure, he said "finally - success" ... and then immediately asked did enough get captured on the equipment. He is presently on a portable monitor, so yesterday afternoon when he was very perky and high energy Toren really enjoyed showing David how his actions were reflected on the screen... by meditating and closing his eyes, and then by thinking scary thoughts, and then of course being such a boy, thinking other thoughts - those ones have the most dramatic shift in the pattern of the brain waves... what a surprise!!

I slept here last night... meaning I dozed in every hour for some of the hour... but I feel okay, apart from the gritty-eye sensation. I am watching him like a hawk, just in case another seizure is lurking. I am both anxious and keen to hear what the doctors have to gleaned. When the tech came in to fine-tune the reception from his electrodes this morning, he said "well now you can go home." Toren responded, "I didn't come here to go home, I came here to fix this!!" Toren has been a well balanced mix of patient and determined, and I couldn't be more proud of the way he has handled himself this past fortnight. I didn't know my grandmothers - but my father often quoted his mother as saying "Anyone can be a mentsh in good times, but can you be a mentsh in tsuris." By that measure, and many others this man, is a mentsh.

Each day he remembers to ask about those he loves, and knows, he is concerned about Lindsey his newest friend sharing this journey, about Josh who is up on the 9th floor recovering from brain surgery, and about Sarah who just had surgery yesterday. All these fine young people with serious challenges, they are truly inspirational. Heightening for me the need to count blessings, and ride the waves that life presents... challenges are truly opportunities once we stop resisting. May the way you meet today's challenges open up your hearts.

Finally

Well after 13 days and lots of weaning and waiting, Toren finally had a grand mal seizure this afternoon. The staff were amazing calm, and efficient - managing to get Adivan on board within 3 minutes of the seizure starting, Toren is resting restlessly and quite out of it... but he could squeeze my hand on command and said Mummy when I asked who I was... it took time, but that is fine. Now we wait to see if the Adivan is enough to prevent another seizure, and the doctors observe what is recorded on the video and the EEG and then we can start to make educated choices as to a plan of treatment.

I am so grateful to be here, to have been with him, to hold his hand, to rub his back, to whisper words as he goes through the cruel punishment of a seizure attacking his mind and body. Given our reality, there is no place I would rather be. Early this afternoon Toren had a great visit with David Hodgson, lots of laughter and chatting. He was working on translating hebrew when the seizure hit... having fun searching the on line dictionaries. Terri Fraser, a new friend whose daughter was sharing this side of the room with Toren until yesterday, came right over from her side of the hospital and hung with us for a while. All along this journey we have been blessed. Even in that Toren had his seizure while resting in bed rather than all those trips to the loo... he has truly attentive guardian angels... and all those prayers from all of you... thank you. I will be staying here at the hospital tonight, and holding his hand, counting my many blessings, wise, careful doctors, loving friends and family, strength of spirit, dedicated and talented nurses.

Toren even held off seizing until I got to see a broadway show... that's what you call honoring your mother... of course if I had known I would have gone last week. Thank you for your prayers and loving thoughts.

M

Day 8 at NYU Langone Med Centre - Shabbat is coming

It is hard to grasp that we are here for 8 days already. Toren is in surprisingly good spirits. The doctors and nursing staff are amazing... this is their specialty on the floor and yet Toren, true to form, is a little mystifying. As of today they have removed 1,400 milligrams of meds. from his daily dosage! And amazingly Toren is not seizing. What does that mean?... hard to know even for these docs. except he might be able to function on less medication once we leave here, even though they might not stop the seizures... because we don't really know yet why the seizures hit. The result is that Toren is feeling feisty even on a day after a night of sleep deprivation.

Tonight he gets a regular night's sleep and tomorrow he gets 100 mg less meds again, some exercise on the rowing machine and yes a second night of sleep deprivation - as he says this will make for a very very long shabbat. All this to induce a small (hopefully) seizure so that the docs can get enough data to decide if he truly is a good candidate for surgery. The challenge is that the doctors are very concerned that the seizure they induce will be status like in the past and very hard to manage. Today she said again that inducing this seizure could cause him harm. Still either we wait passively for the next seizure to hit out of the blue as in the past, or we induce it in a monitored and controlled setting with the hope to get the data we need to plan out a possible path for significant recovery.

Toren spent the day getting a neuropsychological exam which is part of the data necessary for the surgery panel which will determine whether he is a good surgical candidate. He is eating less, which is great, in part because the meds that have been withdrawn were interfering with the ability to feel sated.

Fiona came in for a visit today, and we sat out in the sunshine enjoying people watching and a particularly good lunch. It is such a blessing to have friends and to be able to feel the warmth of the sun and the joy of companionship, and yes the edge of tension removed by a glass of wine. Toren also enjoyed his visit with Eve and Elliot the other night, and a whole afternoon of hanging out with my mother who took the train down to be with us on Thursday. We played rummikub and simply enjoyed being together. Family and friends, what would we do without you all. Helaini and Lily are planning on visiting over the weekend. Visitors make the world of difference, in hospital it is easy for each day to become simply a continuation of the previous one. We mark time by the experiences we have, and here the difference of days is marked by a changing of the IV access, the reduction of a medication, the thrill of 20 minutes on the rowing machine (which Toren was rather disappointed with - it was hardly state of the art exercise equipment... ah to be back at the Y - or even better for him, back on the water in a real scull.). However, because of those who love us, the visits of our dear ones, we have the gift of something to look forward to, and a vital link to the other world which so easily shrinks and almost disappears when we spend day after day in a hospital.

And for all the boredom, the fear, the waiting, there is the bounty... shared time with Toren, scrabble games, and yatzee... switching desserts with the patient in the next bed, trading stories with other families who travel a similar path. There is trash pail 'basket' ball, and holding Toren's hand while we watch yet another episode of CSI. There is the joking with the staff... as Toren fakes 'seizure' faces, or makes one more punny - it can even be a blessing to explore the hospital menu... tonight's question - are Saltines still Saltines when they are low sodium?

Then there is the darkness, the waking up and wondering if this is the day he will seizure, if saying yes will cause a damage that is unbearable to live with, the sense of being held in limbo - of praying for that which we have been trying to hold at bay, the waking in the wee hours with questions to ask doctors, and knowing that most of them are unanswerable. And so we go into this second Shabbat in NYC waiting and grateful, scared and courageous, but more than anything we go in to Shabbos with full hearts, and hope and the knowledge that we are loved and held by all of you. Shabbat Shalom