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