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.