Updates From Erin

From Erin’s Charity Facebook page…..06/16/10

Apologies for not updating sooner, but I don't really FB anymore, and honestly I've no real news to update you on, but I'll try.

The surgery went well at the end of January. I wound up having to have three surgeries instead of two because of a pesky blood clot on the stimulator itself. But implantation was successful and there were no further complications thankfully.

Recovery wasn't too bad. The battery implant in my chest was most uncomfortable site post op, even though I had a railroad of staples on my scalp. Sinai was great, as well as my neurosurgeon Ira Garonzik.

The stimulator comes with a representative from St. Joseph's (they made my stimulator) who I meet with regularly to change the settings on the stimulator. There are practically endless programs to try. There are 16 electrodes and any combination of electrodes is possible and that is combined with different strength levels for each electrode. Finding the combo and strength that will help me will take a lot of trial and error and because of that, we can assume a lot of time, as well.

Unfortunately, I've had no benefit from the device so far. Of course, initially, I was feeling confident and optimistic about a more comfortable future, but as time goes by I find that I am cautiously hopeful, mixed with a little prayer of acceptance if it doesn't work, a little depression and a feverish desire to be stronger and handle the situation with grace if this is to be my lot in this life.

There had been talk about removing the device if there was absolutely no success but that talk has been tabled. I will wait years to find a good setting. What else can I do?

It is amazing how much support we have received, physically, emotionally and monetarily. I would have never gotten a bed in any hospital with out our community's help. Because of that, I feel that I owe a lot of people my best self and the courage to keep moving forward.

Last week I had an appointment with Dr. G. and my stim rep, Julia, and I asked if they had any other patients having this procedure and if they did, how were they doing. It broke my heart to hear that there are quite a few people (in varying degrees of some type of intractable head pain) waiting to have the surgery, but can't because their insurance won't pay for it. It killed me to think of what those men and women are feeling! I was and would still be among their ranks without the loving support I've received from you all. I think about those men and women often and say prayers that they will have the chance that I was given.

On a final note: if I've hurt anyone's feelings for not being in touch or getting out any update's please forgive me. I am trying hard to get to a place where I have the energy to extend my hands to my friends, but am not there yet. Just keeping up with Jim, Ada and Auggie has been a Sisyphean struggle. Thankfully, I tend to feel better when the air is warmer so I have hopes to reconnect with the world this summer.

Thanks again for everything.

Erin

From Erin’s Little Helpers.......February 3, 2010

After a short trial period, Erin had the device permanently implanted on January 28th and arrived at home safely from the hospital on January 31st. She is still in a lot of pain from the trial and permanent implant surgeries, but is happy to be at home with her family. At this time the device has not shown any lasting relief yet, but it can take days to months for her to see lasting effects. Due to the brief moments of relief that Erin has experienced during setting adjustments on the device, both Erin and her doctors are remaining very positive that the device will start working for her at some point.

Erin and her family would like to thank everyone for their donations, thoughts, prayers and well wishes.

Yours kindly,

Erin's Little Helpers

From Erin’s Facebook page…..12/14/09

Nothing says "Hello, 2010!" like a Craniotomy

*Update 1/2/10 - change in surgery date. Now it is scheduled for January 21st for the first stage of the surgery, and the 25th for the final implantation if all goes well from the first surgery. I think then I'll spend 2 days at the least in the hospital before coming home!

The practically impossible has happened and I have a date for the motor cortex stimulation surgery that so many people have helped make possible through donations and volunteering. Thank you all! There is no way it could have happened without your support and love. I am so very very grateful.

The hospital has agreed to take the monies raised so far as a down payment. Hopefully my hospital stay will be short and my time in the operating room will be too. These two will make up the bulk of the bill in the end, I think. But right now having a date and preparing myself are most on my mind.

So January 13, if all goes well, will be the day. I should be able to tell right away if it's going to work or not. If it does help, the stimulator will be semi-permanently placed and off to home I go. Currently this is the last option I have to try and get significant relief and it would be so very awesome if it worked. It'd be like being granted a pardon and allowed to be a member of society again.

I am excited, but very nervous. There a quite a few pre-operational tests and things to do, the most important on the 12th, and that is what my prayers are tangled up in right now.

On the 13th keep me in mind and pray (if you're inclined) for all of us: the surgical team, me, and more importantly for the kids and Jim. It's always harder to watch someone you love go through hard times than to go through them yourself. And either way it goes on that Wednesday, it will surely change my life one way or another and that probably should get a few prayers of it's own.

Thank you so very much for the love and prayers and the help that many of you have given us to get us where we are today. I am thankful to have so many people (and some I've never met!) willing to share their faith and love, their joy and optimism with all of us.

I love you all and hope that your Christmas and New Year will be as miraculous as my own.

Erin

From Erin’s Facebook page…..7/7/09

Kisses and Hugs of Gratitude

Thanks to everyone who has graciously joined the cause to help my family. All of the donations have been surprising and wonderful. My friends and family have been so generous with their time and talents and many people that I do not know personally have worked just as hard setting up fundraisers, donating time, sending letters of hope and encouragement to my family, giving of their time to help with the insurance quagmire.... And I'm on more prayer lists than any one person deserves:)! Additionally, we are dumbstruck to have received an amazing gift over the weekend !!!!$5000!!!! from a parishioner at Bethany Lutheran Church in Salisbury. We are speechless and humbled and filled with gratitude.

It seems so often I can be amazed by the amount of good in the world and simultaneously burdened by the pain and suffering of so many. I believe that God is the balance between the two. We are never guaranteed a life free from suffering, and can only pray that we will be spared from unimaginable obstacles. At the same time, our capacity for joy is endless, no matter what life we are given. That, I believe, is God's love; His greatest gift.

Your support and your love, however it is expressed, reminds me that it is the middle I seek: To accept this situation, praying for the best while knowing that I cannot foretell my future or know what my right place in the world will be, all the while knowing joy will be mine, either way.

Miracles have been achieved by this loving and joyful community. We've experienced so many already. Some miracles are huge, while others seem small in scope. But it is in those small everyday beauties that I've found myself unburdened and blessed; lifted up when my own legs can no longer bear the weight of that which I've been given. And for that you have my heart.

With loving regards to you all,

Erin