ClubTwitch

Hello Everyone,

Well, this is terrible notice, but the producer who came here and filmed a segment/update on Ty’s surgery this past January called about an hour ago to say it is airing today.  It doesn’t mean a whole lot for us here in Western Montana because Billings is the only town that airs the show.  I believe that after today you can go on www.insideedition.com and see at least the transcript from the show.

The producer, Chris Dukas, expressed dismay at how much they cut from the story he wanted to do.  I think this means that most of us “extras” ended up on the cutting room floor.  Apparently recent focus group research has indicated that their viewing audience wants more stories of shorter duration.  He says “Boo” and so do I, but whaddya do?

Anyway, in the next few weeks Chris will send us a DVD with both segments on it and we can ask TimDanyo to put it on the ClubTwitch website.  He said they are planning a short followup later in the summer which will include Baby Jude.

Hope everyone is well.  God be with you.

October 16, 2009

It is so difficult to believe that it is six months ago today that Tyler received his long-awaited Deep Brain Stimulation surgery.  Like stepping into a swift current, we came home from New York to life flowing along at the usual speed.  There was no sitting on the bank of the river to reflect; we just got carried along and here we are six months later!

Programming news: Tyler has had 3 programming sessions so far.  He is now able to have the sessions done here in Missoula, which eliminates an overnight trip and several hours of driving each time.  A blessing.  Pat Kautzman, the programmer from the Medtronic company has been a steady presence in all these changes and a continual source of information and encouragement to Tyler.  We are so thankful for him.

Tyler presently has six out of the eight available sites on the electrodes activated.  He has experienced some periods of significant improvement, and some periods where the good effects seemed to diminish slightly.  Pat assures him that there are many, many programming settings still to explore.  The important thing to note is that there has been no movement backwards, but rather all the changes have been positive. The tics are reduced some in frequency and intensity and Tyler lives life on a much more normal plane.  He is not yet where he hopes to be, but is in a much better place than he was pre-surgery.

Personal news: Tyler has always hoped to return to the working world and now feels ready to attempt part-time employment.  He has been applying to businesses within walking distance from where they live, since he cannot yet get his drivers license.  We are confident that God will provide him the right job at the right time.

There isn’t a day that passes without our family thinking of the amazing events of this past year.  We find ourselves wishing there was a way to write “THANK YOU!” in the sky so everyone could see how grateful we are for all the help you gave.

June 28, 2009

Ty is two appointments into the programming of his DBS device and things are going well.  This is very new territory for us, so we have been reluctant to post things in case they didn’t last, but now I feel I can definitely say that Tyler is doing better.

The neurosurgeon who has begun the programming, and the Medtronic representative who has much experience with DBS devices have told us that this will be a process that could take nine months to a year to complete.  The portion of the brain where Tyler’s implants are located is a “slow to respond” part, and so whenever they make an adjustment Tyler’s brain has to be given time to recognize and adjust to what they have done.  

At the first programming appointment in Spokane, Tyler experienced a definite feeling of relaxation go through his body, first one side and then the other as they worked with the corresponding electrode.  There have not been any dramatic, big, or sudden changes, but as the weeks have gone by, the family has seen significant changes in his mood, his energy level and his ability to recover from/handle the tics when they come.  Ty himself has said, “I am doing better.”  

Tyler and Kassie traveled to Spokane again last week for the second appointment.  They shut off the site on the left electrode which they’d been working with (there are 4 on each electrode), and activated another site.  Ty experienced some Parkinsonian-like tremors on his left side, but these were significantly decreased by the next morning and now are gone altogether.  We are presently in the two week waiting period while his brain adjusts.

Our family is also in the busiest time of our year, when we run our fireworks business.  Tyler and Kassie are operating a fireworks stand in Lolo, and even though he is not where he would like to be with tic reduction, we can tell you it is a whole different picture than last year at this time when he had to be hospitalized right after we got done.  

So, thank you for being patient in waiting for an update.  The changes may be slow, but they are all positive!  Thank you for your prayers-God is so good.

Jonni

Listen to Total Impact’s follow up interview to Tyler’s surgery.

Click on the link below to play the mp3 file. 

total-impact-tyler-boshae

There isn’t a lot of news at this point and Tyler’s days remain much the same as always.  That is because the programming of his stimulator unit has not yet begun.  It is hard as always to wait; however, Tyler and Kassie do have an appointment to begin the programming next Monday, May 11th.  There could be immediate results, or it might take more time as they explore the many setting options to find ones which bring him the most relief from his tics.

Until then, we appreciate all the people who have gotten in touch to say they are still praying.  And we continue to trust God with our future(s).

Thank you.  I’ll keep in touch

Jonni

Tyler’s story is so inspirational. His struggle has truly captivated the hearts of many across the nation. Inside Edition will be airing a show on Tyler’s journey tonight and tomorrow. Please check their website for more details.

You can view the teaser at:

http://www.insideedition.com/

Good morning!

Steve and I entered the hospital this morning to be here when Dr. deLotbiniere makes his discharge visit, and there was Tyler and Kassie on the front page of the local paper!  Very nice article with pics of them and interviews with the surgeon as well as our dear Dr. Kemple back in Missoula.

If you want to read it, you can google “Journal News” the newspaper for Westchester/Rockland, or try copying and pasting the following into your address bar:   www.lohud.com/article/2009904180359

It is another 70-ish day here and promises to be very pleasant.  We are so happy to be taking Ty back to the house with us today, and I am sure Kassie is looking forward to some sleep on a real bed.   She is the best.

You all have a good day.

Hello everyone

     Hope this finds you well and hard at work on Monday!  

     We had a very busy weekend after bringing Tyler back to our lodgings from his surgery.  Our friend, Pat, from Maine was here for Friday-Sunday, and also in a coincidence old friends from Southern California were travelling with their family out here in New York and Boston.  They stopped  Saturday night for a meal with us and it was a jolly time of reunion and introductions.  Yesterday Steve and I and the Maine visitors went to the early service at the Brooklyn Tabernacle.  Indescrible music and perfect words from Pastor Cymbala for our day.  As an additional treat, Beth Bliss from New Jersey met us there for the service and then came back to the house in Purdys to see Ty and Kassie.  It was hard to say goodbye to all the weekend visitors because we have no idea when/if we’ll ever get to see them again in this life.  God knows.  Now it is a quiet, rainy Monday and we are enjoying the rest.

    Tyler is not having the complete vacation from tics during this post-surgery period that some other patients have experienced.  We saw tics Thursday evening within a few hours of surgery.  That was disappointing but had never been an assurance.  He does seem to be sleeping a little better, and in his movements around the house his body seems to be slightly more relaxed.  Otherwise though, his hours are much the same as before surgery.  It is hard to listen to him having tics in the next room, but then I remind myself that right now it is like installing an underground sprinkler system for your lawn, not having it hooked up to the water yet, and wondering why your grass is still yellow.  The surgery went perfectly, the healing up is perfectly right, we are past all the dire risks like stroke, hemorrhage and death, and we are just waiting til we get home and “turn the water on.”

     There won’t be too much news between now and the end of the week, so don’t worry if you don’t hear from us for a day or two at a time.  Betsy Cohen did such a nice article in the Missoulian today and really covered all the news there is for now.

Have a good week everybody.

Jonni

We got to see Ty for a few minutes in ICU recovery.  He was very dopey, of course, but smiling and saying how happy he was.  The ICU team was wonderful and keeping him pain free and looking after every detail of his well being.  John #2 (found us the house to stay in) and his wife, Dorothy, had happened to come visit us just a few minutes before the surgeon entered and gave us his report. They were there for the happy news and we were so glad they got to share those moments.

   We hadn’t really eaten all day, so Steve, Kassie and I went with John and Dorothy to have a hot meal.  When we returned Ty was in a regular ICU room.  He was more alert and his head and stomach hurt quite a bit.  He was having some tics, but we won’t really be able to tell if they are any less until we have more time to observe.  We were hoping he would get the same reprieve that others have briefly experienced in the post-surgery period, but if he does not it doesn’t change the fact that the surgery has been successfully completed.  The results of turning the stimulators on and programming them are still out there to be discovered.

   Kassie stayed with Ty in a recliner in his room and the night passed uneventfully.  Of course, he had to be wakened regularly so neither of them got much sleep.  Steve and I went back to the house and had collapsed into bed by 9:00.  So tired, and the adrenalin was escaping so that I felt like a tire with a slow leak all evening.  Big sigh… yawn… oblivion