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News…but not THE news

All,

Well, a lot has happened since my last post.  Katy and I found, with the generous help of several people, an apartment!  We moved in this week, and are enjoying a Sunday doing “normal” things like laundry.  We have NOT received “the call” yet,but will continue to wait for the best donor to be found.  Katy has been working out her shoulders and core, and she goes to PT every 2 weeks.

Last weekend was bittersweet for our family.  Katy’s Uncle George passed away at the age of 89.  He was a wonderful man, and was loved by all who knew him. RIP, Uncle George.

We surprised the family by driving to Michigan for the funeral.  Katy got to see some of her family she hasn’t seen in years, and I know it meant a lot to Katy, and her family, that she was there.  The trip was a whirlwind tour of driving all night to get there, funeral, and then right back on the road so that we weren’t away from Boston for very long.

The kids are in Michigan for a while, staying with family, so that they can have a regular schedule.  We miss them terribly, but know that Jake going to school, and Arielle having a regular schedule is what is best for them right now.  Thankfully, they love their Aunt and Uncle, and Jake texts me every day to tell me about school.  We are very fortunate to have such a wonderful family!

Katy has her first speaking engagement this coming week.  It will be a small, private group of people who are wanting to hear Katy tell her story, and welcome us to the Boston area.  We are being asked to give another couple of talks to medical staff in the near future, and hope that this will be a wonderful opportunity for Katy to say some things she has wanted to for a while.  Wish us luck!

I hope that this post finds all of you well, and that you have a WONDERFUL week ahead.  More to come soon.

Love,

Al

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Have a GREAT week!

I wish there was more to report, but we are just ending a relaxing weekend.  Katy has been doing her exercises, and taking her vitamins.  We have enjoyed the cool, but sunny, weather, and now we get ready for home-schooling the kids.

I hope you all had a FANTASTIC weekend, and will all have a great week!

Love,

Al

The Veil is Lifted….

    Sorry for the delay in blogging…again.  It seems I say that more than I care to.  There was a press conference this morning to announce that Katy is not listed with the New England Organ Donor system!  Now, we wait for a suitable donor. 

  We both would like to, again, thank everyone for their continued prayers, support, and love!  This is still a trying time, but I am SO happy that Katy is actively a part, and in control of, this process.  The doctors at Brigham Women’s Hospital are a wonderfully talented team, and without their research, surgical skills, and dedication, none of this would be possible.  Yay, doctors! (Not often you hear ME say that!)  Also, I am so proud of Katy! She has been working out, and truly doing everything she can to prepare her body for the surgeries.  She even sat up, with a therapist pushing on her legs, and has scooted up to 170 feet! She has such an amazing spirit, and is still my hero!

   We are in the Boston area while we wait.  Boston is a beautiful city, with lots of fun, free things to do, but is also expensive to live in.  It is compounded by the fact that we don’t know how long we will be here.  You can imagine going to a property and asking for a place to live for 4 non residents, with a wheelchair, for an undetermined amount of time.  I never thought about how people in these situations do this, but we are making it. We have done our best to adjust to living in 250 square feet.  We are on top of each other a lot, but lots of walks and bike rides make the time pass more quickly.  The people we have met are very friendly, and the weather has been gorgeous.  I’m sure that we will get our payback from missing the Texas heat when we get our first blast of Winter! Brrrrrrr!

   I will write more as more interesting things happen.  I hope that everyone reading this is doing well, is healthy, and remembers to VOTE!!  (Had to throw in a psa:-) )  

Love,

Al

Not much has been happening in New England.  We head back to Boston tomorrow for a few days of testing.  The final 2 biopsies SHOULD be the last step to getting officially listed.  Though it is frustrating to keep waiting, I am so happy that the team is being extra safe with all things related to this surgery.  As we have said before, our experiences so far with the doctors at Brigham Women’s have been very positive.

I have been with very limited phone/internet for the better part of 2 weeks, so I am sorry if I didn’t reply to any comments.  Apparently Sprint is changing out towers, combined with my phone being faulty, and this has caused massive communications headaches.  I think we have resolved the issues….I do hope so!

On the happiest of notes, Katy and I celebrate our 13th wedding anniversary this Tuesday!  Our intent was to renew our vows this year, but we have decided to wait so that I can put a ring on her finger!  There are not words to describe how happy I am that she made it through, and we are on this adventure together.  For those of you who have read the blog, you know how close we came to that not happening….thanks for sticking with us.

I will report more when more happens.

 

Love,

Al

Good night…..

I was just enjoying a moment with Katy, and we wanted to say “thank you,” to you all.  I just found some comments that have been waiting for approval, and FINALLY got them approved. SORRY for those people who left the comments.  We do so LOVE to hear form all of you, but sometimes we get busy!  🙂 Katy hope to be contributing more to the blog as soon as we get the whole “new arms” thing out of the way.

To the person who left the nasty comment…if you don’t like us, then don’t read my blog.  Any comment that goes up here has to be approved by me, so please quit sending hurtful messages.

We both hope you all have a wonderful night! (or day, or evening…wherever you are)

 

Love,

Al and Katy

 

Well we FINALLY made it up to New England!  We are in Connecticut with friends until September 1st, and then on to Boston….unless we get “the call” sooner.  The kids have made friends, and we are just laying low.  We did manage to get out for a little day trip to a small town about an hour from here (just Katy and I), and walk along the coast for an afternoon.  It is tough adjusting to not having our own space, but this is all temporary.

Katy is in the final stages of testing, and we hope for her to be officially listed soon.  She has another round of tests (biopsies) in the next few days, and, hopefully, this will complete everything and she can be listed.  It is helpful to be so close to Brigham Women’s, though.  Every time they need anything, we just shoot up the highway, and are there!

It is a little nerve racking that we weren’t able to raise all of the funds we wanted to have to get up here.  We are hoping that some more donations come in so that we are certain we can ride this out.  There is a fund raiser at Birmingham Unitarian Church in Michigan, this Friday, and http://www.katyhayesfund.com is still operating.  Keep your fingers crossed.  Mine are, and Katy’s will soon be!! 🙂

We will post more once something interesting happens!

Love,

Al

Oh…One More Thing

Katy and the kids will be in attendance at Woodlands Waterway Square, on July 4th, for my final (for now) performance with SOULSHINE.  It is a free concert before the fireworks, and we are honored to be performing.  Please come by and say “hello” to us. 

Love,

Al