Sierra Bingham..... I have a bone to pick with you!!!

Sierra had her transplant in August 2006, she received her heart literally within moments of her death. Truly a miracle. For the most part she's done exceptional, with a few bumps along the way. Last summer she scared us in the same way she scared us yesterday.....lots of swelling, which is a bad sign. They have run a bajillion tests so far (x-rays, labs, echo, EKG) the routine stuff....and they are waiting on results. She is conscious, Dad said she didn't even have an IV placed when she was medi-vac'd - and she had some flu-like symptoms last week. Our kids are so fragile - the meds they take can be toxic at high levels, dehydration is devastating. It's all a delicate balancing act and one thing slips out of balance.....well, it needs to be corrected. Sierra needs a liitle fixin' - and I just know in my heart she'll be on her way home soon. Does it make it any easier on Mom & Dad.....hell no it doesn't. My heart breaks - we are very close as friends / family and we can't do anything. Jason and Stacy - I'm so sorry you are going through this. it never, ever gets easier.

I had wrote about Sid, who was on life support when we were there last for Shawn's biopsy. The day we flew home, his mom Peggy allowed me in to North ICU to see him before leaving. I just knew it would be my last time, and I sobbed out my good-bye's to him. He wasn't expected to live, and again...when I think there is no hope, I have been proven wrong. Sid began to turn around, not only is he still alive, but off the breathing machine (ventilator) and last I heard, was working on physical therapy!!!! I really can hardly believe it myself, Shawn has biopsy August 4, I just don't know what I will do when I see Sid - unless he's discharged and out partying like a rockstar or something!:)

I am still confined to bed for the most part. I was told by my orthopedic surgeon that the very most I can do is take a shower and get dressed. The rest of the time, I need to be comfortable....whether it's laying down, laying on my side, sitting up.....If I am in pain, I need to get out of pain. I have a ton of pillows on my fluffy bed. In about a week, I'll start moving around more, still no lifting more than a few pounds, no bending or twisting. My house is falling apart, my kids are a mess (but fed thanks to Lisa and Ruth!!) but I am taking advantage of it, when I start physical therapy, it will be a whole new story!! : (

update on Shawn: Shawn is amazing, strong and funny and we see his anxiety lessening. His frustration with the dyslexia, the learning difficulties that remain from not only the problems before his transplant (severe dyslexia as well as lingering results from a number of strokes after open heart surgeries as a baby). Reading makes no sense to Shawn. Telling Shawn to read this post for example would be like asking a 5 year old to perform brain surgery.....it makes zero sense to him. However.....with the teachers of Alpenglow....who were consistent, unconventional, persistent and patient....in his 5th grade school year he advanced 3 levels! George is more concerned about his education - saddened that after all he's been through.....the fact that he is alive is a miracle unto itself, and here's yet ANOTHER hurdle. We just want some things to go easy - and on that note...I will say that Shawn no longer needs physical therapy. He had a number of strokes as a baby, then two massive strokes after his heart transplant. We were referred to Tim Landon from the speech teacher, Lisa Miller who worked miracles with Shawn when he was very young. ((as a toddler, because of the strokes, episodes his brain went without oxygen, Shawn had a speech problem called dyspraxia...meaning he spoke in vowels only A E I O U - imagine that....Lisa taught him sign language to communicate, but he was so strong willed, he made up his own sign language!!! our daughter, Sam could really understand and would often interperet) back to my story....Lisa recommended Tim, but I wasn't hopeful, although Shawn had been in physical therapy most of his life, he always hated it. From day one, he loved every minute of his time with Tim. Shawn was having a blast...he had no ides Tim was tricking him into working. Now Shawn hasn't been able to do stairs foot over foot - ever. He favored one side, his depth perception made it even harder (all damage from the strokes and complications from after his heart transplant). I'll never forget in the middle of a contest / combat obstacle course with Tim and I saw Shawn run - normally - up & down the stairs, it was as if I lost my breath, I was so shocked!!. A great day. So he is playing outside everyday, strong and healthy for the first time in his life, and everyday he is better. I have been given a front row seat to witness miracle after miracle, it's an experience that is impossible to put into words.

Well...I need to go shift to keep my new titanium, fused spine happy. Physically this will be a long, difficult recovery...but psychologically I am already much better. Chronic, non-stop, pain is a monster - it consumed my life. Taking care of the bare minimum was too much for me, my home, my kids, my marriage suffered as well. Attempting to manage and deal with the pain I was in caused me to alienate people - everyone, including George because no one could understand how bad I hurt. My biggest fear was that I would never again be ok. At my first post-op appointment, my surgeon said that my L4 L5 level was completely unstable, he said as early as 10 years ago, I would be wheelchair bound for the rest of my life, and I am 38 !!! however, the surgery went very well and the rest of my spine looks great!! So now I need to heal correctly with all my new "hardware" lots of titanium screws and plates. With that being said, I definitely need to take better care of myself!! Last summer I lost 48 pounds and I was doing so good, and felt so good, with my back broken - you know they came back and found me :(:(:( there will be lots of changes in my life....but I am ECSTATIC that I have the chance to get better :) have a mentioned lately how much I love doctors and the science of medicine!!

Love & hugs from my big bed xoxo

Holy cow - I just tried to update from my iPhone and there was just a mess of a bunch of little posts all over the place OY!!! What a mess,
... So what I was trying to say via my phone through text messages was that I can't update much now, I am unable to sit up....I haven't been able to sit up to use my laptop, so my communicating has been through my iPhone or G's iPad....but those tiny keypads often drive me CRAZY...in order to type up a lot I need a keyboard that isn't ideal for ferret paws!!

Now if you are wondering why I am laying down ALL of the time, about 2 weeks ago I had my spine fused. When I get on my MacBook I'll tell you about my surgery, which I find fascinating - there's a lot of titanium and I am convinced that there is some kryptonite in there somewhere. I am flat on my back for 6 weeks - with shuffling to the bathroom to pee or shower as the only time I'm allowed up. I do need to shuffle -slowly -to Dr. Eule's office tomorrow for my first post op appointment. My recovery is going well, I was out of the hospital in 3 days, instead of the anticipated 7 :) I cannot twist, bend, lift anything, put my hands above my head etc etc for quite some time. I will start physical therapy (torture) at 3 months post-op, but I am determined!! I would like to get back to being myself and I know my kids would love to have me back it as well.

Our neighbor, Lisa* who is amazing* has fed our family....George works long hours in the summer - if it weren't for Lisa, the babies wouldn't be eating...and our very close friend, Ruth...who brought by a ton of food and homemade caramels -which were like eating a little bit of heaven sprinkled with unicorn dust - oh yes, my friends, they ARE that good.

The next day The kids tell me Lisa is out front mowing and making our lawn gorgeous. My mom drove in to buy the babies milk and groceries and pick up my pain meds.... Today she drove in to take Shawn to his appointment with Dr.Scott Wellmann for check up and echo. Shawn's heart looks awesome and he is doing wonderful. He had.a biopsy 3 weeks ago which was 1a (just a teeny bit of rejection), so our Shawn is incredible.

That's about it for now , all of you here in Alaska...go climb stuff, or catch a few fish for me :)

We all hope that you and yours are happy and healthy::)

Hugs and love from the master bedroom,,