Blessings to Julie on her Spiritual Journey with her son Ronan

                                                     JULIE AND JONNY

My friends Jamuna and her sister Bisnew at Himal Chule have been so compassionate and generous to SiLas and me~~ We are grateful

Murmurings from Facebook

Listen, my friend SiLas Be has battled his whole life. Check him out, he's an inspiration in my life, maybe he can help you get some perspective in yours. I'm not being shitty, I'm asking you to check his disposition and then recheck yours. I think you'll find that whathever you think your going through seems insignificant. You are my hero Si. No shit                                            
                                   Gregg Des Rosier >chef  Anaba Tea room

Thanks Gregg, you've played a major role in my adult development with opportunities in The Culinary arts, General Job training and responsibility, and COOL DUDERY! I am eternally grateful I walked into ANABA that day and met you. CHEERS!
                                          SiLas Be

No more Heart Monitors! Now my HEart can get into all kinds of mischief. I think it'll start by LOVING EACH AND EVERY ONE OF YOU! — feelingloved.                SiLAs Be

I am feeling the love. Everyone's outpouring support through this has been an immeasurable help to my recovery. I am overwhelmed, humbled and invigorated by this whole experience. Last night I got my first solid 5 hours of sleep without coughing or anything in many many years. I feel like a fresh TEA LEAF today!!!
                                                 SiLas Be

Flashback

                            Blue, songs are like tattoos
                            you know I've been to sea before
                            crown and anchor me or let me sail away

                           Well theres so many sinking now
                           you've got to keep thinking
                           you can make  it thru these waves

                           Blue, here is a shell for you
                           Inside you'll hear a sigh ( Si )
                           a foggy lullaby
                           this is your song from me

Golden Gate Park "Japanese Tea Garden" San Franciso, C.A.

                           

  Reuben and Kelly Fortier have a pot of Sencha Tea and think of Si

                                 

Dr. Oxygen's Transformation

SiLas Be 2.0 update>>> Room 22

Thurs. Eve............This is the bulletin board in Si's room and his recliner.I just talked to Si and he said he had his canula off for 2 hours and his oxygen sats were between 93 and 95 %. This is such great news that he is starting to wean himself off of oxygen slowly but surely.
Fri. Eve......They are leaving the last tube in because it is still draining fluid, Of course he is still dealing with aches and pains from the surgery, I guess this is a normal part of the healing process. The doctor says the x-rays look good. We dropped off a carry-out from Himal Chule tonight, chicken sikar ( his favorite) Tomorrow he is excited about having his first pot of Sencha in 11 days. His doctor said he could have limited amounts of caffeine, rooibos, spearmint , and chamomile tea.. Dan and I are feeling the lack of sleep and plan to try to get a full 8 hours tonight. Si is starting to get some sleep also, finally.

                                                         THE SHRINE

                                                THE COMFY CHAIR

How sweet and touching> a distant cousin of SiLas

                              WE ARE TOLD KAYLEE, AGE 4 IS PRAYING FOR SI DAILY

Flashback

Tibetan Singing Bowls~~~fantastic photo by Julian Kegel

Homemade Nourishment for SiLas Be

Homemade Nourishment for Sias Be~~~~~Healthy Comfort Food~

4 PORTIONS ORGANIC GF FUSILLI PASTA delivered to the hospital at noon
RECIPE>peel and boil 2 golden potatoes and carrots in spring water ( just enough to cover ) until soft, make a cream sauce with pasture butter, goat chevre, goat milk, crushed clove of garlic, thyme, ( on low heat stirring until melted) add GF tamari and,sea salt to the sauce , Pour the sauce over the pasta , stir in strained pasta ,veggies including the spring water they were boiled in..........FINI.......BON APPETIT> "Let Food be Thy Medicine , Medicine be thy Food" ( Oh yes keep your thoughts positive while cooking and listen to Tibetan Bells music)
One week in room 22.

FEV1 ~~~ 50%

Wed. June 26th, 2013>>SiLas Be Team Update>>>

SiLas 2.0.....Lung Function 15% to 50% and rising.
I brought him a chinese carry out of wonton soup 
chinese chicken and broccoli in a light sauce for lunch about noon.
He and I had Diabetes education after lunch so he can learn how to check his insulin levels and inject insulin himself in the back of his arm or thigh with meals if he needs it, and he has been needing to take it
He was up all night last night when the storm started, so not much sleep again. Dan and I finally got 6 hours of much needed rest last night...But I needed to get up about 6 to do some research......
I went for a longer walk in the hallway with SiLas this afternoon. His feet are really sore and swollen due to all the fluids that are in his body at the moment. He was pretty tired when we got back to the room about 3 so I got him settled into his recliner chair with comfy pillows, turned the lights out, and put on "Amma" so he could get a short rest. The 3rd tube will be taken out of his lungs soon. He is still on a small amount of oxygen, 2 liters, because he is still sore from the surgery. The stronger he gets and the more he works the new lungs, he will start to feel more comfortable breathing without the aid of oxygen. It is a bit of a security blanket for him right now. For 2 and 1/2 years he has depended on it. He will have to wean off at his own pace so he can feel 100% comfortable without it.

This is the psychological aspect of getting new lungs transplanted into you. I believe Healing is a mind/body connection. 

The drawing in this photo was done by Si's good friend Drew Yerkes. He did a series of 10 Lung drawings for SiLas, as a going away gift before he left for Indonesia to serve in the peace corps for 2 years.

They removed the big tube out of vein in Si's neck > HE ATE >goat yogurt/honey>> GF mac and goat cheese >> creamed organic yellow potatoes SI"S FIRST SOLID DAY OF EATING IN A WEEK

                           SILAS  BE WAS ON OXYGEN FOR 2 1/2 YEARS!

Another Tube removed, 3 more cups of miso soup broth from the Sushi box, Tom Kha Gai ( just the broth) wonton soup without the wonton, more coconut water

Sunday with SiLas Be

Mpilonhle  Mandela ( Be Well Mandela )

 
On Tuesday Si went to a concert with his friend Erin at the Barrymore Theatre, Ladysmith Black Mambazo.
After the concert they went to get a bite to eat at the Weary Traveller. He ate a cup of hungarian goulash and had a beer. As soon as he got home, his phone rang, it was "THE CALL". Dan was doing the dishes.  I immediately had to go out  on the porch to be alone and digest the news.  I  looked up at the stars and saw the big dipper.  It felt like the stars had lined up and I had no doubt in my mind that it was Si's time.
Dan and I managed to stay calm. Si experienced a small amount of anxiety but worked thru it pretty quickly. He grabbed a CD by Toumani Diabanti with Ali Farka Toure to listen to until it was time to go into operating room. When we arrived it was nice because the hospital was quiet and empty at 12:30 a.m.  All the magnificent artwork on all the walls at UW hospital makes it feel more like an art gallery than a hospital especially when there is no one there. They showed us to room 22 and this is the same room on the fifth floor that Si is in now.  SiLas was glad that he had just eaten because it turned out to be his last meal for 5 days and counting. He couldn't drink anything either and today the first liquid he drank was  a glass of spring water. Then when I got there this afternoon I brought him some fresh squeezed organic lime juice to add to his water. Then he drank a total of 32 oz. of coconut water. He was very happy!
Dan brought him 3 cups of miso soup from Wasabi ( just the liquid) at about 7:30 .  I really hope he can get some rest tonight after all that nourishment.

SUPER MOON >SUPER DAY> SUPER SI

  When SiLas was born  he had to have an intestinal blockage removed 6 hours
later ( major surgery to his abdomen)   I  remember that when I went to visit him for the first time in the intensive care unit of Children's Hospital , they had given him a
superman pin, with the "S" logo that superman wears on his chest,  attached to balloons near his bed.
This may sound strange but it wasn't until I watched the movie " Ironman " about a year ago that I stopped being afraid for SiLas to have the transplant. I guess you have to be a kind of superhero to
live your entire life battling Cystic Fibrosis.
This Journey to TX has taken its toll on all of us who Love SiLas Be. we have all been thru numerous changes, highs and lows every step of the way.
 We are almost 96 hours into > Post Transplantation Recovery Period <
and I am happy to announce that at this moment they are removing the first tube ( of 4) and they will remove 1 tube a day from his new lungs if all goes well.
( the tubes really cause him pain and discomfort)
  AND  they will begin him on a clear liquid diet today. I am going to bring him healthy nutritional alternatives to what they would be serving him there.
Oh, Si just called and the first tube was removed successfully (yeah!) and it wasn't as painful as he thought it would be ( phew, that is a relief!)
SO.................................... REJOICE.........Om Mani Padme Hum......................................

Not much sleep again, no more morphine, more walking, productive cough at last

Especially in the twenty first century we are all so busy and so distracted by our lifestyles and our present technology that we seem to come  farther than ever from the stance of seeing  our own nature.                                                                          
                                                                    -Karmapa

SiLas conquered his fears about his double lung transplant with the great courage of a warrior

                                 WITH  GREAT STRENGTH AND DETERMINATION
                                             AND A STRONG WILL TO  LIVE
                                 SILAS ENTERED THE OPERATING ROOM ON WED.

Summer Solstice~~~~"THE CALL" came just in time!

                             This great photo of Si was taken by Dale Kaminski

                                     photo of tanks after the TX  >  Dan De L'eau

                                                    The Lizards Rejoice!

48 hours out of surgery>>>SiLas 2.0 update

Thanks to everyone on the SiLas Be Team!
 Catheter out................
Si had a bad night's sleep last night so he is a bit tired out today.
Dan bought him the BOARDS OF CANADA  CD "TOMORROW'S HARVEST"
at Strictly Discs ( Si's music store he frequents) and told Evan about Si's transplant and he said "WOW"........SiLas really wanted to hear this CD  today and was sooooo happy to listen to it!

The outpouring of Love and support for Si has been felt and appreciated.
I know how much all of Si's friends want to see Si but I ask for all to be patient with his recovery process, as we take it one day at a time. He is only 48 hours out of a major surgery.
His body and mind are getting used to the new lungs and all the medications etc he will need so that his body will not reject the new lungs.....He has a long way to go and today he even said that "he had no idea that the  post-transplant journey would be this challenging and difficult."
He has had nothing to eat or drink since Tues. evening,  just before he got "The Call."  and   is yearning for a nice pot of japanese Sencha Tea and and a delicious meal.

 This is  picture of Medicine Buddha in Buddhism..........

"May All Sentient Beings Be Free  From Suffering"

SiLas is no longer sedated, his throat tube has been removed, and he went for a short walk in the hallway today

The Lizard has made his Journey successfully to TX (transplant)

 SiLas is doing well after an 8 hour surgery ( 9:15 - 5:30 )
He was heavily sedated when  Dan and I , Mike and Dale went in to see him.
We were all trembling and emotional at the sight of Si breathing so peacefully.
SiLas got his miracle!
I'm so exhausted and at a loss for words right now.
Dan and I have been at the hospital for 24 hours.