Time does get away from us...

Well, look at what time it is! Good gracious...can you say "it has been a busy year"? My apologies for not getting more regular updates posted here, I have simply had a lot on my plate...not any excuse, really.

Sonny continues to do well. At the last posting, he had just had his peg tube ("parenteral gastric tube") placed, and since then he has done fine with it. To recap, we hesitated about the tube originally out of concern that it would be overused and he would miss the experience of ordinary eating. But at this point the staff at HRNS have done well at using the tube only for his medication and supplementing his water intake to avoid dehydration problems. Sonny still eats like a trooper, enjoys chocolate like a starving teenager, and has had no choking episodes. He also gained back a healthy portion of the weight that he had lost the previous year when he was ill, which has him looking much more like his old self.

Recently an old friend of Sonny's, Wild Bill, stopped by to visit and brought Sonny some very much appreciated personal items, a stack of magazines, and the awesome motorcycle poster in the picture. It was so huge I had to trim it a bit in order to fit it on his wall!

Sonny watched me rearranging the stuff already on his wall to make room for the poster, and when I took down his amulet bags and necklaces he lifted up his hand to me. I gave them to him and he held them while I tacked up the poster and re-hung a few of his hats. This whole procedure took a while and he had already eaten lunch so was very ready for an afternoon snooze...

You may have noticed in these recent photos that Sonny's hair is growing.  It's true! His hair is once again getting past his shoulders, closer to the way he always wore it. So far we have had no problems with skin issues recently, so I say "Bring on the mane!" Seeing those longer locks definitely looks more like the Sonny most of us remember, doesn't it? Right down to the somewhat grumpy face when he might not have been quite ready to wake up. Yup...Vintage Sonny.

With Sonny's 49th birthday approaching next month (Yes indeed, one year away from the big 50!), I will be putting together plans for a get-together for him. It will be fantastic to have a bunch of friends show up to say hello and join Sonny in a piece of birthday cake! Stay tuned for more details on that event, I will be sure to get the information out to the world as soon as it is available.

Meanwhile, just a reminder that Sonny's main address is the same but his room number has changed:

Sonny Perencevic  Room #105
Health & Rehab of North Seattle
13333 Greenwood Ave. N.
Seattle, WA  98133

Sonny also has an email account so folks can send him notes any time. Just send that electronic carrier pigeon winging to SonnyIsGreat@gmail.com . And of course you can find his Facebook page as well.

There are many friends who have helped, each in their own ways and I would like to thank you all but I would surely leave someone out. You all know who you are, and how important even the seemingly smallest of things are to Sonny...and thus to me, as well. To say that we are grateful would be the poorest of thanks, but one so deserved by folks who have gone out of their way to just be present when needed. So...thank you.

Where to now from here? Onward and upward, as they say. As Sonny told me often when I needed to regain my fortitude, "Lorrie, we are Perencevics...and Perencevics don't break, we bounce." So now we continue, and I hope that those who know Sonny will continue on with us. As always, visitors are always welcome! If you haven't seen Sonny in a while and would like a little help navigating a drop-in, I would be happy to be there when you stop by and smooth the way however possible.  Blessings to all of you who keep tabs on this little corner of the web where Sonny's story continues to unfold. Peace. ~Lorrie

"The sky is NOT the limit...there are footprints on the moon." 

Sonny's PEG tube was placed late yesterday and he came through the procedure like a champion. So now he will once again be able to receive his medications without having to swallow them, which though we do not like him to have the tube in, avoids the risk of him not receiving medications properly if he refuses to take them. (Sonny cannot handle whole pills, so his meds are crushed for him...they taste YUKKY.)

He will also be able to receive liquids via the tube, so hopefully future incidents of dehydration brought on by insensitive, harried, or downright lazy staff at the nursing home not taking the time to help him drink fluids regularly throughout the day can be avoided. Yes, I know, I shouldn't be critical...I know how valuable a CNA's time is and how demanding their jobs are and how downright horribly interruptive it is for them to have to take ten minutes out several times a day to assist a patient with drinking a glass of water. I am certain they DO have far more important duties than tending to the basic needs of patients who cannot care for themselves. Oh wait...attending to patient's needs IS the job of a CNA! My bad...I may have to re-think this. Hmmm...maybe there is simply a water shortage at his nursing home? Is there a water ration somewhere in the city that I am not aware of?

Nonetheless, hopefully Sonny will at least be better hydrated, which IS a plus (pardon me while I pull my tongue out of my cheek).

Otherwise he is improving, so we are hopeful that he will be discharged from the hospital by the end of the weekend. Thank you to Julie and Cristine for your kind thoughts, Tim for your thoughtful visit, to JD and Teri for the warm fuzzy eagle blanket that has give Sonny something beautiful to hold onto during his hospital stay, to our Mom for being so constantly present and level-headed for Sonny, and to Scott for just being here throughout even when it is painful.

"...The test of a civilization is the way that it cares for its helpless members."    ~Pearl S. Buck

Geez Louise, it has been a while!

To say that it has been a busy six months would be the understatement of the millennium. Here is a re-cap in a nutshell:

Sonny returned to the nursing home in mid-November after recovering from his heart attack and pneumonia. Re-gaining his strength was a long process, but in true "Sonny style" he fought his way back. He came home for Thanksgiving and Christmas, visited with the whole family who came, and as usual ate a ton of great food!

Not long into the new year Sonny developed a Hepatitis-A infection and recurring pneumonia, so spent several days at Northwest Hospital once again. At this point he is very well-recovered, though still not quite as spunky as usual. He has definitely found that stellar smile he likes to flash at us, though! And his love for anything chocolate persists no matter what.

One change is that he does have an indwelling tube in his tummy (invisible under his shirt) through which he receives liquids and his medications. Mom and I fought like wildcats to avoid having the tube placed because we knew that Sonny would not like it being there and we didn't want him to be fed through it when he is fully capable of eating by mouth. The reason we decided to go ahead with it was because his doctor at the hospital wisely pointed out that every time he has required hospitalization, he presented severely dehydrated and with fluctuating medication levels. Her opinion was that with the tube in place it would be easier for the staff to keep him well hydrated, and he would not refuse his medications when he specifically did not like the nurse administering them. She wrote into his medical orders that he is NOT to be fed foods through the tube, but that it is ONLY for hydration and medication. We had to put our foot down a few times when that order was ignored, but it seems that things are going well now.

A few people have asked "why the feeding thing is such a big issue". One reason is that for Sonny, food is a major enjoyment every day. Considering his limited abilities right now, his meals and snacks are one thing he is able to truly enjoy and we do not want him to lose that. It does take considerable time to assist Sonny with eating a full meal, and it even takes several minutes to help him drink a glass of thickened liquids...so the staff has to be willing to take that time on Sonny's behalf. (This is part of their job, so it should not be an issue.) It is definitely much easier and faster for them to hang a liquid nutrition bag and just let it run into the feeding tube while they tend to something else, but then Sonny really gets no pleasure whatsoever from having a tasty meal. Also, it took Sonny almost 2 years after his accident to be able to eat ordinary solid foods and swallow without a constant threat of choking. He has to continue regularly using that skill in order to keep it...if he stops drinking and eating by mouth, that skill of swallowing could be lost and he would have to start all over again. Again, not something we want him to have to do. Lastly, the human mouth is designed to be regularly wet and rinsed with liquid. If a person never drinks liquids by mouth, the mucosa of the inner cheeks, tongue and palate become laden with bacteria and fungi that can cause health problems all on their own, including threatening the stability of the teeth. So, we encourage the staff to give Sonny drinks by mouth whenever possible and we do so ourselves whenever we visit.

**Notes to visitors: 

**1. Sonny still only drinks thickened liquids, never ordinary water or soda pop, etc. If you would like to offer him a drink, simply ask a staff member for some nectar thick water or juice for Sonny and they will get it from the kitchen for you. He will slowly sip it from the edge of the cup if you hold it to his lips for him. Easy as pie. :)
**2. Sonny is extremely susceptible to sunburn! He LOVES going outside, so when you visit feel free to wheel him outside to the courtyard off the dining room, the sidewalk outside, etc. But please be mindful of the sun. He has several ball caps on the wall in his room which work well for shading his face, so you just have to keep an eye on his arms and hands. The courtyard has several tables with awnings so that you can sit outside but still be in the shade if you prefer.
**3. As I mentioned, Sonny still loves chocolate! Milky Way bars or plain Hershey chocolate bars are great, but don't baby him too much! If you break off a bite-sized piece and put it in his fingers, he can usually put it into his mouth himself and it is good for him to do so. Sometimes if he is tired he won't want to...just use your judgment if you think that is the case and help if you think he needs a little assistance.

He can also receive emails, so I have posted those instructions as well. If you would like to send Sonny any other sort of gift, including gift cards, store certificates, etc, please contact me (Lorrie, contact info below) about sending them to me so I can take them to him directly...we exercise a great deal of caution, as certain items of value have a tendency to disappear from his room if we are not careful.

Email: (I take these in to read to him)
SonnyIsGreat@gmail.com

Facebook: (I make sure he sees new posts, photos, etc!)
www.facebook.com/SonnyPerencevic

Lorrie's contact info:
Cell: 206.330.3269
Email: Lorrie@TheCommunityGate.org

So, with no further ado I will sign off for now. As summer arrives, everyone has busy schedules ad lots of activities. I know Sonny would love to see his old friends, so I hope some of you folks will be in touch.

***Special thanks to Angela for her visits and ongoing support! Also Teri and JD for staying in touch and being great friends! Tim, you have been a constant encouragement for Sonny and a faithful friend as well! Kudos to my Mom for putting so much energy into Sonny's care even when her own health has suffered...it is rough sometimes but she has done such amazing things. Thanks also to Scott, who handled his first meeting with Sonny with such grace and respect...what a blessing. 

"The sky is NOT the limit...there are footprints on the moon."

Friday update...

It was a GOOD day today!

Sonny with Angela today...

Sonny has been sluggish and sleepy, so much so that his caregivers had become concerned. When Mom and I arrived shortly after 11am, he still had not eaten or drank anything today by mouth, which means he also had not taken some of his meds that have to be taken orally.

Then the lip-smacking began.

I told his nurse that when he smacks his lips, that is his way of telling us that he is thirsty...it would be a good time to try to get him to drink. I asked if it would be okay for me to try to help him to drink, and his nurse approved me to do so. She brought thickened apple juice and thickened ice water...and over about twenty minutes, Sonny agreeably swallowed BOTH cups. So...

Then his speech pathologist brought a small cup of canned peaches, and he ate the whole cup for her. :) So...

She ordered a lunch for him, pureed chicken, mashed potatoes, and gravy. It took him a while, but he was able to eat it all plus another cup of thickened juice. He actually became pretty tired out just by the effort, but the staff were all really excited to see him so much more responsive and making progress. He was then able to take his afternoon meds mixed into pudding.

He was very tired by the time we left, but he had made great progress just with these small steps. Seeing him re-gaining ground is very encouraging. He still has issues related to the pneumonia, and that will just take time to let his lungs heal while the medications fight the infection. His heart seems stable.

Once again, thank you all for your kind words and your support. A wise elderly friend once told me, "We are upheld by the love of those who care for us". Her words could not be more true.

"Carry on, my wayward son...there will be peace when you are done...lay your weary head to rest...don't you cry no more..."
~Kansas

Rest well tonight, Sonny...and may warrior angels guard you. We love you!

Sonny's journal page:    www.SonnyPRoad.blogspot.com
Sonny's Facebook:    Sonny on Facebook
Sonny's email:    SonnyIsGreat@Gmail.com

Thursday update...

Today, I was pleased as punch when I walked into Sonny's room and he was...sound asleep. Finally, he was resting deeply, not fidgeting and breathing without such obvious effort.

We still do not have any idea how long the whole process will take to see Sonny get better, but it is encouraging that compared to yesterday he does seem to be breathing easier and resting well. He didn't eat or drink much today, so his IV remains on board to keep him hydrated. He is so tired right now that sleep is the priority.

Obviously this is not Sonny, but today he just reminded me so much
 of a sleepy little boy...

I sat with him for a few hours today and held his hand while he slept. Now and then he would jerk awake and squeeze onto my hand, look at me, then fall back to sleep. I think it must be disconcerting to him to keep track of where he is and what has happened to him, so I just rubbed his hand, told him we all love him and that sleeping is just fine right now. He can get out and about again when he is healed up again, and we look forward to getting him out to see Christmas lights this year.

For now, baby steps one hour and day at a time. We invite notes for Sonny, guestbook entries, emails, anything at all. We show him these, and it has to be encouraging to him to know that so many people are thinking of him right now. Thank you all for your support and encouragement...it has been a rough few days.

"I ask you right here please to agree with me that a scar is never ugly. That is what the scar makers want us to think. But you and I, we must make an agreement to defy them. We must see all scars as beauty. Okay? This will be our secret. Because take it from me, a scar does not form on the dying. A scar means, I survived.” 

~Chris Cleave, from the book "Little Bee"

Sonny's journal page:    www.SonnyPRoad.blogspot.com
Sonny's Facebook:    Sonny on Facebook
Sonny's email:    SonnyIsGreat@gmail.com

A matter of the heart...

Greetings everyone,

It has been a while since our last update here. It has been a super busy summer, but once again pressing matters dictate that we let everyone know of current events.

On Tuesday, October 30, Sonny was running a high fever so the nursing home had him transported to the hospital. While en route, he had a seizure. Upon arrival at Northwest Hospital in Seattle, an EKG revealed abnormal heart rhythms...Sonny had experienced a heart attack. Mom and I (Lorrie) were already on our way there when the doctor phoned and asked permission to take Sonny straight into the cardiac catheterization lab, where she placed two stents into the large arteries supplying his heart muscle, effectively restoring blood flow where those arteries had been closed off...the coronary artery was completely occluded, the artery on the front of the heart nearly so.We are indebted to Dr. Hall for her skill and her quick work, wasting no time and quite possibly preventing more significant damage to Sonny's heart had the procedure been delayed for any reason.

Unfortunately a chest x-ray and laboratory studies revealed that Sonny also has pneumonia. He is being treated with IV antibiotics and is getting lots of fluids by IV. On Wednesday, he was able to swallow pudding from a spoon, though he has not yet been able to handle liquids from a cup as he usually does. He may simply be afraid of choking, so he is not being pressed too hard over the liquids, as he is getting plenty of fluids via IV.

When I left Sonny to come home on Wednesday evening, he seemed to be resting comfortably. I had sat with him for a couple of hours and he held my hand very tightly. He is very responsive, is making eye contact and occasionally smiling when we discuss things that he finds funny. I was telling his nurse about how he can pull his head up if we work on keeping his neck muscles massaged and more supple, and he lifted his head off the pillow and half-smiled at me. He couldn't straighten it all the way up, but he wanted us to see that he knew what we were talking about, and to show her that yes, he really COULD do what I was saying he could do. He smiled again when the first bites of food he was able to swallow were chocolate pudding...Sonny loves chocolate.

The staff have all been wonderful, and we feel that he is in the best place right now. His technical care is excellent, and the staff have been very attentive to his specific needs. We have been given much opportunity to share about his condition and to make suggestions for communication, and our input has been welcomed. I have to say, it is quite a switch from what we are used to where people do not seem to want to hear what we have to say on his behalf. (Oops...did I let that leak out??)

So, for now, we covet your prayers, positive vibes, good thoughts, dances around bonfires in the woods under a full moon, chants, songs, meditations...be creative, any healing energy coming Sonny's way is most welcome. Thank you so much to everyone who have sent emails and posted on Sonny's Facebook, we are grateful for all of you.

I will do my best to keep these updates current as we see Sonny's progress, so please check back. Of course you are also welcome to text or call Lorrie at 206.330.3269, or email JustLorrie@gmail.com directly.

"The sky is NOT The limit...there are footprints on the moon."

What a family-filled week!

Happy Saturday!

It has been quite an eventful week! I'm going to write two separate posts today to bring everyone up to speed. First, I want to share about the wonderful family visit we had this past week, then I will write separately about the ongoing nursing home saga.

Sonny hardly took his eyes off of his Grandma all day!

Tuesday, my Aunt Tracy arrived with Grandma and Great Aunt Therese. We all enjoyed a dinner of homemade seafood chowder and berry parfaits, then took Grandma and Therese to their hotel for the night. I stayed with them the two nights that they visited, and had some of the most wonderful conversations with these two ladies! There is something just amazing about hearing the perspectives of people who have lived nearly a century. Those early morning chats will always be a treasured memory for me, it was such a privilege to spend that time with them.

On Wednesday we visited Sonny at HRNS, and enjoyed a nice lunch with him in the fresh air out on the patio. He smiled and smiled, obviously happy to see his Grandma and Auntie. After we were through with our visit there, Mom, Grandma, Aunt Therese and I all had Thai food for lunch at a nearby restaurant. It was just lovely.

Thursday was the best! We had a family get-together at the house with Aunt Tracy, Uncle Bill, cousin Drew, Samantha, and Timothy all joining in for an afternoon of good food and fun. Sonny enjoyed coming home for the day, and as usual ate like a feasting king. Though his usual routine includes a mid-day nap, he stayed awake all day long until we took him back at 8pm...it seemed that he just didn't want to miss anything, so he kept those eyes open until the very last minute!

Sonny and Great Aunt Therese

One last really awesome thing about this family gathering was that it gave us the opportunity to get another photo of the four generations of the women in our family: My Grandma, my mom, myself, and Samantha. The first photo of all of us together was when Samantha was just a month or so old, twenty-five years ago! So all in all, it was a very special day for our whole family, Sonny included. Thanks for sharing it with us by reading this update!

“What can you do to promote
  world peace? Go home and
  love your family.” 
                                      ~Mother Teresa

Friends...

Tuffy and Sonny, July 6, 2012

What a beautiful thing to have friends who stay in touch! For Sonny, it has been difficult to stay close to people he cares about because his communication has to come through us...his family and friends who can speak for him. Nonetheless, there have been some who remain close and Sonny always lights up when they stop by!

Buddies gabbing!

Tuffy came by on July 6th and again yesterday in July 17th, and once again Sonny beamed. I have to say, most people would not have gone to the lengths that Tuffy did in order to see his friend! He rides a motorcycle and the clutch cable went out a few blocks from Sonny's place, so he had to push his bike the few remaining blocks. Thenhe had to go get the part to repair the problem, which he did right there in the parking lot. THEN, he came inside and visited with Sonny for quite a while...it was great! We sat on the patio outside and enjoyed the fresh air and a soda pop while the guys gabbed.

The day before, Angela came by and visited with Sonny for a while in the afternoon, so he has had quite a good time seeing old friends! It is such a blessing to have people stop by to see him...he smiles and obviously enjoys connecting with people he is close to!

I am anticipating a trip to Greenlake with Sonny soon, whenever we have a day with minimal risk of rain. If anyone would like to meet us there for a walk, let me know and we can plan when/where to meet.

Sonny has been doing well recently, eating with assistance and very interactive. It is interesting to "read" the signals he gives us. I asked him yesterday if he wanted to grow his mustache out again and he reached up and stroked his upper lip with his fingers...I took that as a "Yes". So, we will give it a try and see how his skin behaves.

Once again, it was a blessing to see Sonny enjoy a visit from a treasured friend. Thanks to Tuffy and Angela for coming by, and to everyone who have been so supportive as we address issues within the facility and try to bring about positive change for ALL the residents there. We are so grateful for every friend...for every encouraging word...and most of all for Sonny's strong spirit that continues to teach us to PRESS ON!

Fourth of July 2012 was a great day for Sonny!

Mom and I scooped him up at HRNS after lunch and brought him back to the house for a while. He had some ice cream and watched "Rango" with us, an absolutely hilarious movie. Sonny always did like Disney/cartoon flics! We hadn't taken him out since his move to HRNS in early April, so we wanted to "pace his day" a little bit and not make him too tired. He seemed pretty energetic, so we decided to go ahead and go...

Sonny at Coldstone Creamery

...to the mall! Alderwood here we come! Sonny is so patient being loaded/unloaded in the van, and he didn't seem to mind the jostling about. We were the rolling brigade with Sonny in his wheelchair and Mom on her scooter as we browsed the mall and learned where a number of the newer stores were located. With Mom's new scooter we were all able to really enjoy running around and seeing lots of things without making anyone too tired. I remembered the first time I took Sonny to the mall shortly before Christmas 2010, and it was a little overwhelming for him. He shied away from some of the bright lights and louder noises, but yesterday he appeared attentive and not intimidated by comparison. Once again, it gave us a measuring stick of sorts in his recovery. He patiently waited while we looked at shoes (or at least put on a good show of patience!), and seemed to enjoy being outdoors while we strolled the newer side of the mall outside. I have to remember his sunglasses next time so he doesn't have to borrow mine!

For those who knew Sonny previously, it is no surprise that his all-time favorite dessert has always been ice cream. Well, no one does it like Coldstone Creamery, so he indulged in a scoop of yummy chocolate frozen wonderfulness and watched the people amble by. Ice cream twice in one day! We can't resist spoiling him a little now and then. He seemed comfortable and even smiled a couple of times, so I think we avoided brain freeze! As we made our way back toward the indoors of the mall, we passed two beautiful fountains with water splashing. He lifted his head toward the sound, so I wheeled him up close enough for him to see them and splashed the cool water on his hand...he smiled. He used to love the water, and it seems he still does!

We all enjoyed a Chinese food dinner (Sonny LOVES orange chicken!) outside in the fresh air before we loaded up to take him back. It was so sweet to see him trying to stay awake during the drive to Seattle...he was obviously tired from the day, but in typical Sonny fashion, didn't want to fall asleep and miss anything!

Mom and Sonny as we enjoyed an outdoor dinner

All in all, it was a lovely day. An interesting point is that I have been reading quite a bit lately about the balance between rest and stimulation for brain-injured patients. Fatigue can set their progress back, but without adequate stimulation there is less forward momentum in their recovery. So, with Sonny it is a tightrope walk between wanting to expose him to things he likes, pressing him just enough to engage in his surroundings without stressing him and causing excessive fatigue. If he sleeps for three days after an outing, it is obviously more detrimental than helpful to him. However, the general consensus seems to be that many TBI recoverers (I may have coined a new phrase) actually do BETTER with a little push now and then to "step outside their heads" so to speak. Sonny needs to see the world around him, people moving in and out of his surroundings, laughter, tears, children growing up, water splashing, dogs barking...the whole world continuing on. Only then can he see that HIS world is also going on! His entire existence is NOT the inside of a nursing care facility, but still encompasses his neighborhood, his friends, the moon, stars, and universe. Sonny's world has not diminished...who knows, one day we may all realize that his world has embraced even more than all of ours.

I hold on to the belief that one day Sonny will speak to us again. With his voice? Perhaps...perhaps not. Maybe he will need a letter board to spell out what he wants to say, or an Ipad keyboard (THANK YOU, MOM!!!) to type his thoughts. But one day, he will tell us his thoughts the way HE sees everything. I believe that. When he does, oh the stories he will tell us! So many long days and endless thoughts...and I think we will all have so much to learn from what he says!

Meanwhile, July marches on and we look forward to more days like yesterday for Sonny...and better! It was sort of odd in a way, knowing that in years past there were not many recent memories of Sonny, Mom, and me all together doing something random like a trip to the mall. But nowadays, it is one of our most special experiences and will be a treasured memory. So you see? Sonny gives us these gifts so often. He brings people together, makes us see the value of those we love, shows us the strength of the human spirit as he overcomes obstacles most of us have never dreamed of. He is a catalyst for helping us all to see reality, whether or not he would ever take credit for it. Holding onto every precious moment takes us back to our simple motto: Don't ever give up. Sonny continues to be one of our most powerful teachers.

Extra thanks to my Mom, who has made so many things possible through her generosity and her endless commitment to seeing Sonny regain all that he possible can. In the face of so many hurdles, this amazing woman has proven herself to be a tireless runner. Sonny would not have had the opportunities that he has were it not for her aggressive advocacy for her son...I am honored to come alongside and walk beside her in this journey. Very seldom do the "backstage supporters" receive any accolades...this Lady deserves a medal for all that she does on a regular basis. She is the Hero behind our Superman. :)

Here's to one more victorious day.

Thanks for reading.

Guestbook Archive Now Available for Viewing!

After many hours of copying pasting, and general cleanup, Sonny's old guestbook is archived here for easy viewing! Sonny's friends and family began his Caringbridge site on September 8, 2008, four days following his accident. The outpouring of notes and encouraging thoughts over the months and years since then have been a blessing, and we wanted to be certain that not a single correspondence would be lost. Those entries can be viewed by clicking the Guestbook Archive tab above.

It was enlightening as I browsed several of the entries while compiling them, to see the progress different people noted in Sonny over time...he has come so far. Thanks once again to everyone who has written and those who continue to drop by his little corner of the web to let him know you think of him. It means more than you might think, and we are grateful!