Journal 2010
• THURSDAY, DECEMBER 30, 2010 11:53 AM, CST
Christmas update...
I hope the holidays have been wonderful for all of you!
Sonny came home to Mom's house for Christmas Day and had a lovely time. Of course, we fed him lots of Mom's awesome cooking, and you should have seen his eyes light up when we pushed him up to the table and he saw the whole baked ham and mashed potatoes! One thing Sonny knows for sure is that his family can cook, and there is nothing in the world like a homemade Christmas dinner!
He was able to open his gifts himself with a little help. It took a minute, but he figured out how to slip his fingers inside the wrapping and tear the paper open. Mom wisely wrapped his things in soft tissue paper, so that made it easier for him to manage. Obviously he got the idea, and his coordination came together well enough to get to his goodies!
On his closet door at North Creek are taped several beautiful Christmas cards sent by friends from afar. Thank you to all of you who thought to send notes and holiday greetings! His Ruby's Diner bag from our recent trip to Alderwood mall is also hung on his wall, as are a few pretty holiday gift bags and wrapped boxes left over from Christmas gifts. We have been focusing on getting more of his own belongings on the walls where he can see them, since he is much more attentive to his surroundings than he used to be and we want him to feel comfortable with his personal things in his environment.
Yesterday (Wednesday), Mom's sister Tracy, her husband bill, and their two amazing college kids Drew and Megan all cam to visit for the afternoon, so we brought Sonny home again to spend the afternoon with family. He had a great time, again enjoying the food and company. He actually napped a little bit yesterday, which we suppose might mean that he understands that these visits will be commonplace now and he doesn't have to force himself to stay awake every minute he is here. The first time he came for a visit he started to cry when it was time to leave, and we thought he might be sad thinking that the fun visit was over and he wasn't certain he would be doing it again soon. Now that he realizes that we can bring him home often, he seems comfortable with the trips back and forth and he just enjoys the time here without the upsetting emotions when the visit ends.
Last night before I left him for the night, I gave him a small piece of chocolate bar. He ate one bite, then held the remaining piece in his left hand...then moved it to his right hand...then to his left...then back to his right. (This small coordination is a big accomplishment, so it was exciting to see him do it!) I asked him if he didn't want to EAT the chocolate, and he looked right at me and said "EEEWWWWWWW", with his face all scrunched up. I realized he was commenting that his fingers were now all covered with melted chocolate...he wanted his fingers cleaned off! He ate the piece of chocolate and held his hands for me to wipe them off, then smiled. While this was a small exchange, it was clearly Sonny being able to communicate a point to me and be understood...he was obviously happy about that.
We are planning to embark on a schedule of bringing Sonny home every other Saturday. This weekend we will probably NOT bring him home, since he has been here three days in the last week, and we want to have him here on 1/9 for my birthday. As weather permits, I will also try to take him out for short trips when I can, even just to the mall or a store to stroll around and get him accustomed to the sights and sounds of things around him. Loud noise and big crowds are a little overwhelming for him yet, so we want to do this in "small doses" so we don't stress him out all at once, but he does seem to enjoy the time out.
We hope that all of you have a wonderful New Year's and that 2011 brings health, prosperity, and peace to all of you in every way. PLEASE remember to stay in touch with Sonny, he needs his friends now more than ever. I am happy to make phone calls to anyone who would like to talk to him for a few minutes when I am with him, as he recognizes familiar voices even on the phone and enjoys listening to people talk to him!
**Please note: I finally changed my cell# to a local Seattle number, so use this new number for me now: 206.330.3269
Many blessings to all of you!
Lorrie Jean
JustLorrie@gmail.com
206.330.3269
• SATURDAY, DECEMBER 18, 2010 3:03 PM, CST
SONNY WENT TO THE MALL!!!
Yes, yesterday Sonny had his first trip to Alderwood Mall! We picked him up at about 2:30 and went to the mall, strolled around the mall, and ate a chocolate milkshake and french fries at Ruby's in the food court. Sonny was very attentive and seemed to enjoy all the holiday sights.
There was one thing that did seem to cause him some degree of stress, and I believe it was because it was just too much visual stimulation all at once. We were walking along and came upon a kiosk selling these really cool looking "wind chime thingies" that spin...they are cut from sheet metal, and they turn in the air current. They had lights shining on them to make them stand out, and as soon as Sonny got close to them he put his head down and stared into his lap. The second I turned him away from the display, he lifted his head up and began to look around at the storefronts again. I really think that the bright lights, the shiny colors, and the motion of the wind chimes was just too much all at one time for him to take in, so he simply avoided it until we passed by. It was interesting to me that he so clearly demonstrated a negative reaction to something that was overwhelming, and then came right back when the overwhelming stimulation was no longer in view. I will keep all of this in mind when we take him out next, so that I can be aware of things that he cannot handle and focus more on the things that are not too much for him.
He certainly did enjoy the chocolate milkshake and french fries from Ruby's, and he watched the people go by as we sat and ate. He fed himself the french fries, though needed some help dipping them in the shake. :) We took our time and he managed it just fine with no choking at all and no hiccups!
The ride in Mom's van was also pretty stress-free for the most part. I think Sonny is getting accustomed to rolling up into the back, as he even ducked his head a little this time as he rolled past the door frame. He remained alert and looked around during the ride, even seeming interested in the other cars around us. It was very easy to get him out at the mall, as they now have excellent areas for loading/unloading passengers right at the curb without blocking traffic, so we could take our time and not feel rushed.
All in all, he took the day mostly in stride and did very well with a new activity. Now here is another exciting part! Today, a full day after the trip out, Mom visited him and asked him about the trip to the mall yesterday. He lifted his head and got a huge smile on his face! A critical point is that HE REMEMBERS THE TRIP! Short-term memory is always a question with a severe brain injury, so these kinds of signs that he recalls events are very encouraging and give us stepping stones to build on. Reminding him of the trip, asking him questions about it that cause him to "try to recall details" help to exercise his ability to think and remember...which stimulate his brain to establish the necessary connections to do just that. More connections means more memory and more thought processes. More thought processes mean more ability to re-learn and adapt. More ability to re-learn and adapt means more possibility of greater independence in his daily life, beginning with the simple tasks of feeding himself, brushing his teeth, simple coordination recovery. Of course, the smaller steps between each of these stepping stones can be numerous, but we expect that. Nonetheless, each step is forward progress and we are grateful for every inch that make up the miles he still has to go.
The challenge is enormous...but those of us who know Sonny, and I mean who "know the REAL Sonny", know that he is a man who has never shrank back from a challenge. He is not shrinking from this one, either. Sometimes the effort it takes for him to even TRY to do a simple task is painful to watch...his visible frustration sometimes is even more brutal to see. The feelings of helplessness can be overwhelming, as those of us who see him all the time don't always know what to even try to do. A favorite phrase I know says "When in doubt as to what to do, just do the next good thing...then the next...then the next...". That is all we can do here. Just the next good thing.
We truly hope that Sonny will receive holiday cards, perhaps a phone call when Mom or I are there with him (If we know someone would like to say hello from afar, we can call you and let you talk to him on our cell phones! He loves that!), or even better a personal visit when folks have a few minutes to stop by. We will be bringing him home to Mom's house for Christmas Day, I believe, and since we are able to bring him out more now it may be possible to arrange visits in fun places such as a shopping mall, park, or other venue that someone might suggest...? I know that Sonny has always loved the Seattle waterfront, so perhaps when the weather warms up we could plan an afternoon down there somewhere that would be easy for some folks to gather to say hello.
Meanwhile, as each day rolls by we remember all of those who have been dear to Sonny and to our whole family, and we truly hope for wonderful holidays and countless blessings for each one of you. PLEASE be safe in your travels, and do not overlook a single opportunity to share your affection with those who are dear to you...life is so fragile and so precious.
Feel free to contact us at any time, and to check out Sonny's facebook page as well. You can post things there and read other's comments, and we do share all of those contacts with Sonny.
http://www.facebook.com/profile.php?id=100001615784265
Merry Christmas!
Lorrie Jean
JustLorrie@gmail.com
619.365.7028
• FRIDAY, DECEMBER 10, 2010 10:15 PM, CST
Hi everyone, I was with Sonny for a few hours today and wanted to let you all know he had a good day. As Mom said just this morning, he was a bit tired but tried to stay awake and alert while visiting. He hed my had and touched my face, smiling when I said "I love you, Sonny".
He now has a sparkly Christmas garland hung up over his window with a bunch of different shades of silver and gold balls hung on it so he can see them when he is in his room. I will hang his stocking (bright red, o course!) off of his closet handle or something so he has a direct view of it, too. I think it is helpful to have "markers" of seasons and holidays, to reinforce time passages and remind him of what's going on around him...just my opinion.
Tim, one of the aides who regularly works with Sonny, explained some of the things he does daily with Sonny as far as stretching and range of motion exercises, working with his neck/head, and his meals. He really does a LOT compared to most of the others who have done Sonny's care, and is very willing o disuss new ideas and additional tings to help Sonny. At one point during dinner, Sonny grimaced and closed his eyes, wouldn't openhis mouth, just seemed to "be somewhere else" for a minute. I was very concerned, but Tim immediately gave Sonny his full attention and ascertained that he was not in danger of any kind...then he talked to him quietly, telling him it was okay to take his time, he could refuse any food he didn't like, he could come back to eating when he was ready, etc. Vey quiet and soothing. Sonny took a really deep breath and visibly relaxed, waited a few minutes, opened his eyes again, and reached for my hand. He finished his meal just fine. It seems as though he was just feeling rushed or disconcerted and needed some time to collect himself and be comfortable with things. Tim was awsome.
Better stop now before I drone on too long. I can only re-state what Mom has already said, that Sonny needs to see the people who love him...friends, family, everyone. PLEASE stop in, even if only for a moment or two. Those moments are a treasure to him.
Enjoy the holiday season, hold those dear to you very close, and don't forget that Sonny can't come visit all of you..."since Muhammad can't come to the mountain, the mountain must come to Muhammad".
Blessings all around,
Lorrie Jean
JustLorrie@Gmail.com
• FRIDAY, DECEMBER 10, 2010 10:12 AM, CST
Hi everyone, Sonny has been pretty tired lately but last night he had perked up. Maybe it was the polish sausage he had for supper but he was still awake when I left and actually had his head up enough to see the TV. The room he is in now has the new TV's that hang from the ceiling so they are higher up than the other ones. Lorrie hung his birthday balloons on it to get him to look up. He can probably see it easier from the bed than the chair. But last night he really zoned in on it. He hasn't used the new yes/no buttons yet but he looks at them so he knows they are there. Nurses and aids are also reinforcing by pushing the button when they ask him a question. Just takes time and patience,
We are back to winter again, the Christmas season, and occasional bad roads. I know I sound like a broken record but those of you who live close - please stop in and see Sonny. Christmas cards would also be good but some friendly faces would be better.
I am planning on bringing him home for a while on Christmas. And possibly this Sunday if I can get some help getting him in and out of the van. Let me know if any of you can get to my home easier. My home phone is 425-640-6926.
Take care everyone and I hope to see you soon.
Loretta
• SATURDAY, NOVEMBER 27, 2010 2:54 PM, CST
Hi everyone, Lorrie hasn't updated so I will. Thanksgiving was great, just not what we planned. The van that we were going to use froze in the bad weather. At least the hydraulic line for the lift froze and broke. This was Wednesday night. So Lorrie and I made the decision that she would cut some plywood for a ramp and we would muscle him into my van. Unfortunately on the way over here Thursday morning it fell out of the back of the truck and broke. So we took the ramp Mike built for the porch steps and went to get him. We found that the ramp is too short - incline to steep - to put him in the back door. After much pondering and pushing we found that the ramp fit nicely on the lip of the side of the van. And in he went!! He cannot sit up straight because the roof is too low. And tilted he takes up most of the back of the van. But it works!!!!!!!!!!!! So I have found a couple of ramps for vans on line that are reasonably priced and am thinking about which to get. If anyone out there has some knowledge of what I would need I would appreciate the input. I doubt that I would be able to do this by myself, but it would be nice to have it be easier for Lorrie or Sam. I thought 6 feet would be a good length to give us a lesser incline and still fit in the van. Aluminum is much lighter so would be more manageable. It was really nice to not be at the mercy of a bus schedule. I didn't think that wheelchair would fit at all as the arms are too wide. But we found that they are soft and can be pushed through. We just have to watch his head - don't want a head injury on top of a head injury!!
Sonny actually tolerated all the pushing and pulling very well. He seemed to have a good time. Now recognizes where he is and seems to know he can come back. He ate a LOT of turkey and pumpkin pie but had to take a nap in the middle. He was pretty tired when we got him back to North Creek. When some of you can get over here we need to have a party at my house. Then you can visit him here.
The other thing I found are "Go Talk" buttons. You can put words or 10 second phrases on them and they will talk when you push the button. I have one saying yes for the left arm of the wheelchair and one saying no for the right arm. Lysa has taught him to look at the left arm where she had a yes taped there and to the right for no. He still does that even though the signs aren't there any more. So now we want to move him to pushing the buttons. I'll take them in this afternoon so Lysa can start working with them.
Well, I have a man here installing a dish for Direct TV. I am really tired of Comcast upping the prices. But I will put the phone and computer on their plan. I can get a good bundled deal for those but they won't include the TV because I already have it. And have been a loyal customer for over 20 years while they keep raising the prices!! That is something that really makes me angry and I think it is really poor marketing. Cell phones do the same thing. Give a really good deal on a new phone to a new customer but not to an existing customer.
Aggravating.
Hope you all had a great turkey day. Now we have to get ready for Christmas. Time seems to fly by. Please leave a note when you read this so I can take it in and read them to Sonny.
Take care all
Loretta
• MONDAY, NOVEMBER 15, 2010 12:21 PM, CST
Hi everyone,
When I saw Sonny Thursday evening he was not happy with his new room. I think because he was back by the door and couldn't see outside. Sam was there Saturday and he was better but she was told he wouldn't be going back to room 111 and she had to get his stuff out of there. So she put it all in her car. And I had a fit!
Yesterday he was in a better mood and ate well. Did a lot of it by himself. But he fell asleep before the Seahawks game even started. I sure hope he woke up at some point because it was a really good game!!
North Creek just called me and asked if it was OK to put Sonny in 113 instead of 111. They will take out the middle bed and he will be by the window just as he was. I think the beds face the same way even so he shouldn't notice a difference once we get all his stuff back in there. And he will have the same nurses and aides that he has been having. Maybe one of you handy guys could move the bird feeders? Sonny would really appreciate that. The little hummingbirds are facinating.
So take care all and please come visit. Think about how bored you would be if you were there and your main visitor was your mother!!
Loretta
• THURSDAY, NOVEMBER 11, 2010 1:30 PM, CST
Just a quick note to let everyone know that Sonny's room at North Creek will be getting scrubbed and waxed and some painting done. He will be moved to room 219A but should be back in 111 by November 15th. I don't know how he will do with this because they aren't going to move all his "stuff" for such a short time. Since they aren't painting the walls all the way up there is no need to take everything off the walls - and there is a lot!! Sonny is used to seeing all the pictures and posters, etc and he may miss them. We will see.
Angela - I saw that you were there on Tuesday. Thank You!! I know he enjoys your visits. He is so much more awake and perky in the evening if someone has been in during the day. When no one comes in for a few days he zones out and sleeps. He has been amazingly even-tempered. I expected him to be really angry about where he is and according to the experts depression is supposed to be a big problem for head injured patients. I'm not saying he doesn't get cranky because he does. But there is usually a reason for the crankiness. Sam was there yesterday and said he did really well feeding himself. It seems he does this for everyone but me!!! I guess I have to be tougher.
Take care everyone. Visit when you can.
Loretta
• TUESDAY, NOVEMBER 9, 2010 1:07 PM, CST
Hi everyone! I had a good visit with Sonny this weekend. He was perky and just seemed happy. I had a chance to talk to Lysa, the speech therapist. She is very happy with his progress and is still trying to get the Dynavox computer for him. We talked about some toys and/or big buttons that he could be working with to start learning how to use it. I have checked on a number of devices on line that are pretty simple and may be a good beginner thing. I will make a trip to Toys R Us (ugh) and see what they have too. They do have a section with things that are useful for autistic children that can work for him too. The Dynavox program is really nice but very, very expensive. There are some other companies that make similar devices that are more affordable. We do still have his bike that can be sold to finance this kind of thing but it wouldn't make a dent in the Dynavox tab.
We are still trying to get the access van set up so that it will be easier to get him home. Would like to have him home for Thanksgiving dinner this year and Christmas should be more fun.
I think Shanna is the only one of you that has been in recently. Mealtime is probably the bet time to catch him awake and alert. He does get tired easily but if you catch him when he is awake and he is enjoying himself then he will fight to stay awake. If he is already sleeping then it is hard to wake him up.
So all of you take care and I will update next week,
Loretta
• SUNDAY, OCTOBER 31, 2010 8:04 PM, CDT
Hi everyone, We owe you all an apology for not updating for a couple of weeks. In our defense we have been battling colds and Lorrie and Sam have been out at job interviews. We have been in to see Sonny though, and we had him home for a while last Saturday. He did fine, even though they had some bus trouble on the way here. He seemed to be really tired though and fell asleep after lunch. I have a really cute picture of Sonny and Lorrie sound asleep. I'll send it to her so she can post it. He also thought it was great fun to be out in the rain while we waited for the bus to take him back.
Scott is still seeing Sonny every Wednesday. We really appreciate the time he is giving to him. Progress is slow but some little things are showing up. Like his neck is looser and he pays attention better. He is also moving that bad foot himself. He also is as stubborn as ever and was really angry at me because I missed some time there. It was almost funny because he has so few ways to express himself. So Tuesday night when I put the fork in his hand he put it, with the food on it, in his lap. So I tried to feed him and he clamped his mouth shut and stared at the wall. And he managed to not look at me even when I put my face right in front of his. Fortunately he seemed to realize that if he didn't eat he would get pretty hungry and he had made his point.
Sam is there today helping with supper and Lorrie should be getting her schedule set so she will have regular times to be there. They both are starting new jobs so we will probably be working out schedules, etc.
So take care everyone and thank you for the birthday cards and your comments.
Loretta
• WEDNESDAY, OCTOBER 13, 2010 3:25 PM, CDT
Just a quick note today to let you all know that Sonny had a great day so far!
Scott, a massage therapist and Bowenwork practitioner works with Sonny every Wednesday morning and this morning we saw some wonderful things:
1. Sonny moved both of his legs a great deal, wiggled toes on both feet, and smiled when he watched his LEFT foot (the more severely locked one) make small circles.
2. He ate his entire meal by picking up his own fork with the food on it, placing it in his mouth, and setting the fork back on the plate for me to put more food on it. :)
3. He did really well holding his head up and following Scott's directions, such ass opening his mouth really wide while Scott worked on his jaw, clenching his teeth together, and putting his left arm back onto the arm of his chair from his lap...all on his own.
4. This afternoon he is getting a shower. When I asked him if he thought the warm water would feel good, he said "Mmmmmmmmmmmmmmmmmmm" and started tugging on his shirt. :)
All in all, it was a great morning. Before I left, we went for a short walk outside, and I wanted to put a blanket on his lap because it was chilly. I put his red blanket and his Seahawk blanket on the bed in front of him and asked which one he wanted. He looked from one to the other several times and just when I was about to assume he didn't mind which we used, he lifted his right hand and pointed to the Seahawk blanket. :) So many small steps that are, in fact, monumental victories.
So now I am tackling some other tasks while I daydream of one day walking into Sonny's room, seeing him smile, and hearing him say:
"I'm bbaaaaaaaack!" :) :) :)
Thanks for the encouraging notes, birthday cards, and continual kind thoughts. We remind him often how many people love him and are always thinking of him and praying for him. He smiles more and more these days, so I wanted to convey to all of you that your affection for him is felt even from afar.
Hope you all are doing well.
Many blessings,
Lorrie
619.365.7028
JustLorrie@gmail.com
• TUESDAY, OCTOBER 5, 2010 11:11 AM, CDT
Hi Everyone!
Mom did such a great job sharing the highlights of Sonny's visit home! It was indeed a tremendous day, wonderful to have Sonny visiting at Mom's home but also amazing in several things we learned through it all. I'll share some of those things here to bring you all up to speed on some new things!
First, as Mom mentioned, traveling has usually been stressful for Sonny. He would become obviously agitated and then close his eyes and go to sleep in order to just avoid the unpleasant situation. However, during the ride on the bus both to Mom's house and then back to North Creek, he remained alert and even lifted his head to look around several times. I sat next to him and Sam stayed directly in front of him the entire ride, so that he could see her and feel both of us holding his hands. He also had his headphones on with his ipod, and seemed genuinely quite calm about the whole thing!
A friend of mine had fashioned a plywood ramp that fits over Mom's front porch steps, so getting Sonny into the house was pretty simple. Generosity has come to us in so many ways from so many people!
Now, we also expected that Sonny would be very tired from the ride over, and that he would need his regular nap sometime in the afternoon...again, we were surprised. He did become a little sleepy-looking a couple of times, but seemed to prefer staying awake for the socializing. He ate very well, of course got his grub on with a big piece of birthday cake and ice cream, and held tightly to a long ribbon and piece of wrapping paper.
As the time approached for us to get him ready to go back to North Creek, we told him we would be leaving soon. At one point I came into the living room and he had tears on his face...he had been crying. Mom came in with us and quietly hugged him and explained that this was only the very first of many visits, that he would be coming back again and again, so not to be sad. We thought he may have believed this to be a "one time thing" and he didn't want the visit to end. He cheered up, so it seemed that he understood. He also may have simply experienced a bit of overwhelming emotion under the circumstances, but all in all it was good to walk through the moment with him. He was in a good humor when we all walked with him out to the bus.
One of the really exciting parts happened over the next two days, as we saw Sonny on Sunday and Monday...and he was awake, alert, and not overly tired as we had expected. When I saw him on Monday, he did very well with his lunch, even reaching across his plate on his own to pick up baby steamed carrots to eat with his fingers. He had not done that before, so it is something new to take note of. The thing is, there are many elements to such an action:
1. He had been eating meatballs and pasta, and his next bite was ready to go. But instead of reaching again for his fork handle, he decided on his own that he was interested in the carrots.
2. The carrots were on the far side of the plate with other food in front of them. It took an effort on his part to divert his attention and decide to pick up a carrot instead...it was a "change of focus" all on his own without suggestion from anyone else.
3. He managed the coordination several times in a row of picking up a carrot and getting it into his mouth by himself.
So you see, while we had expected him to be tired and perhaps a bit sluggish on his skills, he was actually quite alert and pushing ahead with new things! It seems like one of those "When the student is ready, the teacher will appear" sort of things. Sonny seems to be ready for new things right now, so we are pursuing those new avenues as much as possible.
One thing we recently have been researching is the way the brain heals and re-connects over varying time frames. In a nutshell, the brain will try to heal broken connections for a long period of time. It will try to return to the previous pathways of activity wherever possible. However, eventually those connections will either be repaired or they won't, and with Diffuse Axonal Injury (DAI) there is definite interference with those connections being re-formed. This means that eventually the brain will begin to try to make NEW connections around the damaged areas instead. Imagine it this way: Let's say you have an old electrical panel in your home, perhaps about fifty or more years old. Some of the wires are frayed, some are exposed and hazardous, some are completely severed. Sometimes your lights come on when you push the switch, sometimes they flicker for only a second, and sometimes they fail to come on at all. You try to repair the damaged wiring and re-connect the wires that are completely broken, but still your lights are iffy at best. Finally, you give up and just re-wire the whole system, bypassing the old malfunctioning wiring and making new electrical connections completely outside of the old damaged system. This is pretty much what the brain tries to do when the previous connections are simply beyond repair...it begins to find new connections.
This example leads us to more questions than answers at this point, but at least it leads us somewhere! How many new connections can be made? Out of the billions of interrupted nerve impulses, how many can be re-connected? How does the brain even "know how to do this", especially considering that it itself is a damaged organ? How does all of this re-connecting equate into physical and cognitive function? Is it possible that Sonny's brain could eventually be restored to a point that he could walk...speak...read...write...? The answer to all of these and the thousands more questions we ask all the time is "No one knows". But the questions themselves, the fact that Sonny is doing more now than he was doing even three months ago, and dare I say simply the person that Sonny IS, all lead us toward believing his progress of recovery will continue and that there are good things in store.
In the meantime, we continue on with the daily routines which will now include more visits home and more trips out and about in the community. I am anticipating taking him to see the Christmas lights this year. :) Visits from people he knows are priceless, and every card/letter/email are read to him. PLEASE, as the holiday season approaches soon, remember to send a card or stop by if you can.
Also, Sonny now has is very own Facebook page, to make it as easy as possible for more people to read his updates (this one will be duplicated there) and leave him notes. I check it every day, so nothing will be missed. Let's get Sonny a huge list of friends!
http://www.facebook.com/profile.php?id=100001615784265
If you actually read this entire post, you deserve a medal. :) We look forward to hearing from you and so does Sonny! May you all be blessed with every need met, every goal met, and people you love populating every one of your days.
Gratefully,
Lorrie Jean
619.365.7028
JustLorrie@gmail.com
• MONDAY, OCTOBER 4, 2010 10:56 AM, CDT
Hi everyone!! Sonny had a very exciting weekend and we all did too. Sam and Lorrie rode with him on a regular bus and brought him home for lunch and a birthday party. Then they took him back the same way. We have applied for an Access pass for him but have found that Metro is not an easy group to work with. Hopefully by the time we do this again in a few weeks the pass will be in place and it won't be as difficult. But the good news is that Sonny did very well. Usually anything outside the normal routine causes upset and he goes to sleep. But I guess this was fun and worth staying awake for because he did stay awake the entire time. And he never seemed stressed, just hungry and thirsty. So in the future we can have some get togethers at my house instead of the middle of the nursing home. Last week Angela gave him a really nice seahawks blanket (leaving seahawks in small letters after yesterday's fiasco) and this week he got a nice plant for his room which I really will try to remember to water,and a Sounders jersey. These from his Aunt Tracy and Uncle Bill. And his grandma sent up lots and lots of Milky Way bars and two big bags of M&Ms. He has enough candy to last a long long time. In fact we are putting most of it in the freezer and taking small amounts at a time to the nursing home. Mary in Pennsylvania sent a darling little glass carousel in a red box. They are on his nightstand where he can see them.
I found some good sales so his closet has more flannel jammie bottoms and long sleeved t-shirts for winter. His bed is by the window now and he is regulating his temperature in a more normal way now too and I found last winter that he got chilly.
Lorrie will probably want to add to this so I will sign off. Take care everyone and please stop in when you get a chance.
Loretta
• SATURDAY, SEPTEMBER 25, 2010 9:27 AM, CDT
Cool fact about Sonny:
Last year on his birthday, he could only eat the frosting from his cake because he was not yet able to eat solid foods...not even cake. :( This year, he has now been eating solid foods for over half a year, and can eat his cake with abandon! :) Progress seems slow sometimes...but at moments like this we see so clearly how important EVERY victory is, no matter how small it may seem.
Go Sonny!!!!!!!
• THURSDAY, SEPTEMBER 23, 2010 4:23 PM, CDT
Hi Everyone,
Sonny has had a great week so far! The crown of it all was his visit with Tom Howard yesterday, which was wonderful for both of them. Tommy and Sonny have been extremely close over the years, ever since Tommy was just a very little boy, so it was really special to have them re-connect.
Sonny also had a visit from Scott Wurtz, a local massage therapist and Bowenwork practitioner who is working with Sonny now. When he greeted Sonny, Sonny lifted up his head and smiled at him! This tells us that he remembers Scott at least in some measure...he doesn't smile for just anyone, you know! Bowenwork is a relatively newer form of therapy, so we are very interested in seeing the effects it has on Sonny. So far, so good!
Remember that Saturday at 1pm is cake and ice cream time for Sonny at North Creek!
If you need directions to get there, please give me a call and I can help you out with that. 619.365.7028
The address is:
10909 NE 185th St. Bothell 98101 Room 111
You can also connect with Sonny on his new Facebook page:
http://www.facebook.com/profile.php?id=100001615784265
I'll keep this short for now, and hope to see many of you on Saturday. Blessings to all of you, and THANK YOU for the many notes in Sonny's guestbook! I will take my laptop in to show him all of your notes, photos, etc.
Peace,
Lorrie
619.365.7028
JustLorrie@Gmail.com
• WEDNESDAY, SEPTEMBER 22, 2010 9:11 AM, CDT
There CAN be miracles! This song is from the soundtrack to "The Prince of Egypt", and today it is for you, Sonny! You continue to inspire me!
Many nights we've prayed, with no proof anyone could hear
In our hearts a hopeful song we barely understood
Now we are not afraid, although we know there's much to fear
We were moving mountains long before we knew we could
In this time of fear, when prayers so often prove in vain
Hope seems like the summer birds, too swiftly flown away
Yet now I'm standing here, my heart's so full I can't explain
Seeking faith and speaking words I never thought I'd say
They don't always happen when you ask. and it's easy to give in to your fears
But when you're blinded by your pain, can't see your way straight throught the rain
A small but still resilient voice says hope is very near
There can be miracles, when you believe
Though hope is frail, it's hard to kill
Who knows what miracles you can achieve
When you believe, somehow you will
You will when you believe
You will when you
You will when you believe
Just believe...in your heart
Just believe
You will when you believe
• MONDAY, SEPTEMBER 20, 2010 6:36 PM, CDT
Hi everyone,
Just wanted to add a photo of Sonny today. He was in great spirits, and smiled really big when I told him he would have some visitors for his birthday on Saturday! Sooo....come on out!
Here is his gorgeous self...handsome as ever!
Blessings to all of you in the coming week,
Lorrie Jean
JustLorrie@Gmail.com
619.365.7028
• SUNDAY, SEPTEMBER 19, 2010 6:22 PM, PDT
Sonny's birthday is this Wednesday...cake and ice cream on Saturday!
Hi everyone,
Sonny is doing really well this week, and was smiley and in a good mood when Mom visited him today. We have our schedules down pat pretty well so that one or the other of us are there to spend time with him every day of the week. It has been a huge blessing for me to be able to finally be a part of this, since I have been away for quite a while. Mom has been amazing at teaching me everything she knows about helping Sonny, grooming, even his more subtle signs of moods and emotions that are difficult to discern. (Thanks, Mom!! You are so amazing!!!!)
This Wednesday, September 22nd, is Sonny's 45th birthday. We hope that many of you out there will take a moment to send him a note or card to let him know you are pulling for him. :)
On Saturday, September 25th, we will be having cake for Sonny's birthday at the nursing home at 1:00 pm. We would LOVE to see a number of his friends show up to wish him well and to CELEBRATE all of his progress these last two years!He has come a long way, and we really want to focus on the many victories he has worked so hard for...it has been a long road, and all along the way there have been tough moments alongside glorious achievements. Let's get together and give Sonny Hoorahs for his bravery through all the struggles, and surround him with love and attention to honor how much he means to all of us.
It looks like a busy week ahead, but we will try to get a reminder posted later in the week. Sonny needs all of us, so if you can be there, please do! If you can't, please send a note to tell Sonny "Hi".
THANK YOU t6o those of you who have stayed in touch. Your support puts a smile on Sonny's face whenever a letter is read to him or familiar names are mentioned.
Many blessings and peace to all of you! Please feel free to call if you have any questions.
Lorrie
619.365.7028
JustLorrie@Gmail.com
• WEDNESDAY, SEPTEMBER 15, 2010 3:33 PM, CDT
Good afternoon Everyone!
Just wanted to let everyone know that Sonny is doing well, though he did an excellent job of reminding me that he is, after all, still the infamous Sonny Perencevic and is capable of freaking his little sister out completely! He ran a fever on Monday, which I had never witnessed firsthand, and looked pretty awful...come to find out it was nothing serious and he was doing much better by evening. I can hear him telling me, "Geez...get a grip, Lor!". :) One day he will be able to say those words for us again, and we will all celebrate!
Today he saw the podiatrist, who removed a small portion of ingrown toenail that was still embedded below the skin, and dressed it with an anesthetic goo so that it wouldn't hurt for the next couple of days while it heals. He seemed very nice, and was actually quite attentive, took plenty of time to explain to Sonny every step of what he was doing, and answered all of my questions. It should heal up very well now.
Otherwise it has been pretty routine this past week. Mom reminds me that Sonny's progress has been "consistently inconsistent", in that he tends to make forward strides all of a sudden and then slow down to a plateau for a while...this seems to be what he is doing now. Though, it is likely that he is still a bit fatigued from the fever the other day, which will pass.
We want to encourage those who can to stop in and see Sonny when you have a few minutes free, as contact with friends is very important to him...he can't pick up a phone or write a letter, so those of us who love him have to take the bull by the horns. :)
Also, Sonny's birthday is only one week away! Yup, September 22nd will mark the 45th year of Sonny's journey on this big blue ball, so we are hoping he will hear from many of you through a card or letter.
Meanwhile, thank you to those of you who have kept in touch! Every contact is appreciated so very much. Have a great week, and feel free to email if you have any questions.
Blessings and Peace,
Lorrie
JustLorrie@gmail.com
• SUNDAY, SEPTEMBER 5, 2010 8:52 AM, CDT
Happy Sunday, everyone!
This is a lengthy entry, I hope you will take a moment and read all the way through. Info about Sonny's birthday at the end!
It has been a really good week for Sonny! First, special thanks to Angela and Taylor for coming to visit yesterday! Sonny really enjoyed seeing you both...there were so many smiles and "head up moments" while you were there! Also, "Mike the mystery visitor" appeared a few days ago, but we have no idea who you are...you came and went without signing the guest book, so your true identity remains an enigma.
We have been working a lot on massage techniques for Sonny's neck, back, and feet this week, and are already seeing some progress. He is so patient with us as we learn what works and what doesn't, which things are actually painful or uncomfortable, versus which he is able to tolerate for longer periods of time. One of our first goals is to loosen his neck and upper back/chest muscles to enable him to more easily raise and hold his head up straight. The strenocleidomastoid muscle that runs from just behind his left ear downward and connects near his collar bone, is severely contracted, which pulls his head downward toward his left shoulder. Releasing that muscle allows us to move his head to a straight-up position, and so far with gentle stretching we have been able to get his head tipped all the way back to touch the handle of his wheelchair...to you or I that would be like sitting up straight and tipping our chin upward to look toward the ceiling. Doesn't seem like much when your neck is normally mobile, but for Sonny this is a big accomplishment! The stretching and massage is not "painful" but definitely can be intensely uncomfortable when we target the specific knots in his neck and shoulders. If something gets to be just too much and he wants me to stop, he can reach straight up and grab my arm with his hand! That firm grip is his way of telling me, "Okay Lorrie Jean...back off for a minute, I need a break!". :)
Yesterday Mom and I experimented with sitting Sonny all the way forward in his wheelchair, sort of slumped forward on a pillow, so that I can work on his back lower down. A good back massage is pretty difficult in a wheelchair, but Sonny seemed to enjoy having his back loosened up a bit and just the shifting of his position probably felt good for a change. Immobility is not healthy, so another of our goals is to increase his movement as much as possible and give his muscles and joints a chance to re-learn everything they can do. It's odd: for a while while he was getting physical therapy many months ago, he didn't seem to progress much. It's like his head wasn't ready, even though his body was able to participate. More recently, it seems as though his brain has "caught up" so to speak, and he more readily connects physically with what his body can do. So we have to go back and start over in some areas and "get that body moving".
Sonny's feet will take some work to loosen his tendons and lengthen the muscles that have tightened over these many months...but it IS possible, so we WILL do it. Massaging his feet and legs doesn't cause any distress to Sonny, though he is ticklish so I have to watch it on the soles of his feet. :) Stretching his achilles tendons IS quite uncomfortable and must be done very slowly. We are still researching everything we can find for information on any helpful techniques for this, as the research appears to be very limited.
Here's some interesting information that is making all of this research challenging:
Apparently, people like Sonny are quite rare...like we didn't all know that many years ago, right? But seriously, here are some stats for you...
1. Of accident survivors like Sonny,(We do not use the word "victim"...Personally I believe in the power of words and this is a very dis-empowering one denoting passivity and weakness. Sonny, "weak and passive"? Um...no. Sonny is a survivor, not a victim.) with the degree pf brain injury he experienced, only 10% come out of their initial coma.
2. Of that 10%, less than 1% become interactive and capable of basic functions such ass breathing without ventilator assistance, chewing and swallowing food, or speech.
3. The majority of those survivors experience only minimal improvement, usually remaining in a somewhat constant state without large degrees of noticeable progress.
So, what does all of this mean? Here's the math:
4. There are 1.5 million reported case of traumatic brain injury in the U.S. each year, with roughly 85,000 resulting in long-term disability (that's almost 6% of all brain injuries!).
5. Of those 85,000, adjusting for major, moderate, and minor degrees of the assumption is that fewer than 1,000 people per year experience a brain injury similar in severity to Sonny's and even wake up.
6. Consequently, there is very little compiled data regarding those survivor's prognosis and recovery patterns, simply because they are such a small population!
That all being said, I'll go back to Sonny's massage and range of motion exercises. (Are you still with me? There's a prize at the end for anyone who reads this entire post!) Being aware of these numbers might seem staggering...and indeed, sometimes we feel like we are groping in the dark with not much direction. So, drawing on human ingenuity, the powers of the universe, prayer, positive thinking, and a fair amount of chocolate, we have persisted in learning all we can and will continue to seek out any and all resources that will help us to participate in Sonny's recovery. I (Lorrie) try to spend as much time with Sonny as I can, which will have to shift a bit when I find work that I actually get paid for. But I'll work out scheduling as necessary. Right now I am able to see him Monday, Wednesday, and Friday, while Mom takes Tuesday and Thursday. Then we both play the weekends by ear, so Sonny sees family and gets his massage work just about every day. Mom is amazing! Without her constant advocacy, I don't know where Sonny would be. She is a powerful source of encouragement for him (and for me!), and a watchful Mama who is definitely not shy about stepping up to the plate and taking a swing when Sonny needs something or his care is not up to par. Nothing misses her attention, and I truly believe this lady deserves some kind of a medal!
Sonny's birthday is coming up the 22nd of September. So if you don't have time to stop in and wish him happy birthday maybe you could send a card. He still likes red and he still likes funny. We are going to try to bring him home for a while the weekend after his birthday. If that works out well then we can have a get-together here with his friends later on.
Now, I promised a prize for anyone who read all the way to the end of this long post, so here it is:
THANK YOU!!!!!!!
As always, we are grateful for every ounce of support and for the warm friendship that has been extended by so many. We would love to see people stopping by to see Sonny more often, as it is such a bright spot for him to see familiar faces. Schedules get very busy, but try to squeeze out a few moments for an old friend...or a new one! He needs all of you! Sending notes or cards works great too, things we can hang up on his wall, photographs, etc. The social contact is really helpful for him...and for all of us, too. Seeing Sonny in his current condition can be difficult. No one really likes to see someone they care about having to struggle with disability or injury. But as someone recently told me, "Lorrie Jean, Sonny is your Mom's son, and she has been seeing him like this for two years now! Surely it is no more difficult for anyone else." Wise words. So, while it is difficult in many ways, I encourage all of you who know Sonny to step up and come see him...he needs you.
All right, time to go. Everyone enjoy your Sunday and the holiday tomorrow, and stay tuned for more news about Sonny's birthday!
Many blessings with gratitude,
Lorrie Jean
• MONDAY, AUGUST 30, 2010 9:58 AM, CDT
Hi everyone, Sonny had a good week; more progress made holding his head up. The extra stretching and massaging that Lorrie is doing is paying off. She's also working on his left foot and actually has his infected toe pretty much healed up. We've cut the toes out of one of each pair of socks so it can continue to heal.
Lorrie also found a physical therapist through a business website that she belongs to. He works only with paralyzed or head injured patients. He met with Lorrie and Sonny on Friday and is interested in working with him. So he is looking into grants and setting up a study in order to pay for the treatment. He was surprised at the things Sonny can do considering the injury that he had. Seems he is outside the norm so that makes his case interesting. Of course we all know that Sonny is outside the norm and that is probably WHY he is still making progress. He is too stubborn to sit down and give up.
His old friend Jimmy came to visit. Thank You Jimmy!!! I hope you continue to stop in. Even if you can't stay more than fifteen minutes, it does him so much good to see old friends. Anything that can make those axons connect again!! Kelly used to come a lot but he has moved and is too far to come very often. I know Sonny misses him. Anyone who knew him before, even if it's been many years, please come and see him. I know it's hard to see him in that chair. But if you haven't seen him that past couple of years then you don't realize how far he has come. He can hear everything you say, and he can see - we're not sure how well, but he recognizes people. He seems to enjoy a lot of things and that has been my main goal. I want him to enjoy what he can and not be sorry that he is still here. I believe we are all here for a purpose and he isn't finished yet. So I try to celebrate what he has, and concentrate on progress and not worry about what he doesn't have.
Take care everyone. Hope to see more names in the North Creek visitors book.
Loretta
• MONDAY, AUGUST 30, 2010 9:58 AM, CDT
Hi everyone, Sonny had a good week; more progress made holding his head up. The extra stretching and massaging that Lorrie is doing is paying off. She's also working on his left foot and actually has his infected toe pretty much healed up. We've cut the toes out of one of each pair of socks so it can continue to heal.
Lorrie also found a physical therapist through a business website that she belongs to. He works only with paralyzed or head injured patients. He met with Lorrie and Sonny on Friday and is interested in working with him. So he is looking into grants and setting up a study in order to pay for the treatment. He was surprised at the things Sonny can do considering the injury that he had. Seems he is outside the norm so that makes his case interesting. Of course we all know that Sonny is outside the norm and that is probably WHY he is still making progress. He is too stubborn to sit down and give up.
His old friend Jimmy came to visit. Thank You Jimmy!!! I hope you continue to stop in. Even if you can't stay more than fifteen minutes, it does him so much good to see old friends. Anything that can make those axons connect again!! Kelly used to come a lot but he has moved and is too far to come very often. I know Sonny misses him. Anyone who knew him before, even if it's been many years, please come and see him. I know it's hard to see him in that chair. But if you haven't seen him that past couple of years then you don't realize how far he has come. He can hear everything you say, and he can see - we're not sure how well, but he recognizes people. He seems to enjoy a lot of things and that has been my main goal. I want him to enjoy what he can and not be sorry that he is still here. I believe we are all here for a purpose and he isn't finished yet. So I try to celebrate what he has, and concentrate on progress and not worry about what he doesn't have.
Take care everyone. Hope to see more names in the North Creek visitors book.
Loretta
• SUNDAY, AUGUST 22, 2010 11:12 PM, CDT
Hi Everyone, Sonny is still tired, recuperating from all his company last week. So he is doing a bit more sleeping. However, he seems to be on an upswing again. He is focusing better and doing better at eating himself. Lorrie is able to see him pretty often right now and she is doing a lot of neck massage and stretching. So he is holding his head better - sometimes. He didn't want to keep it up there today at supper!! He gets hiccups when he swallows with his head all laid over on his shoulder. So we try to keep it up when he is eating.
Lorrie started reading Bill Cosby to him, partly because of the humor and partly because there are short pieces to read to him. He has been holding the book and paying attention. I took my Kindle in and made the print pretty big and was reading from a George Carlin book "Napalm and Silly Putty" Those of you who know George Carlin know that his language is not the mildest. So I have to read quietly as I don't want to offend the elderly residents. But Sonny seemed to really enjoy it and smiled really big at the appropriate times. He was holding it with his left hand and letting me "turn the pages" with the button on the right side. Personally I find George extremely funny and we all need some humor in our lives.
With Lorrie here we are getting in to see him more often but it is easier for each of us. I really appreciate the help! She is younger and stronger so can more easily do the massage and stretching that he needs. And he is so happy to have her there. That doesn't mean that the rest of you are off the hook coming to see him!! He still needs to see his old friends
So take care everyone and try to make it to North Creek.
Loretta
• MONDAY, AUGUST 16, 2010 8:31 PM, CDT
Hi everyone, Well it has been a very hot weekend. North Creek is really warm but they have a lot of fans going and it is cooler inside than outside. Sonny had a good time with all his company. His grandma and great aunt arrived on Thursday so he saw them four days in a row and twice on Saturday. His grandma got all excited and cried because he did know her and gave her big smiles. He did well eating, too, and showed off his new skills weilding a fork and spoon.
My nephew, Drew, sings with an a capella quartet as well as with a larger group. He was on his way to rehersals yesterday so after we had dinner the other members of his quartet met us at North Creek and did an impromptu concert. Several other residents came to the dining room to listen and Sonny was really focused in on them and seemed to enjoy the music. One resident, Miles, used to sing in a group and still has an amazing voice. I had told him that I would bring Drew to sing with him sometime. These generous young men had Miles in front of them in his wheelchair singing as much of the songs as he could remember. He had such a good time!!! Our civilization is still in good shape with young people who can be so caring and compassionate in their busy lives. So thank you Drew, Ian, Jeremy, and Darrin. You brought some fun into the lives of people who don't have much fun.
Sonny seems to be on an upward learning curve again. He is focusing much better and holding his head much better. His sister will be able to spend more regular time with him now and I think that will help. Raj showed both of us how he is stretching Sonny's neck and I was surprised at how far he gets it to move. I hadn 't watched him do this for a while. After it is stretched it seems to be easier for him to hold it up. By the time we left yesterday Sonny was almost asleep he was so tired. Lorrie said he was still tired today. But that is good.
Take care everyone and have a good week. Cooler weather is coming!!!!
Loretta
• MONDAY, AUGUST 9, 2010 12:16 PM, CDT
Hi everyone, Sonny had a really good weekend. Saturday he ate ice cream by himself - with a spoon. It took a good long while and he got too tired to finish. But he did a better job focusing than I have seen him do. And for much longer. It is just hard to stab macaroni casserole with a fork. And it kept falling off the spoon. Then yesterday Lorrie arrived from California. She has come back here to stay and Sonny was so happy to see her!! I thought he might be too interested in her to feed himself but he did a really good job again. He had a sandwich too which made it easier. He used to kind of look off into space while you fed him. He would open his mouth when he felt the spoon and try to do it himself when you told him too. This weekend he reached for the spoon and tried to do it himself without being told. He was really concentrating so I am guessing that it takes some doing for him to think about what to do and then make his hands actually do it. He has been on a plateau for a while now so maybe he is ready to make some progress again!!
This will be a busy week with Mother and Aunt Therese coming in too. It will be interesting to see if he remembers them from last year.
Miles, his roommate, decided to move up the hall. So Sonny has that huge room to himself. I'm going to try to stay organized this time so that when a roommate comes in we aren't spread all over the room.
Have to work. Take care everyong and have a great week.
Loretta
• MONDAY, AUGUST 2, 2010 11:36 AM, CDT
Hi Everyone, Another week is starting!! Sonny got moved to Room 111 last Monday. It is really nice and it took a few days but he as settled in. Since it was set up for three beds it is bigger and there is an extra closet. So his clothes hamper doesn't have to be under the sink - it is in the extra closet. Sonny has the bed by the window that looks out on a rock garden. There is a bird feeder that I have to get some bird seed for and they said I could put up another one. So I think I will get a hummingbird feeder. He also has a better TV with a cable box so he can get the sport stations again. The only thing with it is that you have to use the remote to change the channel. Otherwise you just get snow. Glad I figured that out before I had to ask someone!!
The best thing about this room is the aide named Ricardo! I want to thank him publicly as he goes above and beyond. Sonny has been so clean since he moved over there!! He's been shaved every day and his teeth have been brushed. Ricardo also put all of Sonny's "stuff" back up on the walls in an arrangement that he thought Sonny would like. He even gives Sonny a choice in the morning about which clothes to wear. Since Sonny is color blind this might not be a great thing for the rest of us but it gives him control of one more thing in his life. You can just see Sonny perk up when Ricardo comes in the room.
Sam saw Sonny's old friend Mark yesterday and Mark bought Sonny an I-Pod complete with a charger and head set. Thank You Mark!! Sam will get some music loaded on it and take it in to him. I have to learn how to use it so I can load a book or two. It has a lot of memory, so even one book at a time would be good and it might be easier for him to use.
My mother and aunt are coming up on Thursday August 12th. They will be here a few days to visit and spend some time with Sonny. He seemed to know them last year when they were here so it will be interesting to see what he remembers this time.
Take care everyone and have a great week.
Loretta
• MONDAY, JULY 26, 2010 10:14 AM, CDT
Hi everyone, Well we had a nice hot weekend here Saturday and Sunday. I know that those of you who are back east are having it much worse with the heat and humidity so by comparison we are not bad at all.
The nursing home didn't get too hot yet and Sonny has a new, big fan so it was comfortable in there. He still has "the room mate" so we don't stay in there a lot. I realized on Saturday that Omar is also blind. Still, he doesn't have to be so mean.
Sonny is fine. Since he tends to be hot anyway he really feels the heat. And the aide on Saturday put the one pair of flannel jammie bottoms that I had left there on Sonny. I left them for a chilly, rainy day which we sometimes get in the summer, but not for a hot, sunny day like Saturday! So I took them home and I won't bring them back until fall.
I haven't heard anything new about the speech computer, still waiting to see when that will arrive.
Nothing else is new, just same old, same old. He sure could use some company if anyone can make it in. Mark was there Wednesday evening and Kelly was there on Monday. It really helps - gives his attitude a boost. Just think about how you would feel if the only person you saw on a regular basis , besides the caretakers, was your mother. And remember, he hadn't seen me in a long, long time. From what I have read depression is a big problem with head injured patients. I've been surprised at how well he maintains a good attitude most of the time. It must be incredibly frustrating for him. So even if you can only make ten or fifteen minutes stop in and say hi so he knows he is not forgotten.
Take care everyone,
Loretta
I have an update - I just talked to Paula, the social worker and Diane Clegg, the director of nursing and they are moving Sonny today to room 111. It is a three bed room but they are taking out the middle bed and he can have the window. That will be really nice for him. He will be rooming with Miles who is a sweet old gentleman with Alzheimers. He's pretty quiet, mostly just wanders off. They are going to move all of his belongings so I may have to move some of the wall things later but that is fine.
• MONDAY, JULY 19, 2010 1:28 PM, CDT
Hi everyone, Sonny had a good week and weekend. Omar has been behaving when I've been there but I have heard that he is still doing a lot of yelling. Another man who is about 4 doors up also does a lot of yelling. They should get together and have a chorus!! Except that it is really annoying. Sam and I both went at the same time yesterday and it is worth it just to see the smile when we are both there. He ate well, and I learned that Sam is much tougher on him than I am. I will give up and feed him after a while but she holds firm and tells him if he wants to eat he has to put it in his mouth. She gets him to eat more by himself than any of us.
Sonny also got to talk to Kelly on Saturday. Thank you Kelly. I hope you make it in to see him today while you are in town. Sonny is kind of in a holding pattern right now - still good but not making progress. He seems to go in spurts, and sometimes he makes a lot of progress and then he just sits there for a while. He is talking more and to more people so the aides make sure they always ask him questions like how he is doing and if he is hungry, etc. He seemed to be trying yesterday but it just didn't want to come out. I have no idea why it works sometimes and sometimes doesn't.
He is on a regular diet so you can take food in. Just remember that he is a bit overweight right now so we are watching his calories. Unfortunately he loves chocolate!
Have to get some work done so everyone take care. Thank you all for reading this and please keep in touch.
Loretta
• MONDAY, JULY 12, 2010 11:07 AM, CDT
Hey everyone,
Sorry I haven't written in a while. Boy, the heat last week was something else, wasn't it?? The nursing home gets so-o-o-o-o hot. The meeting with the lady from Dynavox went very well and Lysa is doing the paper work to get a "loaner" from th UW for Sonny. He would be able to keep it for six weeks and hopefully learn how to use it enough that Medicaid would pay for one. It is one very awesome computer but is also very expensive. He would have to be able to push the button and/or use the touch screen so I am working on some of those things with him before he gets the computer. I bought him a new fan last week and it has a remote control with only one button. So I am trying to teach him how to turn it on and off himself. He is working on it and did it once. I also have a talking alphabet board and I'm working with that. Trying to get him used to pushing a button and touching a letter with a purpose. So if any of you get in to see him the alphabet board is on the rolling shelves on the long wall between the beds. I'll take any help I can get!! Just remember that he thinks a low slower than he used to so it requires some patience.
Sonny has a new room mate. Unfortunately Cliff, who was in with Sonny, passed away last week. He was in the hospital at the time so he didn't die in the room. But the new room mate came in really loud and obnoxious. I don't think Sonny has understood just why Cliff is gone and Omar is in his place. He and Cliff got along very well. So Sonny has been rather down and really, really stubborn. Not drinking as much as he should and fighting his meds. Of course I pitched a fit about the noise, which really was awful. They made Omar sign a contract that he would behave or get moved. Since he seems to like it there he has been behaving. No more yelling and screaming at least when I am there.
Have to work now. Take care everyone.
Loretta
• MONDAY, JUNE 28, 2010 12:12 PM, CDT
Hi all,
Sonny had a quiet weekend. I was there on Saturday and Sam went on Sunday. I got his hair cut on Saturday and scrubbed his head. I think we are making progress on the grooming issues that have not been happening unless Sam or I are there to do it. He looked pretty spiffy all week until Saturday and I had a discussion with the person who seems to have difficulty with this area. Bottom line is that this person is a MALE and should be able to teach ME how to shave a person. But we reversed the process and I taught him how to do it. I also told him that he has to shave the left side of Sonny's face as well as the right every time.
We have a meeting on Wednesday morning with the rep from Dynavox. I am excited about that since she may have some things that will help him learn to talk more. Or at least turn his thoughts into speech. The meeting is at 9:00 AM and I've been told that Sonny is perkier in the morning so hopefully he will be wide awake and ready to work with her and Lysa Then we will have an idea about what will work for him.
Nothing else new. I got him some new summer shirts and shorts and I still have to get him a new fan. Then he will be set for summer again. He has made so much progress since we started last summer! Hopefully he can keep on going.
Have a great week and a safe 4th of July.
Loretta
• MONDAY, JUNE 28, 2010 12:12 PM, CDT
Hi all,
Sonny had a quiet weekend. I was there on Saturday and Sam went on Sunday. I got his hair cut on Saturday and scrubbed his head. I think we are making progress on the grooming issues that have not been happening unless Sam or I are there to do it. He looked pretty spiffy all week until Saturday and I had a discussion with the person who seems to have difficulty with this area. Bottom line is that this person is a MALE and should be able to teach ME how to shave a person. But we reversed the process and I taught him how to do it. I also told him that he has to shave the left side of Sonny's face as well as the right every time.
We have a meeting on Wednesday morning with the rep from Dynavox. I am excited about that since she may have some things that will help him learn to talk more. Or at least turn his thoughts into speech. The meeting is at 9:00 AM and I've been told that Sonny is perkier in the morning so hopefully he will be wide awake and ready to work with her and Lysa Then we will have an idea about what will work for him.
Nothing else new. I got him some new summer shirts and shorts and I still have to get him a new fan. Then he will be set for summer again. He has made so much progress since we started last summer! Hopefully he can keep on going.
Have a great week and a safe 4th of July.
Loretta
• MONDAY, JUNE 21, 2010 8:00 AM, PDT
Good morning ,
We had some excitement Wednesday evening when Sonny had three seizures. He was taken to Evergreen and spent a few hours in the emergency department. Sam went and stayed with him which I really appreciate. His dilantin levels were fine so they added Keppra to his meds and now he is in the sleepy/dopey stage as he gets used to the new meds. The first seizure was very small, but the next one was bigger and the third was in the emergency room which is good since they hadn't actually seen him have one before.
On the plus side, I talked to Lysa, the speech therapist, on Saturday. She told me how to set up an evaluation with the local Rep from Dynavox. They have a lot of computer devices that can either take the place of speech or can reinforce the use of speech. Sonny is saying more words at more times and to more different people. The really good part of this is that the words are said clearly and are appropriate. He has actually talked the last few days when he kept falling asleep! And he was so sleepy on Saturday he didn't even want his milkshake!
Everyone take care and have a great week
Loretta
• MONDAY, JUNE 14, 2010 12:02 PM, CDT
Hi everyone, I'm a little late today, sorry. Sonny is still doing fine except that he has an infection in his left big toe. I found it yesterday when I was cutting his nails. It looked like his whole foot was rather swollen too but it's hard to tell because that foot is misshapen from a previous accident. Anyway, I informed the nurse and he put some antibiotic ointment on it and said he will request a podiatrist visit. Mam, the CNA on duty, thought maybe sandals would be better than socks all the time. So if any of you can think of a sandal bendy enough to fit on that crooked foot please let me know. I personally think socks are too hot now that the weather is warmer but they seem to want something on his feet.
Otherwise he seems to be at a plateau again; not making new progress but not losing any ground either. This seems to be his pattern - he learns some new things and then just stays there for a while until he's ready to learn more new things. I can't help wondering sometimes if this is the end of the road for learning but then he takes another step forward. So we will take what we can get as it happens and be thankful. It is nice to have some communication going so we know he is hearing and mostly understanding. Also makes the visits more fun.
Take care everyone
Loretta
• MONDAY, JUNE 7, 2010 10:25 AM, CDT
Hi everyone, Sorry I didn't write last weekend but it was pretty busy. Sonny had a pretty quiet week and weekend this week. Not many more words. He did "talk" to me on the phone Wednesday evening when Sam was there. The only real word was cold but he did a LOT of "jabbering". And he actually was cold at the time so that was right. He seems to do more TRYING on the phone than in person - but then he always did love to talk on the phone. On Saturday Sam and I were both there for supper and then Sam shaved him. When Sonny was a kid he was always smiling and he especially had a grin that usually got him whatever he wanted. You all probably know it - just up the left side of his face and he just twinkles. Well, I saw that grin again on Saturday and it really made my day. Sam just cracked up! We hadn't seen that look in a long, long time. Yesterday however he was "down" again. Just grumpy.
Kelly, if you are reading this - I know he misses you. I've been telling him why you aren't there now but I don't know if he understands. Could you call me on my cell on Tuesday or Thursday at about 6:00 PM and talk to him?? I sure would appreciate it.
Take care everyone. Summer is almost here!!
Loretta
• MONDAY, JUNE 7, 2010 10:25 AM, CDT
Hi everyone, Sorry I didn't write last weekend but it was pretty busy. Sonny had a pretty quiet week and weekend this week. Not many more words. He did "talk" to me on the phone Wednesday evening when Sam was there. The only real word was cold but he did a LOT of "jabbering". And he actually was cold at the time so that was right. He seems to do more TRYING on the phone than in person - but then he always did love to talk on the phone. On Saturday Sam and I were both there for supper and then Sam shaved him. When Sonny was a kid he was always smiling and he especially had a grin that usually got him whatever he wanted. You all probably know it - just up the left side of his face and he just twinkles. Well, I saw that grin again on Saturday and it really made my day. Sam just cracked up! We hadn't seen that look in a long, long time. Yesterday however he was "down" again. Just grumpy.
Kelly, if you are reading this - I know he misses you. I've been telling him why you aren't there now but I don't know if he understands. Could you call me on my cell on Tuesday or Thursday at about 6:00 PM and talk to him?? I sure would appreciate it.
• SUNDAY, MAY 23, 2010 9:46 PM, CDT
Hi everyone, We had an exciting afternoon today! I was there for supper and Sonny managed to pick up most of his sandwich and jojo's by himself. Sam arrived when I was taking him back to his room to wash his hair. I wasn't going to do much because he really needed to get back to bed and get changed.
Mam, a CNA who does really well with Sonny, went by and then came back to ask him how he was doing. Sonny looked at him and said "shower". Then he said it two more times while we stood there with our mouths hanging open. Mam asked if he wanted a shower and Sonny said "yeah" and then again "shower". Mam said he would be back in five minutes to take him to the shower. While we were waiting Sonny looked up at Sam and said "happy". So he successfully asked for a "thing" and then expressed an emotion or feeling. Needless to say Sam and I were just about dancing we were so excited!! I came home and Sam stayed and spent some time with him after his shower. She just called and said that he said a few more things but I am going to let her put the note on here herself. Shed promised me she would do that when she gets home!!
Sam and I won't be in to see Sonny next Saturday. We are going to Oregon to visit my mother who has just moved into an assisted living facility. She is 97 so this is a bit overdue. We are going down on Friday and coming back Sunday. So if anyone can make it in to see Sonny please do.
Take care and have a great week and a safe Memorial day.
Loretta
• MONDAY, MAY 17, 2010 10:31 AM, CDT
Hi Everyone, Another beautiful weekend and Sonny made some more progress. They are working now on getting him to pick up the food on his plate and yesterday he had potato chips - a yummy finger food. After much trial and error, and with some sneaky help from Raj, he finally got it! It almost hurts to watch him trying to figure these things out. But when I put one in his hand he dropped it. I think he wants to do things himself. And once he picked one up then he ate the rest with no problem. Now it will be interesting to see if he remembers and can do it the next time.
We spent some time outside on Saturday and yesterday Sam came too and took him for a walk around the town. He continues to get more alert and interactive. I got several good smiles and some kisses this weekend. And he actually reached out and grabbed my hand. I keep reminding myself that patience is a virtue and while his progress is slow it is also steady.
Take care everyone and have a great week.
Loretta
• MONDAY, MAY 10, 2010 10:29 AM, CDT
Hi everyone, Boy we had some beautiful weather this week-end didn't we?! Sonny and I spent some time outside in the courtyard yesterday. He always did like being outside so it is nice that there is a safe place for him to sit. The first batch of ducklings have gotten too big to stay there so have moved on to the farm. But the bushes and flowers are pretty and it all smells good.
Sam has been going in later in the evening so mostly catches Sonny when he is sleeping. She made it in earlier this week and he really interacted with her, nodded yes to questions or shook his head no. We are making progress!!! Speech would be wonderful but even yes and no are just awesome. Gives us a clue as to what he wants and when.
Sonny hasn't made any really big jumps forward this week but continues to improve slowly. Since he never knew the meaning of the word "slow" this has to be driving him nuts!! And some days it's obvious that he is really cranky. But he stays amazingly good natured most of the time and tries hard to do whatever we are asking of him.
Take care everyone and have a great week
Loretta
• MONDAY, MAY 3, 2010 10:02 AM, CDT
Hi everyone, I had a really busy weekend so I didn't get in there yesterday. I was there on Saturday though and learned that Sonny talked to the speech therapist for the first time. What I heard was that Lysa was working with the yes/no questions and then ask "How was your breakfast". There was no yes/no answer so Sonny said "It was OK" This seems to be happening more often lately that he is making better connections. We can just hope that he keeps on progressing. He ate ALL of the milkshake on Saturday. Maybe because I didn't make him eat all his dinner. They had beef strips and cork screw noodles - that he actually managed to get into his mouth with a fork!! I think the beef was pretty tough because he would chew and chew and chew and then spit it back out.
I took in three pairs of cotton jammie bottoms. Some of his others have gone missing again. The snoopy ones are still there for those of you who hate them!! I just got plain old plaids and checks this time so he can be an adult on some days. And some days he can bring out his inner child with the snoopies!!
have a great week
Loretta
• MONDAY, APRIL 26, 2010 10:07 AM, CDT
Hi everyone,
Not much new to report this week except that he said the f word again loud and clear. The aide told me about it and the interesting thing is that he said it when his room mate fell, not when he had a problem himself. That evening the aide and Sonny were both still laughing about it. Yes, Sonny came very close to laughing out loud! It was so good to see him being happy. Most of the employees there really like him and do their best to make him smile. It is good to know he is well taken care of. And he is smiling and interacting much more.
I took him a milkshake Saturday and some Hershey bars yesterday. There is one still in the top drawer at the sink. I had put all of his stuff in the second drawer but someone labeled it all and switched him to the top drawer. I'm trying to be more organized in there.
If anyone wants to take him something make it chocolate. I know he likes Milky Way bars but he has trouble with the caramel. So Hershey bars or Reece cups are fine. He still has a problem with regular liquids too, but everything else seems to be OK.
Have a great week
Loretta
• MONDAY, APRIL 19, 2010 10:11 AM, CDT
Hi guys, Had some good visits this week. Sonny is interacting more and is getting feisty sometimes. Everything I have read has said that it takes a lot longer to think after any head trauma. And now that there is more interaction you can almost watch the process with him. If he is just sitting there holding the rest of a sandwich and you ask if he is all done it might take five minutes before he flips it back to the tray (or where ever it lands). I have found that this does not necessarily mean that he is done. It may mean that he wants a drink now, or he wants you to feed him.
I got out the sketch pad and the colored pencils on Saturday and he was really interested this time. They are on the bookshelf if any of you want to try. I wrote his name and Mom and drew some flowers. I am terrible at drawing. But he held the pencil and tried. He gets frustrated, but he has to keep trying things. Lysa is really making good progress with the communication issue and has him pointing to pictures as well as the eye gaze thing. However I have found that the aides all seem to use different methods of communicating and he really does seem to keep it straight as to who does what. So he fist bumps with the guy that does that and does thumbs up with the ones who expect that.
I got him shaved and nails cut on Saturday and washed his hair on Sunday. And he brushed his own teeth!
Take care everyone and have a great week! Shanna - thank you for the notes and the picture!
Loretta
• MONDAY, APRIL 12, 2010 10:14 AM, CDT
Hi Everyone,
Last week I said that Sonny would be eating in the big dining room every meal. That wasn't quite right. After May 1 he will be eating every meal there. Until then he will continue to be in
Birch for supper. They are changing the schedule of an RA so that there will be someone there to help him eat. So for now I am going at suppertime on the weekends too. That way he is only in Birch and being fed three times a week. Sonny is doing very well, eating most finger foods by himself and he actually ate his Jello on Thursday by himself. I just held the dish up on his chest and sometimes used the fork to shove some on his spoon. He grabbed the spoon from me and wanted to do it himself. It took a lo-o-o-o-ng time but if he can muster up that much patience then so can I.
Otherwise we had a quiet weekend. I brought some chocolate since I now know he likes it, and a chocolate milkshake yesterday. He really liked that and did the eye gaze thing to answer me. Then I realized the left arm of his chair was missing. I did find it and put it back on so he wouldn't fall out of the chair and I don't know what the problem is. I also got all the crud scrubbed off his head again. When any of you go to see him there is some gold bond cream there. If his face is all scaley please put some of this cream on him.
Take care everyone and have a good week.
Loretta
• MONDAY, APRIL 5, 2010 10:01 AM, CDT
Good morning everyone,
I have more good news to share!! On Saturday I had a chance to talk with Lysa, the speech therapist at North Creek. She has moved Sonny OUT OF THE BIRCH DINING ROOM where everyone is fed and into the big dining room for all his meals. He has an aide working with him and the goal is for Sonny to eat at least 75% of every meal BY HIMSELF! This is so amazing to me I can hardly believe it. She also said that he is doing very well with the "yes/no" and eye gaze, meaning he looks at the yes and no on the arms of his chair. She is putting together some other things to work with him, and asked for pictures of people he might recognize. I took some off his board and labeled them for her and if any of you have pictures you could bring in or send that would be wonderful. Teri - could we have a picture of you? I labeled the one of JD with Sonny. And Shanna - you too!!
I've been telling Sonny for a while that if he can communicate then he can have what he wants instead of what the rest of us think he wants. It seems that he is taking me at my word and is getting an attitude. I've been told that he now will not eat anything green - such as vegetables. He actually threw a green bean and then played with it when it was given back to him. And Saturday he would not eat any of the broccoli. He did eat some green beans yesterday, but left a lot too. This actually makes me very happy to know he has some independent thoughts and is becoming able to let us know what they are.
Sonny scared a new aide half to death when he actually said a word last week. Actually it was a girl's name. These words come slipping out now and then just as nice as you please and very understandable. It seems to be happening more often lately so maybe that is a good sign. Once Sonny learned to talk, at a very young age, he never stopped. So this has to be extremely frustrating for him. And it is hard for the visitors who are used to him talking up a storm to have him be so silent. I know I've never heard him be so quiet since he was born as he's been this past year. It's interesting that when the words come out they are clear and appropriate. So they are still in there.
Have to go to work. Everone have a great day and week.
Loretta
• TUESDAY, MARCH 30, 2010 10:29 AM, CDT
Contratulations Teri!!!! Good news!
We have had an exciting weekend too. I had some surgery done on my left foot on Friday so I'm hobbling around again for a while. I'm back to work today but kind of sore.
Sunday Sonny was taken to Evergreen's ED because of some seizure activity. Tests showed that all was well so he returned about one o'clock, very hungry and tired. Kelly was here at Evergreen when I got down here, and he got lunch for both Sonny and me on the way back to North Creek. Thank you so much Kelly!! Sonny ate and promptly went to sleep so I went home and put my foot up. I don't know if I am going to make it there today - will see how it goes.
Take care everyone
Loretta
• MONDAY, MARCH 22, 2010 10:05 AM, CDT
Hi all,
Well, I found out on Saturday that Sonny REALLY, REALLY likes strawberry milkshakes!! So much so that he actually reached for it and didn't want to give it up to eat some real food. Yesterday he decided he didn't like the ground beef that was on the rice so he spit it out every time I put some in. He ate everything else, incuding the blackberries and strawberries that I took in. But he would not swallow that meat. That actually makes me happy because he is thinking and making a decision of his own. It would be nicer if he would just say "I don't want that" instead of spitting it out and making a mess. But thinking is good, any way he does it.
Cliff, who used to be down the hall, has moved into the bed by the window. So Sonny's "stuff" has been consolidated. Someone put some shelves on wheels on the big wall by his bed and that is much better than the trays that took up so much room. And I've put all his "sink" stuff in the second drawer. Roger never came out from behind the curtain, and never opened the curtain so we had kind of spread out. Cliff keeps the curtain open which is nice for Sonny because now he can see outside. And Sonny knows him from the dining room.
Shanna - thank you for the e-mail. Those pictures are wonderful and the "zonkey" was a great way to start my Monday.
I have to have a small procedure done on Friday so I won't be in to see Sonny on Saturday but I should be able to be there on Sunday.
Take care everyone and have a great week!!
Loretta
• MONDAY, MARCH 15, 2010 10:07 AM, CDT
Hi everyone,
Saturday Sonny was really awake and perky again. I had told him I would bring french fries on Saturday and I did. He seemed to enjoy them. He ate those instead of the potatoes that came with his meal. When I asked if they were good he gave me a "thumbs up". I took some berries in yesterday and he liked those too. I don't want to mess with the calorie count of his meals too much as Margie tries to keep his weight even. But yesterday his meal was listed as regular portion instead of the small portion he has been getting. There was more food than he could eat, really a lot.
Yesterday he was sleeping when I got there and he was sleeping again when I left. I don't know if he just got worn out from being so perky on Saturday or what. I did get a kiss goodbye but that was about it. I did get another little video of him eating his french fries on Saturday. If anyone wants to see it let me know - I can send it from my phone to an e-mail address or a smart phone.
Take care all. Sonny is really doing well. If you haven't been there in a while, please come. You will be surprised!!
Loretta
• MONDAY, MARCH 15, 2010 10:07 AM, CDT
Hi everyone,
Saturday Sonny was really awake and perky again. I had told him I would bring french fries on Saturday and I did. He seemed to enjoy them. He ate those instead of the potatoes that came with his meal. When I asked if they were good he gave me a "thumbs up". I took some berries in yesterday and he liked those too. I don't want to mess with the calorie count of his meals too much as Margie tries to keep his weight even. But yesterday his meal was listed as regular portion instead of the small portion he has been getting. There was more food than he could eat, really a lot.
Yesterday he was sleeping when I got there and he was sleeping again when I left. I don't know if he just got worn out from being so perky on Saturday or what. I did get a kiss goodbye but that was about it. I did get another little video of him eating his french fries on Saturday. If anyone wants to see it let me know - I can send it from my phone to an e-mail address or a smart phone.
Take care all. Sonny is really doing well. If you haven't been there in a while, please come. You will be surprised!!
Loretta
• MONDAY, MARCH 8, 2010 10:13 AM, CST
Hi everyone, Not much new this week. Sonny's Dilantin levels went down again so they had to raise his dosage and go back to twice a day. So Saturday and Sunday I had to keep waking him up to eat. He wasn't about to feed himself and didn't even get it all down with me feeding him. As we know this will level out as his system gets used to the new dosage.
I will write more when I can.
Loretta
• WEDNESDAY, MARCH 3, 2010 10:07 AM, CST
Hi again,
We have a quick mid-week update. Sonny went to the Evergreen Hospital emergency room late Monday night. His nurse said he was having some small "seizure like" activity in his legs that was not normal for him. So his doctor recommended a trip to the ED to get checked. His Dilantin was a little low so they are raising his night time dose and otherwise all is fine.
I was also surprised last night to find that Sonny has actually graduated to a REGULAR DIET!!!!! He still had the thickened liquids last night at supper but Raj told me that Lysa has also upgraded that to regular liquids. It doesn't seem like that long ago that I was fighting to get him pudding and applesauce!!!
He can hold and eat sandwiches by himself. HOWEVER, he tends to take bites that are too big to handle easily. So if any of you (besides Kelly who has been feeding him forever) bring him food please be careful that he chews it all. And with liquids - he needs to pause and take a breath now and then. Lysa has used the word "pause" so I have too and he listens to that.
Take care everyone
Loretta
• SUNDAY, FEBRUARY 28, 2010 6:39 PM, CST
Hi everyone,
I had some good visits and saw some real progress this weekend. Yesterday Angela and Tony were there. Angela - it was good to see you again! I feel like we are connected through the web even when I don't see you but it's nice to be able to visit now and then. Tony - it was good to meet you. I hope you continue to come and see Sonny whenever you can. He can use all the visitors he can get. And reminders of life before the accident. All of you who know him know a piece if his past and reminding him may help reconnect some of those axons in his brain.
Sonny did a great job of eating today. He scooped mac & cheese by himself with a spoon and used the side of the little bowl to keep it on the spoon and into his mouth. He ate a half banana by himself and an apple turnover dessert by himself. Held them and took reasonable bites!! I think he was getting full so was less apt to stuff his mouth. But still - it was progress.
I also had a chance to talk to Lysa, his speech therapist. She said she is putting sticks with signs YES and NO in his hands. Right hand is yes and left hand is no. She started with really simple questions like are you sitting and am I standing. And he answers yes or no. She has progressed to picture cards. So she may show him picture of a dog and ask if it is a dog. Or a picture of a bear and ask if it is a cat. So on these he has to think a bit. He is actually doing it and she said he is right about 75% of the time which she considers good. I'm sure he knows that he is making progress since every now and then I see this little smile like he is thinking "Ha!! I can do this" I reminded him today that the more he learns and can do himself the more control he will have over his life. He is as much into control as I am and I cannot imagine having no say over anything.
Kelly has told me that he has been bring a variety of food - besides the hamburgers and fries! Kelly - you are really a gem and Sonny is so lucky to have you as a friend. And I am lucky we have you.
Teri and JD - I am sorry for your loss. Sure hope all is well.
Take care everyone and please sign in here and let me know you are all OK.
Loretta
• MONDAY, FEBRUARY 22, 2010 10:21 AM, CST
Well vacation is over and I am back to work. Since I was still off on Friday I was able to meet and work with Todd, the occupational therapist at lunch. And with Lysa. I am so impressed with the progress Sonny has made!! He is learning to scoop and/or stab his food and get it to his mouth. He is holding the glass and straw himself, which is so awesome because it gives him the control to stop and start. Sonny has had so little control over anything done for and to him that this really has to feel good.
My friend Darlene from work went in to see him a couple of times while I was gone. I took her in before I left and introduced her to Sonny. She went in on the weekend and then on Wednesday. She told him on Sunday that she was "coming to see him" while I was gone. On Wednesday she said he mouthed the words "come see me" and smiled. Darlene was really excited!!
Sonny had gotten pretty scruffy looking so on Saturday I cut and washed his hair, shaved him, and cut his nails. So he looks cute again.
Take care everyone
Loretta
• MONDAY, FEBRUARY 8, 2010 3:12 PM, CST
Hi again,
Well, on Thursday morning I am off to sunny Mexico!! So I won't be writing next week. But I can check on line for any messages from you guys. Denny - sorry I missed you Sunday. Thank you for going.
Sonny got the new head rest for his wheelchair and it is really neat. It not only holds his head up, it holds it back too so it is really straight. It is so much easier to feed him!! We will have to watch the skin on his forehead. It was already getting red from resting his forehead on it. And Daniel said that if he pushes against it then it won't work because it isn't stiff enough to withstand much pressure. It has been more comfortable for him to let his head flop so until it gets comfortable to have it upright we have to push him.
On the other hand, he really is enjoying his meals!! Saturday he had a chocolate cupcake and Sunday he had a real dinner roll. He gets real excited about some of these things and it is hard to slow him down and keep the bites small. And make sure he chews it up well. So this is good motivation - he needs to keep his head up to eat!!
We sit with a lady named Maizrie on the weekends in the dining room. She has really become a friend. She had a stroke and she can't talk either, but she is a neat person with a great sense of humor. Yesterday she was right across the table from Sonny and was waving her hand to the music playing. (The old tunes) Sonny watched her for a while and then copied her movements so they were both waving in time to the music. She was so excited because she got him to do something. And I was excited for the same reason - he actually copied her. Small thing but so big to us.
Shanna - to answer your question - yes you can take him food now. Just bear in mind we don't want him to gain too much weight. Kelly said he really loves french fries and can eat them himself. He also likes breads and desserts. He can eat bread by himself but you have to be careful that he doesn't put too much in his mouth at one time.
So all of you take care. And thanks in advance to those of you who can visit. And special thanks to Kelly who is the contact person for the week.
Loretta
• SUNDAY, JANUARY 31, 2010 10:21 PM, CST
Hi everyone,
Teri thank you so much for the note. Apparently Sonny is trying hard to get words out sometimes. He hasn't been doing it for me but Raj works with him a lot and he told me "he's almost ready". He sure is having fun eating these days. The only thing he doesn't get like everyone else is salad. Today he had lasagna, peas, blueberry pie, and real garlic bread. Garlic bread is one thing that is really weird pureed. It tastes like garlic bread but it is wrong. We had sandwiches a couple of nights last week and today he seemed to be getting the idea that he has to bite off a piece of bread. So that was easier. He still tries to get too much in there before he bites but we are working on that. I'm trying to get him to eat things like that himself.
Kelly, Kim told me you were there the other day. I knew it anyway - the milkshake container was still on the sink. She thinks you are just wonderful - she said Sonny smiled for a long time after you left. Her words - "That guy with the hair that comes is so nice"!!
He was pretty scruffy today so I shaved him and washed his hair. He is really holding on to me lately when I'm there. Sometimes he holds my hand with both of his. So I am giving him extra patting and hugging.
Take care all and have a great week.
Loretta
• MONDAY, JANUARY 25, 2010 10:53 AM, CST
Hi everyone!
Sonny has graduated from a Dysphagia Mechanical diet to a Mechanical Soft diet. This is a really big jump!! Yesterday he had mixed vegetables - corn, some green beans, and some sliced carrots. It really made me nervous feeding him whole kernals of corn and I probably sounded like a cheerleader - chew Sonny, chew Sonny. I just kept thinking how easily they would slide down the wrong way. But he did chew and seemed to enjoy it. He actually looked over the food on his tray yesterday. He also was able to get more liquid out of the little glasses. He used his right hand and pushed the glass up himself and tilted his head.
He talked to his sister on the phone - or rather she talked to him. When they were done talking I pulled up the picture of her on my phone and he looked at it and gave me a really big smile. It's nice to have him more interactive again.
This has to be short today. Everyone have a great day.
Loretta
• SUNDAY, JANUARY 17, 2010 9:39 PM, CST
Hi everyone,
Saw Sonny yesterday and today and he is doing well. Shanna was there yesterday morning and I'm sure he appreciated that. She brought a red and black blanket that she made and it is really red!! Since that is his favorite color these days he has to be happy with that. I put his name on it fairly large so it will stay where it belongs.
Every now and then he really surprises me with something he does that is so normal that it is out of context to the situation. Today I was washing his hair and he was already back in bed because they are being very careful to get him changed these days before he soaks the pajamas. So his hair was wet and soapy and I was at the sink rinsing washcloths. I looked in the mirror and he made eye contact in the mirror, picked up his right hand, and gave me the "come here" signal with his forefinger. I cracked up laughing because he hasn't done that before and it looked so darn funny with him in bed with a soapy head. Who says he can't communicate when he wants to!! Norma, a CNA who works with him a lot, said that last week she was feeding him lunch and everything she put in his mouth he spit back out. Finally she went and got him something else to eat and he was fine. He ate it all. He is fortunate to have a caregiver who decided he wasn't in the mood for chicken and got him something else. There again, communication however crude.
I'm sure I noted that a nurse named Annie gave Sonny CPR the morning of his seizures. She has been there since before Sonny arrived and has consistantly taken good care of him. She has worked nights all this time so I have never met her although I have talked to her on the phone. She has been promoted to charge nurse and is working days now so I finally got to meet her today. Such a neat lady. And I just wish that all of you could have seen Sonny's smile while she was in there talking to us. I was standing there with my mouth hanging open. I swear those eyes even twinkled!! Maybe I should have hauled out my phone and taken a picture but I just didn't want to interrupt the moment with the flash.
I am going on vacation from February 11th through the 18th. I'm letting everyone know ahead of time so that as many as can will come in that week to see him while I am gone. Sam will also be gone that week and my sister will be with me. I know Kelly will go as much as possible . Maybe some others that would go before or after that week will go then. At least on the weekend because I'm usually there a lot on weekends and he will miss that.
Thank you much and all of you have a great week.
Loretta
• MONDAY, JANUARY 11, 2010 1:57 PM, CST
Hi everyone, Sonny is back to making improvements. His Dilantin levels were way too high last Monday. Apparently this stuff builds up in your system so they have to check fairly often. Anyway, his levels were almost double the norm so the doctor discontinued for a couple of days and then reduced his dosage from 300 mg to 200 mg. Saturday and yesterday he was much more alert and awake than he has been since the seizures. The nurse yesterday said he really responded to her to the point that she was excited. His neck was also much better. Daniel, the PT, told me that he is using the electric ultrasound to try to break up the contractures and he has ordered hardware for the wheelchair that will hold his head in place better than the collar. He is still working on those feet and legs and feels that he is making progress. He did remind me that wherever there are contractures there is also pain and since Sonny cannot talk we don't know what level his pain is. Several of the staff have told me lately that they think Sonny has been trying hard to talk, or to tell them something.
The nurse also told me that Sonny has a sore on his bottom. I told her that I take his clothes home to launder & in my opinion he is not changed often enough. His jammy bottoms are consistently wet and very smelly so they need to do better at keeping him dry. She agreed.
I saw he had some company over the weekend. Thank you for coming and thank you for signing in.
Loretta
• SUNDAY, JANUARY 3, 2010 9:43 PM, CST
Hi everyone,
I saw Sonny yesterday and today and he is still showing some improvement. He was sick on Wednesday and threw up and then didn't want supper when I was there. But he is over whatever that was, probably a bout of stomach flu. He ate well both days and it was interesting to be feeding him barbecued beef that was chopped up instead of pureed. He knows when something in his mouth needs to be chewed and he really goes at it. When I broke up graham crackers in his pudding he was actually bouncing in the chair. Today he had applesauce for dessert but I put graham crackers in that too.
I've thought many times over the past week about the year we have been through. Last new years Sonny was confined to bed and was allowed nothing by mouth. All of his nutrition was through the PEG tube in his stomach and he laid there in the bed. We got excited when he looked around and when he spit out the toothpaste!! Now he is up most of the day every day. His PEG tube has been removed and he eats all his meals in the dining room. He also spends time in the gym with physical therapy and Lysa is doing trials on more and more textured foods. Right now he is on "dysphasia mechanical" and hopefully will soon move to "soft mechanical" I'm not sure of all the differences but he is moving up. She also will be doing some cognitive tests to see what we can do to push him into some type of communication. Daniel is still working on his feet and legs and I think they all work on his neck. He was really holding his head up well today. They also take him to the dining room for all the activities that they have there. Even if he cannot participate he can see the other people and watch what is going on. As a result when I take him to that dining room to eat I can tell that he knows the other people there. And they have gotten to know him and a lot more of them talk to him all the time. So he is getting more personal stimulation and that is good.
Also, in the past year I have met a lot of Sonny's friends - most of you read this journal regurlarly. I am blessed to have you for friends and for the support that you have given me. Thank you all.
Loretta
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