"Strength does not come from physical capacity. It comes from an indomitable will." ~Mahatma Gandhi

Journal 2009



SUNDAY, DECEMBER 20, 2009 10:22 PM, PST

I know I never write here two days in a row (sometimes not even every week) but this has been an unusual weekend.  Today I found Sonny sound asleep again and was told that he had just had a session with the physical therapist, Daniel, and that was why he was so tired.  So I found Daniel - I had seen him there recently on weekends - and introduced myself.  And learned that he has been working with Sonny for about a week and a half.  He has put a different splint on Sonny's right foot and is using electrical stimulation on the left lower leg to try to loosen it up.  That is his really curved foot.  Daniel said he can pull it straight but he cannot push it up; the ankle is really locked.  So he is looking for a different splint for that foot too.  He also told me that it has taken a while to get good PT going on Sonny because it is a difficult case and it needed someone big enough and strong enough and even he goes home sore from working on him.  He said his aim is to get him standing up in the tilt frame!!!!  In August I asked if they had a tilt table and they said they have a tilt frame that works the same.  He can lay down in it and then they tilt it up to gradually put weight on his feet and legs.  It would help him get stronger and get some use in his legs.  So that is my good news today.

On the other hand, he was so tired that when I put the spoon in his hand  he laid it in his lap and fell asleep again.  So now I know why he as been so darn tired in the evenings when I get there.  Between the physical therapist working his legs and the speech therapist making him eat himself he is exhausted at the end of the day when I get there.  But that is OK!!  I can feed him and I am really excited about the progress again.  Since he was in therapy this morning he didn't get shaved so I did that.  Hey guys - I am getting good with that razor!!  Also washed his hair and clipped his nails.  I hope the day comes when I can tell him he owes me big time!
Take care everyone
Loretta

SUNDAY, DECEMBER 20, 2009 2:01 AM, CST

Hi everyone,  I was at North Creek today and got some very good news!!  Sonny's new speech therapist, Lysa, was there at lunch.  I was surprised to see ham on Sonny's plate that was not pureed but looked like it went through a small meat grinder.  It definitely had to be chewed!!  Lindsy said she has been working with Sonny every day at lunch for the past couple of weeks and has given him different textures to eat.  She has advanced his menu now to have his main dish ground up instead of pureed!!! Boy am I excited about that!!  And you can bet that Sonny is too.  He just chews and chews and chews.  She said he still has a problem with thinner liquids but is managing the nectar thickened much better than he was for a while.  And on top of that she said he has been feeding himself again!  He can only make it about half way through the meal but he is doing it.  And with me he sits there with his hands in his lap and waits for me to feed him!!!  Ha!  Will he be surprised tomorrow when Mom gives him his spoon!  Lindsy was really happy with the sippy cups I took in.  It makes the liquids much easier.
Sam and I went to Seattle tonight to see White Christmas at the Fifth Avenue Theater so I just got home a little while ago and wanted to get this note done right away.  I have clothes in the washer so won't get to bed for a bit.
My sister Tracy and I will be with Sonny on Christmas for a while.  If I don't write again before then I hope you all have a very happy and safe Christmas and New Year.  I'll be on vacation the week after Christmas so will spend more time with Sonny.  Thank  you all for your love and prayers and visits.  And thank you to Angela and the PTO people for all the lovely cards and letters.  I read them to Sonny and he holds the cards and really looks at them.  Especially the red ones!!  And he got many red ones this year.  We are blessed that so many people care.
Loretta

MONDAY, DECEMBER 7, 2009 10:07 AM, CST

Hi all,  Sonny has made some progress again.  He's not back to where he was before the seizure but he is getting there.  Most of the time he stays awake through the meal, and he has been grabbing the cup to do some of his drinking himself.  Raj said Sonny tried to talk to him on Saturday and seems to be more alert again.  So he must be adjusting to the Dilantin.  On the down side - his gums are bleeding already, a side effect of Dilantin.
I haven't gotten the Christmas decorations up yet, hope to do that this week.  If anyone wants to bring something in please feel free to do so.  Big thank you's to the people sending Christmas cards!!  We do appreciate it.
Loretta

MONDAY, NOVEMBER 23, 2009 10:13 AM, CST

Hi everyone,  Sonny had a good weekend.  On Saturday Angela came and JD and his wife Teri came over.  JD  - thank you so much for the CD.  Sonny is still getting used to the medicine and is pretty spacey so it will mean even more to him when he "wakes up" again.  Sunday I had to keep waking him up to eat and by the time I shaved him and washed his hair he was sound asleep again.  I will be glad when this phase is over!
Angela - it was really good to see you again and thanks for cleaning up Sonny's space.  I don't seem to ever get that done.  And I need to bring in Christmas decorations again.
Shanna - congratulations on the new job!!  That is exciting!  I'm only sorry that it is so far away.  I'm looking forward to seeing you when you are in town.
Everyone have a wonderful and safe Thanksgiving weekend.
Loretta

FRIDAY, NOVEMBER 20, 2009 2:11 PM, CST

Sonny made a little bit of progress this week.  Tuesday evening he didn't stay awake long enough to eat all of his supper.  But last night he did stay awake.  I understand from the nurses in both places that it takes the body a while to get used to Dilantin which he is getting to prevent more seizures.  I haven't seen all the final reports from Harborview yet, but I will.  I was glad to see your message Teri and that you are still coming over tomorrow.  I'm anxious to meet you too.  Just bear in mind that Sonny is in slow motion right now - it takes a long time to do anything.  The dilantin also slows their thinking and Sonny's thinking hasn't gotten up to normal speed yet anyway.  So it feels like we have gone backwards but since the medical people tell me this is temporary I am holding on to that.
See you all tomorrow
Loretta

TUESDAY, NOVEMBER 17, 2009 10:18 AM, CST

Good news for Sonny today!!  He ate all three meals yesterday with no problems at all and he is being discharged this morning back to North Creek.  The tube was removed from his nose yesterday so he got his hands freed up too.  I can't be off work today so Kelly is meeting him at the nursing home and will spend some time with him.  I will go after work.
Thank you all for your prayers and good thoughts.
Loretta

MONDAY, NOVEMBER 16, 2009 12:30 PM, CST

Hi everyone,  This has been a very busy week-end.  Sonny had a seizure Friday morning that caused him to stop breathing.  The CNA who found him and his nurse, Annie, can be credited with quick thinking and quick acting.  From what I understand Annie breathed for him until the medics got there.  They intubated him and took him to Harborview because all the records of his TBI are there.  He had another seizure in the ED so we can be sure that this is what happened.  Because of the intubation he was admitted to Neuro ICU.  The tube was removed Friday afternoon and he could be moved to the floor but as of last night there still weren't any empty beds out on the floors.

Between the effects of the seizure and the medications that have him pretty dopey he hasn't been able to swallow efficiently enough to eat.  So there is a tube in his nose, which he hates.  I'm really hoping that he is able to swallow in the next day or so because otherwise he will have to get another PEG tube put in.  He cannot go back to North Creek with a nasal tube.  I've done a little bit of reading about PTE - post traumatic epilepsy and it seems to be pretty common so there are protocols for treatment.  The downside is that most of these drugs cause sleepiness and "impaired thinking".  I don't think that is good in a person who is already impaired.  So we will have to wait and see.
Those of you who are in Seattle - feel free to stop in and visit.  He is still much more alert than he was when he was there before.  I have to be at work, but Sam will be there today for a while and Kelly will be there tomorrow.
Take care
Loretta

MONDAY, NOVEMBER 9, 2009 1:48 PM, CST

Hi everyone,
Sonny had a good week, looked pretty perky when I was there.  In fact one evening it was hard to keep him in the chair.  I think he wants to go for a walk.  We saw Shaye, the speech therapist, Thursday evening and she did a quick check of his swallowing.  She found a LOT of improvement.  She also put some crackers in chunks in his supper and saw that he does chew it all and is able to swallow it.  So she is going to do a full evaluation and start some "recreational" chunky food on his trays.  He is still getting his six glasses of liquid, and I actually got it all down him yesterday.  Took the juice back to the room in a sippy cup while we watched the game.
His skin seems to be doing a lot better.  I put that Jojoba oil on his head on Saturday and on his face.  Washed his hair yesterday and there wasn't as much dead skin, and his face looked much better.  I managed to shave him Saturday and did a better job, but still not good.  But I didn't cut his throat either!!
Kelly - you were there really early on Thursday morning!  Thank you!
Everyone take care, and please visit when you can.
Loretta

MONDAY, NOVEMBER 2, 2009 11:03 AM, CST

Sonny was pretty perky this weekend.  I had a talk with the dietician on Thursday night because he was not getting all the juice that she had ordered.  Also informed her that the tube is out - and by the way his tummy is healing nicely.  So I was surprised Saturday to get his tray and it had two milks, two juice, and two water!  The sippy cups in his room hold almost two glasses so I put the milk in one and the juice in another and gave him the water from the glasses.  I took the juice back to the room because it is really hard to get him to drink all that at one time.  Someone also goofed and put sliced peaches and a piece of cake on his tray for dessert.  So I cut up the peaches and he chewed up a storm before he swallowed.  Seemed to enjoy that.  I also cut up the cake and added some of his milk so it would be soft and he chewed that too.
So for anyone who visits at mealtimes - the liquids are there, please make him drink.  I also left a new 5 blade razor in the top drawer at the sink and there is shaving gel there.  I  shaved him yesterday, did a better job this time, and washed his hair.
Rog is doing his range of motion every day and stretching his neck, also working on his foot.  I have noticed that he is holding his head much better and picking it up straight when you tell him to.  Makes it much easier to give him liquids from a glass.
Take care everyone
Loretta

MONDAY, OCTOBER 26, 2009 5:49 PM, CDT

Sonny had a good weekend.  JD and Jules arrived in time for lunch on Saturday and had a nice visit.  I really enjoyed meeting you guys  and I know Sonny's life has been and will be richer for having you in it.  Tracy also came up from Olympia so we made good use of the family room for a while.
Today Sonny went back to Harborview, with Sam this time, and had that darned stomach tube removed.  Sam said he wasn't very happy at the time - it looked like it hurt.  But he'll be glad to have it gone.  Now we all have to be sure that he gets enough fluids in him since it isn't there to use in a pinch.  Anyone who visits can ask for some thickened juice or water and the aide will get it for you.  There are two sippy cups on his sink and they work well as long as the liquid is nectar thick.  One aide also told me that we can ask for the thickener to put in coke or root beer, both of which he loves.
Thank you all who come to visit.  He improves more with more visitors and attention.
Loretta

WEDNESDAY, OCTOBER 21, 2009 10:56 AM, CDT

We finally have an actual appointment to get that blasted feeding tube taken out.  It turns out that the doctor who put it in has to take it out.  So we couldn't get it done at Evergreen, and an entire day at Harborview two weeks ago also did not resolve the issue.  So now we have an appointment on Monday and Sam will go with him.
Sonny has been rather grumpy lately, at least when I've been there.  Last night he just stared and stared a me.  I sure wish we could get some regular communication going.  I've been working with him nodding his head for yes and shaking it for no.  He does that sometimes but not consistently.  It is really frustrating to not know what he wants or needs.  It must be really, really frustrating for him.  His nickname when he was very young was "Motormouth" because he never shut up.  And he never stopped moving.  To have him be so quiet and so still is downright weird.
I am looking forward to meeting JD and Jules on Saturday.  I will be there for lunch and will stay a while.
Take care everyone
Loretta

WEDNESDAY, SEPTEMBER 30, 2009 10:14 AM, CDT

Sonny had a good weekend, still making small but regular improvements.  The doctor has ordered that his feeding tube be removed so North Creek is scheduling this at Evergreen.  Will probably be in the next week or so.  He will be so happy to have that out of there!!!!!!  And it is a huge step forward.  His chewing and swallowing have continued to improve and he doesn't choke as much as he used to.  I cut his hair last night while he glared at me in the mirror - he still hates to have his hair cut.  And he does have beautiful hair.  But he also still has cradle cap on his head so it has to be washed really often.  If any of you have tried to wash someone's hair with a washcloth you will understand that the longer the hair the longer it takes to wash, rinse and dry.  I have promised him that whenever the cradle cap goes away or he can wash it himself then he can grow it down to his waist if he wants to.  In the meantime-------
Take care everyone
Loretta

MONDAY, SEPTEMBER 21, 2009 12:22 PM, CDT

Hi all,  We had a nice little birthday celebration yesterday for Sonny.  My brother in law and niece and nephew were up from Olympia. Sonny's sister, Lorrie and her friend Armando were also there.  So we had cupcakes, a candle, and sang happy birthday.  Sonny then ate ice cream instead of cake.  I couldn't help remembering last year when we did this at Harborview and couldn't determine if he even knew we were there!  Such a huge improvement!
He was actually pretty perky yesterday and got some really soft, nice jammie bottoms and t-shirts from Olympia.  Kelly and Jess have also gotten him some new jammie bottoms as a lot of his old ones are now too small.  He has gained some weight since off the feeding tube and we are now trying to stablize his weight.  So no more extra desserts are on the menu - except for birthdays.
Take care everyone.  I should be back to a regular schedule now.  Angela - please let me know if you are alright??
Loretta

MONDAY, SEPTEMBER 14, 2009 2:24 PM, CDT

Sorry for the long gap in entries.  I had to go to the hospital my own self and was down for about three weeks.  But back on track now!  Sonny's sister Lorrie arrived in town on Friday so she is able to spend some time with Sonny.  He is kind of ticked off at me because of the time I missed being in there, but he is smiling at everyone else!!  We're still working on him feeding himself.  He back-slid a bit with all the company a few weeks ago, but he seems to be back up to speed.  His swallowing has improved in that he knows if food hasn't gone down right and he coughs until it is cleared.  This is a big improvement as before we didn't even know if he was having a problem.
I talked to Kelly this morning and he is asking permission to take Sonny for a ride in his Camarro.  It has a T top so Sonny could be hoisted in and out.  If anyone has any information about a used, or inexpensive wheelchair lift that I could put in my van, please let me know.  I would  like to be able to take Sonny home for the holidays, or even now and then to get him out of there for a while.
Everyone take care.  In fact - do a better job  than I did of taking care!!
Loretta

TUESDAY, AUGUST 25, 2009 10:10 AM, CDT

Hi all, Well, all the relatives have come and gone.  Sonny handled it all very well but he was really tired Saturday and Sunday.  He had seen his grandmother and aunt Jeannie shortly before the accident and he did seem to know them.  I didn't push eating himself while they were here and I also didn't on Saturday and Sunday since he was so tired.  So we didn't progress this week but having the company was a big accomplishment.  This is a short note today, just moved our offices and have a lot of arranging to do.
Loretta

MONDAY, AUGUST 17, 2009 11:27 AM, CDT

We finally got some new pictures on the photo page.  Thank you Sam!!  I had a good meeting with Janis, the occupational therapist, on Friday and she will be starting to work with Sonny this week.  I got some help and instruction on his eating, so am now "helping" him get the food scooped on to the spoon and into his mouth himself.  We made it through the whole lunch yesterday!!  We are also back to needing a nap after he eats as he really gets tired.
Sonny will be having lots of company the end of the week.  His great aunt will be here from Pennsylvania and his grandmother and aunt are coming up from Oregon.  So big party at the nursing home!!!
Shanna, I received the neck band.  Thank You!!  It is supposed to be 88 degrees on Wednesday so I'm sure Sonny will appreciate it.
A couple of people have the dates wrong in the guest book.   I'm pretty sure today is August 17th!
Everyone take care
Loretta

MONDAY, AUGUST 10, 2009 10:10 AM, CDT

Sonny had a busy week last week!!  Since I had a couple of days off I was able to spend more time at North Creek and do some shopping.  His accomplishments for the past four days is as follows:  He listened to an audio book - the longest period was 40 minutes, which for him is a long time!!  He "chose" Guns n Roses as the CD he wanted to listen to, only lasted 15 minutes with that.  The head set works well for him as NC is a noisy place and the head set filters out the other noise.  I got some silverware with fat handles to hold on to and he managed to get four spoonfuls to his mouth without spilling it.  Not ice cream but regular food.  AND he drank by himself with a sippy cup.  Finding a cup with a hole big enough for the thickened milk and water has been a challange, but they are much easier for him to hold on to.  Yesterday we took a day off; he was really tired and had been up most of the day by the time I got there for supper.  He was perked up a bit by the time I left, was watching TV instead of staring into space.
It was really fun to watch him on Friday while I was pulling things out of the bag and showing him.  He just lit up with the music when I turned it on and was almost rocking out of the wheel chair!!
I want to publically thank Michaele for all the help she has given us.  She steers me to the right people for whatever needs to be done.  Also Shaye, the speech therapist and Margie, the dietician have been extremely helpful and accommodating.
Take care all,  Loretta

MONDAY, AUGUST 3, 2009 10:03 AM, CDT

Hi again,  Sonny had a good weekend in spite of the heat.  While I was giving him lunch on Saturday Norma, an aide that works with him a lot, asked if I knew he had fed himself.  I was pretty disbelieving so she got some ice cream and after feeding him some she put some on a spoon, put the spoon in his right hand, and told him to put it in his mouth.  And he did!! He has a definite tremor in that right hand and the ice cream was rather soft so it was pretty messy but he did it two more times for me.  Later on he spoke again, said the "f" word loud and clear!  Twice!!  I told him I don't care what he says as long as he says it.
I met with the dietician on Thursday and Sonny's tube feeding has been discontinued!!!  We have to keep the tube for a while to put water into him but no more liquid food.  He had gained twenty pounds and has been eating well.  I noticed on Saturday that eating doesn't seem to be just for fun now,  he was hungry!  The portion sizes have been changed - more protein and less carbs.
Yesterday Norma put a glass in his hand to show me that he can move that also to his mouth.  But since it was empty he didn't budge.  She laughed and said how stubborn he is.  Of course, we all know that!!
Take care everyone
Loretta

MONDAY, JULY 27, 2009 10:02 AM, CDT

Hello everyone,  I know we are all having issues with the heat but I have to tell you that the nursing home is really, really hot!  I feel so bad, not just for the patients but also for the people who work there.  At least there was a breeze in the courtyard both Saturday and yesterday.  We can hope that keeps up for the people who can get out there.  Because of the heat everyone, including Sonny, was pretty slow and tired.  Lorrie - thank you for your tip about the tea tree oil mixed with almond oil for his cradle cap. It really works!!  I rubbed some into his scalp on Saturday and then washed his hair yesterday and I couldn't believe how much of that stuff came off and out.  Tomorrow evening I'll catch the spots I missed.
I talked to a very nice person at Northwest Hospital Inpatient Rehab last week and it doesn't look like that is going to be an option right now.  The program is very expensive and short term and the DSHS regulations are pretty strict and rather archaic.  I did get the website and phone number for the brain injury association in this state so I have more research to do.  I just wish I had more time to do it!!
Sonny is eating all three meals a day now all the time.  I've had other patients and some of the staff there tell me that it really seems like he is improving and getting stronger.  Just being up in the chair more hours of the day should help him get stronger.  And the social aspect of the dining room with the other patients has perked him up.  Please - any of you who are local and can get there - stop in and see him.  It does more good than you can imagine.
Everyone take care and stay cool
Loretta

MONDAY, JULY 20, 2009 12:14 PM, CDT

Hi all,  Sonny did have a good weekend again.  I was off on Friday so I fed him lunch and requested supper in the dining room.  I went back and fed him supper which went well at the time.  However, when they re-started the feeding tube his stomach over loaded and backed up.  So my understanding is that the Dietition, Shaye and Michelle will be meeting tomorrow to review.  He is gaining weight too, so all has to be evaluated.  But I got some really big smiles from him with the extra food.  He was pretty tired on Saturday but was awake and alert yesterday.  Sam and I cut his hair again yesterday.  It is just too hard to take care of with the "cradle cap" stuff on his scalp.  It has to be washed really often to control it.
Those of you who haven't seen him in a while would be surprised, I think.  He doesn't do all the random movements that he did for a while, especially with his left arm.  He actually sits very still sometimes, and holds eye contact for a long time.  He recognizes most of the people at North Creek, both the patients and the CNA's and nurses and he brightens up and smiles at the ones who take care of him.  I think they all talk to him, even if he has never been his patient and he knows that.  He can take his sun glasses off and put them back on without stabbing himself in the eye, and he does do some other, very deliberate things with his hands.  He doesn't just "hold" your hand, he "plays" with it!  And he doesn't fall out of bed anymore!!  This is all such an improvement from when he came to North Creek.

Michelle, thank you for the lovely comments and for explaining the inpatient program we are trying to get him into.  Sonny is getting to the point where he doesn't fall asleep whenever something new is introduced.  And he can pay attention for longer periods of time.  This is all critical for getting him into some intensive rehab.  There are some awesome CNA's at North Creek.  I could start naming them but I don't want to leave anyone out.  There are a couple extra-special ones who come and see Sonny even when they are on another wing, just to be sure  he is OK.  The nurses too look out for his well-being.
Thank you all.
Loretta

MONDAY, JULY 13, 2009 9:57 AM, CDT

Sonny had a really good weekend.  He was up at 7:00 AM Saterday for breakfast, then had lunch.  He did't get back to bed until about 3:00PM so after a nap I fed him supper in bed.  He did wake up an eat well.  Kelly was there for a while and my sister Tracy came up from Olympia and another old friend, Christina, came in so he had lots of company too.  Sunday his aide, Natalie, fed him breakfast in bed so he didn't have to get up so early.  Then he went to church in the dining room.  I didn't keep him up as long yesterday because I was tired too!!!  No more talking so far, but some grumbling and groaning. And he was really up and awake a LOT more than he has been.
Angela, let me know when you are going and I will try to be there.
Take care all,
Loretta

FRIDAY, JULY 10, 2009 12:21 PM, CDT

Sonny talked to Kelly and Jess on Tuesday - said "Thank you Kelly".  But he hasn't said anything else since that I know of.  He was in a really bad mood last night when I was there.  Nothing seemed to please him except getting his teeth cleaned, and they didn't get real clean because he insisted on holding the toothbrush himself.  He didn't do too bad, considering.  I did get him some applesauce and pudding and for the first time he actually spit food.  Applesauce spits well!!  However, I do well at putting it back in the mouth it came out of!  And Sonny likes food so he soon settled down and ate.
As he has become more aware his moods have become worse.  I think that is pretty understandable.  He can't be a happy camper sitting in there.  And we don't really know how much he understands or how much is a struggle for him.  So we all need to get to North Creek as much as we can and keep a sense of humor.  This too shall pass but I have a feeling this transition time is going to be interesting.
Take care all,
Loretta

MONDAY, JULY 6, 2009 8:14 AM, PDT

Hi everyone,
 I had a couple extra days off because of the holiday so I was able to spend more time at North Creek.  I had a good talk with the speech therapist and the case manager, and went over the report from Evergreen.  We have decided that since he has not had any aspiration problems we are going to go ahead with the plan for more meals.  This started yesterday when he was up for breakfast at 8:00AM and then had lunch at noon.  He was pretty tired yesterday afternoon so he was back in bed about 2:30.  We will do this for a while and when he gets used to the extra time up we will get him up again for supper.  Since food is one thing that gets him really excited I think we can use it to push him a bit.  He did actually say some recognizable words on Saturday!!  When the aide was wiping him down with cool cloths I said I bet that feels so good.  And he said "feel so ---guh".  Of course he hasn't even tried to say a word since.  But that is OK, I'll take what I can get.  And now I know the words are coming together in his brain.  Sam said Sonny was really excited about two friends who came to see him last week and best of all he recognized them.  So please come see him again!!  It is so important that he sees old friends, even  for short visits.
Thanks again, Loretta

THURSDAY, JUNE 25, 2009 1:21 PM, CDT

I just got a note this morning from Shaye, the speech therapist at North Creek.  She said the swallow report from Evergreen showed some silent aspiration and a delay in his swallow reflex so we will be staying on one meal a day for now.  That is kind of a disappointment as I think getting him up and out to the dining room three times a day would be a good thing.  But I know Shaye will move it along as he improves.  I got kisses again Tuesday evening, nice loud smacky ones.  Probably because I fed him some applesauce and pudding!!
His scalp is a mess again even though I washed it Saturday and again Tuesday.  If anyone goes in please brush his head to keep that stuff loose.  I also cut his nails so you can hold his hand without being in danger of losing part of a finger.  Those nails really hurt!!!
Take care everyone, and don't forget to sign in at the nursing home and on this site.
Loretta

FRIDAY, JUNE 19, 2009 10:03 AM, CDT

Sonny had his Barium Swallow test yesterday and he did fairly well.  With the texture of applesauce and pureed foods he did just fine.  He was also fine with thickened liquids from a spoon.  He had some difficulty with the straw and he didn't chew long enough with the diced peaches.  That is something he will have to re-learn.  So the good news is that he should be able to move to more food and less tube feeding.  It turned out to be a long day for him and for Kelly as there were issues with transportation to get them back to North Creek.
Sonny was too late getting back for lunch so I got him a supper tray when I got there.  He woke right up to eat!  But he was pretty tired from being up and out most of the day.  He did give me a nice smile though before I left, and some kisses.
Loretta

MONDAY, JUNE 15, 2009 11:00 AM, CDT

Hi again,  Sonny has done well this past week.  I had to go to a graduation Saturday in Bellingham so I was only at North Creek long enough to feed him lunch. He was not happy that I left so quickly and I did NOT get a kiss that day.  He was in a better mood yesterday.  We had time to sit outside in the courtyard and get some fresh air.  And I did get a kiss goodbye yesterday.  Another thing he is able to control to make his feelings known.

The orthotist was there last week and adjusted the brace for his left foot so it goes on better now.  He also taught the aides how to put the neck brace on so that it works.  I think the botox probably helped too, as the brace can now hold his head up pretty well.  He hasn't managed to talk to me yet, but he sure has tried hard.  He's gotten out a lot of sounds but no words.  I keep pushing him to continue trying; he gets very frustrated and just stops.
Please, if you can, go in to see him.  He has to feel very isolated.  I also think touch is very important, so if you are not comfortable holding his hand then just pat his arm or shoulder or something.  It has to be weird for him to be holding hands with his mother at his age, but he sure does hold on.  So I think it is important to him to have a connection.
Everyone take care
Loretta

WEDNESDAY, JUNE 10, 2009 12:31 PM, CDT

Sonny's barium swallow last week was canceled and has been re-scheduled for Thursday, June 18.  Kelly is being wonderful and will ride down with him.  I really appreciate it - since I am here at Evergreen I can just go downstairs and meet them.
Sonny was really active and "jiggy" last night.  I'm surprised they didn't call to say he had fallen out of bed again.  He was also trying so hard to talk.  He did get some sounds out, but no words.  Sam was there on Monday and got cheek kisses, so last night I tried again too, put my face down and asked for a kiss - and got one!!  Asked for another one and got that one too.  Just made my day!!  I gave him some applesauce, which he really likes.  And some strawberry ice cream which he seemed puzzled about at first, but then scarfed it right down.
I had several errands to run so couldn't stay real long.  Angela, I see that you were there again, too.  Thank you!!
Take care everyone
Loretta

TUESDAY, MAY 26, 2009 10:50 PM, CDT

Hi again,  Well - I'm ashamed to admit it but I lost my temper with Sonny's room-mate yesterday.  We haven't been able to move him in with Shannon because Shannon's room-mate won't move.  So today we moved him to room 211 - just two doors down.  It is still the bed by the door, but the other gentleman is quiet and pretty much keeps the curtain pulled.  So it was a busy afternoon getting everything moved.  Any change has always been difficult for Sonny but this has to be better than listening to Joe, his ranting, and his television.  I know he is lonely, and ill, and has no legs - so I have tried to make allowances.  But I will not listen to him call Sonny names, and scream obsenities because it smelled when they changed him.
Anyway, if you go to see him he is two doors closer to the big dining room.
Sonny is having the barium swallow at Evergreen next Tuesday on the second of June.  Kelly is going to ride down with him and I can meet him there.  Hopefully after that we can transition more to food and get rid of the feeding tube.  He drank his milk yesterday with a straw, much easier than by the spoonful.  Today he drank two glasses of milk with lunch.  I told Shaye that he managed the straw just fine, no choking.  I bought some harder straws that are in the drawer in his room, but they are going to supply them now that everyone knows they work.  She was not happy when I told her I was giving him sips of water from my water bottle, which is how I found out he could use the straw.  I told her I am being very careful to limit to sips, and he gets thirsty!!  He won't suck on the straw if he doesn't want to.
I'm on vacation this week, trying to get some much needed housework done.  So I won't be at the nursing home tomorrow, and maybe not Thursday.  I will be there on Friday.
Angela - congratulations on your new job and I am really sorry about the loss of your friend and roommate.  Please let me know if I can do anything.
Take care everyone
Loretta


MONDAY, MAY 18, 2009 11:49 AM, CDT

Well, Sonny had a busy weekend but did not nod or shake his head again.  He does seem to be able to move his head a lot easier so did a lot more looking around.  We sat in the shade in the courtyard on Saturday - there was a nice breeze there.  I think he uses the spitting thing to get attention because he spit a lot on Saturday and thought it was really funny from the smiles he was giving me.  Then he picked up my hand and kissed it and gave me another beautiful smile.  At that point I lost it and had to cry for a bit.  Yesterday there were visitors there from a local church.  They brought cookies and did sing a longs and chatted with the patients.  Sonny really stayed awake and paid attention to all of them.  Later, I was brushing his teeth and he grabbed the toothbrush, brushed a bit, pulled it out of his mouth and of course - spit.
He didn't get to eat Saturday or Sunday because Shea was concerned about which muscles in his neck would be affected by the Botox.  But he should get lunch back today and they are scheduling a barium swallow to evaluate how he is doing.  If all is well then he can start getting supper too.  I've also talked again to people about moving him to Shannon's room.  Hopefully soon.

FRIDAY, MAY 15, 2009 1:39 PM, CDT

Sonny had his Botox injections in his neck this morning and did very well.  We should see improvement in 24 to 48 hours.  He wasn't happy with the procedure; the doctor said it does hurt.  But he stayed awake and hung in there.  Riding in a vehicle was pretty scary for him so I was glad I could be there.  Later, when I was leaving, his chair had been moved to the hall to clean his room and he was spitting in his shirt.  His aide came by and said she had him tilted clear back because he was coming out of his chair and he probably didn't like that.  I asked him if he always spits in his shirt when he gets pissed off.  AND HE SHOOK HIS HEAD FOR NO!!!  The aide asked him if he was uncomfortable and HE NODDED FOR YES!!!!  COMMUNICATION!!!!!!  As you can tell I am excited!!
More later.
Loretta

TUESDAY, MAY 12, 2009 9:45 PM, CDT

Sonny had a good weekend - he ate well and had lots of friends in to visit.  He will be getting the botox injections in his neck on Friday morning so we will see if that will help the torticollis.  Some of his friends helped to make it a good mother's day for me too.  Kelly and Jess - the card is beautiful, thank you.  Sonny's aide took him outside and picked a few flowers and taped the flowers and card to the front of Sonny's shirt so I couldn't miss them when I came in.  Shanna and Debbie brought lovely pink roses.  Thank you so much, and thank you Denny for being there too.
Sonny still won't keep sun glasses on, takes them off every time.  He seems to be much more alert, however the more he wakes up it seems the worse his mood is.  I think of course that the more "awake" he is the more he realizes just where he is and how much he is limited.  This would make me pretty angry too!!  But his movements are becoming much more deliberate - he wipes his mouth, scratches his face, and wiped his nose when he sneezed - unfortunately before I got a kleenex there.  I didn't mind cleaning him up though because he really did get that hand to the right place.
I have to think that visitors are very good.  We just have to stay positive and upbeat.  He has to work at this himself and he has to want to.  Since short term memory is a problem I am telling him repeatedly that he was in an accident and is getting better.  I keep repeating the "getting better" part and tell him how well he is doing.
Take care everyone and thank you from Sonny and myself.
Loretta

MONDAY, MAY 4, 2009 10:05 AM, CDT

Sonny wasn't feeling well on Saturday, was running a temp and sweating.  But his lungs were clear and some Tylenol brought the fever down so yesterday he was all bright eyed again.  Kelly fed him lunch on Saturday and I fed him yesterday in the dining room.  They put some non-slip stuff (like you put under throw rugs) on his chair and it really did keep him from sliding down and out.  We had him out in the courtyard in the sunshine so I put my sunglasses on him.  He politely reached up and straightened them to his liking.  Later he took them off, then used both hands together to try to put them back on.  He had a problem with one ear piece, but almost made it on his own.  It was the first time I've seen him use both hands together on a task!!
His cheeks are filling out some - looks like he is gaining some weight.  Getting through one full meal seems to make him really tired and he has to sleep a while afterward.  We'll see how long it takes before he can wake up well at dinner time.
I found several shirts and some jammie bottoms and shorts at the thrift stores on Friday and Kelly brought some more.  My sister Tracy is sending a box with  socks and some other things.  I have marked it all and put signs on the cupboard that we are taking all laundry home.  So far so good.  So he does have plenty of clothes again and hopefully we can hang on to these.  Thank you Kelly and Tracy!
Everyone have a great week.
Loretta

MONDAY, APRIL 27, 2009 12:26 PM, CDT

Well, Sonny was in his wheelchair both Saturday and Sunday when I arrived and I managed to keep him in it after he ate both days!!  He is eating really well with no problems, although some of the food is very strange when it is pureed.  But after all this time of no food at all Sonny seems to like whatever I put in his mouth.  Shanna, he does get pudding for dessert all the time and he really, really likes that.  I make sure he has room for dessert!  They are turning his feeding tube off at 10:00 AM now and re-starting it at 2:00PM to give him time to get hungry and time for the food to settle.  Starting today he will be eating in the dining room with the other patients who need help or have to be fed.  We are starting with just lunch and snacks in the evening when I am there.  They will monitor his weight and adjust accordingly until he is on all food and no tube!!!
His clothes have all disappeared, again.  Sam is going in today to scout the laundry room and see if she can find at least some of them.  Then we will start taking his stuff home to wash.  It is really annoying.
Everyone take care and have a great week.  It is springtime!!!
Loretta

FRIDAY, APRIL 24, 2009 12:57 PM, CDT

Sonny was in his wheelchair waiting for me and for supper yesterday when I got to North Creek.  He had chile and corn bread and vanilla pudding.  I have never seen pureed chile before and it smelled much better than it looked.  Sonny seemed to like it though and he ate it all.  Pureed corn bread is just weird.  The problem came up when he was finished eating and I was getting him cleaned up.  They want him sitting upright to eat and for at least 20 minutes afterward.  But when he started moving his legs he started sliding down and it took some quick action of a few people to keep him from hitting the floor.  I'll be giving him lunch on Saturday and Sunday and I think I would rather do that with him in bed!!  Monday the aide will be trained at lunch time and THEY can deal with his sliding.  He should be getting lunch every day starting tomorrow!!  Progress!!

TUESDAY, APRIL 21, 2009 10:31 PM, CDT

Hi everyone,  This has been a really exciting day.  Sonny's  speech therapist was still there today when I got to North Creek and I was able to feed him supper.  They are putting his food in a food processer so it is pureed, but he had a big scoop of hamburger, mashed potatoes and gravy, and carrots!  They were pretty good sized servings so I was surprised he ate so much.  He ate all but a little potatoes and carrots, and then had pudding for dessert.  She has been feeding him this three times a week.  But now they are getting an order from the doctor so he will have a full lunch every day.  There  is a separate dining room for the patients who need help to eat and she wants him to eat there so everything is as normal as possible.  I will feed him on week-ends and give him a snack the two evenings I am there during the week.  This way they can watch his weight and cut back on the tube feeding as necessary.  He isn't doing real well with the straw but they can still use the feeding tube for water.  As he gets more used to this hopefully the use of the straw will come.  He sure did pay attention when she came into the room, then we confused him when I started feeding him.
We spent some time outside in the courtyard both Saturday and Sunday.  I put sun block on him even when the sun didn't shine!!!  So no sunburn.  The baby ducks have really grown and he seemed to have a good time watching them.
That's all the news for now.  I'm sorry this installment took so long to get here, I will try to do better.
Loretta

FRIDAY, APRIL 10, 2009 10:02 AM, PDT

Good news yesterday from Michelle, Sonny's case manager.  The speech therapist, Shea, has been feeding him on the days that she works.  She is going to do one more trial run and next week she will teach me to safely feed him!!!  She is also going to have staff feed him at mealtimes.  So he will be getting a LOT more actual food.  It will all be pureed, or smushed up, no big chewing yet.  But more progress made.  He is still having difficulty with liquids, but since he has the feeding tube they can move forward with what he can handle.
Last night after I brushed his teeth he picked up the washcloth I had on his chest, with his right hand, and wiped his mouth.  Those of you who have visited know that while his left hand and arm move rather randomly he doesn't move his right one much except to pick at his shirt.  But he seems to have more control with his right hand when he does use it.  It's weird how he does things sometimes, like wipe his mouth, but we don't know when he will do it again.  It's such a normal thing when not much is normal that it takes one by surprise.
Thank you all for writing in the guest book.  I appreciate the feed back.  I try to keep this updated so that we will have an accurate record some day of how Sonny progressed.  It is a real bonus to know that it means something to you, especially those of you who can't be here to visit.  I feel like I know all of you, even if I haven't met you.

TUESDAY, APRIL 7, 2009 11:35 AM, PDT

Hi all, I have really had a time getting into this screen to update the journal since Caring Bridge changed the format.  I have managed to get in "sideways" for the time being.  Sonny is still doing well, progressing slowly, but progressing.  Unfortunately we had him out in the sun a bit too long on Sunday and he got some sunburn, but nothing serious.  I will take in some sunblock this week so that doesn't happen again.  The courtyard at North Creek is really nice this time of year, and we have the added pleasure of watching 13 baby ducks that just hatched last week.  The mama is very proctective and they are so cute!!

Sonny's wall is becoming covered with the postcards that are being sent.  Thank you all so much.  He is still being fed by the speech therapist, Shea, and has more periods when the feeding tube is shut off because he is up in the wheelchair every day.  We seem to be getting closer to communication - in fact at times it seems so-o-o-o close.  It will be good when we can get more definite feedback from him.


TUESDAY, MARCH 24, 2009 8:20 AM, CDT

Sam visited Sonny yesterday and he is moving forward again! She said he "mumbled" at her for a good 20 minutes. This is an unusually long time for him to keep trying to talk. Then he was holding the red ball and moved it to his other hand. By himself!! What had us really cheering (she called me so I could cheer too) was when she was leaving she gave him a kiss and hug, put her face by his and said "Give me a kiss" and HE DID!! She said a real kiss that you could even hear. We are making progress!!
Loretta

MONDAY, MARCH 23, 2009 9:46 AM, CDT

Sonny had a quiet week and weekend. In fact he was pretty cranky a good part of the time. Either that or he was sleeping. Maybe he was just tired from the big week before!! He is still being fed three times a week by the speech therapist. It is up to her when some of us can be trained and when he can eat more often. I've asked that he be moved to the wheel chair every day including weekends so he was in his chair both days when I got there. Sam and I took him outside in the courtyard yesterday to watch the resident ducks and geese so he had some fresh air and even some sunshine for a while. His uncle Bill and cousin Drew came by a little later for a visit and Kelly and Jessica came even later. So he had a big day of company. Kelly showed me some albums in the family room that are made to be picture books with various animal,etc. And Michelle said there is a box of "tactile" items for feeling up in the activity room that we are welcome to use. And he has the things of his own on the book shelf.

TUESDAY, MARCH 17, 2009 9:03 AM, CDT

Sonny had an awesome week last week. He finally was given some FOOD!! Something in his mouth besides toothpaste! Actually he ate some pudding and sucked some thickened orange juice through a straw. He did well and swallowed without a problem so he is getting fed on a regular basis now. Just small amounts of pudding but a huge step forward in recovery. He has been picking up crayons for Jessica and grabbing a folded washcloth so I got him some crayons of his own and some paper to scribble on. I'm looking for objects that feel different, like a piece of satin, fur, etc. I took in some clay that squishes and started putting some in his hands to smush and feel. He seems to explore with his fingers so feeling new textures should be stimulating. He also focused with both eyes together this weekend. So I'm hoping that he actually has decent vision now. Last Thursday Jessica pointed out to the nursing director that his wheelchair was digging into his back. There was a new chair there Sunday that is more padded and fits him better. Really nice.
I'll keep looking for more "toys" for Sonny to play with. I have put what he has on the book case so feel free to use what is there.
Loretta

SUNDAY, MARCH 8, 2009 8:29 PM, CDT

Hi all, I saw Sonny yesterday and today and he is really making some progress. Today he actually looked for me and made eye contact without my saying anything. He is getting pretty smiley too. Sonny has had a busy week-end. Kelly and Jessica picked up his bike on Friday and took it to North Creek. He was bundled up and taken out to see it. I'm told he focused for a really long time on that bike and Jessica got several good pictures. Shanna was also here from Eastern Wa and was there on Friday and today. I'm sorry I missed you again! Angela and Pat were also there. I think he got worn out - he was sleeping soundly when I left tonight. I got a couple of really good pictures too and will get them and some of Jessica's added to this website. I may have to have Sam do that though, I'm not real good at that. My aunt sent him a stuffed kitty that runs and wags its tail and "barks". He seemed to have fun trying to chase it down but looked rather puzzled as to what it was. I am just so pleased that he is becoming more and more aware and focused.

SUNDAY, MARCH 1, 2009 7:24 PM, CST

I saw Sonny Thursday, Friday and today. He seemed pretty down on Thursday but was bright eyed and active Friday and today. I didn't make it there for several days because I fractured a big toe and it got infected. So I was an inpatient myself and I'm still on IV antibiotics. I'm going back to work tomorrow but I'm not sure how this foot is going to hold up or if I'll get there Tuesday as usual. Thank you all for picking up the slack and going in when I couldn't. I took in some new air freshener and body wash but if any of you see something that is needed please let me know.
Thanks, Loretta

SUNDAY, FEBRUARY 15, 2009 8:21 PM, CST

This has been such an interesting week!! Shanna - thank you for calling Kelly. He and Jessica have been in to visit Sonny as has Denny Borup. I met them there on Saturday and this has given Sonny such a boost! He has been so much more animated and expressive still today when I was there. And he really did give me a huge smile when he spit out the toothpaste today. I know that sounds like such a small thing. But being able to spit and doing it at the right time are really big accomplishments right now. And Sonny knows that because he is so proud of himself when he does it right.
Kelly - I know you feel bad that you just now found out about the accident. But I think you are coming on board at just the right time. Sonny is ready for more stimulation that you can give him. He obviously recognized you and is happy to see you. So you can give him now what he wasn't ready for before. We all have our "place" in this and yours is starting now. Thank you so much for being there.
Loretta

WEDNESDAY, FEBRUARY 11, 2009 10:53 AM, CST

Sorry I haven't updated in so long. We are still making baby steps forward. Sonny is holding the toothbrush more often, not only with his left hand that moves a lot, but also with his right hand. He seems to have more control with his right hand. He also spits out the toothpaste now so I've been using the regular kind instead of the toddler kind. It tastes better and leaves a better taste in his mouth. He often sticks his finger in his mouth as soon as I get there which I take to mean "clean it out"!
He is up in the wheelchair every day except Sunday, and has the braces on for 4 to 6 hours. His neck is looking better to me; there is some space now between his ear and his shoulder and it isn't turned as much. I will be calling next week to see about the botox. I haven't seen much of any improvement on his feet.
He is also making eye contact more often. If you visit you have to get down "in his face", up close and personal and he will usually look right at you. Sometimes he is just plain grumpy and won't look at you no matter what you do. But I guess he is entitled to be grumpy occasionally.
Thank you all for the cards. Some day we can go through all of them with Sonny so he will know how much he is thought of.
Loretta

MONDAY, JANUARY 26, 2009 6:59 PM, CST

I saw Sonny yesterday and he was pretty sleepy. Nick said he had been up most of the day so I guess he was just tired. Sam brought Nattie in to see him and Angela was there with her grandson Desmond. We had a nice visit around the bed. Sam went in today and was cleaning him up. She said that while she was brushing his teeth he managed to get hold of the toothbrush and actually held it and brushed by himself!!! He has tried to grab it when I've been brushing but he has never managed to connect. I keep telling him that he has to keep trying and keep pushing. It seems that for once in his life he has listened to me!!! Yea!
Thank you everyone for all the postcards that are coming in.
Loretta

THURSDAY, JANUARY 22, 2009 10:05 AM, CST

Yesterday Sonny, in his new wheelchair, rode in a Cabulance to Kirkland to see Dr. Armitano at Neurological Associates. He is a neurologist who specializes in pain medicine and autonomic disorders. He did agree that Botox would be a good treatment for his neck. So next month, after he has some x-rays done and his collar comes in, we can bring him back for the injections. They will last about three months and give us time to rebuild some of the muscles in the neck that have gotten weaker. It will also make it easier for the brace to hold his head upright.
His eye has cleared up and he isn't coughing or running a temp any more. But he is still sleeping a lot. Of course the trip down here Tuesday made him really tired. He did wake up for the exam, and did follow a command from the doctor to close his eyes. That was good that he did connect. He should be done with the antibiotics soon so he can get massaged again too. I 'm sure he will appreciate it more now that he is feeling better.
Loretta

FRIDAY, JANUARY 16, 2009 12:31 PM, CST

Sonny's neck brace has not come in yet but his new wheel chair has. So he is riding around in style!! He was running a low temp last night and it looks like he has an infection in one eye. His doctor was there and checked him again. She said they had done an x-ray and while he does not have pneumonia at this point his lower lungs are not inflating enough so she started him on antibiotics last night. She also got excited when he made eye contact with her. And my massage therapist was there yesterday morning and did massage on his neck. Sonny has an appointment Tuesday here at Evergreen with a neurologist to see about botox injections for his neck. While it isn't getting any worse it also isn't getting any better.
Thank you all for the cards over the holiday. We do appreciate them and the postcards that are coming in now.
Loretta

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