Slides and Merry-Go-Rounds

Ryan’s wheelchair was upgraded to a “four speed” today!! Occupational Therapy (OT) reprogrammed his chair so he could have more than one speed!!! He has four modes; Mode -1 is set at 20% (100% = 5 to 6 mph), Mode -2 is set at 40%, Mode -3 is set at 20% but with more torque so he can go on lawns and gravel, and Mode -4 is set for mom and dad!! OT put a control on the back of the chair so if Ryan is too tired or “blacks out” then Dean or I can drive the chair. Today they weighted Ryan today and in his chair he weights 640.6 pounds!! His Aunt Pam is here and she told him that now he fits in with family!! After they weighted him in the chair, they put him back in the bed and then weighted the chair. Ryan now weights 159 pounds – he has gained 3 pounds in the last week!! Most people don’t get excited when they gain weight, we celebrate!!!

Tomorrow Ryan gets to go on his outing. We are going to go to a park and have a sack lunch and then go to the theatre and see Cinderella Man. I think he is looking forward to getting out of the hospital again. Uncle Keith and Aunt Geralyn came in tonight so with the rest of us, there will be seven us going to the movie with Ryan!!

We finished our Tetra Topics Classes today and I asked what we would be doing at 2:00 pm next month?? I shouldn’t have asked!! We are going to have a month of classes on “Re-entry!” Some of the topics we will cover are Insurance, Social Security, sexuality, taking control of your independence, how to hire and fire caregivers, continuing with your education, etc., etc. Why did I ask??? After the class, I spoke with one of the Respiratory Therapist (RT) about “going home” and she said that one nurse and one RT will accompany us to help make sure that Ryan has the necessary equipment and his needs can be met. I asked how long they would stay and she said, “Oh, about 7 or 8 hours!” I took hold of her arm and said, “Roberta, we are not leaving!” She reconfirmed that things will get better!!

We did Range of Motion (ROM) in our Tetra Topics Class. They had each of the patients walk (no pun intended, ha,ha!!) their caregiver through ROM in their upper body and then their lower body, legs, hips, knees and ankles. When we were doing ROM with his elbow, Dean said, “Ryan my arm is getting sore!” Ryan looked at him and said, “Get over it DAD!” We all had a good laugh! When we left the class, Ryan asked Dean to push him because he was too tired. Dean was walking at a normal pace and Ryan asked him to slow down because the “breeze was too much for his face.” We determined that his skin must be very sensitive?? Actually, we don’t have a clue!! For a few hours tonight he was freezing, then two hours later, he was burning up. It is too bad that his brain waves can’t “talk” to the nerves in his body.

Three down, two to go. Ryan got his PICC (semi permanent IV) line out today!! He just has the trach and the halo to go!!! He told the pulmonary doctor that he wanted the trach to go next!! We hope and pray that it will be able to come out before we go home. We were sitting out on the bridge today and Ryan said, “Mom, I am beginning to feel like this is normal and I don’t want it to be normal”. I had to get my “big girl face” on and let him know that I hope it is not normal either. I told him that I was glad that he could go to the classes and learn all there is to learn about his condition, but hopefully we won’t have to use the knowledge!!

We are continually hopeful and prayerful that Ryan will be able to overcome this injury and be able to walk again. Thanks again for all of your love and support.

Dean, Terry and Ryan

PS. (This is written by Geralyn) Just to let you know that Dean and Terry seem to be handling things well. Dean has not lost his bizarre sense of humor. We asked him if they had received any financial counseling or advice on handling all of the expenses during any of the classes here at Craig. He said. . . “No, they just put the parents on suicide watch”! Terry said, “that is AFTER they point you to the homeless shelter”. We all had a good laugh. So thankful that none of them have forgotten how to laugh, despite the difficulty of all of this. We were talking to Ryan about the outing tomorrow and he mentioned they were going to the park, have lunch and then a movie. He said he was looking forward to going on the slide and merry-go-round! Another good laugh for everyone. What a great kid!

It All Looks the Same to Me!

Ryan has been pretty “groggy” today, last night after his “hypertension incident” he got anxious and started hurting all over. We tried several things to help him; turning him, putting warm cloths on his head, putting cold cloths on his head, putting blankets on, pulling blankets off, etc. etc. We just couldn’t get him comfortable so he asked for some pain meds and some meds to help his anxious mood, then about an hour and fifteen minutes later, here came his sleeping meds!! It was too much medication and he slept pretty soundly most of the day today!

We went to Occupational Therapy today, they want Ryan to experience as many “real life situations” as possible while he is here; so Amy took us down the tunnel to the Swedish Hospital. The halls and doorways over there are narrower and smaller. Ryan did really well, although towards the end of the class he was having problems “puffing and sipping.” It has to do with the mix of the CO2 and O2 (Dean says it is like blowing too hard or too fast when trying to blow up a balloon. You have to let the inhale catch up with the exhale!). After we got out of the elevator, Amy said, “OK, Ryan we will see you tomorrow.” We pushed Ryan down the hall and into his room and low and behold, they had changed the chairs around and then we got to looking closer and all of his pictures and cards were not on his wall. Ryan said, “What has happened to all my stuff.” There were five of us, Grandpa, Grandma, Ryan, Pam and me; we turned and looked at each other and then looked at the pictures hanging on a sidewall and noticed it was a different patient. We then heard Amy coming down the hall and asking, “Where are they?” At that point we realized we had got off the elevator on the second floor instead of going up to the third floor!!! Amy was so embarrassed! We all started laughing and then looked at each other and were even more embarrassed that the “five” of us weren’t even paying attention!! We were glad that the patient in 206 wasn’t in her room!! We trucked on up to the third floor and it didn’t take long for the word to spread; so a lot of people on the third floor had a great laugh too!! Dean walked up the stairs so he wasn’t even aware of what had happened until he heard all the laughing! By the way, the two floors are identical when you get out of the elevator; the signs are in the same place, they have gurneys sitting along the wall, the drinking fountain is in the same place, etc. etc, and so it felt right until Amy tried to go back to her office and we tried to go to Ryan’s room!!

They have taken Ryan off fluid restriction; the sodium and potassium levels look good. He can now have any and all of the fluid he wants. He has a staff infection, so now we are watching that!

Dean has finally figured out the cycle that we go through here. He compares it to a roller coaster ride; with eyes closed. As you start up the climb (the good days), you hang on knowing that sooner or later you will get to the top and begin the scary ride down (the bad days). At some point, we hit bottom and begin the next climb not knowing how long or how fast the next cycle will be or last!!

Yesterday, one of the Respiratory Therapists came into the room and was admiring Ryan’s collection of reading material. He has a shelf with some books that she called “pretty intense” reading material (church and inspirational books). She realized that he was a Christen and was impressed with the books that he had collected. She then noticed his Jughead and Archie comic books. She wondered how had chosen his reading material!! Ryan loves Jughead and Archie, he has a “stash” of those comic books at home.

Today, the same therapist came back in was commenting on the “grocery store” that we have accumulated to assist Ryan in his effort to regain his appetite and some weight (OK, so we eat some of the stuff to keep it fresh)! She was laughing about the “nutritional stuff” we had; Snickers, Oreo’s, chips, jerky, chocolate peanuts, etc.,etc.,etc., and then a “fresh bag of tomatoes.” She was cracking up!! Dean told her that we have to have a balance with all of this. It was pretty funny!

We also went to a Transportation Clinic today. The tech measured Ryan in his wheelchair to determine how much room it would take to get him into a vehicle. She measured for headspace, as well as wheelchair clearance – he needs 60” inches for height, 28” for the width and about 58 “ for the length. Sixty-inches will allow him to sit straight up with 1/2” clearance!! The tech kept saying, “Boy, you are really tall”, “Gosh, I can’t believe how tall you are!” After she did all the measuring, we looked at a couple of vans that a local dealership, which specializes in retrofitted vans, brought by. One of them looked like a Fed-Ex van (only a little smaller) and the other one was a mini-van – which Ryan won’t fit in! Ryan was not very excited about any of it. We have learned to tell when he doesn’t want to face “reality” – he won’t look at anyone!! I asked if they had a nice “truck!!”

We also learned how to maneuver him up and down stairs, curbs, and ramps. We will have to have a manual wheelchair to take him into places that his motorized chair can’t go, like airplanes, grandma’s house (which isn’t wheelchair accessible!) and for that matter, any other place, public or private, that isn’t wheelchair assessable as well as when the motorized chair is not working!!!

Ryan was talking to Meredith on the phone tonight and he had to cough so he asked Meredith to hang on because he didn’t want her to have to hear the cough. When he got back on the line he said, “I had to step out for a minute, sorry!!” After days like today, he still has a sense of humor!! We are continually praying that we will be able to “endure to the end.” If you are a parent and reading this, you know how it feels to have a child hurt or in pain! I told Ryan that if I could I would trade him places. We continue to receive wonderful e-mails, cards, packages, etc. etc. full of love and encouraging words, which helps us get thru each day. Thanks!!

Dean, Terry and Ryan

Some Interesting Pizza

Well, it is good to be back to my “home away from home”!! After taking Lisa to BYU-Idaho I realize that I’m not college age anymore!! Her car was packed to the brim and after about 13 trips up to the third floor, I was worn out!! We got her settled in after several trips to Target and Wal-Mart to get closet organizers, shoe organizers, etc. etc. I was able to stay in her apartment with her because all of her roommates were out of town for the break; that was nice except I had a hard time getting into to the twin bed that was sitting on cinder blocks!!! I am OLD!! It was hard to leave her there all by herself and it was really hard to see Ryan’s friends and Ryan not there with them!! We will continue to look forward and hopefully Ryan will be back at school soon!!

We went to a home modification class today. They had us bring in our floor plans to review and see what options we have. We just need to figure out a way to “get” Ryan in the house!! We also looked at the bathrooms to see what we can do there. A little overwhelming, especially considering the fact that we are not fully convinced that his condition will be permanent. Faith before the miracle!! --However, this reality stuff keeps getting in the way.

Ryan was sound asleep, snoring again, and the respiratory therapist came in to give him a treatment and I said to her that I wished I could sleep that soundly. She said, “You probably stay up all night worrying!!” She is right!! I told her that there are too many “doors” that we have to go thru and I didn’t want to see what was behind door #3!! It is a lot to take in some days!!

After our home modification class we had a Tetra Topics class; it was canceled due to lack of interest!!! Actually, Ryan was the only one out of his group that was able to get out of bed today. There are so many unknowns with Spinal Cord Injuries. Each day brings a new set of challenges for all of them. After his classes, we went outside, sat by the fountain again, and enjoyed being outdoors. It was a little windy and warm, but a nice day. Ryan, Grandpa and Dean were under a gazebo, in the shade and having a nice visit. While we were there, a pizza man came by bemoaning the fact that an order had cancelled for him and he just happened to have four pizzas that he needed to sell, cheap! Dean said it was creative marketing; nevertheless, we got a pretty good pizza. Everything was going well, UNTIL Ryan’s eyes rolled back into his head and blanked out on us. Dean called to him and got no response. He knew that he was in urgent need of help, so he began pushing Ryan’s chair “UP” (just a reminder, the wheelchair weights about 480lbs and ad another 156lbs for Ryan (he has lost more weight)) the ramp towards the sitting area just outside of the cafeteria where Terry, Grandma and Pam (Terry’s sister) were visiting. He yelled out to us to get the nurse. I asked what was wrong and Dean said, “I didn’t know, but we needed some help, NOW!!!”

I ran into the cafeteria (which is in the basement – no staff there) and had the cook call for nursing. As soon as Dean was able to get Ryan inside the door, he put him in a reclining position and Ryan told Dean to “lifted my legs” to get some blood back into his head. We heard over the intercom NURSING STAT DOWNSTAIRS CAFETERIA 3 WEST, NURSING STAT DOWNSTAIRS CAFETERIA 3 WEST!!!! They do ‘come a runnin’ when a stat call goes over the intercom. Grandma counted 14 people there at one point. Grandpa had to go over and sit in the corner; he was having a hard time handling “all the excitement!” After it was all said and done, Dean told Grandpa, “It will be easier the next time!” We are becoming to comfortable with this!! The problem... hypertension. The first blood pressure they took was 165/128: we got too much blood to the head! Typically, with those numbers we should have sat him up rather than reclining him; however, that was taken when he started getting color back in his face! We need to carry a blood pressure cuff with us so that we can take his blood pressure when he turns grey – and compare the numbers! A few minutes later, it was 115/76. As his Doc was talking with us, he explained some of the things that could cause this, one of which is eating!! He said that we don’t have enough blood in our systems to do everything so when we eat, all the blood goes to the stomach to try and process the food (what was in that Pizza!) – that is why people like to take a nap after lunch because there body is trying to adjust to the blood working in the tummy area!! Pam and I decided that we need to eat more lunches so we could take more naps!! Respiratory came in and said that it could also be his CO2 levels so they added six more inches to the ventilator tubing to create more dead air space. He is now up to a total of 62 inches; it is quite a “trunk!” After about 20 minutes, he was feeling pretty good, but as the night wore on he began anxious and began to ache all over. The nurse came in and gave him more drugs; he is sleeping like a baby now!! The doctor said that they will just keep making adjustments to his meds to try and figure out a good balance for his confused nervous system.

Bishop Walker and his counselor (from the family ward) came by this evening to meet Ryan and see how we were doing. It was really nice to visit with them; they left after having a prayer with us. We continue to be amazed at the people that are praying for Ryan. He is so blessed and so are we. We love you all!

Dean, Terry and Ryan

Training the Doctor

It is interesting being in this type of hospital (rehab) that you don’t go to the doctors’ office, they come to you. Today in the elevator we were heading down stairs for one of Ryan’s classes and the head of respiratory and a therapist were riding with us and they began to look at the vent that Ryan is using and reset a couple of the settings. It only took as long as the ride from the 3rd floor to the 1st floor to adjust the settings. We could be in the hall way or in the gym (where a lot of the therapy takes place) and the docs are listening to lungs, checking blood pressure, and the many other things that are needed to check on their patients. This afternoon Ryan was chosen as a guinea pig to test out a new ventilator. It is smaller and more compact and yet still has its own internal battery that will last about 10 hours, without recharging. (For you accountant types – the going list price is about $8,500). It seemed to work well. One of the things that we liked about it was its weight. When Ryan was doing his weight shifts, (leaning the chair back to take pressure off of his bottom side) the chair used to fall back because of the weight of the old ventilator and would tip the chair back until it hit the anti tip bars. With the new, lighter weight vent, we didn’t have that problem. Much nicer not to have the chair seem like it was going to fall over on its own.

In his tetra class today, we went over his medications (meds) to learn about what they are for and how often he needs them. They have been good about explaining as we have gone along, but we got to ask the pharmacist any questions that we might have had.

For the medical types, here is a list of the medications and how many times per day

These are scheduled or automatic every day:
Medication	Amount	Frequency
Albuterol Solution	3 ml	6
Anusol Supp
Baclofen Tap	20 mg	3
Bisacodyl Supp	10 mg	1
Docusate Cap	100 mg	2
Docusate Enem		1
Enoxaparin Inj	30 mg	2
Escitalopram Tab	20 mg	1
Fluocinonide Cream		2
Gabapentin Cap	400 mg	3
Guaifenesin Tab	400 mg	4
Heparin Lock Flush	300	2
Hydrogen Peroxide		2
Lansoprazole Cpdr	30 mg	1
Midodrine Tab	10 mg	1
Midodrine Tab	5 mg	1
Oxycodone TB 12	10 mg	2
Potassium Chloride	20 me	1
Prep-H		1
Sodium Chor		2
Urea		2
The unscheduled ones (ones he can request if he needs to) are as follows: (AS IF THOSE WEREN'T ENOUGH)
Medication	Amount
Acetaminophen	650 mg
Acethlchsteine Soln	2.5 ml
Albuterol Aero	4 puffs
Hypromellose	1 drop
Heparin Lock Flush
Hydrocodone	1 or 2 tabs
Lidocaine Viscous	20 ml
Lorazepam	0.5mg
Milk of Magnesia	10 ml
Ondansetron Inj	4 mg
Sodium Chloride
Traimcinolone
Zolpidem	5 mg

We ask the pharmacy people how this works when we go home and we were told that we get one weeks supply to take with us. After that, we fill the prescriptions at our home pharmacy. We ask what happens when he needs a new prescription and were told to train our doctor about spinal cord injury so that he would know how to handle it. WHAT?! We are not medically trained and it will be our job to inform the Doc what to do. I have been teasing that after this was over I was ready to get my degree and Terry said that she would never let me go into practice. Well, times are changing….. Heaven help us. (In more ways than this medical stuff).

Ryan got bored and fell asleep and started snoring!! This is the only place that you can fall asleep and snore (loudly) and the teacher just continues as if the students are alert and attentive!

We are going to restrict Terry to the walk between the apartment and Ryan’s room. She attempted to run an errand this afternoon and two hours later she showed back up after driving around all of that time and never finding the store that she wanted. Thank goodness. I saved some money. Although with the price of gas, it might have been cheaper to get her there quicker. (Denver area regular unleaded ranges from $2.05 - $2.20 per gallon). Terry’s parents and sister came to town this evening. They were surprised to see Uncle Fred and Aunt Mary and Louise were here at the same time. It is great to have all of the phone calls, e-mails, cards, and visits from so many people.

Dean, Terry, Ryan

Respiratory Stat!

Ho, Hum…. Just another no breathing episode for Ryan. It happened around 2:00 a.m. Saturday morning. This time it was caused by an excessive amount of water in the vent tubing. They have installed a humidifier to add moisture to his lungs. Quite often, the tubing accumulates too much water, but this time the tech was unfamiliar on the proper procedure of fixing the problem. So another respiratory stat call to get him some air. He did tell us that this one probably scared him more than any of the others did. (It scares me to think about what will happen when the power goes out; here or at home). When we leave at night, we put the ‘call light’ up to his mouth so that he can puff in a small amount of air to trigger the nurse’s station. When the call goes in, they call back on the intercom asking, “is Ryan OK”? When no one responds they send someone in to check things out. Logistically there is a certain amount of time before someone comes in to diagnosis the problem and then respond. The vent also has alarms built in that will go off and call the nurses station when the readings go beyond a certain point. But during this time RYAN IS NOT BREATHING. HELLO!!!!!!!!!! Saturday after Ryan got up for the day we went down the street to the corner ice cream shop. They make their own toppings as well as the ice cream. It was pretty good. Ryan did well driving. No more potted plant disasters. He seemed to enjoy the time out of his room and out of the hospital. Before we came back in, we sat for a while outside where there is a small fountain with a pond with gold fish in it. Almost normal life, at least for a short period of time. Afterwards he went to bed and took a 4-hour nap. Some of Ryan’s friends from BYU-I came to visit us. They were super nice and very fun to talk to. Then we had a visit from Ryan’s bishop as well. It is humbling to see all of the support and kindness people are showing. We joke to visitors who comment about how cool Ryan’s room looks (with all of the cards and letters hung on the wall), that we go into other patient rooms when they are not there and steal their cards, just so we can cover the walls! Ryan’s roommate brought his Napoleon Dynamite magnets this weekend, so now the room is complete. I don’t know how we survived without those! Seriously, if they move Ryan to another room we might have to call in a moving company to handle all of the stuff. Ryan loves it. THANKS TO EVERYONE! Sunday has been a good day for Ryan (and the rest of us as well). Except our grandson (Tristen), Steve and Michelle had to leave to go back home this afternoon. It was great to have them here. We will miss them. It sounds like Lisa is getting settled in at BYU-I as a freshman student. Thanks to Terry, she has her room set up and is ready to begin college life. Already checking out the boys, I hear. Terry was able to make it back to Denver tonight (late flight and all). It is nice to have her back. Dean, Terry, and Ryan

Driving Lessons

Be honest. How many of you use the 5-second rule in your home or work place? (You know the one where food drops on the floor and if you pick it up within 5 seconds, it is still ok to eat). Well, they use the zero second rule here at Craig. Anything that falls on the floor is put in the trash, down the drain, or in the soiled linen. It makes it a challenge with a 5-month-old grandson to not throw everything away. (He is pretty cute). We have staff come in to get their daily fix of Tristen’s smile and laugh). They do keep the place clean. The floors are shining and the cleaning staff is the ones that wear scrubs / uniforms. The rest of the staff wears whatever. One of the cleaning staff is from Ireland. She is very friendly, especially with Tristen. She has worked here 33 years. There are alot of the employees that have worked here for decades. This morning I asked the woman vacuuming in our hallway right next to our apartment door if she would mind waiting a while. (It was 6:40 A.M.) They take cleaning seriously! We had a pretty good day. Four in a row is a record, I think. This is good. Ryan was in his chair for about five hours yesterday. We did the usual schedule for Thursday, PT, Tetra Topics, and OT. The unusual part is Ryan's driving! He was driving out of the Tetra class, blacked out, ran into a potted plant, and broke it! For all of you concerned about the plant, it is okay...the pot is totaled. We didn't like it in that spot anyway! We are still trying to figure out what to do about the dizziness. It seems to always get worse when he drives (obviously). This is the first time anything like this has happened. The doc is going to increase his proamateen (sp?) and see if that helps. Hopefully we can get it figured out and soon! It is really bothersome for Ryan. We watched the NBA Finals Game 7! What a game. It wasn't too high scoring, but good competition. All of the techs here had to keep coming in to get an update on the game! (Ryan was cheering for the other team). Today, they increased his proamateen and it seems to be helping. He has done much better today. Although during his PT class, they discovered a small sore on the back of his head. He thinks it occurs when he has a muscle spasm and puts pressure on the back of his head. So, one more thing to watch. He has been freezing all day. Like he said, if it is not one thing it is another. However, as we are learning change is constant. He was up in his chair for 6 hours today and did well. Oh, by the way we had another respiratory stat call today for Ryan; no big deal……except he couldn’t breathe. We were in the gym with PT and the battery on his vent started chirping (low battery signal). The PT panicked a little bit. Ryan was still getting air but the alarm was going off and she was having a hard time fixing the problem. So, she called for respiratory stat and all of sudden we had 10 people there in about 5 seconds. He only missed two breathes, no big deal he says. However, he got everyone else’s attention. ALMOST routine!/!?!? Tonight the tech came in turn him to his other side and accidentally pulled apart the vent hose and he was without air again. She was anxiously trying to reconnect and he laughed at her and said that one time (before his injury), he tried to see how long he could hold his breathe. One minute and 50 seconds!! Practice makes perfect…..I hope we can survive. For all of you medical types here are some of the settings from his vent. Rate / 14 (how many breathes per minute). Tidal Volume / 1550 (how much air he gets per breath). When he has his voice they increase this to 1850. O2 % / 25 (normal room O2 is 21%) Peak Flow / 115 (how fast the breath is pushed into his lungs) Peep / 5 PSV / 0 56 “dead air space When Steve (Michelle’s husband) came in the room this evening he was holding a showcase with a NFL football signed by John Elway – Super Bowl XXXIII. He felt like he had a special guest riding in the car with him, almost as important as the President! THANK YOU to the folks that had a hand in getting that for Ryan. We are definetly going to protect this one. We might have to get an armed guard. Terry and Lisa are getting settled into BYU-I. They have been going to the orientation classes, moving into Lisa’s apartment, and getting used to this college life stuff. Good luck Lisa. We miss both of you. Ryan, Dean, Michelle, Steve, Tristen

Letter from Tristen

Dear Uncle Ryan, This letter is from your nephew, Tristen. I am only 5 months old so I had my Grandpa help me. I thought I would let you know what it is like down here in my stroller. It seems like you and I have a lot in common these days.

• The food around here stinks. They put this junk in a bottle and make me eat it. I hear they feed you through a tube in your stomach. OUCH! I think I would like some chocolate or something but I haven’t been allowed yet. (My grandma Terry says that chocolate is the most important food group).
• I just want to get up and run around. I cry and holler but no one seems to be listening. I just want to go and play. Is that too much to ask?
• This voice thing is driving me nuts. Can’t people just figure out what I want! It’s not easy. At least they can read your lips. That has to be easier than what I have to go through.
• And this stroller. (Does yours really weigh 480 lbs.?) They just push me around where ever they want. I have no say in anything. I hear that you can suck or puff in a straw and move yours around. Must be nice.
• Someone is always wiping my face or my nose. It’s not that bad...really.
• Sometimes it is really BORING!!!!!!!! People think we are tired all of the time but it is just a way to pass some time.
• I am figuring out that people are fooled pretty easy. All you have to do is to smile at them and they give you all of the attention and just about what ever you want. (We need to keep this a secret. If too many people find out it will make our lives a lot tougher). I know that I am taking some of the spotlight from you but I am kind of cute too.
• And is it our job to make people feel happy whenever they show up? You know, I might be having a bad day once in while too. Maybe we could figure out a way to charge people for making them happy. Oh well. The rigors of the job.
• We both have great names. My middle name is Ryan. My mom tells me that I was named after you. You must be pretty cool.
• We both have a great future ahead of us. There are a lot of things we are not sure of but it is going to be OK.
• I keep hearing stuff about the Denver Broncos. What’s up with that?
• We know that we are loved by some great people (I know parents can be a pain sometimes but they mean well).
• I try and talk to you but you just smile and make funny faces at me. I would really like to know more about you. I hear that you went on a mission. I want to do that some day too. I also hear that you are a lady-killer. Can you share some of your secrets with me?
• You know, not too long ago I came from heaven and I did not see one angel with a halo. If you think your halo will get into heaven you will need to rethink it. It might be a good time to get rid of yours. (July 27th, you say).

Well I have got to go. (Mom’s hollering about something. I heard your nurse say something about a bowel program. Is there no privacy here?). We have a wonderful family and I am glad to be a part of it. Hang in there. And I will see you when I grow a foot or two. Love Tristen Ryan Robbins

The Joy of Hospital Food

When I came in this morning Ryan told me that the nurse had been in and had lifted his sitting restriction. Apparently, his skin sore has improved enough that they allowed him to sit up today. In addition, his potassium and sodium level has improved but we are still on a fluid reduction to make sure he is getting enough electrolytes. Later Dr. Balazy came in and looked at Ryan and said that he looked a lot less like a patient – in other words, he was looking good. Ryan has been fighting some dizziness for a few days now and they are looking at what they might be able to do to treat it. But all in all he is doing well. Ryan asked him about the air that is blowing out of his trach when he has his cuff down. It is loud and really bothers Ryan. Dr. Balazy said he would talk to respiratory and see what could be done about it. Later this afternoon the ENT (Ear, Nose, Throat) Doc came in and looked at the trach. He said that the opening was a little large, but he had seen worse. I ask him about putting in a stitch and he said that the body attacks it as a foreign substance and it actually retards healing. The two options are to put in a larger trach (#9) but he would lose his voice, or to use an adhesive dressing to assist in pulling the skin together somehow and hopefully help the healing. He will write a prescription for the dressing, watch it on a weekly basis, and see if there is any improvement. He had a lot of really neat gadgets, I even got to see down the trach tube with a scope! Ryan was able to be in his chair for about 5 hours today and had his cuff down for about 13½! So that was great. One thing we forgot to mention last night was when his nurse came in to give Ryan his meds and accidentally stuck herself with the needle. Her supervisor came into the room a little later and told us what had happened. She said that the protocol here at this facility was to send the nurse to the emergency room and have her tested. Also they had to draw some blood from Ryan and test him. She felt really bad to make Ryan pay for some else’s mistake but that it was just precautionary. So a while later they came and drew some blood and sent it to the lab for testing. Oh the joys of the medical profession. This morning one of Ryan’s classes was in the tech lab, where they had him read a story into the computer so that his voice could be analyzed for voice recognition. This software is called “Dragon”. By listening to his voice and building patterns the computer can learn to read his voice allowing him to speak into the computer to send e-mails, use Microsoft Word, Excel, and other programs and have some independence. They also have phones that you can use your voice to operate too. It really is amazing what they are coming up with for people with limitations. In his tetra class, the discussion was on air travel. Terry the instructor does a good job and presenting topics and showing how many things can be done even in a wheel chair. We take so many things for granted, like the time it takes for someone in a chair to prepare for air travel. For instance, if you go to the airport in your power chair, how will you get it on the plane? (They recommend that you go in your manual chair because it is lighter and easier to put on the plane.) How will you transfer from your chair to the airplane seat? (They have an aisle chair that you get into to go down the aisle and then transfer into the airplane seat). Then, making sure your chair gets on the plane and follows you to your destination. THEN how will you get your power chair there? Shipping can cost $500.00…using this method reduces risk for someone “rearranging”, or doing anything imaginable to the chair. (The chair Ryan is using right now weighs about 480 lbs.) .Some students in the class were frustrated with all of the extra actions someone with a disability has to take. Like having to ask the ticket attendant to speak to the side of the counter, because if you are in your chair, they cannot see you. In addition, security! That was another fiasco! Terry told us that people would actually ask a person in a chair to, “just take a few steps” or “can’t you just stand for a second?’”. What about bathroom needs? You cannot just walk down the aisle and take care of those needs by yourself. It is amazing how this new life changes your thinking. But we learn, adapt, and make the best of our situation. The outing that was scheduled for tomorrow has been rescheduled for next Fri. The patients were ready this time but the nurse that has to go with the group is way over booked and could not work this outing into her schedule. Ryan did not seem as disappointed as I was but we are learning that change is constant, so you might as well roll with the flow. Tonight for dinner we tried to feed Ryan the food that was on the menu (remember the food pyramid) but he said it was gross, so Uncle Keith and Michelle went to Subway and brought back a seafood and crab sandwich. He said that it was a lot better than the meatloaf. We have gotten huge support from the local ward here in Englewood. The kids, bishopric, and stake presidency has come to visit Ryan more than once! A few times from some. We have been amazed at their support for somebody they do not even know. We would just like to continue thanking EVERYBODY who is in this with us. We can feel your prayers and support daily. Thank you…again! Dean, Michelle, Tristen, Ryan

Laughing

Yesterday, Michelle, Tristen and I came back to Denver. Michelle is Ryan’s younger sister and Tristen is her son (our first grandchild). This morning around 10, the pulmonary doc came in and talked with Ryan. He listened to his lungs and said that everything was looking good. Ryan said he felt okay. Then the clinical coordinator came in and said that Ryan’s sore looked much better today. We were glad to hear it. Dr. Balazy then came and looked at it and said the same thing. Even though it has improved, they restricted him to only one hour sitting in the chair. It is critical that his skin stays healthy. They watch it very close. Ryan hates the new “air” bed. He says it is too loud. It is not too bad, but with all of the intercoms, alarms, and ventilators, it can be a noisy place! We spent our hour of “up” time at his Tetra Topics class. In the Tetra class, they talked about keeping the lungs healthy. They had the Head of the Respiratory department come in and teach the class. He was very good. We learned about trach tubes and changing to the stainless steel tube (This tube is called the Johnson tube), the length of the air hoses, and the anatomy/physiology of the lungs. We also learned a little bit about the philosophy for lungs here at Craig. The department head told us that we have little air sacs in our lungs called alveoli. (Sorry to all of those who already know this stuff, everything is new to us…and I hope I get it right!) When the air comes into the lungs, it fills the alveoli and exchanges oxygen for carbon dioxide in the blood. He told us that if you lay the alveoli next to each other, one deep, it would cover an entire regulation size tennis court! Sometimes, in SCI patients, these alveoli like to collapse. That is a breading ground for infection, like pneumonia. Their theory is to inflate the lungs fully, and keep those sacs full of air to prevent infection, among other things. So Ryan is taking a breaths that is about double our normal breaths (or like a BIG deep breath all of the time). If he gets too much air, they extend the length of his air tube coming from the ventilator so that they can control the carbon dioxide side and have the proper input and output of air. It’s a constant balancing act. During the class, the doc asked Ryan what his vital capacity was and Ryan told him the last time it was checked that he was at zero. (This is a measurement to tell the docs and Ryan if he has any ability to breathe on his own.) Another thing we learned was that if the cuff on his trach were inflated too much it would cut off the blood supply and kill the tissue. One-way to tell if it had the proper inflation was to have a small of air coming up the air way most of the time. Whew, it takes my breath away just thinking about all of this stuff. The results of his blood test came back this morning and Ryan has low potassium so he has been put on fluid restriction. He can only have 1500 mls per day. Like he said, one day he is told to drink and drink and the next day he is on a restriction. I think the problem is that his diet does not have enough vitamins and nutrition so when he drinks a lot of water it washes away the good chemicals away. During his bladder class he was told to drink lots of water to keep things moving, but now he needs to slow it down. When will we ever get this right? We were talking about proper nutrition and how he needs to eat his vegetables and more fiber etc. etc. In his bowel management class yesterday they talked about the FOOD GUIDE PYRAMID and how we should get the right amounts of foods. Remember 6-11 servings of bread, cereal, rice, and pasta a day. Then 3-5 servings of vegetables and 2-4 servings of the fruit group. Milk, yogurt, and cheese 2-3 servings and meat, poultry, fish, dry beans, eggs, and nuts 2-3 servings. Finally at the top of the pyramid of have fats, oils, and sweets (use sparingly). As Ryan and I talked about his need to eat more of the right kind of foods he said we just needed to turn the pyramid upside down and it would be just right. He is beginning to have taste and a little more of an appetite but he isn’t ready to give up all of his junk food just yet. Some people snore in their sleep, other people talk in theirs (Mere) but our grandson laughs in his. Tonight as we were wrapping up the day, Tristen was sleeping in his mothers arms and all of a sudden, he began laughing. We thought he was awake but he was sound asleep and started laughing and smiling. It was so funny. I have heard of happy people but while you are sleeping??? I knew he was the best grandson ever and this proves it. Terry left this morning to take Lisa (our youngest daughter) to Idaho and begin her college experience. She will be going to the same college, BYU-I, that Ryan was going to when he had his accident. Ryan told me to tell her not to take a P.E. class. They can be hazardous to your health. It is wonderful that he can keep his sense of humor. We appreciate all of the love and support that we have received. Thank you. Dean, Terry, Ryan, Michelle and Tristen

Blood Pressure Goes Up, Blood Pressure Goes Down

Good Evening Everybody. Today was an okay day. This morning, Ryan got up in his chair at about 11:30. He was feeling dizzy, his eyes were fully dilated, and looked really pale in the face. He said he was okay, but his color just wasn’t right. The staff came in and checked his blood pressure. It was high, I don’t remember the numbers, but it was high for him. They checked it again a little bit later, and it was too low. His temperature was also low. It was 92.6 (at least we know what that means!) They checked his BP for a third time, and it was high again. At this point, he wasn’t feeling dizzy anymore, so we decided to go to his Tetra Topics class. It was very educational. The teacher is a paraplegic, and I thought her point of view was great as she was a patient here at Craig, and seemed to know what Ryan (and the others in the class) was going through. We learned about Bowel Management. She was sure to explain that everybody does it so we shouldn’t be embarrassed. She taught us how to give our bodies nutrients (fiber, water, and not to use a supplement) and so forth. A person with an SCI has to be extra careful about those kinds of things. The teacher (I think her name was Terry) told us that in a SCI patient, it takes twice as long for the food to go through the body. It is like a 20-foot distance! All jumbled up of course. She used a slinky and a rope for example. During the class Ryan’s ventilator alarm went off and without Mom and Dad there, I had no clue what to do. Ryan said he was fine, and the alarm was no big deal, so I didn’t worry about it! It is a good thing he knows what is going on. Tristen also put in his two cents for the class. He recently learned that he could make noise, and make noise he did! We had to apologize for being so loud! But I think we really learned a lot. After Tetra Topics, we went to the gym for OT. Again, Ryan was feeling dizzy and his BP was high, so we decided it would be best to end it for the day. With his injury, his body is going through some very extreme feelings. He did rest and seemed to feel better the rest of the day. After a couple of hours, he BP seemed to be more in the normal range. Just a side note, a SCI patient’s BP tends to be lower than his BP prior to the accident. Meredith said this happened because he was too good at guessing his BP, so he had to up the curve. The pulmonary doc came in today, and decided that tomorrow Ryan would have his cuff down for five hours. After five hours, they would test his O2 level and other pulmonary functions and make sure that is not the cause of the BP problems. Ryan also got a new bed today. It is an “air” bed. It is machine operated, with different pressures flowing through the pockets in the mattress. This is to help his skin. He has a small sore on his backside, and the theory is that the less pressure on the skin, the better. So hopefully this will help. I asked why they just don’t use this type of bed in the first place. The tech told me that they want the skin to stay tough, and use the least amount “help” possible at the start. I guess the less they have to simulate, the better. Other than that, the day went fine. Ryan seemed to smile a little bit more this afternoon. He gets a kick out if his nephew. It is a good thing that he will be here for a week. When I came into the room, I saw all of the cards, letters, and pictures from friends and family. It was AWESOME! I just felt the love from everyone who supports Ryan and our family. We can’t thank you enough. You should come and see it! The room is covered. So PLEASE don’t stop sending them! I think that the staff here can really tell that Ryan is a loved person, because he is! Thank you all. Michelle

Happy Father's Day!

Happy Fathers Day!! We had a nice weekend; Ryan was not feeling very well, though. He continues to have the “heavy” and “burning” feeling. He compares the “heavy” feeling to being buried in sand and the “burning” feeling like a sunburn under his skin. The weekend doctor up’d his dose of Neurontin; hopefully that will do the trick. He takes Loritab for pain, but it doesn’t seem to help; we are gong to talk with the docs tomorrow to see if there is anything else they can do. He does great with all of this when he is not in pain, it is just a little harder when he hurts; actually he does great when he hurts – it just makes me sad!! The doctor that was in this weekend is LDS and saw some of the posters and scriptures hanging on his walls, he asked Ryan if he was LDS. He talked to Ryan about where he had gone to school and a few other things, then asked him if one of the LDS Wards in the area had been by and if so, had they brought in the Sacrament. Ryan told him that the Singles Ward in the area had been in and were bringing him the Sacrament each week. The doctor asked Ryan if he knew about the Singles Ward Relief Society (this is the women’s organization in our church); he said that he could send them by if they hadn’t been here. Meredith was sitting at the side of his bed and Ryan told the doctor, “That’s OK, I have Meredith!!” The doctor looked at her and said, “Oh, I thought she was your sister!!” He then saw that she was holding his hand and said, “Ok, I will take my foot out of my mouth now!!” It was pretty funny – she has been accused of being his sister more than once. When the doctor left, Ryan told Meredith that she was the best sister he had ever had!! The Pulmonary doctor that was on call this weekend came by to check on Ryan. He has been in a couple of times when Meredith was not here. He and Ryan talked for a bit and when he left, he told Ryan that he needed to keep her around because his smile was bigger when she was nearby!! All the techs, nurses, and docs have fallen in love with her. She is a sweetheart!! They were able to have a “date” on Saturday. Craig has a “big screen” room in the recreational area that is in the East Wing across the bridge, so we reserved it and Ryan and Meredith watched Phantom of the Opera – with surround sound. Since Meredith hasn’t been signed off in all of the “areas,” I had to accompany them (what are mothers for?)!! I hadn’t seen the “Phantom” so I really enjoyed the date!! I really do feel bad that their relationship has been an open book!!! Meredith was able to get signed off on respiratory this weekend, so she is on her way. Ryan wanted to take Meredith to an Ice Cream Shop that is across the street from the hospital. We were headed that direction when he got dizzy, he sometimes has a problem with that, I tried turning up his oxygen tank but found that it was empty and then the ventilator started “chirping” which means that it is on low battery. We decided that we had better come back to his room and “plug” him in and get a new oxygen tank! He still wasn’t feeling very good, so he went right to sleep and slept soundly for a few hours. We’ll (they’ll) have to do ice cream another day!! Meredith is coming back the end of June; she will work on getting all the “areas” passed off – then they will be able to go get ice cream by themselves!! Meredith had to leave this afternoon; she and Ryan wanted her to stay as long as possible, so we planned the trek to the airport down to the minute!! We got there just in time – for her to miss her flight!! They bumped her to the next flight, but later came an announcement that the flight had been delayed because of mechanical problems. She got bumped to a flight three hours later; she called and we decided that it would be a “blessing” if she got bumped again – that way she could stay overnight again. In truth, it was poor planning on our part!! But, they had fun!! Well, I got a call about 6:00 pm – she was still here!! America West had mechanical problems with the Phoenix flight, so she will be leaving in the morning. She said she will “have to pay” for missing here class, but it is worth it!! A cousin of mine, James Payne, sent this quote from Victor Hugo in an e-mail and I thought I would share it.

"Have courage for the great sorrows of life, and patience for the small ones and when you have laboriously accomplished your daily task, go to sleep in peace. God is awake."

I was reading in The Book of Mormon in The Book of Ether where it talks about the Brother of Jared having faith to move mountains and because his faith was so great, God could not withhold anything from his sight. (Ether 12:21) I also read in the last chapter of Ether, Ether 15:34 where he said, “Whether the Lord will that I be translated, or that I suffer the will of the Lord in the flesh, it mattereth not, if it so be that I am saved in the kingdom of God.” I read these scriptures to Ryan and told him that it doesn’t matter how we are saved in the kingdom of God, whether it be because we are blind, lame, or paralyzed, what matters is that we “enter.” Our testimonies are strengthened by this accident. We continue to be strong and try to have the faith, as the Brother of Jared, and hope that our Heavenly Father will bless Ryan and allow him to walk into His kingdom, but if it is His will that he does not have the use of his body, we will continue to “sleep in peace” bearing witness of Him and know that He is continually “awake” and watching over us. Love, Dean, Terry and Ryan

Silky Soft

We like boring!!! Ryan had his “tulip” filter removed today! He hadn’t felt good most of the night. He was feeling cold, then hot, cold, then hot and achy all over. The docs tell us that hopefully at some point those symptoms will subside. He says his body hurts all over and he has a burning sensation – he compares it to a sunburn under his skin! The docs also tell us that because of the spinal cord injury his brain says he hurts, but is not able to let him pinpoint the pain. Because he was on orders not to eat anything by mouth since 11:00 pm last night, he couldn’t take any pain medication; then he took meds on an empty stomach after the surgery which caused an upset tummy. We finally got him to eat a peanut butter and jelly sandwich; hopefully the pain meds will kick in soon and he will be able to get some sleep tonight.

After the surgery to remove the filter, Roberta the Respiratory Therapist, came in and wanted to change out his trach. They put in a new trach every two weeks. I hadn’t seen it done, so I asked her if I could stay and see how the change was made. She said, “Sure, you will need to know how to change it out if Ryan ends up going home with one!! I thought, OK learn all you can so if need be I can do all of this when we go home. The procedure began, she got the new trach ready by deflating the “cuff,” sopped it with a lidocaine jell to help with the pain, then she opened the neck tie and placed it behind his neck, next she opened up several packages of gauze pads, deflated the cuff on the trach in place and then detached the “Velcro strip” which held the vent line stationary. She then said, “Ryan, are you ready Honey?” She always calls him honey!! He said, “Yes”. She then pulled the trach from his neck and my “eyes bulged” as I saw blood and mucus spurt out (there wasn’t that much “stuff” but it was gross) of the hole in his neck!!! She kept saying, “I’m sorry honey, I’m sorry, I’m almost done.” She then pushed the new trach into place, attached the neck tie and the Velcro strip. She asked Ryan how he was doing, he said, “OK” as he was swallowing and trying to catch his breath!! This all took place in a matter of seconds!! As I was standing there watching, I felt my head get lighter and lighter, Roberta looked at me and said, “It gets easier as the trachea heals – there won’t be any blood when we can get a stainless steal trach in place.” She said that the cuff on the trach he is using now was what caused the blood as it scrapes the trachea lining when the old one is removed and a new one put in. At that point, I had to sit down, I was glad there was a chair right next to the bed because I was thinking, I can’t faint, Roberta doesn’t need a “wimp” on her hands while she is trying to keep Ryan breathing!!! She cleaned up the trach area and put a new gauze pad underneath the new trach, all while I was trying to keep breathing!! I hope and pray we can get off the vent and get rid of the trach!!!

Before Ryan went back up to BYU-I he had worked for his Uncle Mike roofing houses. His hands and tips of his fingers were very calloused. When they had to “poke” his fingers for blood sugar samples, they would have to poke him several times before he bled enough to get a sample. Since he hasn’t been able to do anything with his hands, the skin is drying and peeling. The OT came in today to clean his hands. She soaked them in warm water, rubbed the dried skin off with a towel and then put lotion on (I don’t think Ryan has ever used lotion on his hands). Ryan was mortified!! He doesn’t want soft hands, but they have to get the dried skin off or it can become a problem. Later in the day, the nurse came in to give him his meds. Ryan likes to take all of his meds at the same time; he is on five or six different pills, some large some small. The nurse started giving them to him one at a time and he said, “Can I take them all together?” The nurse said, “Sure man, you are a pill taking stud”! He laughed and I thought of the lotion earlier in the day!,

He is smiling a little tonight; we are hoping he feels better. We are grateful to have him, soft hands and all!!

Love,

Dean, Terry and Ryan

Guessing Games

Today was kind of boring compared to yesterday!!! Ryan was scheduled to go to out-patient surgery today at 1:00 pm to have the “filter” removed. We got back to the room at about 12:30 from Physical Therapy and got him transferred to the bed, got the portable ventilator w/battery connected, removed the extension from the end of his bed, etc. etc. We patiently waited!! Two o’clock came, three o’clock came and then the nurse came in and said that the surgical room was backlogged and she asked me if it would be alright if they waited until morning!!! I wonder what she would have done if Ryan would have said, “I think we need to go ahead and truck on down there today!!!” We are scheduled for 9:00 tomorrow morning! The down side to changing the schedule is that Ryan can’t eat anything for about twelve hours prior to the procedure. So, he didn’t get to eat from last night at about 11:00 pm until 3:15 pm today. He ate dinner tonight, but is now on liquids until 11:00 pm and then no food or liquids until after the surgery. No wonder he can’t keep his calories up!!! Actually, his appetite is back. He eats three meals a day and then starts wanting to snack about 9:00 pm – and doesn’t quit until about 11:00. The nutritionist came in today and asked how his eating was going, I told her that he seemed to have an appetite and was doing better. I then showed her the “little grocery” store that we had on the shelf which we used when the kitchen was closed!! We think that something is wrong with the scales. He weighted in at 182 last week, this week he weighted in at 163. The nurse was really concerned that he had lost 20 pounds in one week! So she fed him some “Jivity” thru the “tummy tube” before it was removed. Ryan has been trying so hard to eat good meals and we have forced him to drink a “boost” drink if he doesn’t feel like eating or eats less than half of a meal; he was really disappointed when the nurse fed him the Jivity. We all thought that that would mean that the tube would stay in longer, but luckily they took it out. Today he was weighted and he has gained 30 pounds!!! I think that scales need to be calibrated. I know that he has lost some weight; but we can’t figure out how much! Meredith was able to come back to Denver today – so life is good!! She is such an angel. She really lifts Ryan’s spirits when she is here. Dean left to go home tonight, Lisa is having a “going away” party tomorrow night and we thought that one of us should be there!!! She is still a teenager!! Dean will come back Monday and then I will go to Farmington and get Lisa packed and head to BYU-Idaho on Wednesday. She starts school June 27. It is going to be a crazy week!! Last night the tech’s came in to take his vitals and Ryan said he would like to guess his temperature and blood pressure. The tech played along with him. Ryan guessed his tempt to be 97.8 and it was 97.5! He guessed his blood pressure to be 116/91 and it was 120/87. The tech was amazed that Ryan could get that close. She praised him for knowing his body so well. Ryan got this grin on his face and then told here that another tech had just been in a few minutes earlier to take his vitals!! We all had a great laugh – even the tech! I spoke with the Respiratory Therapist tonight to see what progress, if any, Ryan has made with his breathing. She said that she hadn’t seen any change with him trying to breathe on his own. She did say it was early yet and youth was on his side, so continue praying and keep your fingers crossed!! We have crossed our fingers, elbows, knees and toes!! And, we will continue to fervently pray. Love, Dean, Terry and Ryan

Gentlemen Start Your Engines!

We did it!! Ryan, Dean, and I went out to eat tonight to a great Chinese Food Buffet. Ryan had butterflies in his tummy before he left (and so did we), but he was smiling and enjoying himself the whole time!! Claire and Cindy, the Recreational Therapist and Nurse, were great. They told stories of the old days at Craig when nobody would come to the “outings” unless there was beer! We are glad things have changed and actually so are they. Roberta, the Respiratory Therapist went with us to make sure Ryan kept breathing!! He was the only one on a ventilator. We went on a “van” with two other patients, Jim, who had been in a motorcycle accident and was a paraplegic; he had upper body movement so he was able to power his chair by turning the wheels with his hands and arms. Deb, was taking her son to school on a farm road in Montana when another car came from a side dirt road and T-boned her old truck. She had a “soft” neck brace and had been on a ventilator, but has just recently been taken off. She has some arm control and can “drive” her motorized wheelchair with what they call a t-bar (it looks like a football goal post). She does not have much control of her hands and was not able to feed herself. Ryan was the only one that has no feeling from his neck or right below his jawbone down. The van can seat up to 14 people including three or four patients in wheelchairs. It has a wheelchair lift on the side near the back to load/unload patients and then a door towards the front to allow family members to get on. They had Ryan “back” in!!! Imagine, backing-up a car or truck with no rearview mirrors. Ryan was having trouble backing-up and Cindy asked him if he wanted to have them wheel him on manually, he said yes. Then Claire said, “Ryan why don't you try it, I will talk you thru this.” He agreed. We are learning that he will do what ever he is asked, we just have to ask!! She told him to use his toes as a reference, because that is what he can see with the limitations of his halo. So, she would say, toes right, toes left, toes straight, etc. It took him a little bit but he got onto the lift. Come to find out, his filter was plugged again – therefore, the difficulty in driving. Dean took the filter off and he was on his way again. They then raised him up to the level of the floor of the van and he “backed on in” and turned his chair to face the front of the van. They have the patients back-in because they need the weight of the wheelchair to the back of the lift (something to do with the hydraulic lift – men things!). After he got into the van, they “anchored” his chair down with four straps to the floor of the van and then put a “seat belt” around his chest to make sure he was secure in the chair; this was in addition to the rainbow strap he usually wears. The patients sit so high in the van, that they have a hard time seeing out, but it was good to be out of the hospital nonetheless. We drove for about ten minutes, which is not too long for those of us who can adjust ourselves in the car seat. It was a little bumpy. Deb seemed to have the hardest time with her neck being jarred somewhat. We made it to the restaurant and Claire told us that the owners came into Americans with Disabilities Act (ADA) compliance by pouring a little, and I mean little, concrete pad at the back side walk. We went thru the backyard and then thru the back entrance to the dining room. I told Ryan it was like going home, who else had access to the back door but family!!! It took a few minutes to get situated, with three wheelchairs; but Claire and Cindy were very conscientious about making sure that everyone was able to sit at the same table and see each other. At first, the waitress wanted to put us back in a private dining area but we were “allowed” to sit in the main dining area. Deb and Ryan could not get their knees under the table, as the base of their wheelchairs is too high. Ryan’s knees were about four inches above the table; so we took up quiet a bit of space!! While we were there, a nice gentleman about 100(!) years old (he has two great-great grandchildren) walked up to Ryan and whispered in his ear, “The food is great, isn’t it” he then went over and gave Deb a kiss on the cheek; Ryan said, “Boy, I’m glad he didn’t kiss me!!” Dean was helping him eat and he got a crab shell in his mouth, he wanted to spit it out so Dean put the plate up to his mouth – Ryan spit and the shell went flying across his lap!! We all got a laugh – even Ryan! Claire reminded us that "what goes on on outings stays on outings!!" We had a nice meal; Ryan loved the company and the food – even the rice! For those of you who don’t know, Ryan HATES fish and rice. Dean had told him all his life that he would serve a mission in an area where all they ate was fish and rice. Sure enough, he went to the Philippines!!! He learned to like rice, but still cannot handle fish! Claire told us of a time that some of the patients wanted to go to the car races, so she called and made all the arrangements. Most particularly, where the best access and parking was for the racetrack so the patients could get in and out of the van without too much difficulty. She got the instructions and she said she had written them down and followed them to a “T.” When she got there, she went thru the gate, followed the prescribe directions; she went up a ramp and low and behold she was in line to race!! There was no way to back out so she had to go to the starting line and then go out thru an exit across the tracks. The patients that were with her wanted to paint a number on the van and “put the pedal to the metal!!” We died laughing!! She has been with Craig for 20+ years; she has some stories to tell! After we got back, she encouraged Ryan to sign up for more of the outings; she said the first one was always the toughest! We have been asking about the filter that the docs in Idaho Falls had put in Ryan to avoid blood clots, trying to understand if it was a permanent filter or not. Dr. Balazy came in today, said they had looked at the x-rays they took to determine if the feeding tube was “stitched” in, and concluded that the filter was the type (tulip) that needed to be turned every two to three weeks for the first couple of months so that it doesn’t become lodged in a stationary position. He recommended that it be taken out. He said that it is like a fishhook or an umbrella so they cannot go in thru the groin to pull it out. They will have to go in thru the neck/shoulder and get it; pulling it in the right direction. He said that most hospitals put it in the event they have to do surgery. He said that Craig is learning that they can control the blood clots with blood thinner meds and have fewer problems down the road. So, tomorrow he is scheduled for outpatient surgery to have it removed. By the way, one side benefit, if you can call it that, since he is paralyzed from the neck down and can’t feel anything, they don’t have to use anesthetics!! Oh, the benefits!! We are down to the halo and trach!! I told him today that we were at the half-way mark on the calendar for his halo removal; then he will fall from grace!!! We continue to pray that we will be able to get rid of the trach and ventilator!! His new bishop, Bishop Hatch, and a member of the Denver Stake Presidency came to visit Ryan tonight. They had a real nice visit and encouraged Ryan to continue to be faithful and trust in the Lord; as he can perform miracles. They also told him to keep smiling! I am sure it is just me, being his mother and all, but his eyes seem to have a different sparkle to them. I cannot explain it, but when he smiles his eyes radiate his faith and testimony in our Heavenly Father and his love for his Savior, Jesus Christ! We love you all. Thanks for the continued support, cards, letters, and e-mails. IT MEANS SO MUCH. Love, Dean, Terry and Ryan

Taco Bell and Chinese Food

Denver is gorgeous, after all the rain they have had everything is so beautiful and green. A new OT came in at 9:00 for Ryan’s class and she said that it would be good for Ryan to practice “driving” his wheelchair. She asked him if he would like to practice in the halls??!!! Ryan said, “I went outside yesterday” and she said, “Oh, you have been outside?? You have been in the elevators?? You have been on gravel??” Ryan continued nodding, YES!! She said, “Well let’s go outside because it is such a nice day!” I think she was trying to think of what to do!!! We got outside and she asked Ryan if he had driven on grass, he said, “No!” Great she thought (I could see the wheels turning) and then she said, “Let’s take a jaunt over here on the grass!” They are trying to expose Ryan to as many different terrains as possible, so that when he gets out into the “real world” he will have a quite a bit of confidence in driving the wheelchair. We enjoyed being outside!! And Ryan will continue to train his new techs!! There are several new “techs” on the floor as of this week; summer interns! One gentleman, he is about my age – he said he had three boys 25 to 20 – that’s how I know he is about my age!! He was working for Pepsi doing financial analysis and strategizing on how to sell more Pepsi than Coke, but decided that wasn’t really what he wanted to do so he went to nursing school (at my age)!! He came in while Ryan was asleep to take his vitals. He said that it was really hard to be here at Craig and see all the young kids who have been injured (most of the patients are young; my guess is between 17 and 30 years of age – or at least way younger than me!). He asked how Ryan got hurt. As I was telling him, he got somewhat emotional – and then apologized – he said Ryan was such a good looking kid and he looked around the room and saw all the support and LOVE on the walls and said that he must have a great family and support system. I said, “Yes, he is a very loved kid!!” We will mark this day on our calendar!!! Ryan got his feeding tube out of his stomach! He is able to eat enough calories and proteins by mouth – so out came the tube. I ran to get Ryan some Taco Bell, cause the food from the cafeteria wasn’t very appealing to him; leg of lamb, vegetable burritos, or hot dog and fries!!! While I was gone, the surgeon came into his room and snipped the end of the tube and then snipped the stitch that was holding it to the outer skin and yanked (or pulled) it out! He then put a little gauze pad over the “hole” and said, “have a great day!!” It took all of about five minutes! I wonder how much his bill will be? The body is an amazing thing. He said it would close in 24 to 48 hours. We are so glad, and Ryan is too, that he can eat a regular diet rather than having to drink “Jivity Shakes!” Dean compared the removal of the feeding tube to Neil Armstrong’s infamous statement, “That’s one small step for man, one giant leap for mankind”. Ryan’s initial procedure seems very insignificant, but the implications are huge in that he is on his own as far as nutrition goes. Well, the Thursday adventure is off!! Ryan was the only one in the group of four that is healthy enough to go. The other three patients are struggling with infections and respiratory problems. We are learning that change is constant!! Since they can’t go on the outing, Claire with Recreational Therapy talked, rather begged, Ryan to go out to a Chinese Restaurant tomorrow night with several of the patients. Ryan was very reluctant, since he has to be fed. It is best that he wears loose fitting clothes, only because it is easier to get him dressed and undressed with the “halo” and the feeding tube (which is no longer) so I went out and bought him a pair of lightweight sweat pants for the outing. He has NEVER worn sweatpants out in public, unless he was going or coming from the gym; needless to say, he wasn’t overly thrilled. Another “first.” Interestingly enough, I think Ryan is the only patient going who is on a ventilator. He will have his own personal respiratory therapist and physical therapist, in the event that something goes wrong. We continue to be amazed at the effort this hospital goes too to help their patients get back into the mainstream. We are taking “small steps” sometimes even baby steps; but we are keeping our “chin up.” To be honest, it is easier to stay at the hospital; when I go out in the “real world” to get groceries or sweatpants (!) and see young men walking and running and I am reminded that my handsome, young Ryan, according to medical definitions, may not be able to do that. We continue to pray for miracles. Each night before we retire to our apartment, we take turns saying a prayer with Ryan. Dean always asks Ryan who he would like to say the prayer, last night he did. He gave a beautiful prayer and his faith continues to be strong. We know that our Heavenly Father is watching over us. Each day, we have people tells us that they are praying for Ryan; today, we met two new people here in the hospital that said they would include Ryan in their prayers. We THANK ALL OF YOU. Love, Dean, Terry and Ryan

Suprise Visit

The day started out a little earlier than usual, Ryan had a class at 10:00 a.m. this morning and tomorrow morning he has a class at 9:00 a.m.! I think they are just trying to get mom and dad up earlier! We try to be in his room between 8:30 and 9:00, so we can help him with his breakfast and visit before he goes off to all his scheduled activities!! Eighty-thirty or nine seems a little late to some, but we don’t usually get to our room until midnight or later!!! Lisa, the Craig psychologist came by today to talk to Ryan and I was sitting in the “recliner” chair and she looked at me and said, “You look really tired!” She is right!!! Ryan took a “walk” outside today with the Occupational Therapist. They wanted to go on a little rougher terrain than the just tile floors in the hospital or out on the sidewalks. He got into the elevator OK and was trying to “back out” when we got to the first floor, but was having a hard time getting the wheelchair to reverse and turn to the left. There were people accumulating to get into the elevator and it made Ryan somewhat uneasy (he hates an audience), so he just turned right, turning into a dead end area, but moving away from the mass of people! The OT wondered what he was doing!! We got outside and he crossed the street OK, but then had a problem getting the wheelchair to steer to the left and go up the incline from the street to the sidewalk. After a bit, the OT determined that his “sip and puff” straw was worn out and she put a new one on and he took off like a champ!!

The "Bridge" at Craig Hospital

Craig has done a phenomenal job at trying to help their patients be as independent as possible. They have built several little “garden” areas that the patients can drive too, some with easy access and then moving on to areas that are more difficult. The one he tried today had a little incline and a gravel path; he just “puffed and sipped” right up to the sitting area without a problem. The alarm started going off on the ventilator so we needed to get inside to get him plugged in, so he could breath! And to also figure out what the problem was. Come to find out, the battery from the wheelchair to the ventilator was not plugged in; it was running on reserve. I think that they really do this so Dean and I are sure to know how all of this works – School of Hard Knocks!! By the way, here at Craig, they put large mirrors about half way down from the ceiling in the elevators. When we first got here, we thought it was kind of weird; but come to find out they are set at eye level for those in wheelchairs!! Who’d a thunk??!! It does make it easy for those in wheelchairs to be able to see what is behind them. You either have to back-in or back-out of an elevator in a most wheelchairs! We went to his Tetra Topics Class, and learned more than I have ever wanted to know about bladder maintenance! We learned about several different catheter options and how to protect the kidneys and bladder as well as signs to look for to try and prevent bladder/kidney infections. We are learning that the bladder is one of the primary concerns in SCI patients; infections or damage to the bladder can cause so many other problems. Actually, it is all very interesting, I just wish I would have gone to nursing school to learn it, rather than learning it this way!!! I did learn that Dr. Pepper (soda pop) is one of the worst things you can do for your bladder; this medical stuff is for the birds!!! Mom told me that I needed to get a good one-a-day vitamin and take so that I don’t get too run down; I told her that I see the “Dr” every hour!!! After we were done with class, we wanted Ryan to try and stay up for five and one-half hours so he can be ready for his “venture” on Thursday. He was so tired. We also had alternative motives; we have become very deceiving since he got in the accident. We received a call about 1:30 from a Billy Thompson and a Larry Brunson. Dean answered the phone and Mr. Thompson said, “Hi, this is Billy Thompson and I wanted to check to see how Ryan was doing!” We have had a couple of prank calls wanting to sell us some type of vitamin or herb that will cure Ryan, so Dean said, “Who is calling??” Mr. Thompson said, “Who is this?” Dean said, “This is Dad.” Billy then said, “I am with the Denver Broncos and we would like to come and visit Ryan, if that would be all right?” Alright, YES!!! Dean and I were so excited; Dean asked me if we should tell Ryan. I said, “No let’s surprise him.” (We are awful parents!!) Howard, Ryan’s tech for this afternoon was in on the surprise too, He told Ryan that he had other things to do after his class, but as soon as he was able he would get Ryan transferred to bed, hoping it wouldn’t be too long before they came. Billy and Larry (Larry is from Cortez) walked in and Ryan wasn’t sure who they were until they identified themselves as Denver Broncos. They brought him an autographed football!! They were so gracious and kind and visited with Ryan for about an hour. They talked about their careers with the Broncos and who was drafted and who they have recruited for this next season. Ryan smiled the entire time they were here and then couldn’t relax for an hour or so!!! We want to thank our friend in Farmington who arranged the visit. By the way, Ryan said that the football “was way” more valuable than the palm pilot so we will take it to our apartment and put it in a safe. Both Billy and Larry signed the football; I was turning it in the box so Ryan could see both signatures, he said (and his cuff was down, so I heard him!), “Mom, don’t touch it!!” He loves those Broncos!!!! The Scroll, the BYU-Idaho student newspaper published a follow-up article on Ryan. If you're interested you can read it here. He was up for six hours today and had his cuff down for eight! We love and cherish the good days!!!! Dean, Terry and Ryan

Venturing Outside

We have been here long enough; we are learning that the weekends at Craig slow way down. In fact, they come to a complete halt. Just when we get into the routine of things during the week, there is so much planned; classes, therapy, etc. etc., and then the weekend hits and we have to figure out what to do!!! Ryan is feeling a little better after the pneumonia; he wanted to get up and out for a while. Dean and I have “checked off all of the boxes” and so we were able to take Ryan for a little cruise around the campus. We can go in about a two-block radius, which is just around Craig and the Swedish Hospital. That is probably a good thing, since we really don’t have a clue what we are doing!! We have to sign out so the staff knows where we are in case we have a problem. We had a good time, Christina and Riley came to visit from Utah so they went with us and we had a great visit. It is hard for Ryan to see people he has not seen for the first time – all the emotions of his limitations surface!! Once we get thru the initial few minutes, things kind of settle in. This is still all so “new” for him!! It was great to be outside and see the sunshine; it was a little cool, but the sun was smiling on us. Courtney and her friend, Hanna, from school came later in the day; she had a flat tire on her way in from Laramie, WY and so we all had a good laugh as she told the story about a guy named Thor. When we got back to our room, Dean noticed that my purse was in the adjacent bathroom. He asked me if I had left it in there, I said no. I went thru it and found that someone else had also gone thru it!!! It took me a minute, but I noticed that my palm pilot was missing!!! You think you would be free from this kind of thing while in the hospital!! Luckily, (tender mercy) I had thought to take my wallet out of my purse and “hide” it in a drawer in the room, so at least I did not have to deal with the notification/replacement of drivers’ license, credit cards, checking accounts, etc. etc. Actually, they would have been really disappointed if they would have found my wallet, just a couple of pictures of my kids and my new grandbaby!!! They could have hung those in their house; after all, they are all so cute!! We are hoping that Ryan will get to go on the “outing” this Thursday (we will be sure and take all the valuables with us!). It will be good for him to get a few miles away from the hospital. He is somewhat apprehensive to go, but he said that he knows that he has to “do it!” He has a quote from his mission president hanging over his bed that says, “The only success you may sometimes feel is to continue on when you feel there is no success.” At times, Ryan feels that he has had some progress or successes, then when he had the set back on Thursday he feels that he takes a few steps backwards. Dean reminded him that in order to go backwards, you first have to move forward so “remember the steps which you have taken.” I have been thinking about all the support and LOVE which we have received and cannot tell all of you enough how much we appreciate it. I would like to share a scripture which I have been reminded of during the last couple of days. “…As ye are desirous to come into the fold of God, and to be called his people, and are willing to bear one another’s burdens, that they may be light; Yea, and are willing to mourn with those that mourn; yea, and comfort those that stand in need of comfort….” Mosiah 18:8-9. We have had so many ask what they can do to help, we truly appreciate all of you for helping to carry Ryan’s burden; we truly FEEL the love and “comfort” from all your prayers, e-mails, calls, etc. etc., this is a GREAT help. THANKS and we love you all. Sincerely, Dean, Terry and Ryan

Cuffs and Suctioning

Well, too much of a good thing can be a bad thing!! Ryan had a couple of great days and then, he bottomed out!!! Yesterday, he just couldn’t go anymore and about 2:30 during his “Tetra Topics” class, he had to leave and be transferred back to bed. Tetraplegic is the same as quadriplegic; therefore, Tetra Topics – aren’t’ they clever? It sounds better than Quad Topics! He started getting chills (his temp was at 95) so we covered him with blankets then not to much later, he was burning up (temp of 100.8); so here come the ice packs! He couldn’t get comfortable and we had to suction him more than we have had to in weeks. Dean and I are getting pretty good at suctioning. Last night was the worst night he has had since we have been here. I asked him if it would be ok if I stayed and slept in the recliner chair because I was worried about him (we are trying to find ways that he can give him some control – so we try and ask for permission to do things!). He said, “No mom, you need to go with dad and get some sleep.” I said, “Well, let me stay just until you go into a deep sleep,” he then closed his eyes really tight and said, “OK mom, I’m asleep!!” As the sweet nurse in ICU at Eastern Idaho Regional Medical Center said, “He carries you when you are weak and accompanies you when you are strong.” He has such a fun sense of humor even when he feels terrible!! I guess I didn’t give him as much control as we had talked about, since I ended up in the recliner all night. Ryan made me go take a nap this afternoon!! I don’t know if we have talked about suctioning before or not, if so just close the website, NOW! Because Ryan can’t cough or get the “junk” out of his lungs we have to suction him. This involves taking a rubber catheter (⅛” – ¼” in diameter, sewing terms, or as Dean says, 14 gauge in man terms!). It is open at the end and has a small opening or hole on the side near the bottom. It is about twelve to fourteen inches in length.
We “glove up” keeping one of our hands as the dominate one. This hand is supposed to touch only the catheter. We use the dominate hand to hold the catheter which eliminates (or at least we try) the introduction of any germs or contaminants into his trachea. We push it thru the trach until we hit “bottom”, which can be at the base of the lungs or where the “secretion” plug is located, depending on how thick or thin the secretion plug is. The catheter is connected to a suction hose. There is a valve in the catheter that we cover with our non-dominate hand to create the suction. As we withdraw the catheter we twist it as we slowly pull it out, while creating suction by covering the valve; hopefully getting some of the mucus. We usually do this two or three times during one suctioning. Last night he was suctioned about five times from 5:30 to 10:00 p.m. and again from 3:30 pm to about 6:00 a.m. (long night)! When we do the suctioning, not only are we trying to get the secretions out, but we also pull all the oxygen from his lungs so it is very uncomfortable – he says it doesn’t hurt, but it takes him a second or two to catch a breath! The docs ordered that if Ryan’s temperature rises above 100.5 then they need to figure out what is causing it. Because he was having such a bad time, early this morning at about 6:30, they came in and took x-rays of his lungs, blood samples, urine samples and some kind of sample from his IV. By the way, I think I said the IV was gone, I meant the machine and pole, he still has the IV in his arm (called a pic line) which will remain in the event they need to use it – which we did today! Bingo, the x-rays of his lungs showed that he has pneumonia in his right lung. So, here come the antibiotics, saline to help flush his system, etc. etc. They keep a pretty close watch on him, so they catch things pretty quickly. He is feeling much better this afternoon. When they come in and turn him every two and a half hours, it loosens up the mucus plugs. That is good, but then it causes him to choke. If they don’t get it quickly, he can quit breathing – which he did and we had to use the “ambu” bag again!! The tech that was helping to get him breathing again couldn’t believe how calm Ryan was. She talked to him after and asked him how he stays so calm. He told her “practice!” He is such a mess!!! I told his doctor that the ONLY good thing about Monday night when I had the first experience with the ambu bag was that now I know how to use it and that I can if I need too!! The tech that was here when we had to use the ambu bag, I don’t know her name, had a “trainee” with her. This young lady, Lindsey, has one year left of nursing school and this was the first time she had seen a patient “quit breathing!” It really startled her; she saw first hand what a patient actually does rather then reading it in a textbook. Boy, we are way ahead of her; Oh, I forgot we haven’t read the textbooks!!! I think part of her emotions were based on Ryan being right near her age, and then seeing all the cards, posters, and LOVE hanging all over his walls. I think she saw that he is actually a real person and not a diagram in a textbook. Dean talked with her later and she said that she had “calmed down” and was OK. I guess the first time can be hard for everyone!! He was so hungry tonight, after not eating much for 24 hours, he ate a 12” seafood and crab sandwich from Subway! The food here at the hospital is actually quite good, but after being here a month, the menus have started thru the second rotation. Being on a vent, the taste buds and smells don’t work real well, if at all. Because the air is going thru the trach rather than thru the nose and mouth (across the taste buds) he doesn’t have a sense of smell or taste, but he said that the sandwich tasted really good!! Several people have asked about the “cuff” opening. Here is a picture of one. The cuff guards against aspiration of fluids, food, or saliva into the lungs. The “dye” testing that they did when Ryan first got here, which luckily (tender mercy) determined that he is able to get air and foods down the right passageways, will eventually negate the need for the cuff. The cuff or balloon like thing at the bottom is deflated to allow Ryan to talk. Deflating the cuff allows air to flow up thru the voice box so that he can make sounds and speak. Now he has to re-train his throat muscles to allow air to move thru the voice box when talking and keep air down in his lungs when not. If he lets too much air up thru the voice box, he doesn’t get enough air into his lungs to keep breathing. He has to concentrate hard on talking, because we talk when we let out a breath. Tricky, huh. Dean says it’s like holding your head out a car window going 40-miles an hour and trying to talk: DON”T TRY THIS AT HOME!!! Hopefully and with blessings from Heaven, Ryan’s lungs will develop enough that he won’t have to have a trach. Until then, the goal is to help his lungs gain enough strength that we can even get rid of the trach with the cuff and go to a stainless steel trach, which doesn’t have a cuff. Then he will be able to talk 24/7. The stainless steel trach is much better for long-term use; it reduces infection. It takes all kinds to make the world “go round!” As we are trying to get Ryan’s chair ordered, the wheelchair-ordering guru, Pat, asked Ryan what color of straps he wanted on his chair. The chair that he is using and most of the chairs at Craig have rainbow colored straps. Ryan said he didn’t think he wanted rainbow colored, he would just stick with black (I didn’t train him very will in the color coordinating area – he is so plain!). Pat asked him if he had noticed bright purple colored seat cushion covers on some of the wheel chairs. Pat said that Craig had to go with the rainbow colored straps and the bright purple seat covers because they were finding that people from the outside were taking the straps and pads off of the chairs, leaving their old worn out stuff, when the chairs were left alone at night. Having the rainbow straps and purple seat covers in the community “flashes” Craig Hospital. He said that since they have gone to the more “colorful” straps and pads, they haven’t missed as many. Pat said that one night they found an old worn out chair in one of the patients rooms where his new chair had been the day before – pretty bold, huh! Ryan is feeling much better tonight and so I guess I will have to go sleep with Dean!!! We just wish we could take the pain away. We love you all and continue to thank our Heavenly Father for so many blessing in you as our family and friends. With love, Dean, Terry and Ryan

Just a Quick Note

Ryan has had a good day today. He was up in his chair for four and half hours and had his cuff down for eight hours today and another two hours tonight. We went to several classes with him today. One was a tech lab: he was shown how to turn on lights, computers, TV’s, etc. Some of the equipment can use the sip and puff technique and others would use voice activation. It is expanding our very limited vision of what people with limitations can do. The other class we went to was his Recreational Therapy Class. There are four people in his group and they are planning an outing for next week on Thursday, June 16th. He will miss making decorative bath oils in the recreation room!!! They are going to go to Evergreen(?) Lake, which is right near the hospital. They will be out of the hospital for about four hours. One of the requirements is that Ryan has to be able to sit in his chair for five and half hours straight. He is working up to that level so that he will be able to go. He told me today that he is scared to go out. I asked him if he was scared to leave the hospital because he is secure here or if he is concerned about other people seeing him for the first time. He said that it was because he would be out in public for the first time, but he knew he needed to do it. It seems like the first for everything is the hardest. It gets a little easier each time after that. The kids from Maplewood Ward (I call them kids because they are 20 years younger than I am) have been so good to come and see Ryan. He usually has a visit from someone in the ward at least every other day, if not everyday. They are great! Ryan said tonight that he can’t believe that they come to see him, because they don’t even know him. They talk about what they are doing, where they are working, what classes they are taking at school, where they from, and their families, etc. He is really grateful to them for being so supportive and kind. Scott has been out of town all week at Scout camp. I asked him how many scouts were going, and he said, "Two." I asked how many leaders, he said, "Five!!!" I think scout camp is really for the "big boys!" Becky (Scott’s wife, whom we love dearly!) has been posting the updates to the blog site. She is leaving to a conference in Phoenix the next couple of days, so we won’t have a post for a day or so. Becky, thanks for your help!! We continue to be amazed at the number of friends, new and old, and family who continue to bless our lives and help us thru this. We can’t say enough how much we appreciate it. Love, Dean, Terry and Ryan

Vincero!

Terry got her wish and got to have some input on the color of Ryan’s power wheelchair, which was ordered for him today. She tried to convince Ryan that bubblegum pink was the "in color" but he would have none of it. Instead he ordered midnight blue. It takes about 6 weeks for the customized chair to come in, assuming the insurance company will approve it (aprox. $20,000.00 dollars). They measured Ryan from head to foot to make sure the chair will properly fit him. This particular model even has Monroe shocks built in the wheels to help absorb the bumps as he goes out in the real world. President George Johnson (he and his wife came to visit Ryan over Memorial Day) was Ryan’s Mission President while he served a mission for the Church of Jesus Christ of Latter-day Saints in the Philippines during 2001 – 2003. He sent Ryan a nice letter today and with his and Ryan’s permission, I am sharing parts of his letter. He stated very well some of the feelings and lessons that we are learning. "My heart aches for you because of your additional suffering. Though it is you and not me enduring your agony I find some solace in what the Savior said to Joseph Smith: "My son, peace be unto thy soul; thine adversity and thine afflictions shall be but a small moment; And then, if thou endure it well, God shall exalt thee on high…all these things shall give thee experience, and shall be for thy good. The Son on Man hath descended below them all. Are thou greater than he?" Please do not grow weary of the counsel from those of us who love you so much. I know things are easier said than done, but the truth is we ache to help you. We are doing the best we know how. In our praying it is well to remember that the purpose of prayer is not to change the mind and will of God. The purpose of prayer is to put our will in harmony with God’s will, and "to secure for ourselves blessings that God is already willing to grant, but that are made conditional on our asking for them." (Bible Dictionary, pp 752-753). The thoughtful observer will ask, "If God stands so ready to bless you to recover from your injury, why did He allow it to happen in the first place?" This is where your understanding of the atonement is so meaningful. The atonement is a plan of happiness, not a plan of easiness. It is a plan of tutoring and stretching but not painlessness. The more unremittingly the violin string is stretched the more sublime the music from the string will be. The Savior taught an imposing lesson in John 9 : 2–3: "As his disciples asked him saying, Master who did sin, this man, or his parents, that he was born blind?" Jesus answered, "Neither hath this man sinned, nor his parents: but that the works of God should be made manifest in him." Each day we are blessed to understand more how your experience continues to bless countless others. In a sense we could say that someone has to be our exemplar in what is one of life’s most fearsome challenges. We esteem you for consecrating your life to a higher cause we do not yet comprehend. Vincero!" When I read this letter to Ryan he got tears in his eyes and mouthed the words, I sure love that man. Just by reading his letter I can see why. Ryan had a good day today. He was up in his chair for 5 hours and was able to use his voice for the same amount of time. It wore him out. He took a 3-hour nap but he felt good about the increased time he was able to stay up. Tomorrow they are planning to have his cuff down for 8 hours. They will continue to add 2 hours a day if he can handle it. He said, "I never thought it would be that hard to sit in a chair!" After the not breathing episode last night, the doctor ordered blood tests and they found that his blood was thickening. He had to go down thru the "maze" to the Swedish Hospital and have a body ultra sound done. We assume that they didn't find anything, because we haven't heard anything yet. I am sure we will get the results tomorrow. The head of nursing came in tonight and just wanted to make sure we were OK after the not breathing episode. She asked if we had any concerns about what had occurred and Dean told her that we were concerned that it took the staff too long to respond. (Dean came in from Farmington shortly after the "scare", he could see in my face that something had happened so I gave him the details.) She asked us what had happened and we told her our version. In short, we told her that I had called for nursing help and then respiratory STAT before Harold went into the hallway and asked for help. She said next time I need to tell them that Ryan is not breathing. That way the staff knows that it is an emergency and not just that he needs some help! It was good to talk with her in order to get a better understanding of what we need to do, because we don't want to panic. She said that it is good to know the concerns of the families, that way she can work with her staff and try to figure out better ways of doing things. She also said, not in an excusatory way, but a real concern, that they are all just human and are trying to make this as easy as possible for the patient and their families. Any concerns or problems that we have, she would like us to bring them to her attention so she can try and improve their day to day procedures. It made us feel a lot better to be able to talk with someone. We appreciated her concern. Most of you know Meredith, Ryan’s girlfriend, thru this blog site. Meredith is in the Dental Hygienist Program at NAU and had to go back to Flagstaff for a three week class, which ends the last week of June. Ryan would like Meredith to come to Denver and stay the months of July and August and was wondering if we could try to find her a job while she is here. As we all know, it is not what you know it is who you know when it comes to finding work!! If anyone has any ideas let us know and we can put Meredith in touch with a possible leads. She has already had experience in a dentist’s office. Ryan says, "THANKS!" We love you all and appreciate your continued love, support, and prayers. We also appreciate the thoughts, wisdom, and counsel, which we have received from many of you. It truly helps us see that we are children of a kind, gracious, and loving Heavenly Father and are in His hands. May God bless each of you. Dean, Terry and Ryan