Giving

We are truly blessed. As hard as this holiday season has been, we find comfort in a loving family and many many blessed friends. We are so fortunate to have so many “giving” folks in our lives; we have been the recipient of the goodness, kindness and generosity of so many, which has been a very different Christmas for us. Santa, as usual, was very good. Among other things, he brought Ryan a new lap top computer, via the William Lang Foundation.

Established in 1989, the (William Lang) nonprofit foundation is dedicated to improving the quality of life of those suffering Spinal Cord Injury (SCI). Foundation resources are also used to fund research and practical therapies toward the cure for SCI.

"The onset of paralysis triggers both physical and emotional upheaval. Coping with the loss of movement, coupled with being dependent on others for their daily living is devastating. Every SCI individual undergoes transformations, sometimes completely making over their life goals. Employment opportunities are problematic. Relationships with all family, friends and acquaintances are reevaluated and made over based upon each individual's response to the injured, and their new physiological makeup. Adding to these challenges is the enormous expenses incurred, just to provide any kind of quality of life to the afflicted. The main goal of the foundation is to return purpose, motivation and an improved quality of life to the paralyzed. We, as caring human beings, can and must provide the tools to help the unfortunate." - Billy Lang

We are so grateful to those who thru life changing circumstances have chosen to help others that find themselves in the same situation. We truly hope that at some point we will be able to repay those efforts.

We took a ride on the Polar Express! The Durango/Silverton Narrow Gauge Railroad took us to the “North Pole” where Santa greeted us and handed out sleigh bells. When we made the reservations we conveyed our need to have wheelchair access to the railcar. We told the reservation agent that Ryan’s chair was just like Christopher Reeve’s chair. We have found that it helps to give a visual as to what his chair is like; being that almost everyone knows Christopher Reeve, that is a good comparison. After a long wait of being placed on “hold” we were told that there would be no problem; the train would be able to accommodate us. We are always a little skeptical when we are told that access is available; however, when we got there we were pleasantly surprised. They had a lift, albeit somewhat rusty, and Ryan was able to “load.” Because the railcar windows are so high, Ryan was able to see out rather well. As the train made its way to the “North Pole” we listened to the story of the Polar Express, ate cookies, drank hot chocolate and then on the way back home, sang Christmas carols. There wasn’t any snow, but it was fun to see all the Christmas lights along the way. The “North Pole” is awesome for those who haven’t been there!!

Ryan started running a fever late Friday night and wasn’t feeling well. I think that he has some congestion in his lungs and has had for some time but because of the antibiotics for the UTI the possible lung infection has been masked. His fever reached 101.7° again; we continued to monitor it as it fluctuated between 100° and 101° finally dropping this afternoon. After opening up his presents, then attending Sacrament Meeting he couldn’t do much more and went back to bed around 3:00pm. He hasn’t had a fever this evening, but still doesn’t feel good. We hope tomorrow will be a better day!!

We hope that he gets to feeling better as we have planned to go down to Gallup for a couple of days – if he is up to it. It will be good to have a change of scenery and see our family down there.

We are so grateful to our Savior; his birth and his atoning sacrifice for each one of us. As you may have read from the last blog, Ryan’s testimony is strong. It took him several days to write that blog, as he became very emotional several times. He is getting better and better at using the voice recognition software. We have also just learned of a “speaking valve” that may help his voice; we are going to be talking to a physician about that after the first of the year. Even though he has “bad” days, his outlook on this injury is unbelievable. He is such a strength to us.

We love you all and wish each of you a very Merry Christmas and a Blessed and Happy New Year.

Love,

Dean, Terry and Ryan

From Ryan

To all friends and family:

    This is my first time in writing the blog. So please excuse the different writing style :-). I just want to thank everyone that has been a part of my story from the beginning, middle, or just joining. Know that I think about you and love you.

    I just finished reading the Book of Mormon; how remarkable it is to be able to learn from the Prophets of the Lord. Each time I read the Book of Mormon I learn something new. This time, I had a different focus. I was focusing on the faith, hope, and the mercies of Jesus Christ and our Heavenly Father. It is always fun to see the different perspectives as we read from that great book. I’ve preached its truth, I know it's true, and it can change lives. I'm so glad I had the opportunity to full-time teach of its truth, and how it can change people's lives. My Bishop, Bishop Meldrum, brought that tender mercy to my attention. If my accident had happened a few years earlier, I would not have been able to serve my Savior. I'm so glad that I was able to spend two full years in teaching the Filipino people about what I love and know to be true. What a "tender mercy!"

    I'm also trying to finish reading the November Conference talks in the Ensign to learn more about what the modern prophets want us to do. I am so thankful for so many ways in which to learn about Christ. We have not been left to fend for ourselves. Heavenly Father has provided so many ways in which we can learn to become like Him and return to Him. It is amazing the different avenues of which we can learn; both from prophets of old and our living prophets today. What another, "tender mercy" of the Lord.

    Yet another "tender mercy" is one quite humorous. While in the hospital, I was given many shots. I was prodded, poked, and scarred. However, I did not feel any of these, which is good. I hate getting shots!

    It has been a rough seven months. However, I know that through the love of many of you, the Savior, my family, and my Heavenly Father, I will do this. I felt many times, the "hand of the Lord" in this trial. He has buoyed me up, helped me, and given me comfort in the darkest of times. I know He is there, that He knows each and every one of us and our trials.

    It was interesting at the hospital, how much ahead I was of the other patients. Not in injury per se, but in my attitude, in the knowledge I have of the eternal perspective, and in knowing that the Savior knew me. It was amazing to me to see the difference in attitudes among the different patients. Some were bitter, mad, crying all the time, kept in the rooms, or just plain indifferent. Of course I've felt like crying all the time, sometimes mad or just plain indifferent; however, my attitude has been aided through the knowledge of the plan of salvation. My knowledge that my Savior did not do this to me, but has allowed it to happen in order to fulfill His purpose has sustained me.

    I would still like to thank each and every one of you who has thought about me, written me, prayed for me, and cared for me and my family. I wish I could respond to every e-mail, prayer and thought. I appreciate, and words cannot describe, how much you all have done for my family and me. Thank you all!

Love,

Ryan Lee Griffin

Packages Under the Tree

Well, Ryan’s on another antibiotic. He still has infection in his system. The laboratory has cultured the samples and the Doctor has prescribed meds to target the specific bacteria; but, then with the next lab analysis something else pops up!! Hopefully we are going to get past this; although, bladder infections are the #1 complication with spinal cord injuries. We will keep a close watch.

We learned today that our Doctor is leaving for two weeks for the Christmas holiday. How dare she!!! We are a little nervous, however with any luck will be ok! She did ease our minds when she told us that her assistant would be able to get a hold of her if necessary. Actually, we do hope that we don’t have to bother her!

Ryan had a pretty rough night last night. He complained of his arms hurting all afternoon and kept asking to have them ranged and moved to different positions. About 7:00pm he really started hurting and it didn’t let up until about 2:00am. Sometimes we are at a loss as to what to do to help him. Last night was the first time he sobbed because he was in so much pain. We moved him, stretched him, cried with him, moved him, prayed with him, prayed for him, moved him, Dean gave him a blessing (one of many) and finally he got some relief. This injury is so unbelievable. There is no explanation for any of it. It is so hard for Dean and I to see him go thru so much; even though he struggles, we are so glad that he is here and we can try to help him.

He was supposed to have his tracheostomy tube changed out last week. We have been awaiting the new tubes that are a different type, which were to be delivered today. We scheduled another Doctor appointment for this morning to have the change made, but the tubes still haven’t arrived. I have called the freight company and supplier every other day trying to figure out where the package is. Last night I went on-line to track the package and found that it was actually in Farmington, so I contacted the call center for the freight company and the gentleman relayed an “urgent” message to the Farmington office. I was told that the Farmington office would try to call me by about 8:30am. I hadn’t heard anything by 9:00am so I went down to the freight company’s warehouse to see if I could pick up the package. Not!! Their warehouse looked like the North Pole!! I couldn’t believe all the packages waiting for delivery to be placed under someone’s Christmas tree. Santa has been busy!! Needless to say, I didn’t get the package! It isn’t critical, so we will wait for Santa’s helpers to bring it by!!

Ryan had another rough day, mentally. He said he is really frustrated just sitting in his chair all day long, “All I want to do is to run and play basketball… I just want to be normal.” I told him that we may have to redefine “normal.” We talked about, among other things, how when we die our body goes to dust and all we take with us is what we have learned while we are here on this earth; so maybe our trial isn’t the injury, but how we adapt and use our minds and intellect to gain more knowledge and wisdom.

We will continue to pray for guidance. We are all going thru a “growing and learning” experience. It is hard for Dean and me to see Ryan in this situation, but it is as hard, or harder, for Ryan to see us trying to deal with all that is happening. We do count our blessings as well, as Ryan has said, “they are many.” He did smile before he went to bed tonight and that helps us sleep better!!

Love,

Dean, Terry and Ryan

Health

Ryan is feeling better physically. Tomorrow morning he will have some lab work done to see if the UTI is cleared up. We are keeping our fingers crossed!! Friday we paid a visit to his doctor to go over his medications to see if we could decrease or stop taking some altogether. He takes fourteen different medications regularly and up to seventeen on an as needed basis. We were able to quit talking one drug altogether, reduce two drugs to only once a day – but we had to keep the rest. He is on some pretty strong pain medication; we tried to reduce the dosage while at Craig, but found that he wasn’t ready to do that yet. He is a little afraid to try that again; it was a pretty rough couple of days when he tired it before, so the doctor suggested to wait a little bit longer and see how he does.

Since we have been home we have been trying to eat better. After the first month at Craig, Ryan got tired of the hospital food so we would “eat out” a lot. Dean or I would take his order and go to his favorite “fast food” restaurant, for that day, and pick up something to eat. After five months not only did we get tired of the hospital food, we got tired of “fast food”. I have been trying to make “healthy” meals for the last couple of months but Ryan’s “system” is having a hard time getting used to my cooking!! During our visit to the doctor, we told her about his eating habits over the last several months and how Ryan is having a hard time adjusting. She gave us all the medical reasoning as to why we needed to continue to eat healthy and then she added, “But maybe he could use a greasy ______ every once in a while!” Ryan was grateful!!

For some reason he has had a tough weekend both mentally and emotionally. We wish he didn’t have to deal with the “grownup” world so early in his life. We have lots of decisions to make, where to live, finding work, schooling, finding new insurance, new doctors, new healthcare givers, new social programs, etc. etc., and he feels totally responsible. We are trying to help him understand that he is not responsible, just in integral part of the whole process and how he has helped us look deep within to figure out what this life is really all about. We know in our hearts that all will work out, but some moments it is difficult at best to get thru the day.

We are so grateful to our friends and family who continue to make each day a little brighter. We know of so many others that are facing challenges and hardships, we pray for each of you.

Love,

Dean, Terry and Ryan

Five Times a Day

Sunday night I played catch-up on some e-mails and talked about how we are learning to tell how Ryan feels by the way he looks. However, sometimes it’s hard to tell because he is sooo good looking!! Only a mother!! Ryan has been looking really healthy for several days, but boy when he takes a dive, he takes a dive. Sunday, as the afternoon wore on, he got quieter and quieter. He had been cold all day, but after we got home from church, he was freezing. We were glad the First Presidency’s Christmas Devotional was on satellite so we could watch it at home. The weather has been “bone-chilling” cold here in Farmington (tonight, with wind chill, it was 4°). Even though Ryan can’t “feel” hot or cold, he seems to be freezing all of the time. He is found most times bundled up in a blanket or blankets. Later Sunday night he started running a fever, starting at 99.5° and going up to 101.3°. We took all the covers off and turned the fan on and waited; his temp finally came back down to the normal range.

He has had a urinary tract infection and has been on four different antibiotics for about six weeks. We were hoping he was getting past it, but now we are not so sure. Monday and Tuesday nights he also ran a fever, reaching 101.7°. We have been told that we really need to start worrying when his temperature reaches 102°. Since Sunday we have had to suction him a little more each day, so we’re not sure if it is the UTI, a virus, or respiratory problems. We hope and fervently pray that he can overcome whatever it is.

He had a wonderful visit from his favorite person; Meredith! She was able to come and spend the weekend with him. Ryan made Meredith drive the van and take him to the mall to do some Christmas shopping. She was quite nervous about driving him, but he said she did great – and “really, it’s not that hard!!” I’m with Meredith; he doesn’t know how nerve racking it really is. When they got back, I asked if he had knocked over any racks – he said, “Only one at Radio Shack” then chuckled! They kicked Dean and me out both Friday and Saturday night – for date night! It was nice to get away for a little bit. We have all the confidence in the world in Meredith, she learned as much as we did while at Craig; because of her age and being able to absorb more than us old people she probably understands all of this a whole lot better than we do too. I just wish I could quit worrying!

We received a letter from our Disabled and Elderly Waiver Case Manager telling us that the LPN and nursing hours were not approved by the NM-BCBS Utilization Review Board. Because Ryan is on a ventilator, state regulations require a Nurse or an LPN to do all the care associated with the vent (i.e., changing out the bedside vent circuitry to the wheelchair vent, trach cleaning care, suctioning, blood work, lab work, etc.), a certified nurses assistant (CNA) can do the bowel and bladder program; however, a homemaker can only do housekeeping duties (i.e., changing sheets, cleaning baths/showers, transferring patients, etc.). We were told, in the letter, that because the LPN and nursing hours were not approved we needed to select a company that does the B/B program. The only B/B Company in the area is out of Gallup – 120 miles away!! So, it seemed to me that we would have one person here taking care of the nursing duties, one person taking care of the CNA duties, and two homemakers to transfer (there has to be two people to transfer) and cleanup because CNAs and the LPNs/Nurses according to state regulations can’t do transfers.

My assessment was correct! I had to make my concerns known (I can’t just let things go) so I dialed up the Directors office for the D&E Wavier Program and spoke with one of the administrators and gave her a run down of Ryan’s’ injury and the care he was currently getting and what it all entailed. After a lengthy discussion, I asked the person on the other end of the line if she knew the #1 killer of SCI patients. Answer: Bladder infections. I told her that he needed an LPN or nurse to care for him because they had had the training to detect when things were wrong where a person who was trained for ten hours to do the B/B program wasn’t and Ryan was just beginning to feel like he had some consistency in his care and not only was the physical care important, but the mental, emotional and psychological side of this injury was just as important, if not more important. I requested that the LPN/Nursing hours be approved so that there weren’t any unnecessary interruptions in his care or state of mind. After we finished discussing Ryan’s case, she said that the reason for the denial of hours was most likely due to “incorrect wording” in the proposal and she would get in touch with Ryan’s case manager and review his case and get back with us. We’ll see; we are hoping for a favorable outcome!!

Ryan got his braces on!! Dean told him that he looked “younger” with braces and he frankly stated, “I know!” We are learning how to use the “wax” again. He had to chew soft foods for a couple of days. When he came in from the dentist, he had a letter with a very long list of “all” the things we needed to do to care for braces. One of which is to brush the teeth five – yes five times a day. I wonder who is going to do that??? It won’t be my fault if once his teeth are straight, they all fall out!!

Our little grandbaby has been sick too (double ear infection and croup), he hasn’t been able to come over the last several days. He and Ryan are going to have to quit sharing kisses!! We are learning that “good” health is such a blessing. Even though Ryan can’t feel his body, it is truly a blessing when he feels good! I talked to one of my friends from Craig (her 17 year old son was there) the other day and she said, “I never dreamed I would think a blessing would be a wheelchair!” Even though we have had a rough year, we do have many things to be thankful for, a wheelchair and a van – to take Ryan to the mall. Can you believe he wanted to go to the mall!!

We love you all, thanks so much for the continued love and support – it makes each day a little brighter.

Love,

Dean, Terry and Ryan

Letter from Tristen

Dear Uncle Ryan,

I wanted to write you a letter and tell you my mom and dad told me that we are going to move to Gallup the first of the year. I made a big fuss and told them I wanted to stay here so I could see you everyday, but they told me I had to go with them. I know I’m little, but one of these days maybe they will listen to me. Grandma said I could stay and live with you, but mom said, “No.” Grandma said she is going to miss my mom, too.

I like it when you take me for rides on your wheelchair. Grandma doesn’t think that I can “stay put” so she keeps following us around, one of these days we will have to take-off while she is not looking and go for a ride outside. I am sorry that I scratched your nose and pulled on that thing in your throat. You said it was “OK,” but I know that it hurt cause you had a funny look on your face. Mom says that I can’t pull on that, or the hose that goes from your throat to the wheelchair; everybody yells at me when I crawl over and get too close to them. I will try to be nice and do what my mommy says. Let’s take more rides, 'K'.

It is really fun to see you in your swing; Grandpa says it is called a lift and you sit in what he calls a sling. I don’t even have a swing yet. When we move to Gallup, I am going to ask my daddy for one so I can be just like you. You get to use your swing inside; mine will probably have to be outside in the yard. I like to watch when those ladies put you in your swing and take you from your bed to the mat grandpa-great built you. Oh, by the way, it is fun to play on when you are not using it. If I learn to not pull on the hose and that thing in your throat, Mom says maybe I can get on the mat when you are on it and play with you.

I like to watch mom and grandma stretch your legs and arms too. My daddy does that to me, but he always tickles my tummy and throws me into the air when he does it. Why don’t they throw you into the air and tickle you? Maybe its cause your tummy would get upset. My tummy gets upset sometimes and then I hurl my breakfast or lunch, daddy doesn’t like that!

I am glad I am your buddy, cause you tell grandma to give me a little piece of your donut when my mom isn’t looking. Everyday when we get into the truck to come to your house I hope that you will tell grandma to go get you some donuts, so that I can have another bite; they are yummy. Mom says chocolate isn’t good for me, I’m glad that you let me try new things. Grandma sure does eat a lot of it, for it not to be good for you! Those strained carrots and green beans and bananas get old after awhile. Mom keeps showing me the picture of the baby on the bottle and says that he eats his fruits and vegetables. People tell me that I look like that baby; I think they call him the Gerber baby. Wouldn’t it be fun to have my picture on a jar of baby food? Maybe I could sit on your lap when you are in your wheelchair and we could both be in the picture.

The other day, dad left the front door open and I thought it would be fun to go outside and see what he was doing. I didn’t know that the front porch had steps, I fell on my head. I had a big bruise for a couple of days. Mom said that you hit your head too. You must have hit it really hard! My daddy built a ramp from the driveway up to the front door so it will be easier for me to get outside and not get hurt. Except, he told me that it wasn’t for me, it is for you. He said I couldn’t use it unless somebody was helping me. How come we can’t do things by ourselves? When you came to my house and used the ramp, everyone was standing around telling you what to do. Do you like it when people always tell you what to do? We need to talk about that sometime. I was glad that you could come to my house. I bet daddy will build a ramp at my new house, so you can come to Gallup to see my new bedroom.

Friday after you went to the dentist, I saw when you smiled that you had shiny things on your teeth. Grandpa said you got braces. I saw that dentist come to your house and look in your mouth; I thought he was just looking at your smile! He is pretty awesome to come to your house to look at your teeth. You sure do have lots of people come to see you. Mom said that in a couple of months you will have straight teeth again. Do those shiny things hurt? I am getting another tooth and when I get fussy, mom puts that baby ora-gel on it. That stuff is gross. Sometimes she gets it all over my lips and I can’t feel anything. I hope you don’t have to use that yucky stuff!

Grandpa said that he was going to get a Christmas tree this weekend so we could decorate it at Family Home Evening, Monday night. We are going to have so much fun. I heard Grandma tell my mom that it was really hard to get into the Christmas spirit this year and that she didn’t even want to decorate. From what I hear all the big people talk about, grandma and grandpa have had a lot to think about this year. My mom told grandma she would help get the decorations and lights and stuff out. I hope grandma lets her help so I can play in the ornament box. You can tell them where to put the lights and the angel on the tree. This is my first Christmas, so I am really excited to help. Mom says that this will be kind of a “first” Christmas for you too, cause of your new chair. I think your chair is pretty cool, especially when you take me for rides. We’ll just have to make it an amazing “first” Christmas for both of us!

Well, dad says I have to get ready for bed. I know that we are going to move lots of miles away, but I will make my mom and dad come to see you and you will have to make grandpa and grandma take you to see me. Grandma is teaching me how to “blow” kisses. When I get it figured out, I will blow kisses to you and then I won’t hurt your braces. I love you, Uncle Ryan; I want to be just like you when I get bigger.

Love,

Tristen Ryan Robbins

I Love Technology

We had a wonderful Thanksgiving dinner. Geralyn is a great cook – we had to rearrange all of the furniture to get everyone around the table, but it was well worth it as we laughed and carried on, reminiscing about “old-times.”

Rearranging the furniture made it possible to get Ryan in his standing frame as well. We are learning that all of the equipment that is available to Ryan is innovative and ultimately will aid in his recovery; but, we have to be creative in getting all the different pieces to work together. The lift we use to transfer Ryan has a leg span of two to three and a-half feet; with the castors, the legs are five inches off the ground. The legs don’t spread far enough apart to allow us to put Ryan into the standing frame seat so Steve stood behind the standing frame, tilting it back, while Dean and Michelle maneuvered the lift, with Ryan in the sling, to a position which allowed him to get far enough back into the seat. Steve got tired of holding the standing frame so he set it on the legs of the lift. Once we got Ryan situated in the seat, Steve tilted the frame again and Dean moved the lift out of the way. It was quiet a sight to see.

When Ryan stood in the standing frame at Craig, he almost passed out so we were a little bit leery about raising him too fast – but were ready in the event he decided to “check out!” He didn’t. We raised him to his 6’4” height plus an additional six inches for the frame – he was looking down on all of us! He stood up for about 20 minutes then said, “Ok, that’s enough, put me down!” After we got him back to his chair he stated, “That felt good!” We hope to help him “stand-up” a couple of times a week – and hopefully we will get better at it – so it won’t take the whole family!!

We had a house full of family over the weekend as well. Mike and Marshall and some of their kids were able to come up and visit on Saturday. Some of the kids we hadn’t seen for several months so it was good to see them – since there were two new babies to admire. Ashley, Mike’s daughter, had returned from her mission to the Philippines in August. Ryan hadn’t seen her since she got home so it was fun for them to talk about memories of the Philippines; using the Filipino native language, Tagalog, a little bit.

Scott, Ryan’s older brother, and his wife Becky were also able to come for the weekend and went to church with us. We use a heavy duty lift, which is installed in the side door of the van, to get Ryan in and out. When Ryan exits the van, the lift unfolds and he drives his chair onto the lift platform and then it is lowered to the ground. The lift also has a “flap” on the front of it that remains upright and locked to prevent the wheelchair from “rolling” off while lowering or raising it and plummeting to the ground. Once the lift hits a hard surface, the flap unlocks and folds down allowing the driver to exit the platform. The lift also has a “lip” (about 2”s high) on each side to try and keep the wheelchair and its driver on the platform and safe!! Scott and I were “helping” to get Ryan out of the van; although we got to talking and laughing and neither of us was paying very close attention!! Ryan got a little to close to the right side lip and as he was driving off of the platform, his right back tire rubbed against the lip and then started climbing it. He continued on and climbed the three inch latch that locks the flap in place when loading and unloading. When the back tire reached the top of the latch the front left tire was then airborne and he starting tipping to the left, almost falling to the ground. He got our attention, when Scott and I realized what was happening, Scott grabbed the handlebar closest to him and brought him right-side-up! I was standing on the left side of the chair and grabbed the handlebar closest to me and then put my knee out, thinking I could stop 650lbs from completely going to the ground!! It all happened so fast. After we got him back on all four wheels and the color came back into my face and I caught my breath, I looked at Ryan and he was laughing, asking “what happened, that was awesome!! I don’t know about this kid, he loves a thrill!! He talked about it for days – and I kept showing him my bruised knee.

It was bitter cold on Sunday so when we got home, I climbed into the back of the van between the front two seats and then between the wheelchair and the lift – which is a tight squeeze. As I was making my way to the back, Ryan said, “Mom, think skinny!” I must have given him a sharp look, because he gave me his big smile and said, “Just kidding!” He is so fun sometimes!!

Ryan’s mission president, President Johnson, and his lovely wife flew into see Ryan Sunday night. What a blessing they have been in our lives. We had a wonderful visit Sunday night. President Johnson had sent slides of the Philippines prior to them coming and so Monday we got to see and hear all about their missions; hearing them recall the same areas, remember missionaries and members or new converts, talk about the growth of the church in that area of the world, etc. It was fun for Dean and I to see how much Ryan loved his mission and how he had grown to love President and Sister Johnson and the Filipino people. Most importantly, he said that President Johnson had given him the best gift, a love for the Book of Mormon.

Tuesday and Wednesday we had another wonderful visitor, one of Ryan’s Bishops from BYU-Idaho. Bishop Parker and his daughter came thru Farmington and were gracious enough to take the time to stop and see Ryan. Bishop Parker, as President Johnson, has been such a strength to Ryan during this trying time. Ryan and Bishop Parker reminisced about mutual friends and carried on about different activities that they had been involved in while Ryan was at school.

It was great to visit with these two fine men and hear their encouraging words, their advice, their help in sorting thru some of the issues we have to deal with and their undying love and support for Ryan. It has been an exhilarating couple of days.

While we were at Craig, we learned that we are not a “fiber” family! We are learning to incorporate more fruits, vegetables, rice, whole grains, etc., into our diet; we are trying to get past the hamburgers and donuts!! Last night I was trying to get Ryan to drink a Pear Nectar drink; he tightened up his lips and scrunched his eyes closed and shook his head, “No!” Dean plugged his nose and we all started laughing. I said, “Do you think that is really going to make a difference?” Ryan couldn’t quit laughing while reminding us that he doesn’t use his nose or mouth to breath!! After much persuasion, he drank the drink!! We do have fun times.

While we do have fun times, we do still struggle with government. We received a call today that some of the hours we submitted for the Disabled and Elderly Waiver were not approved – so we still battle the system!! We won’t bore you with the details.

We came in contact with a respiratory therapist in the area who was good enough to come by and make an assessment of what was happening with Ryan. It was comforting to hear that we are on the right track. The therapist made some minor suggestions to make things abit more efficient and sanitary to try and prevent any hospital visits, but all in all the therapist was quiet impressed with our setup.

While we don’t have a clue what we are doing, we are convinced that Ryan needs to be at home with people who love him and are genuinely concerned about him and his welfare. Some people have given their thoughts and opinions that we have “bitten off more than we can chew” and should put him into a nursing home or a 24/7 facility so that he would get the care he needs and then we would not be burdened by all of this. Ryan was horrified to hear that; we just don’t feel that that is even an option. I told Ryan that we would do everything in our power, utilizing the resources at our disposal and resources that may become available to us, or “go down try’n” to give him what he needs. He is such a joy to have around and although he is burdened with this injury, his outlook is amazing and his spirit is contagious.

We are so grateful for our blessings and for those who have kept him and us in their thoughts and prayers. He has made such an impact on so many people in his short life, we are so grateful for the packages, cards, e-mails, visits, etc., which he receives daily, expressing thoughts of encouragement and love and support. We couldn’t do this without that.

Love to all,

Dean, Terry and Ryan