One Final Post

We are having a hard time keeping up!! I am learning that Ryan is Superman, but I am not superwomen!! I wish I could say that life was getting easier, but...

Ryan is doing really well in school. Technology is wonderful. Most of his Algebra class has been on-line; he and Scott found an on-line calculator, which has really helped too. With Excel and the calculator he has become pretty independent with the school work. He has registered for a calculus class next block; I am hoping that the course material will also be on-line so he can use the “set-up” he already has to do his homework. I think each semester there will be some adaptation in order to find what will work best for him; with any luck we can find what he needs to make life a little bit easier.

He is still experiencing pain every night. I keep hoping and praying that that is a good thing, since the doctors can’t figure out how to help him. He never complains, but it breaks my heart to see him have to go thru that almost every day.

It is difficult to express in words our feelings for each of you. We have been so blessed to have so many caring and loving people in our lives. We are so grateful for all of the kindness, compassion, love, service, monetary help, shoulders to cry on, listening ears, counsel, guidance and the list goes on and on that we have received over the last year. We could not have made it thru this trying time without each one of you. We realize that we will never be able to “pay-back” what we have received; hopefully we can “pay-forward” the kindness and generosity. We love you all, our lives will be forever better because of you.

We are grateful for our testimony of our Savior, Jesus Christ, and the knowledge that we will all be made whole when we return to live with him. We lean on Him every minute of everyday and know that He hears and answers our prayers.

We truly hope that our paths will cross often. May the Lord bless each of you in your daily lives. You can still reach Ryan at ryangriffinblog@gmail.com.

With love,

Dean, Terry and Ryan

Page Turner

It has been a busy week. We have had an appointment of some kind everyday and now with Ryan in school it keeps us hopping.

We had an appointment with his physiatrist to see if anything could be done about the nightly pain. The doctor changed some of his medications, hoping that that will help. Ryan started taking the medication earlier this week and the pain doesn't seem quiet so bad, but hasn't completely subsided. The doctor wasn't sure whether to give him a full dosage or a partial dosage; he told us to try the full dosage and then cut back if necessary. The first night Ryan took a full dose and when Dean turned him at 5:30am he was dizzy and feeling sick to his stomach and just out of sorts. That morning, he could hardly wake up and by the middle of the day he had an excruciating headache. He didn't want to take anymore of the medication, but I talked him in to trying just half of the dosage. It seems to work better. We will try this for a couple of weeks and see how he does.

Now that he is in school, he can't be drugged!!! He has too much homework. He is enjoying being in school – if you can call it that. He spends about six or seven hours a day doing homework because it takes him so long to "talk" out each equation. He has figured out a way to use the Excel software in combination with the Course Compass software so he is pretty much able to do the homework independently, which he likes. At times he needs one of us to help him with the scientific calculator, but most of the time he works on his own. He aced the fist test!! He has another test tomorrow; we hope he does well.

After class Wednesday night, his teacher and I started talking and she asked if after being in the class for the last two weeks if I understood algebra any better. Ha!! I told her that I would rather be sewing. Come to find out she is also a seamstress; she asked if I had time to go with her to her office and see a little baby dress that she had made. I caught Ryan's eye and told him that I would be just a minute!! I left her office, after about 20-minutes, and Ryan just rolled his eyes. He can't get away from "old women" and the fabric store!! He is so patient.

We have hired a couple of student attendants for which he is grateful; one guy and one gal. When I told him that one of the attendants was a girl, he said, "She had better be cute or I am not doing this!" Guess what, she passed the test! They will start tomorrow. We felt like it would be good for the kids (or attendants) to come to Mapleton and pick Ryan up, that way they would have a little time to get to know each other. They will take him to school and then bring him home; hopefully that will all work too. He is glad that I won't be getting near or talking to his teachers anymore; I just don't get it!!

He is using a "mouth stick" to turn pages in the text books he is using which was really frustrating for him at first, but he is getting better. In order for him to be able to use the mouth stick everything has to be set just right, the reading tray and the mouth stick holder positioned correctly, the book right in the center of the tray, etc., etc. We had the binding on the books cut off and then had them spiral bound so that they lay flat on his reading tray, which makes turning the pages easier.

We have an appointment to see the podiatrist this week to see what can be done for his toes. That will be one less thing that we have to worry about!

The concrete sub-contractor is scheduled to be at the property tomorrow to begin pouring the footings for our new home. There are lots of homes being built in this county so we hope that we can keep the sub-contractors on track.

We were able to go to Salt Lake last night and watch the Salt Lake Bees play baseball. They have a beautiful stadium and the view of the Wasatch Mountains is breath taking. We met Ashley, Shanna and Ken and their cute baby Carson at the game. It is fun to have so much family around. I hugged on little Carson for Mike and Terry, they will have to hug on Tristen for me!! It was a gorgeous evening; Ryan really enjoyed getting out and doing something besides algebra!!

We have another teleconference hearing with the State of Utah Health Department this week. The additional resources will help pay for the student attendants and so I keep hoping and praying that we can get past that huge hurdle.

Ryan was asked to give the Priesthood lesson to the Priest Quorum last week. Dean went with him and said that he gave a very moving lesson. Ryan will never say, but there have been several in the ward who have heard from their young men that Ryan's' lesson was very good. We are so grateful for his strong testimony and that he is willing to share it with others.

We continue to see the Lord's hand in all things thru the many miracles and blessings which have come into our lives. We also recognize there are so many facing greater challenges than ours. Our eyes have been opened to the many trials and struggles which so many have. The depth of those struggles and trials can be overwhelming at times; hopefully we can all continue to put or faith, hope and trust in our Savior. May the Lord's blessings be upon each of you.

With Love,

Dean, Terry and Ryan

Busy as Bees

We haven't forgotten about the Blog, we have just been overwhelmed!! One year ago today (5/4/05) we received the telephone call which effected every aspect of our lives; changing our lives forever. While trying to survive the day to day concerns, we also realize the many many blessings which we have received; starting in Idaho, then on to Colorado, back to New Mexico and now in Utah. We have come to know many new friends, have become reacquainted with old friends and have grown closer to our immediate family as well as our extended family. The kindness, compassion, service, counsel, monetary support, etc., which so many have shown is immeasurable.

Over the year, we have adapted somewhat to the physical aspect of this injury, but the emotional and psychological impact is some days beyond belief. Moving to Utah where Ryan had lived part-time over the last few years has been a good thing; however, we knew that it would be difficult for Ryan to be here with his friends and around such familiar surroundings, and yet not be able to live the life he did when he was here before. We were sitting in Taco Bell one afternoon and as he looked across the street to a park with college age kids throwing a football, he remarked, "I just want to go run in the park." As we have been "out and about" he has commented, "People don't look at me the same anymore." Those times are really hard.

Ryan was able to attend his missionary reunion; which was wonderful. He was able to renew acquaintances with several missionaries he had served with. Dean and I met some of his companions as well as some of the couple missionaries that served with him. Ryan didn't know a lot of the missionaries because they had served after he left. He said he felt "old" being one of the oldest missionaries there; perspective! We were also blessed to meet President and Sister Osmond; his mission President the last part of his mission.

Meeting President Osmond reconfirmed our faith and testimony that this gospel is true. Unbeknownst to the President, Ryan had had a particularly bad week trying to deal with the "loss of everything." He was feeling pretty down about not being able to go and roof with his uncles, socialize with his friends, etc., like he had just last year. President Osmond took the time to take Ryan aside and among other things told him that the Lord had given him a great mind. He said (my words) that most of us don't use our intellect to the full potential to which the Lord has given us and now Ryan's test is to meet that full potential. We had prayed for help; the Lord once again answered our prayers. We are so grateful to great leaders, Mission Presidents, Stake Presidents and Bishops, who are humble enough to listen to the spirit and then act upon those promptings.

We were able to attend the Saturday afternoon session of General Conference. When we left Provo it was cloudy, by the time we got to Salt Lake it was pouring rain. In New Mexico we can just wait about fifteen minutes and the cloud passes; not here! We waited for a little while, but the rain kept coming. Because of all the traffic we had to park about two blocks from the Conference Center. Ryan's vent can't get wet so I covered it with some clear plastic, I covered Ryan with a blanket so he wouldn't get "as" wet and we ventured out. By the time we got to the Conference Center we were drenched and Ryan had a puddle of water in his lap. Luckily, the blanket I used had repelled the water so he was pretty much dry, except for his shoulders where I couldn't keep the umbrella over him and me too and walk all at the same time!! We were quite a site!!

As we started up the elevator to the third level, an usher stopped us and asked where our seats were, we showed him the tickets and he said, "No, come with me." He took us to the top of the main level and sat us just to the left of the podium. I said, "Ryan, look at all the privileges we get!" It was a great opportunity and blessing to be in the presence of our Prophet, President Hinckley and the General Authorities. After the session, the sun was shining and it was a beautiful day. Ryan and Dean were able to go to the Priesthood session later that night as well, the tender mercies of living in Utah.

We had lots of visitors that weekend, as friends and family were in town for General Conference. Our visit with the "Shanty" girls was hysterical. The "Shanty" girls knew Ryan when he was at Rexburg and boy did we have a great time. When Aubry e-mailed me to let me know that they would be in town she said their visit would be like a three-ring-circus. She was right, we laughed and giggled and carried on until Laura had to start for home. What a blast!! While they were here, our new bishop came by to meet us – I still wonder what he thought of that 30-minute visit?? Ryan has lots of cherished memories with those girls. We are grateful to live here by so many temples and the Missionary Training Center. The first part of April we got to go with Cameron (Mike's son) to the MTC when he entered the MTC for his mission to Alaska. A week later we met up with Clayton (Rodney's son) who is going to the Boise, Idaho Mission and had a nice visit and dinner with them before he went in to the MTC. It brought back lots of memories for Ryan. He is glad the MTC days are behind him, but does cherish the memories of his mission.

The medical resources seem to be working for us. We have found a good Physiatrist, who recommended a good Urologist and Pulmonologist. We talked with the Pulmonologist and a Respiratory Therapist about Ryan using the speaking valve. We learned he wouldn't be able to use the valve continuously because he would lose the in-line HME (heat/moisture exchanger) which filters and humidifies the air as the vent inhales and exhales for him. Each time we would use the valve, we would have to adjust the breaths-per-minute and the tidal volumes which then would affect the alarms, requiring them to be adjusted, not to mention the additional six seconds between breaths. After making all those adjustments to the vent he wouldn't gain anything, so we decided to just leave things be. We were hoping the one advantage to the valve would be a better speaking voice for the voice-recognition computer software. Although, each day he works on the computer it is actually getting better.

The health care is going pretty well too. Ryan has one nurse that he really likes. The only problem is she needs a day off every once in a while so she needs to train more help. We have had a couple of nurses come in to train, but they either "freak-out" because of the vent or don't want to do what it takes to get him up and going – which is a lot of work. You would think I could get used to having all these people in and out of our home on a daily basis, but it is getting harder and harder to adjust to new personalities all the time. I like order; this is total chaos in my book – kind of frustrating some days but I am trying to be more flexible.

Ryan seems to be gaining more and more strength each day. He has put on all of the weight he had lost right after the injury; so that is good. He has put on enough weight that we have to "grow" his chair. The therapist that came and looked at his chair to determine what he would need to make it bigger said that one of the biggest mistakes rehabilitation hospitals make is to place patients in a chair at their weight eight to twelve weeks post-injury. He said most patients gain all of their weight back, if not more. In growing the chair the back, seat, and arm rests will have to be replaced; then they will see what additional problems that causes and go from there. It seems to be a never ending journey.

He still deals with that excruciating pain, almost on a nightly basis. I wish we could figure it out. We can tell he is in horrible pain by the faces he makes. He never says a word, just agonizing faces. I keep hoping that if he has to go thru all of that, it is a good thing and not phantom pains.

We had a "Suc & Vent" training night. We want to train others so Ryan can "go out" without his Mom and Dad. Someone asked if I was afraid to let him go. I said I was more afraid of what Ryan would tell people he can do; stairs, no problem!! I have come to realize, as hard as it is, in order for him to have a life he needs to get out and socialize without me!! The "Suc & Vent" went really well. I made a "Little Ryan" out of a plastic bread saver box so we wouldn't have to practice on him. I drilled a hole on the outside and towards the top of the bread saver box and then placed a tracheostomy tube with elbow swivel and vent tubing thru the hole and connected rubber tubing on the inside which would imitate the trachea. I placed clear marbles in the bottom of the box for weight. If I would have drawn big brown eyes, a cute smile and curly hair on it, it would have looked just like Ryan!! When I filled the box with water, we could suction thru the tubing (just like you would do on Ryan) and we could see the water being suctioned out; when we attached the Ambu bag, you could see the water bubbling as if he was getting air. Ryan was grateful that we didn't practice the suctioning on him!! We also showed everyone how the lift on the van works to they could get him in and out of the van. I hope it was enlightening for those who were here and didn't scare them off! Hopefully, this will allow Ryan more freedom.

We are still "fighting" with the State of Utah for the waiver program; although, I think we are getting closer. We are in the informal hearing process now. We had a "pre-hearing" tele-conference with one judge to schedule a "pre-hearing" tele-conference with a different judge, next we will have a pre-hearing tele-conference with that judge to schedule an in-person hearing which doesn't really matter because this is all thru the Department of Human Services (DHS) and ultimately everything will go thru the Department of Health (DH). When we have completed "jumping thru these hoops" (as described by the Director of the DHS) the DHS will turn the matter over to the DH where we will begin the hearing process all over again!! Our tax dollars at work.

The Director of the DHS came to our home and completed an assessment of Ryan's needs. While he was here I asked why this process had to be such a fight. He said that if an applicant doesn't fit within a certain framework, it is just that, "a fight thru the entire process." It seems so simple to me!! We will continue to forge ahead.

Ryan got registered for school. Although prior to starting school, we went to the Financial Aid office to see if there would be any resources to help with Ryan's tuition. While there we learned of a couple of options that we can apply for. As we were visiting with the Financial Aid Officer, the question was asked if Ryan was getting any social security monies. Ryan responded in the affirmative and then was asked what the money was being used for. Ryan told her that he was paying insurance premiums, some medical expenses and some went for rent. The officer turned and looked at Dean and said, "So, you're making money off of him." I could see Dean's blood pressure raising and I was trying my hardest to hold my tongue, but couldn't. I told her that we would change places with her anytime. Ryan could see that she had touched on a very sensitive nerve (actually, the last one) so he got her attention and moved the discussion forward. As we went thru some of the paperwork and process that we would need to follow, the officer had questions about Ryan's accident. However, she still wasn't getting the gravity of the situation because "he looks so good", so I went over pulled apart the vent circuitry and said, "In about a minute and a-half, Ryan will die because he has no air." She said, "I see, hurry and put that back together!" After we left, Ryan said, "You guys can't get upset, some people just don't understand. She didn't mean anything by those comments." He really should be the parent!! He is so kind, forgiving and a man with no guile.

A few days later we were on campus getting Id's, books, etc. and I couldn't find a handicapped parking place or any other parking place except for service vehicle parking; it was graduation weekend, I am sure that is why there were so many vehicles on campus. We had been told by parking attendants and other administers that if we couldn't find handicapped parking we could park anywhere, but to be sure and place the handicap placard in the review mirror. I told Ryan when we got out of the van that I hoped we wouldn't get a ticket. Guess what, I got a ticket. Thankfully it was just a warning and no fines were imposed; that's all we need, is to be on the police radar at BYU!

To try and figure out what to do, I called the traffic and parking office the next day to see what we could work out. The administrator was very kind, but told me that the campus had more handicapped parking than was required by State law. I went into a little more detail about our circumstances and she pointed out that they have so many people taking advantage of the handicapped parking that she wasn't sure she could do anything. I told her that in order to park in a regular parking place we would holdup traffic, given that I would have to let Ryan off in the roadway because we needed about 17-18 feet to get me out of the drivers side of the van and then room to let the lift down and room enough for Ryan to get off of the lift (the lift and chair are a little over ten feet). She then suggested that I drop Ryan on the curb while I tried to find a place to park. After reiterating and going into greater detail of him being "totally" vent dependent and that he could not be left alone (OK, call me paranoid but I have been known to stop a van going 70 miles an hour in a split second to reconnected pulled apart vent circuitry as well as jumping over moving boxes to reconnected a popped-off hose) while I took time to find a parking place. She finally got the picture and realized what I was talking about. She than said she would look into this further and get back to us. The next day we got a call-back and she said, "This should be the least of your worries, I am going to give you a parking permit which will be good anywhere at anytime on campus because I know that you won't take advantage of this." Yes, I told her if I was there I would give her a great big hug!!

It saddens me that most of our "battles" are because others take advantage of programs which are put in place to help and assists those who really need it.

Ryan registered for two classes; Algebra 110 and World History – Civilization to 1500. Each class was for a period of two hours every Monday, Wednesday and Friday. We went to class the first day and his Algebra teacher told the class that Algebra 110 was the most failed class at BYU. Yikes!! After receiving the syllabi for each class, Ryan quickly realized that trying to cram a semesters worth of work into seven weeks would overload him. He decided to just focus on the Algebra class, since that was the class he needed to get into the BYU Business Management Program. I would have much rather attended the history class since I don't "get" algebra. His Algebra class starts at 4:00pm and ends at 5:50pm. The first day of class at about 5:30 the teacher heard some moans, groans and sighs. She told the class that she had a daughter and every night about that time she needed food, drink and rest. She asked for a raise of hands from those students who were tired and hungry, a couple of students including myself raised our hand. Ryan looked at me and just rolled his eyes!! I was sitting in the corner right in front of the class so no one saw my hand go up except Ryan. I told him that no one should have to sit for two hours without a Dr. Pepper or chocolate!!

After class we visited with the teacher to discuss Ryan's additional needs for the class. One of the teachers' requirements is to turn in the hand written notes for the homework. We had learned thru the process of obtaining help with note and test taking one of the things the school is concerned about is that the note or test taker will assist the student with his/her work. Ryan's Algebra teacher was quick to observe that Ryan wasn't able to write (it probably helped to see that I was taking notes for him during class!), she told him, "Not to worry," she would give him full credit for note taking. As we left class, I told Ryan that this teacher didn't have to worry about cheating in her class because I was smart enough to know that 3x2 + 13x + 4 = go to the quilt shop!! He would really like someone else to go to school with!

Actually, we are looking for someone to "attend" Ryan for medical reasons while on campus. If needed, the school will provide note takers and test takers. We have interviewed a couple of students but haven't worked out anything as of yet; it becomes difficult when trying to get two students schedules to work together. We are actually hoping that the "student attendant" can also take notes for his classes so he doesn't have to have two people in tow. In time, hopefully something will work out.

Technology is wonderful. The algebra class Ryan is taking is all computerized; homework, quizzes and tests. It is quite amazing. The Dragon Naturally Speaking software is compatible with the My Math Lab software so he is able to do all of his work on the computer. I do sit with him and jot down some of the problems as he tells me what to write so that he can have a "visual." But for the most part, he formulates the problem in his head and then goes back to the computer and "tells" it what the answer is. It boggles my mind how all of it works!!

We enjoyed a visit from our grandson; oh, Michelle and Steve, too! Rob and Kristen have a very nice backyard with lots of grass, a swing set, monkey bars and slides. Tristen thought he was in heaven running and playing and swinging with the big kids (Kristen & Rob have six). He loves to be outside, every time someone would go to the door, he was right behind them, pushing legs aside, wanting to go outside and play.

Ryan took him for a ride in his chair, although now that Tristen is getting more active and squirmy he tumbled off and onto the asphalt ending up with a big strawberry on his forehead. Ryan felt horrible; they were both in tears. We tried to let Ryan know that Tristen wasn't gong to break and that he would be OK. We eventually got past it, but later in the day Ryan said, "I just want to hold him and play with him." I wish I could fix it all………..

We were supposed to start on the house last week, but the excavator that was going to do the excavation backed out at the last minute; so we had to postpone the concrete and framing sub. We think we found another excavator, so hopefully we will get to turn some dirt in the next few days.

All in all we are doing OK; lots of new bridges to cross and hoops to jump through. We are growing and learning all the time. Some days are a little harder than others but we will endure to the end. Ryan bore his testimony on Sunday of his knowledge and gratitude for our Savior, Jesus Christ. As he was bearing his testimony of his love for his Savior the congregation seemed to get quieter and quieter – even the babies. He wasn't able to get to the microphone so people had to be a little quieter in order to hear him, but the Spirit was very strong. A testimony so pure that Jesus Christ lives and that He knows each of us individually and He hears and answers prayers coming from such a young man who, if desired, would have so much to complain about. On the contrary, his desire is to do the best he can even though some days are very very difficult.

We are so grateful for his strength and testimony. It helps us to be better parents and people. We are so thankful for your love and support. Reflecting back over the last year, our lives have been truly blessed. We have also come to know our Savior better and try harder each day to be more like Him.

Love to all,

Dean, Terry and Ryan

Talk the Talk

This week was a bit emotional – to say the least! We were able to go to the Provo temple on Tuesday, which was another “first” for Ryan. When he was on his break from BYU-I he would come to Provo and work with his uncles. Once a week, while here, he would go to the Provo temple so as we entered the temple Tuesday, it brought back lots of memories – those when he was able to walk. He had a difficult time as we went thru and completed the session. Hopefully, it will get easier each time we go.

We met with the State of Utah Division of Services for People with Disabilities this week as well. Two ladies, one of which was the one that told us not to move to Utah, came to our home and did a complete assessment of Ryan’s needs. They asked him everything from mobility needs, to social issues, to health issues to financial needs. After all of that, we were placed on the “waiting list” which in some cases has taken from five to ten years to get in the program. However, they did include an “appeal” process form, so we will be appealing their decision. More grey hair!!

Ryan’s healthcare nurses are great. He has become very confident in their abilities; as he has said, “They talk the talk and walk the walk!” One of the nurses, Lyn, is very good with him. She has boys his age so she understands his needs, wants, desires, etc. She is very good to talk with him one on one, as well as joke and kid with him. Ryan has gained a lot of strength in his neck and can move it pretty well from side to side. He can hold it steady pretty well when he is being transferred, until he has a spasm then he loses control and his head will flop backwards. Lyn is very concerned, as she should be, that he won’t be able to hold it all of the time so she is always asking him if he is OK. He will respond in the affirmative and then tease her by letting his head flop backwards to the point where he is able to gain control of it again. When she goes to grab it, he will bring it forward and then just smile at her. She keeps telling him one of these days she is going to let him fall on the floor and that will teach him!! Today he was giving her all the excuses as to why he hadn’t been drinking or eating this weekend. She told him, “I have heard excuses from you all week; I won’t have any more of that!” They do have a good time.

We also met with our new orthodontist this week. We hadn’t planned on meeting with him for a couple of months but the wiring came off of two brackets, so we needed to get Ryan in. We are so grateful to those who have been so kind and offered their services; especially being able to get in so quickly rather than having to wait for several weeks. After we met with the doctor, one of the assistants was putting the wiring back on the brackets and Ryan asked her if she had finished school, and if so where she had received her training? She told him that she was actually going to BYU, majoring in Wellness and Physical Health, and she had received her dental training from the doctor. She said that the doctor had completed some of his training in the military so he utilized that program to train his aids. Ryan asked, “Do you have to do push-ups every morning?” It took her a few seconds to digest what he had said and then she started laughing and said, “Oh, so you have a sense of humor as well!” Before long, he had the whole office in stitches!!

Ryan had a couple of friends come out and visit this week, one of which was a missionary in the Philippines with him. Elder Cole, or Mike as he goes by now(!), brought some Philipino food and made us lunch. It was great!! He and Ryan had a great time reminiscing over fond memories of their time in the Philippines. It is also nice that he is reconnecting with some of his friends that he made at BYU-I, as well as when he was here in Provo. I am hoping that some of them will be brave enough to get trained on the vent and suctioning and then he can have a social life!! I tried to get him to go to the quilt shop with me, but he matter-of-factly declined. I think he would enjoy being with his friends, rather than with mom and dad all the time.

Ryan’s toe is doing much better. I finally found some “big feet” socks, size 13-16, which have really helped. The bigger socks allow more “breathing” room for his toes when his shoes are on. I am still amazed at the things that we take for granted. There are so many “little things” that I never even thought about let alone worried about – like his toes and making sure his elbows don’t stay in the same place for too long allowing blood to pool – just to name a few!!

Rob and Kristen were able to bless their almost two month old baby today. They asked Ryan if he would participate in that blessing. It is so nice to see that he can still use his Priesthood even though he isn’t able to move. It strengthens my testimony that the Church is true and that our Heavenly Father loves each one of us and will accept our offering – even with our limitations or imperfections.

Kristen had a very nice family gathering after Sacrament Meeting. We wanted Ryan to be able to visit with all of the family upstairs rather than having to have all of them come downstairs, so our “roll-a-ramp” came in handy. Rob has three steps, then a landing and then one more step into his home so Dean put the ramp on the first three steps and had Ryan “sip and puff” to the landing. While he was sitting on the landing Dean “tipped” his chair back and held it as the ramp was moved around him and placed back under his chair and over the threshold step. Then he “sipped and puffed” his way into the gathering and was able to visit with everyone. Ingenuity gets us everywhere!

We went to the hospital tonight to see Ryan’s cousins’ new baby. Little Zoei was born premature, 2lbs 6oz(?); she was so tiny. We were a little worried that Ryan wouldn’t be able to go in and see her, but we walked right in and he was able to see the baby and visit with her mom and dad for almost an hour. As we looked on, seeing all the tubes and monitors coming from her little body and watching her sweet Mother cuddle her and feed her thru a tube, Dean looked at Ryan and said, “We all have challenges, just at different phases in our lives.”

We are so grateful for the many blessing we have, one of which is life it self. We know that life is fragile and we need to make every minute of every day count. When I opened the blinds this morning, we had another inch of snow on the ground and as we went to church, we heard the birds singing. We give thanks to a loving Heavenly Father who created this beautiful world for our enjoyment. We are grateful to Him as well for allowing us to have the association with such wonderful family and friends who continue to stand by us, buoy us up and love and support us thru our trial. I am learning that this is the reason we are here on this earth, to love and help each other – no matter our trials, struggles or limitations.

We love you all.

Dean, Terry and Ryan

In the Lord's Time

Snow, snow, snow and more snow! As the last minute household goods were being put into boxes Friday morning, we looked out the window and there was a blizzard like we haven't seen in years. We hadn't had much weather, to speak of, all winter in Farmington but that morning we couldn't see past the front porch. I had looked at the weather reports earlier in the week and told Dean and Ryan that the forecast for Friday and Saturday didn't look very good all the way from Farmington to Provo. As before, I had asked them both if we should wait! Ha! Ha! But, Friday morning as Dean stood looking out the window he had second thoughts although realized things were already in motion with family from Provo and Gallup already in Farmington to pull trailers to and fro. Uncle Marshall and I were talking when he reminded me that in our part of the world we can wait fifteen or twenty minutes and it would all blow over! Sure enough, after dumping a few inches of snow we got the rest of the "junk" loaded and we were on our way. However, we did wondered what the roads would be like the rest of the way.

We had a little road weather around Dove Creek but then the roads were clear on into Monticello where Dean had to stop and do some banking business. When he came out of the bank, he said that he had been told that the roads into Moab and on up thru Green River were going to be bad; but, we were truly blessed. We saw snow as far as you could see from our front door in Farmington all the way to our "new" front door in Mapleton, but the roads were clear and dry. We were so grateful.

Ryan actually traveled really well. We didn't have any problems other than the closer we got to Mapleton the quieter he got. I asked him what was bothering him; "I'm just nervous and scared, most of my memories over the last few years have been in Provo," he said. This new phase in his life will be challenging, as he tries to get back into to school and go on with life, with the new limitations.

When we arrived, we had lots of family ready and willing to help get Ryan's bed and equipment set up as well as all the other "goods" unloaded. Dean's mom had prepared a very nice "hot" meal for all of us – which was really nice. As we went to bed that night, we looked back over that 24-hour period of time and felt so grateful and thankful for all the many many hands that help us get here. As we packed the trailers in Farmington, at one point I looked around and had an overwhelming feeling of love and comfort as we had so many ward members and friends (all of which we consider family) as well as immediate family there to make this transition so much easier. We are grateful for modern technology so even though we have moved miles away from our "home" we can still be in touch with our New Mexico family.

As we left Farmington, we still didn't have anything worked out as far as home health services. I started working on getting something lined out in November, but hadn't been able to make any headway. Two weeks before our departure I was on the phone everyday – most of the day – trying to get things put into place, all to no avail. At that point, I had concluded we could take care of things ourselves for a few weeks which would allow us time to get settled and then I could go door to door and try to find help, rather than trying to work something out by telephone. Hoping and praying that things would work out, I had also consciously put the matter into the Lords' hands. While Dean was in the bank in Monticello, my cell phone rang and it was our medical supplier letting me know that she had been on the phone with yet another home health agency but found that they did not take vent dependent patients. However, she had given my cell phone number to another agency, which she had spoken with, and told me that they may be in touch with us. A few seconds later the cell phone rang again, I answered it and heard the voice on the other end say, "Hi, this is David with Harmony Home Health and I need to get a little more information about your son Ryan so that we can get him set up in our system". After I caught my breath, I gave him all the information he asked for and told him that we were, at that very moment, on the way to our new home in Utah. He said that he would be back in touch and let me know if they would be able to take Ryan as a patient. We traveled on to Moab and the phone rang again, again it was David with more questions. To make a long story short, by the time we got to Mapleton, I had spoken with David again in Green River and Price and had a meeting set up so that we could meet their staff on Saturday and then they would begin services on Sunday! We are so blessed. They showed up Saturday at the agreed time; we had a very enjoyable visit, Ryan was impressed that "they talked the talk" and we were all excited that they were going to begin health care services Sunday morning.

I spoke with Scott later that evening, I told him that I was relieved and thought we had finally got the home health worked out, he said, "Mom, I don't know why you worry so much; you didn't need the service until today anyway!" After getting past the "worry", I know there is a good lesson to be learned; when we have done all we can do, we need to turn the matter over to the Lord and with faith and prayer, He will open doors. Again, we are so blessed.

We woke up Sunday morning to another six inches of snow!! Dean got his workout by helping to shovel walks and driveways. He came in and said he thought we had taken a wrong turn and we were actually in Alaska!! Rob and Kristen have been so gracious to let us live in their basement, which is not your "typical" basement; it is very nice and very comfortable. Their home is at the base of the Wasatch Mountains so as we look out our windows we see the beautiful snow covered mountain tops; it is quite picturesque.

As we unpacked and got settled, we made appointments with the Business Department at BYU so Ryan could talk with a guidance counselor to register for Spring Semester classes and with a Physiatrist to make sure we were on the right track with Ryan's care.

Our visit to the doctor was very informative and hopeful. Dean had met with Dr. King prior to us getting here and had briefly gone over Ryan's injury and what we were looking for in a doctor. As Dr. King was going over things with Ryan he made the comment that when he saw that we had made the appointment to meet with him he was a little nervous as to what he was going to find on the other side of the door as he came into the room. He said he had braced himself for the worst and feared that Ryan's condition would be a "mess" but he was very impressed and surprised that he was in such good health. He was also impressed that Ryan had so much movement in his neck and that he didn't require regular frequent suctioning. After we visited for sometime, he felt that Ryan should see a Pulmonologist specialist and do some testing on the phrenic nerve to see if they could see some diaphragm activity. He also wants us to see a urologist and make sure the bladder is functioning properly. But, the most encouraging word was that he felt there could be some recovery or possible improvement up to 18-months after the injury. He encouraged Ryan not to give up, but to go on with life and find something that he can be productive at. We left his office very encouraged and hopeful that our prayers will be answered, but realize we will deal with where we are at today.

After visiting with the doctor, we went to Olive Garden for lunch. We had a very upbeat, friendly and curious waiter. He sat down at our table and joked with Ryan as he kept asking questions about his chair and how he got hurt, etc. He was amazed at how Ryan was injured and that he didn't have the use of his arms or hands. When he brought Ryan's meal, he warned Ryan that his plate was "very hot." Ryan replied, "OK thanks, I won't touch it!" The waiter looked at Ryan and we all started laughing – he had forgotten that Ryan didn't have movement in his hands!! We do enjoy the fun and laughs.

After we left the restaurant, we went up to BYU's campus where Ryan was able to speak with a business counselor. He registered for a couple of general education classes; math and history. Most of his classes transferred from BYU-I; but he is going to have to take a couple of different courses to stay in the Provo campus Business Management Program. We asked lots of questions and received lots of help, but still need to go to the Accessibility Office and get set up for a note taker. The counselor also told him of a sample math (algebra) test, which was posted on the Internet, that he would have to pass in order to take the upper level math class. As we left campus, Ryan got quieter and quieter. I can always tell when he is "spiraling downward" as he doesn't like to talk. I have also learned to "let it be" until he is ready to talk – which is very difficult for me. When we got home, he looked up the sample math test on the Internet and became very discouraged. He than stated, "How am I going to do math when I can't even write?" Then the tears; mostly mine. It is so hard to know what to say, so I say a little prayer to hopefully say the right thing. I told him that the Lord has closed doors, but He will open others and things will work out – it won't be easy, in fact, this will be very difficult but things will work out. What else can I say? Lots to digest.

We are still working on getting approved for the Utah Waiver Program. I have a call into "our" Utah State Representative, Rebecca Lockhart, to meet with her. Tom Taylor, our New Mexico State Representative was kind enough to take the time to make a call to Ms. Lockhart and opened that door for us. We met all the requirements for the State of New Mexico, via the State of Colorado, which are very similar if not identical to the State of Utah's requirements. Even though the funding (as I understand it) for these programs comes from federal monies, each State runs their own program, so there is no reciprocity. We may have to go thru an appeal process to get approved; we will continue to move forward and do what we need to do to get the help Ryan needs.

We are still working on the house plans, hoping to go to the engineer for approval this week so we can get started building. When we left the architects office, we stopped and grabbed a sandwich and again Ryan was really quiet. I asked what he was thinking. With a sad face he said, "I should be roofing with my uncles." The physical part of this injury is difficult at best, but the emotional and mental aspect is HUGE. I feel like we are on a never ending roller-coaster ride; lots and lots of ups and downs.

Dean and I must have aged somewhat over the last year. Last week when I attended Relief Society, I was asked if I was Kristen's (Rob's wife) mother. Then today in Sunday School, Dean and I were asked if we were Rob's parents!!! Ryan just laughs! We told Ryan we weren't going back!!

Dean is getting used to shoveling sidewalks and driveways. Today we woke up to another four or five inches of snow!! It is beautiful; it warms up pretty fast, this time of year, so by mid day the streets are pretty well cleared off.

We are so grateful for the continued love and support. We couldn't do this with out each of you.

We love you and appreciate all that you have done.

Love,
Dean, Terry and Ryan

P.S. Here is our new address and telephone number:

1825 South 1200 West
Mapleton, UT 84664

Tele 801-494-2057 Fax 801-494-1464

Snow!

We're on our way. We had snow this morning in Farmington so I checked out weather.com and looks like we will be traveling in the snow. I showed Dean what the weather looked like on Friday and then asked him if we should still go – dumb question!! He said, "Yes".

We are looking forward to the move and trying to get settled in Provo.

Ryan received a call from BYU-Provo letting him know that a letter of acceptance was in the mail. In talking with the Dean of Admissions assistant, I learned that I worked with the Dean when I worked at BYU years and years ago. His assistant gave me her name and number as a contact person in the event that we need assistance when we get on campus. It makes it so much easier when we have someone who is willing to help us get past some of the hurdles. I am sure we will give her a call! Ryan is looking forward to getting back into school; however, he wishes so badly that he could return to BYU-Idaho. I told him tonight, "This probably sounds like a trite statement, but there must be a reason you need to be on the BYU-Provo Campus."

We are still working on the design of the house with our architect. I hope when we get it done, it looks and flows like I see it in my mind. Sometimes I have a hard time getting my vision on paper; I just need the architect to read my mind!!

We finally had a "seating" specialist (I'm not sure of the correct medical title) come and look at Ryan's manual wheelchair and get it operational. While he was here, he took a look at his power chair and after assessing both chairs he determined that we had the wrong size of chairs. He said that generally when a patient leaves the hospital he is at his lowest weight and the therapists always fit the chair to that weight, forgetting that when the patient gets home they generally get back to their original weight or sometimes even put on a few more pounds. Needless to say, we have to order larger seat cushions, height adaptor plates, etc. for both of his chairs. We will contact a specialist when we get to Provo to come and fix both chairs. We run the risk of having skin problems until the chairs are fixed.

I believe we have experienced Autonomic Dysreflexia (AD). Ryan was replying to several e-mails the other night and asked to have the speaking valve put in line. He has better success with the voice recognition software when the valve is in place. We haven't got the speaking valve fine-tuned so we don't use it very often; when he does us it, it isn't for long periods of time. I was standing in the kitchen, right across the counter from him, when he said in a troubled voice, "Mom I'm not breathing right, take this valve off." It takes a few seconds to get the valve removed from the circuitry; I was hurrying as fast as I could trying not to panic and jerk the trach right out of his throat! A few seconds after I got the valve out and the circuitry put back together he said that he was breathing a little better. I wheeled him into watch TV and he said again, "Mom something is wrong, I shouldn't have used the valve." His face turned bright red, his hands went white as a ghost and his fingernails were blue. I wondered "what now" and started crying (I think because I was so tired) and asked, "Do you want me to call 911?" He said, "No, just rub my forehead." I had to get myself under control since I was the only one home; Lisa had just left to go to volleyball practice and Dean was in Utah. My mind was racing and I thought, "How do I take care of him and call 911; and if I do call 911, will they even know what to do?"

I was trying to remember what they had told us in the hospital about AD. I remembered they said the number one cause of AD is urinary tract problems, then bowel issues, then anything – hang nails, kidneys, heart, etc. Since he has a toe nail that is infected, which we can't seem to get it cleared up, I took his shoes off hoping that would help. Then I made sure the tubing for his leg bag was not kinked. At that point he was in excruciating pain. AD is very serious and if not caught in time can result in (cut-n-past from the web!) severe hypertension leading to cerebral or subarachnoid hemorrhage, seizures, atrial fibrillation, neurogenic pulmonary edema, retinal hemorrhage, coma or death. When we were in the "Tetra-Topics" classes at Craig, they went over several times how serious AD can be, helping us realize the problem needed to be resolved expeditiously. A few minutes later, he finally started feeling better. That was the first and I hope the last time we experience that. After the episode was over I got him to bed, then I went to bed and cried some more; mostly due to tiredness but also wondering if this will ever end. Most times in life we look for new challenges and new experiences; we are learning to like the mundane!!

We have tried and tried to get Ryan's toe to heal. We may end up having to see a podiatrist to have his toe nail cut off if we can't nurse it back to health. Because his feet are so long (size 13) his feet hang over the foot-rests several inches. If he is not watching very closely, he hits his toes when making close turns or moving up to a table, etc. The other day he got in the van and hit his toe on the lift. I told him that in order for his toe to heal he was going to have to quit jamming it or maybe we could get him some steal-toed boots. After thinking about it, we decided he would probably be the only tretraplegic wearing steal-toed boots!!

I had the 24-hour flu bug and then Dean got it. We were hoping and praying that it would by pass Ryan – but, he was "hurling" tonight. Dean gave him a blessing, so hopefully he will have a mild case and be able to get some sleep.

During a visit with a friend the other night, she asked me how I could do all of this without showing any emotion. I told her that we all feel like we are in a "state of numbness." Each day we spend so much time on the phone trying to get insurance, prescriptions, home health care, waiver programs, and a job etc, worked out all the while making sure Ryan's needs are met. Every other night when I go into turn him (we turn him every three hours – hoping not to have skin sores), I have to pinch myself to see if this is really happening. It is so unreal. After I pinch myself, I realize, "Yes, this is really happening." I told Ryan about my thoughts of pinching myself every once in awhile; he said, "Mom, you can pinch me but I won't feel it!"

We haven't been able to get home health care assistance or the waiver program in place yet in Utah. I feel like I have talked to everyone in the State of Utah that has anything to do with home heath care and the waiver program in the last couple of months. I started this process before the end of the year but here we are down to the wire and still don't have anything in place. In order for Ryan to get on the Utah waiver program immediately, the State will require him to go back into a facility for 90-days to show that it would be more cost effective if he were in a home setting. I keep telling them I can put a pencil to paper and show them that it would be cheaper; they keep telling us "that's how it is done". If we don't put him in a facility, he has to go on a waiting list which could take up to five or ten years. Each person I have spoken with tells me the reason there is a waiting list is due to lack of money, lack of money, lack of money. When talking with the Director of the Utah Medicaid Program he again stated, "There is no money." I asked him to please not tell me there was no money, I had spoken with approximately 18 people who were in some way affiliated with the waiver program and they were all receiving salaries from the State of Utah; so there was money it just wasn't filtering down to the people who so desperately need it. He was kind enough to acknowledge my request and during our lengthy conversation didn't say any more about there being "no money." He had to catch himself a couple of times!! Hopefully, with the help of our NM State Representative we can make some progress. We'll see.

We are going to miss Farmington. We have been here for 21-years. Michelle and Lisa were born while living here; this is all our kids know. This was the first place we lived after we were married that we didn't have any immediate family. Since we have been here, we have made lots of friends and consider most family! We love you all and appreciate ALL that you have done for us. There have been so many that have made great personal sacrifices on our behalf. We appreciate the flowers, food, cards, visits, as well as the emotional, spiritual, and monetary support. Your love and kindness is so appreciated; we couldn't have done this without you. When we left Denver we talked about staying there, going to Provo then, or the Phoenix area. All Ryan wanted to do was to come HOME; he has felt such a closeness to many of you. We appreciate your concern and love for him.

Thank you for helping us raise our children.

With Love,

Dean, Terry and Ryan

Tubing Problems

Oh, it's hard to know where to begin!! We are working to make the move to Provo; trying to line out home health care, doctors, Utah Medicaid, the Utah Waiver Program, housing, etc. etc.

We are looking forward to the move; to get settled and to get Ryan back in school. We purchased property on the west side of Provo and are waiting for the architect to finalize our house plans; then we can start digging the hole!! We will be living in Mapleton until it is finished. Our new house will be about four miles from BYU's campus, which will be nice when the snow blows! Ryan is looking forward to getting back into school – even though it isn't BYU-Idaho; he would love to go back to Rexburg, but the medical resources are just not available to us there. He is looking forward to being closer to a lot of his friends there in Provo, though.

I do wish I could say that I was done packing and unpacking!! We have packed for short-term storage, long-term storage, and to get by until we get the house finished. Rob and Kristen, Dean's brother and sister-in-law, have been so generous to do some remodeling so that we can move into their basement for a few months. We have been so blessed by all those who have given of themselves. We know that there have been many who have made great sacrifices on our behalf, and we are so grateful.

All Ryan wanted for his birthday was to go to the temple; I called Grandma and pa Jones to see if they wanted to meet us in Albuquerque since Dean was in Provo. Lisa and I got brave and packed up and made the trip. We had a great day.

I guess Ryan's "crying wolf" was to prepare me for the times that he really wasn't able to breathe. On our way home from the temple, Ryan reclined his chair to do a weight shift and when coming back to a sitting position his vent circuitry got caught on the seat belt which anchors his chair to the floor of the van, breaking the circuit. Lisa was asleep in the back seat and he was watching a moving on the TV (which by the way is wonderful!) so I could see a little reflection in the rear-view mirror from the show that he was watching. I heard the "clicking" sound which he makes with his tongue and I looked into the rear-view mirror and asked him, "Are you OK?" He mouthed, "I can't breath." Remember, he has no voice when he has no air. I was driving about 65 miles-an-hour on Hwy 550 on the inside lane; the inside lane seems to be much smoother than the outside lane. My first effort was to get off the road and then I yelled at Lisa to wake up. There are bucket seats in the front of the van and with Ryan's chair being so long the footrests for his chair come up between the seats. My second thought was to get to the back of the van. As I was "flying" to the back, Ryan was mouthing "Turn on the lights, turn on the lights!" I never even thought of that!! I was just trying to get to him. When I got to the back, I turned on the overhead light which was right above his chair and Lisa was holding one end of the circuitry with a look of "What do I do!!" It was actually good that she had one end – it made it so much easier to figure out where the break in the circuitry was, so we were able to get him "hooked" back together. Grandma and pa were following us back to Farmington; after a few moments of, "Are you OK," Grandpa came to the door and asked if I was tried or needed anything. I said, "No, Ryan lost air but he is breathing again so we're fine!" Grandpa wasn't quite sure what to think. Ryan then asked, "Mom, why didn't you turn on the lights while you were up front?" I said, "I didn't even think of that, I just wanted to get to the back!" After we got everything situated, I looked at the front seat and thought, "How on earth did I get back here? And, in a dress and all!! What a site!!" It did take me a bit longer to get back in the drivers seat.

Wednesday he didn't feel real well and slept most of the day. He ran a little fever part of the day and his blood pressure climbed a bit, but by the end of the day he seemed to be fine. I don't know if it was the ride to Albuquerque that wiped him out or he had a touch of the flu bug. Because he can't feel anything, we will never know!

Once wasn't enough! Friday I was giving Ryan a breathing treatment which entails "breaking" the circuitry and inserting a nebulizer chamber. I got him all set and went down the hall to the spear bedroom to print some information off of the computer. As I was sitting there, I heard Lisa start blow drying her hair and then a big bang in the hallway. I came running out and Ryan was sitting in the hallway white as a ghost, on the verge of turning blue. I said, "Ryan, what's wrong?" He mouthed, "I can't breathe," while looking down at his chest. We are learning to make good eye contact, because he says so much with his eyes. I looked at his chest and saw that the nebulizer chamber had "popped" off and the circuitry was disconnected. I put it back together and he started breathing again. This time, it took him a bit longer to "catch" his breath as he probably had been without air for a little over a minute. I wondered how he got the air to "sip and puff" down the hallway; but then realized he could suck in a mouthful of air and blow into the straw to activate the chair. Needless to say, we don't leave him alone for even a minute any more.

That weekend Lisa's good friend asked her how her week had gone, she said, "Other than my brother almost dying twice, it was great!"

The Lord must have a purpose for Ryan to be here. I am amazed that he fights so hard for a breath of air. His will to live is so strong; he must have a mission to accomplish while here on this earth.

Ryan also got a really awesome Denver Bronco license plate for his birthday for "his" van. When Dean came home from Provo that weekend, I noticed that he had a Utah license plate on the front of the truck. I asked him if Utah required a plate on the front of the vehicle, he replied in the affirmative. I couldn't believe it; doesn't the Governor of Utah know that the front license plate holder is a coveted spot for your favorite team?? Grandpa said he would figure out a way to mount the license plate to his chair!!

We are trying to get Ryan "roadworthy" to make the trip to Provo, so Lisa and I took him to Gallup to see Tristen (sorry Michelle and Steve). Tristen loves his Uncle; when he saw Ryan he was so excited and held out his arms for a ride on the chair. We miss him so much; oh yeah, Steve and Michelle too! I believe the highway to Gallup is the bumpiest road in the country. When I would look back in the rear-view mirror, I would see Ryan's head just bobbling away. Lisa held onto the back of his chair most of the way, to and fro, to help smooth out the ride; it helped somewhat.

We are going to go to the temple again in Albuquerque this weekend (Dean will be with us this trip) so hopefully Ryan will be ready to make the seven hour drive to Provo next week.

Lisa is not going with us to Provo right now. She is coaching a volleyball team the rest of the month of March and then she is going to Gallup to work for Steve and hopefully earn some money for school. She has been such a delight. She is so upbeat and positive all the time. Today, she talked Ryan into going to the mall and Target with us; actually he said that Lisa and I should just go by ourselves!! – she finally convinced him he had to go. We had lunch while we were at the mall and as we were finishing up Lisa told Ryan that she would trade places with him if she could. He said, "OK, let's do paper, rock, scissors." She stood up and fisted her left hand and hit her right hand three times ending in scissors. Ryan said, "You win, I did paper". Lisa looked at him and said, "You didn't say anything." He looked down at his hand and said, "I didn't have to say anything, I did paper!!" She then stood up and went over and gave him a big kiss and said, "I wuv u so much brover!" Ryan just started laughing and said, "Let's go", Lisa said, "I'm not moving until you tell me you wuv me too." He said, "Give me the straw and I am going to run you over," she said, "Tell me or we are not going anywhere!" I was paying the check so I don't know if she ever got him to say it, but I do know that he chased her around annoying her the rest of the day. We are going to miss her when she goes back to school.

We are still looking for a home health care provider in Provo to help us with Ryan. I have talked with several agencies, but haven't found the "right" one yet. Some won't take him because of the vent, others want us to guarantee that Medicaid will pay (I wouldn't even venture to guess or guarantee anything the government will or will not do!) and we are waiting to hear from a couple of agencies. We have found a Doctor. The Lord does put people directly in our path!! Rob, Dean's brother, received a call from a gentleman in his ward asking him to teach his Sunday School class. During the conversation, Rob told him about Ryan and the gentleman told Rob that he and his brother specialized in spinal cord injuries. I had heard his name as being a "good" doctor thru my discussions with different people, offices, agencies and other tetraplegic's in Provo. We are so blessed.

We know that many doors have been opened to us thru good people who have been put in our path. We thank you for being part of our lives and helping us to get thru this ordeal; our load has surely been lightened. Some days it is hard to be patient, but we know that in "due time" all things will fall into place.

Love to all,

Dean, Terry and Ryan

P.S. Ryan did a great job at the Fireside. Since all my recording equipment is packed, we asked the ward if they would mind recording his talk. Not only did they record it, they video taped him. We are hoping that the "copy" comes at well enough that we can post it on the blog. Hopefully we will see it in a week or so.

Crying Wolf

It is hard to know where to begin—so much happens in so little time!!! We are doing good, just trying to make lots and lots of decisions.

It is a good thing that I love my children, or I would send them all to an orphanage!! Dean and I needed to go to Provo to make some decisions on housing. The house that we thought would work is not going too, so we have purchased some property and are going to build. We will live in Dean’s brothers’ basement until the house is finished. Hopefully, for Rob and Kathryn it won’t take to long!! Steve and Michelle have moved to Gallup so we made arrangements with Michelle to come up and help Lisa care for Ryan while we were gone. They thought that I was paranoid and kept telling me to leave, get out, etc. etc. I told them that I wasn’t paranoid; I was only honoring the Scout Motto – Be Prepared! I gave them a list of all the “things” I could think of. They pushed me out the door!! Before we got out of the city limits I had called three times giving them information that I had neglected to tell them; again, “Mom, it is going to be OK!!” A few miles further down the road my cell phone rang and I saw that it was the “Griffin Home” calling. I opened the cell phone and said, “Ha, I knew you would need me!!”

Lisa said in a somewhat troubled but controlled voice, “Mom, what do you do if the vent falls off of the chair?” I took a deep breath and said, “First of all, is Ryan breathing?” “Yes, but Michelle had to bag him.” “What should the settings be,” she asked. My mind was racing; I was trying to figure out how the vent could have fallen off the chair, then I recalled that the nurse who is attending to Ryan’s respiratory care had been at the house the day before doing maintenance on the vents and thought maybe she hadn’t set the vent on the chairs’ vent tray correctly. I said to Lisa, “Do we need to come back?” All the while thinking their adults, they can handle this – or can they?!! She again asked, “What should the settings be?” Then I heard Ryan cackling in the background!! I asked very firmly, “Lisa, is Ryan OK, are you guys pulling my leg? She then started laughing and I could hear them all laughing. She said, “Mom, Ryan made me do it, he told me all the questions to ask, he made me do it!!” I told her that they were all brats and I wasn’t going to call the entire time we were gone – they were on their own!! I have a speaker on my cell phone; I had turned it on so that Dean could hear the entire conversation. After we got past the “scare” we looked at each other and said, “They’re going to be fine – but if we could, we would send them to an orphanage, but then we figured that no one would have them!! I guess since Scott was 180 miles away – he gets a pass – this time!

This is Scott, I just had to interject here. We learned all of this from our Dad!!

We do have some fun times! Truthfully, we are so grateful to have such great kids that will step up and help when we need them.

When we got back from Provo we were able to go to Albuquerque to the temple. We are so grateful to be able to do that; although, it will be nice to get to Provo where there are so many temples in such close proximity. The day we went I had all the “stuff” we take in the hallway, waiting to be put in the van. When one of the caregivers came in she saw the boxes and bags and asked if we were moving? I told her, “No, just going to Albuquerque.” She was amazed at the supplies and equipment that we need to take with us! We so enjoy being at the temple, it brings such feelings of peace and solace, during these days of such stress and turmoil. We met up with Scott and Becky and had a nice dinner before we traveled home. It makes for a long day, but it is well worth it.

We had a most cherished day Sunday. Our Stake had our semi-annual Stake Conference and Elder Merrill J. Bateman, of the Presidency of the Seventy, and Elder Timothy J. Dyches, of the Sixth Quorum of the Seventy, were our visitors. Elder Bateman and Elder Dyches, as well as Elder Perry Webb, of the Sixth Quorum of the Seventy, who lives here in Farmington and was our fist Bishop when we moved to the area stopped by and visited with Ryan in our home. We are so blessed.

During our conference, Elder Bateman spoke about the purpose of coming to earth – to first gain a body and then gain as much light thru knowledge that we can so we can return to our Heavenly Father some day. He taught us that as we gain that light our countenance changes. He stated that he could interview a return missionary and within about 30 seconds know if they had served an honorable mission.

After the Saturday adult meeting he wanted to meet Ryan, so he asked that we wait for a bit until he could get back to where we were sitting. He told Ryan that his body was not working well now; but he should look with an eye of faith to the eternities, because it would serve him very well there.

As he visited with Ryan Sunday, among other things, he told Ryan that he could tell that he was an honorable missionary and that the “light” that was spoken of earlier in the day showed in his countenance. Elder Webb told Ryan, among other things, that he had “chosen his chair” before he came to this earth and he had a purpose here.

We are so grateful to have Ryan in our home and for the example that he is. He is such a blessing to us and has taught us much.

On a lighter note, Elder Bateman told Ryan to get back into school and finish his education. He said that BYU would help him with any of his needs, one of which would be a note taker. After they left, we teased Ryan that we would get him the best note taker on campus and he could be the next valedictorian!!

Ryan has been asked to speak at a fireside for one of the Wards in the area. He has been asked to speak for 30 to 35 minutes. Ryan is not a man of many words; I don’t think he has spoken that much in a week’s time. Actually, he says that he is looking forward to the experience. He will do a great job.

All of the parts for the speaking valve got here. We made the appointment to have the new trach and valve put in; but, in the end it didn’t work. Part of the problem before we left Craig Hospital was the high pressure readings Ryan was getting on the vent – he was getting too much air and couldn’t blow the air out fast enough. We ended up having to go back to the old style trach, only without the cuff. We have made an appointment to go back to Denver for his semi-annual checkup, the end of May, so we will pursue the speaking valve while there. He actually speaks very well, but if the valve will enhance his voice, that would help him on the computer, in school, etc. etc.

Ryan passed out again! Lisa and I were giving him a haircut and he started the deep moaning sounds which he does just before his eyes roll to the back of his head. I was standing in back of him and had just asked if he was OK. Lisa was standing in front of him and saw his eyes roll back and said, “Mom, get him!” After we brought him back, Lisa said, “That was scary!” That was the first time she had seen him pass out. It is scary even after the numbers of times I have seen it happen!! He has been doing really well; the last time he passed out was when Dean and I were cutting his hair. Maybe we should quit cutting his hair; is he really Samson’s double??

He continues to have the bouts at night with that excruciating pain where he tells us that his arms and legs ache. The other night he said it feels like a muscle cramp throughout his body?? Ouch! We keep hoping that that is something good – and not phantom pains. The pain comes on so fast he can’t tell us in enough time to get meds down him; when we do get the meds down him he has such a gloomy day the next day, which is miserable for him too. If it is phantom pains, I hope they subside soon because watching his face it is almost unbearable for him, yet he rarely complains.

He has a birthday coming up, he is our Valentine baby!! He has always been a sweetheart! We have racked our brains trying to think of what to get for him – he has always been a pretty “simple” guy. He keeps telling me he doesn’t need anything!! Any ideas, let us know.

Dean is up in Provo now; he is going to Real Estate school to get his license. We feel like and hope that this will provide the income which we need as well as some flexibility so he can help if needed at home. He has gone to school all week; he said he feels like a kindergartener in college!! It has been a long time since he sat in a classroom!! I would like to go to respiratory school, but the closest one is in Salt Lake – so we will see if I can work that out. I would like to know more about Ryan’s breathing capacity and be legitimately trained on the respiratory system.

We are hoping to make the big move to Provo by the 10th or 11th of March. Ryan will start school, hopefully, the middle of April so that will give us some time to get into somewhat of a routine. We are looking forward to getting settled. It will take some time to get the house built – but we look forward to that as well. We have decided to act as our own general contractor to save some money. Hopefully, it will stay standing when we get finished!! We are going to “use” Dean’s brothers who have been in the business for some time; we also spoke with one of the Provo City Engineers, he is going to help – since we have such a unique situation. We will have wider hallways, wider doors, wiring for an Environmental Control Unit system – so Ryan can turn on lights, the TV, ect., oxygen hookups, no steps – ramps entering and exiting, it will be quite open so Ryan can go anywhere in the house he wants, a floor level deck so he can “wheel” outside and see those beautiful Rockies, etc. etc.!! Any ideas, let us know.

We so appreciate all those who are so willing to continue to help us. It is so comforting to know that we can pick up the phone, write an e-mail, or personally request and help is just moments away. We love you all. Thank you just doesn’t seem appropriate anymore – but that is all we have. Someday I hope that we can “pay it forward.” Thanks again, we love you.

Dean, Terry and Ryan

Moving

Ryan told me I needed to write, even though the “cloud” of despair is hovering over our lives. We keep hoping that things will get easier, but the refiner’s fire is still at work.

Thanks to new tretraplegic acquaintances, we are learning about the “little” things that make life a little bit easier. We learned about a Passy-Muir speaking valve which should allow Ryan to speak without pausing. Right now, he only has a voice when he exhales. When the vent exhales for him it allows air to pass by the vocal cords, giving him a voice. The Passy-Muir valve will be placed “in-line” in the vent circuitry, when the vent exhales, this valve with create a back-pressure forcing all of the air to pass thru the vocal cords, rather than most of it being pushed out through the circuitry. We hope that this will help Ryan with the Dragon Naturally Speaking software and while speaking on the phone, etc.

After I had heard about the valve, I got on the internet and read about it and learned as much as I could before our appointment to see an Ear, Nose, & Throat (ENT) specialist to learn more about the valve and to specifically to see if it would benefit Ryan. The ENT was familiar with the valve, but sent us to a Speech Pathologist (SP) for fine tuning and to see if the valve would actually be a benefit or just some additional equipment we would have to manage. The SP had used the valve on a couple of patients but not on a vent dependent person who required suctioning periodically. After almost an hour of discussion, she showed us a Shiley trach tube that we would need to use with the new valve. This new trach will be a benefit to Ryan since he doesn’t use the “cuff” anymore, it will be much easier to change out and painless – which is always a good thing. The SP recommended we use a fenestrated (hole in the tubing) trach tube and went into great detail as to why it was the best suited trach tube for Ryan. When the doctor took a breath, Ryan was able to ask how he would be suctioned with the hole in the tubing; “Won’t the suction catheter go down the back of the trachea rather than thru the tubing,” he asked? The doctor looked at him and then back at the trach tube and said, “I hadn’t even thought of that.” I pulled out a suction catheter from his suction bag and showed the doctor what he was talking about – sure enough, the catheter would have either gotten caught in the trach tube or been forced thru the hole and down the wall of the trachea. She was somewhat embarrassed and then told Ryan he was brilliant and very much on top of things. During the next hour of discussion she continued to thank Ryan for being so attentive to his care. After we left, we went to dinner and discussed our hope of being able to get thru this!!!

Since Dean lost his job and we no longer have private insurance, Ryan’s sole form of assistance is Medicaid. After the first of the year I had to notify the Medicaid office of the change and “WOW” what difficulties that has created. Ryan is on 12 to 15 different types of medication at any given time. Medicaid won’t approve five of the medications that he is currently on; they are requiring us to “trial” drugs from their approved listings. I am baffled as to how we can spend four months in rehab and close to 1M dollars and then have to start over, trialing medications. I asked the his doctor if there were side effects with the change in medications, which she agreed there may be some, how we are going to tell which drug it is, since we are looking at five different medications – she wasn’t sure what to think.

Ryan’s doctor called today and said that Medicaid didn’t approve her appeal for the blood pressure medication that Ryan has been on for eight months – the drug the doctors at Craig finally got right; which stopped or at least lessened the blacking out. Go figure!!

While all of this is going on, we have decided to move to the Provo/Orem area. We are hopeful that this will give us more medical resources as well as get Ryan back into school and more opportunities for social activities with kids his own age. Dean went to Provo the second week of January and I was up there last week starting the process of moving. We felt like missionaries out tracting – we had more doors slammed on us!!! It doesn’t look like the Medicaid benefits are going to be much better up there; in fact, we had one lady tell us, that we needed to “shop around” looking into other States benefits to see which one offered the best aid!! I tried to be polite as I told her that Medicaid wouldn’t dictate where we could live!!

Utah also has a waiver program, which allows for additional benefits above and beyond regular Medicaid. Their program also requires an individual to be in a care facility for 90 days, just as New Mexico, to establish a patients needs and show it would cost the State less monies to allow him/her to go into a home setting and have family do the bigger portion of the care. I didn’t think this was rocket science – but maybe it is.

While visiting with this same women, I asked her if that requirement could be waived as Ryan had been in a care facility for four months. She said, “If he is going to live for five or ten years, what is 90 days out of his life?” At that point, I almost came out of the chair!!! I realized we weren’t getting anywhere and tried very hard to keep my cool while thanking her for her time. Sadly, she was the eighth person I had been directed too, which supposedly was going to “help” us.

I had contacted a realtor prior to arriving in Provo to look for housing. Obviously we have special needs, so I felt it best to try and explain our situation before scheduling appointments that just wouldn’t work. I took pictures with me of Ryan in his chair, his bed, the hoyer lift, the shower chair, and his therapy table – pictures are truly worth a thousand words!!

The pictures helped a lot; however, we looked at five or six houses that had potential but would require some if not extensive remodeling to be readied for Ryan. After such a negative response from the State Health Department and then looking for housing and not finding the right one, I was ready to give up. Then we received a call from the realtor to look at one more house – Hooray, we found something!!! So the next step is to put all the puzzle pieces (a doctor, a hospital, Medicaid, home healthcare, packing, etc.) together and make the move.

Another one of our new tetraplegic friends, which I met while in Provo, told me, “this will be a fight everyday for the rest of your life.” He should know; he has been in a chair for 24 years. I keep reminding myself of President LeGrand Richards’ words, “Just pull up your boot straps and keep going”. We will press forward, with a prayer in our hearts that “all will be well.” Thanks so much for your continued love and support. So many have kept us in their prayers and called with very much needed advice and resource information. We love you all.

Love,

Dean, Terry and Ryan

Happy New Year

Happy New Year to all. We weren’t able to go to Gallup; Ryan didn’t get past what ever it was that made him sick until Wednesday. It is difficult at best to try and diagnose the ailment, being that he can’t tell us where it hurts. Tristen had a stomach flu bug for several days and didn’t feel good at all and Dean and I had head and chest congestion so we think it was one or the other – gratefully he got to feeling better without ending up in the hospital. Our doctor was out of town, but her aide was so good to stay in touch with us to make sure we didn’t go past the “critical” mark.

We were going to have a “little” party New Years Eve to bring in the New Year – but, Ryan got that excruciating pain that comes on so quickly. He tells us that the pain comes on so fast he isn’t able to let us know and get pain medication down to ease it. Luckily this time it only lasted about two hours before he was able to fall asleep. He did watch the New Year’s Eve, Times Square ball drop and then turned and looked at me and said, “Happy New Year” in a somewhat discouraging tone!

It seems that reality is settling in. With all the Christmas festivities going on around us we were able to set aside some of the major decisions that we need to make; but, that time has come. I have been visiting with a couple of people regarding transferring Ryan’s durable medical equipment (DME) (ventilators, nebulizers, suctioning equipment, etc.) and I am learning that it is not going to be real easy, especially since we no longer have any health insurance. Ryan’s sole medical coverage will be Medicaid now and the benefits can differ greatly from State to State. I think we are going to have to find a provider where ever we go and then have the new equipment shipped here and then we will move it!!

Friday we received word that the Disabled and Elderly Waiver application which we have been working on since July was approved by the State of NM. I don’t know what we will have to go thru in the State we choose to go to; I sincerely hope that the applications for the D&E Waiver, Medicaid, and Social Security Disability Income will all just transfer over to their respective programs.

We were in the process of registering Ryan for a couple of college classes at Highlands University; Highlands has an extension office at the community college here in Farmington. We will put that on hold until we decide where our new home will be.

Ryan got a fish tank for Christmas. We sat it up on his dresser; it has been fun to watch God’s creations. We brought five fish home; one of them died, but a couple days later we saw two new little teeny tiny fish. We “scout-out” the fish every night before Ryan goes to bed; we haven’t seen the two new little ones – with a bit of luck they are hiding in the plants. We are hoping they didn’t get eaten!!

We hope that this New Year will bring some peace and tranquility to our lives – actually the fish help somewhat with that!! We are grateful for the many blessings we have and look forward to this New Year and pray that the Lord will inspire us and help us with the many decisions we get to make. We are so grateful to the many many friends and family who have been so kind and loving. May the Lord bless each of you in this New Year.