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
Monday, May 22, 2006
Friday, May 12, 2006
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
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
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