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.
Tuesday, February 28, 2006
Friday, February 10, 2006
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
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
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