De Bed, de Bed! We received the overlay for Ryan’s bed! The overlay or mattress was scheduled to be delivered on Friday for several weeks. We received a call from the company that ordered it early Friday morning letting us know that they had tried to contact the vendor of the overlay in Ft. Lauderdale, Florida since early Wednesday without any luck. With the recent hurricane in that area they thought that their phones may be out, and wanted to let us know that the overlay probably wouldn’t be delivered as scheduled. We had looked so forward to finally getting Ryan’s bed set up so that he could “stretch” out without hitting the footboard. Late Friday afternoon, the call came that the overlay had just been dropped at the supply office here in Farmington and they would like to deliver it “right away!” Yeah! The overlay was delivered about 4:30 pm and the young man that delivered it helped Dean get the bed frame from the garage to Ryan’s room; which was a feat in itself. The frame was heavy! I asked Dean how much it weighted he said, “A bunch, it about killed both of us getting it in here!” Ryan and I had gone to the movie, so we missed the circus!! This bed is long enough that Ryan can sleep on his back with his legs stretched out and it is a little bit wider than the bed he had been sleeping on. He had a great nights’ sleep Friday night!! Oh yeah, I can now finish decorating his room, something I know he has laid awake at nights fretting about!!
With the bed here, the next thing is to get the rest of the supplies ordered and all of his supplies and meds on a shipment/delivery schedule; I then will feel like we are finally settled in.
We made it to Albuquerque and back without any surprises or worries. The caregivers were gracious enough to come an hour and a-half early to get Ryan up and going so that we could be on the road around 10:00am. We actually didn’t leave until 11:00 am; Ryan wanted to stop and get donuts for breakfast. He is still a college kid, junk food is the best! Actually, we enjoyed the donuts too. This was the fist “road trip” we have made since we have been home. Ryan did real well. Albuquerque is a three hour drive from Farmington, we anticipated that we would need to stop a couple of times, but we only stopped once. I sat in the back so that I could help him if he needed anything. Ryan needed to have a breathing treatment; as we were driving along, I started to disconnect the vent tubing to insert the nebulizer – at that moment we hit a bump in the road and I asked Ryan if he thought I could make the change while driving or did he think we needed to pull over. Having experienced me yanking on his trach when giving him a breathing treatment while sitting stationary in the living room he said, “dad, pull over please” and then smiled up at me!” That was our only stop!!
It was so nice to go to the temple. Our oldest son Scott and his wife Becky met us there; it was so good to see them. As we were waiting for the session to start, I was thinking that with all the changes in our lives, it is so nice that the Gospel of Jesus Christ doesn’t change; whether in Rexburg, Idaho Falls, Denver or Farmington we can count on constancy. Ryan was welcomed with open arms. Because my mom and dad served in this Temple for several years we know quiet a few of the temple workers and many we have known since living in New Mexico in Grants, Gallup or Farmington. Ryan loves to go to the Temple. When living in Idaho Falls or Provo he would go every week, because of the close proximity of the temples in those areas.
When we walked in the door, we met some of our friends from Farmington. Bro. Taylor has been in a wheelchair for years, although he hadn’t met Ryan he knew of him and Ryan remembered seeing Bro. Taylor at the church on different occasions throughout the years. After visiting a bit, he told Ryan, “I can’t do much with my hands, that is the nice thing about the Temple, we do what we can and the Lord accepts it and does the rest.” I am sorry to say, that it has taken this trial for us to realize that we are all sons and daughters of a Heavenly Father who created us and loves us. It doesn’t matter our station in life, what imperfections we may have, some more noticeable than others, the Lord loves each of us unconditionally.
After such a busy day yesterday, Ryan spoke in Sacrament Meeting today. He referenced Alma 34 in the Book of Mormon and spoke about not procrastinating the day of our repentance that we should work out our salvation with God now. We are truly blessed to have him in our lives. Ryan has taught us so much over the years, but more so in the last couple of months. He loves the Lord and gives thanks each day to Him for the blessings that he has in his life. We are so grateful for his testimony.
Love,
Dean, Terry and Ryan
Sunday, October 30, 2005
Wednesday, October 26, 2005
Not Contagious
Our challenges with Ryan’s care givers are just that, challenges!! We had no shows Monday and Tuesday as well as Saturday and Sunday last week. I received a call from the CEO of the company on Tuesday informing us that they wanted to do the job and felt like they would do a great job for us. She apologized for what happened over the weekend and then I let her know that she had two more no shows – she was a little embarrassed. She wants to send in ALL of her nurses to be trained so that they don’t run into those problems again. She said that she had ten or twelve nurses she wanted to train!! My mouth dropped open, I express my concerns about Ryan’s psychological and emotional state right now being that we have been home over a month and it seems that we are just starting from scratch. Having all those nurses around would be overwhelming for a healthy person. I suggested that they come in and Dean and I would walk thru all the steps with them. She felt like his care was too individualized so Ryan would always need to be involved. She is at a conference in Las Vegas this week which will give us all some time to figure out what is in Ryan’s best interests.
Ryan started CES Institute classes this week. He really enjoyed getting back in the classroom. He also enjoyed meeting some kids more his age; most had just graduated from high school this past year so they were a few years’ young than him. When the teacher introduced Ryan he asked him if he had anything to say about his injury, Ryan replied, “it’s not contagious!” That broke the ice. The teacher then asked if any one had any fears or concerns. One of the kids asked how he was injured and Ryan briefly told them the story. It is nice for him to start getting involved with things again.
Ryan tried out the voice activated software today. All in all, it went quite well. He tried the same software at Craig Hospital but didn’t have much luck in getting it to work. The software we have came with a headpiece which has a microphone. With the microphone right next to his mouth, he was able to get better voice recognition; where as at Craig he was sitting about two feet away from the microphone and it was picking up all the background noise (ventilator, the humming florescent lights, five assistants in the room, etc. etc.). He played with it for about two hours and was able to get around pretty good, after he went thru the tutorial. He then surfed the net and played with his e-mail site. We would love to hear from anyone with any experience with this type of software. Ryan hasn’t really done much with computers over the years; he preferred the manual labor side of things, roofing, construction, etc. We are hoping this is a new beginning for him. I keep telling him that he can get into the architectural business and design roofs and houses. Well see!
Our Stake has a temple day Saturday at the Albuquerque Temple. Ryan wants to try and go. We are excited, although we are a bit apprehensive to make the journey. Ryan’s longest ride in our van so far has been 20 minutes or so; he did take longer trips while in Denver. Then, not to mention all the “stuff” that we will need to take, a second vent, portable lift, slide boards for transfers and a foam mattress in the event we have to stay over night, breathing treatment equipment, meds, suction equipment, supplies for 24/48 hours (just in case), and the list goes on. We do have a TV in the van so hopefully that will help pass the time for him. We also have AC and DC hookups in the back for his chair, vent, suction machine and breathing equipment. Hopefully there won’t be too much road work along the way. Since we have been transporting Ryan, we have become well aware of the potholes, the utility access ports, as well as uneven payment. Each time we hit a bump, his head “bobbles” to-and-fro! As his neck muscles get stronger, it is getting easier for him.
We are so grateful to all of you for you help since we have been home. The wonderful meals, the help with house work, cookies, candies, etc. etc. No wonder Ryan had a cavity!! One of our dear friends came and got the foot rests off of his shower chair to add about 4 or 5 inches to it – everything has to be longer! All we do is mention a need and we have people here ready to take care of whatever. We love you all and so enjoy all of your e-mails, letters, cards, notes, etc.
Love, Dean, Terry and Ryan
Ryan started CES Institute classes this week. He really enjoyed getting back in the classroom. He also enjoyed meeting some kids more his age; most had just graduated from high school this past year so they were a few years’ young than him. When the teacher introduced Ryan he asked him if he had anything to say about his injury, Ryan replied, “it’s not contagious!” That broke the ice. The teacher then asked if any one had any fears or concerns. One of the kids asked how he was injured and Ryan briefly told them the story. It is nice for him to start getting involved with things again.
Ryan tried out the voice activated software today. All in all, it went quite well. He tried the same software at Craig Hospital but didn’t have much luck in getting it to work. The software we have came with a headpiece which has a microphone. With the microphone right next to his mouth, he was able to get better voice recognition; where as at Craig he was sitting about two feet away from the microphone and it was picking up all the background noise (ventilator, the humming florescent lights, five assistants in the room, etc. etc.). He played with it for about two hours and was able to get around pretty good, after he went thru the tutorial. He then surfed the net and played with his e-mail site. We would love to hear from anyone with any experience with this type of software. Ryan hasn’t really done much with computers over the years; he preferred the manual labor side of things, roofing, construction, etc. We are hoping this is a new beginning for him. I keep telling him that he can get into the architectural business and design roofs and houses. Well see!
Our Stake has a temple day Saturday at the Albuquerque Temple. Ryan wants to try and go. We are excited, although we are a bit apprehensive to make the journey. Ryan’s longest ride in our van so far has been 20 minutes or so; he did take longer trips while in Denver. Then, not to mention all the “stuff” that we will need to take, a second vent, portable lift, slide boards for transfers and a foam mattress in the event we have to stay over night, breathing treatment equipment, meds, suction equipment, supplies for 24/48 hours (just in case), and the list goes on. We do have a TV in the van so hopefully that will help pass the time for him. We also have AC and DC hookups in the back for his chair, vent, suction machine and breathing equipment. Hopefully there won’t be too much road work along the way. Since we have been transporting Ryan, we have become well aware of the potholes, the utility access ports, as well as uneven payment. Each time we hit a bump, his head “bobbles” to-and-fro! As his neck muscles get stronger, it is getting easier for him.
We are so grateful to all of you for you help since we have been home. The wonderful meals, the help with house work, cookies, candies, etc. etc. No wonder Ryan had a cavity!! One of our dear friends came and got the foot rests off of his shower chair to add about 4 or 5 inches to it – everything has to be longer! All we do is mention a need and we have people here ready to take care of whatever. We love you all and so enjoy all of your e-mails, letters, cards, notes, etc.
Love, Dean, Terry and Ryan
Sunday, October 23, 2005
Hot
It has been such beautiful weather here in Farmington. We love the fall. We have learned that if Ryan is on the heated humidifier at night, he doesn’t get as cold during the day. The air mattress that he is on right now (the longer one should be here Friday!) has heated air pumped thru the cells, but it doesn’t require a mattress pad or a fitted sheet, it has a synthetic cover with a sheet overlay, so it can get a little cool by morning. The humidifier helps to keep his lungs heated, which seems to help him stay a little warmer. When visitors stop by they can’t believe how “hot” our house is – Ryan is sitting under a blanket and the rest of us are fanning ourselves. I don’t know what we are going to do when it gets to be winter.
We are still struggling with caregivers. We had a meeting with the CEO of the home healthcare company that we are using. We knew that this was going to be a challenge, but I guess we didn’t realize that it was going to be a major ordeal. The CEO acknowledged that Ryan was a very high maintenance and high ranked patient. They are scheduling nursing staff that are unable both physically and medically to care for him; lifting his arm by his index finger, not being able to take care of his personal needs, etc.. We have had to step in daily and help or complete his care. I had told Ryan while we were in Denver that we would do everything we could to have professional caretakers provide his daily care in an effort to preserve his dignity.
Our meeting included our primary physician, the home healthcare company, as well as the executive director of the firm that will manage the Disabled and Elderly Waiver Program which we have been working so hard to get. The CEO from the home healthcare company came bearing gifts; a two week notice to find another company to provide care!! Our problem is that her company is the only game in town licensed or registered with the State of NM to provide care for the D&E Waiver program. In short, our physician matter-of-factly explained that the resignation was unacceptable and that they needed to provide nurses that were qualified and trained properly. In the end, we set some goals for all parties to try to achieve.
Friday night, after our meeting, we had a surprise visit from Ryan’s bishop from Denver, Bishop Hatch and his family. They were traveling thru from Denver to Phoenix; we were so grateful to them for taking the time out of there very busy schedule to drive a few extra miles to come and see Ryan. We had a nice visit and caught up on the activities of the ward and our new found friends in Denver.
While they were here, Bishop Hatch shared a story with us that we would like to share. Understandably, we don’t share everything on the Blog site, a lot of the “happenings” are too close to our hearts, but this story was such a help for Ryan this weekend. While we were in Denver, Ryan was able to assist with the blessing of the Sacrament during one of the Sacrament meetings. With the challenges of a ventilator, Ryan wanted to articulate the Sacrament prayer correctly and with meaning. Unbeknownst to Ryan or any of us, his deliverance of the prayer had an impact on one of the members of that ward; a young man had a “change-of-heart” and wants to better his life and get to know his Savior, Jesus Christ.
Saturday morning arrived and our phone rang at 7:00am; the home health agency was on the line informing us that the nurse they had scheduled was sick and they didn’t have any other staff to send over. As anyone can imagine, this injury has been quite devastating in all aspects of his life, but Ryan has become very discouraged with the process of finding caregivers; he has come to think that there is not anyone out there that can take care of him or wants too. He was hoping that we could find nurses to take care of his personal needs and not have to rely on his mom.
Ryan was visibly upset. As we were getting him ready for his shower, he just sobbed and said again and again, “This isn’t me.” Thru my tears I tried to encourage him and help him see beyond the present. I told him that maybe his “mission” in this life was to help people like the young man in the Denver ward to “come unto Christ.” I told him that I know that this doesn’t help but, “Heavenly Father made moms to take care of their children and Dads’ and my job is to keep you as healthy as possible. We have to get past the “physical” part of this injury and if we couldn’t get the health care people we needed, Dad and I would take on that responsibility and hopefully keep him well, his job was to move forward past all of this, work on getting back in school, getting a job, and make a difference in his life as well as someone else’s life.”
Today was the same story; we received a call that no one would be here from the home health care agency. I told Ryan that I wouldn’t want to be anywhere else! Hopefully, we can see beyond the “physical” aspects of this injury and move on. I have said that the mental, psychological and emotional side of this injury is gigantic in comparison to the physical.
Meredith was also here this weekend; Ryan enjoyed her company, but they have decided to “take a break.” I keep wondering what more he can handle??
I have been looking thru the internet into any “medical advancements” which have been made with spinal cord injuries, one of which is electrical activation to the diaphragm to stimulate breathing. I told Ryan that I had found a treatment we may be interested in and wondered if he would be willing to participate in a study? He asked for more details, when I was finished telling him about the procedure he said, “I don’t think so, I am going to breathe on my own soon.” Faith….. what can I say other than he is such an awesome kid – hopefully he can handle what comes his way!
Our faith continues to grow and develop. We remain steadfast in the hope and continue to pray that Ryan will be able to breathe on his own.
We love you all.
Dean, Terry and Ryan
We are still struggling with caregivers. We had a meeting with the CEO of the home healthcare company that we are using. We knew that this was going to be a challenge, but I guess we didn’t realize that it was going to be a major ordeal. The CEO acknowledged that Ryan was a very high maintenance and high ranked patient. They are scheduling nursing staff that are unable both physically and medically to care for him; lifting his arm by his index finger, not being able to take care of his personal needs, etc.. We have had to step in daily and help or complete his care. I had told Ryan while we were in Denver that we would do everything we could to have professional caretakers provide his daily care in an effort to preserve his dignity.
Our meeting included our primary physician, the home healthcare company, as well as the executive director of the firm that will manage the Disabled and Elderly Waiver Program which we have been working so hard to get. The CEO from the home healthcare company came bearing gifts; a two week notice to find another company to provide care!! Our problem is that her company is the only game in town licensed or registered with the State of NM to provide care for the D&E Waiver program. In short, our physician matter-of-factly explained that the resignation was unacceptable and that they needed to provide nurses that were qualified and trained properly. In the end, we set some goals for all parties to try to achieve.
Friday night, after our meeting, we had a surprise visit from Ryan’s bishop from Denver, Bishop Hatch and his family. They were traveling thru from Denver to Phoenix; we were so grateful to them for taking the time out of there very busy schedule to drive a few extra miles to come and see Ryan. We had a nice visit and caught up on the activities of the ward and our new found friends in Denver.
While they were here, Bishop Hatch shared a story with us that we would like to share. Understandably, we don’t share everything on the Blog site, a lot of the “happenings” are too close to our hearts, but this story was such a help for Ryan this weekend. While we were in Denver, Ryan was able to assist with the blessing of the Sacrament during one of the Sacrament meetings. With the challenges of a ventilator, Ryan wanted to articulate the Sacrament prayer correctly and with meaning. Unbeknownst to Ryan or any of us, his deliverance of the prayer had an impact on one of the members of that ward; a young man had a “change-of-heart” and wants to better his life and get to know his Savior, Jesus Christ.
Saturday morning arrived and our phone rang at 7:00am; the home health agency was on the line informing us that the nurse they had scheduled was sick and they didn’t have any other staff to send over. As anyone can imagine, this injury has been quite devastating in all aspects of his life, but Ryan has become very discouraged with the process of finding caregivers; he has come to think that there is not anyone out there that can take care of him or wants too. He was hoping that we could find nurses to take care of his personal needs and not have to rely on his mom.
Ryan was visibly upset. As we were getting him ready for his shower, he just sobbed and said again and again, “This isn’t me.” Thru my tears I tried to encourage him and help him see beyond the present. I told him that maybe his “mission” in this life was to help people like the young man in the Denver ward to “come unto Christ.” I told him that I know that this doesn’t help but, “Heavenly Father made moms to take care of their children and Dads’ and my job is to keep you as healthy as possible. We have to get past the “physical” part of this injury and if we couldn’t get the health care people we needed, Dad and I would take on that responsibility and hopefully keep him well, his job was to move forward past all of this, work on getting back in school, getting a job, and make a difference in his life as well as someone else’s life.”
Today was the same story; we received a call that no one would be here from the home health care agency. I told Ryan that I wouldn’t want to be anywhere else! Hopefully, we can see beyond the “physical” aspects of this injury and move on. I have said that the mental, psychological and emotional side of this injury is gigantic in comparison to the physical.
Meredith was also here this weekend; Ryan enjoyed her company, but they have decided to “take a break.” I keep wondering what more he can handle??
I have been looking thru the internet into any “medical advancements” which have been made with spinal cord injuries, one of which is electrical activation to the diaphragm to stimulate breathing. I told Ryan that I had found a treatment we may be interested in and wondered if he would be willing to participate in a study? He asked for more details, when I was finished telling him about the procedure he said, “I don’t think so, I am going to breathe on my own soon.” Faith….. what can I say other than he is such an awesome kid – hopefully he can handle what comes his way!
Our faith continues to grow and develop. We remain steadfast in the hope and continue to pray that Ryan will be able to breathe on his own.
We love you all.
Dean, Terry and Ryan
Wednesday, October 19, 2005
The Dentist
We have had a busy week and it is only Wednesday!! Ryan had a very difficult day Sunday and then Monday he got to go to the dentist. Over the years I have said that I would rather have a baby than go to the dentist! No, I am not going to have another baby, nor go to the dentist!!
The dentist we went to has a new office and each exam room has state-of-the-art equipment. They had him maneuver his chair into a room with the equipment which takes a panoramic x-ray of the teeth. We were able to take the headrest off of his chair and the dentist held Ryan’s head as he rested his chin on a small platform and held a “mouth” stick with his teeth for support. They raised the x-ray equipment so it would clear his shoulders and then turned it on and it circled around his head. The dentist said that the equipment was made for people in wheelchairs and that it was nice to see that it actually worked. After the x-ray, it was a tight squeeze to get him into an exam room with his chair; he drove it in -- just centimeters away from the counter and the stationary dental exam chair. He impressed everyone with his driving skills!! He reclined his chair and they moved an arm with about a 10 x 14(?) inch screen on it right in front of him and started a movie!! I just got the drill when I went! He has taken real good care of his teeth; he had one small cavity so we get to go back next week.
Our new satellite system came with DVR (digital video recording). Ryan didn’t see the Broncos play Sunday so he had Dean program the satellite to record the game and he watched it after his dentist appointment. Technology is so amazing! The Broncos won so it made the visit to the dentist’s office a distant memory.
We did learn something new this week. Even though Ryan’s driving skills are almost flawless, he can’t drink and drive!! He doesn’t drink many carbonated drinks, but he had a Dr. Pepper for dinner Monday night and then drove from the kitchen in to watch TV. As he was “sipping & puffing” he hiccupped and veered off to the right and almost ran into his therapy table. We all thought that he had passed out or something was drastically wrong when he said, “I can’t drink pop and drive!!” Each sip or puff will turn or move the chair, whether it is deliberate or accidental!
Yesterday he got to go to the doctor’s office and have his trach tube and catheter changed. Each month or so he will have to make a visit to the doctor’s office to have these procedures done. Changing the trach tube is quiet painful so he doesn’t look forward to that at all. Dean and I were trained to change out both the trach and catheter, but I feel more comfortable letting the doctor do it. If he is doesn’t talk himself into relaxing, he will tense up the muscles in his neck and close the opening to the trachea so it can take several seconds to make the change; then, if something were to go wrong, he wouldn’t have anyway to get air – better to be in the doctor’s office.
Last night we had another thunder and lightening storm. We all slept much better knowing that we had a generator and surge protectors on the vents and all of the battery chargers. Monday night for Family Home Evening, Michelle gave a lesson on 72-Prepardness Kits. She started each of our families with some supplies in the event we needed to leave the house or the area in a hurry. We have done these over the years but it was good to have a refresher. With Ryan’s injury and all the life support “baggage” he now has to have, we are looking at this a little differently. Over the next few days I began to think of all the things that we would need to have and what kind of disasters could possibly occur that would require us to evacuate; one of which would be a fire. I began to wonder how we would move Ryan contemplating all of the different scenarios that could possibly occur. Again, I needed some sleep and finally came to the conclusion that if we do everything possible, the Lord will do the rest. I recalled the scripture in the Doctrine and Covenants.
Love,
Dean, Terry and Ryan
The dentist we went to has a new office and each exam room has state-of-the-art equipment. They had him maneuver his chair into a room with the equipment which takes a panoramic x-ray of the teeth. We were able to take the headrest off of his chair and the dentist held Ryan’s head as he rested his chin on a small platform and held a “mouth” stick with his teeth for support. They raised the x-ray equipment so it would clear his shoulders and then turned it on and it circled around his head. The dentist said that the equipment was made for people in wheelchairs and that it was nice to see that it actually worked. After the x-ray, it was a tight squeeze to get him into an exam room with his chair; he drove it in -- just centimeters away from the counter and the stationary dental exam chair. He impressed everyone with his driving skills!! He reclined his chair and they moved an arm with about a 10 x 14(?) inch screen on it right in front of him and started a movie!! I just got the drill when I went! He has taken real good care of his teeth; he had one small cavity so we get to go back next week.
Our new satellite system came with DVR (digital video recording). Ryan didn’t see the Broncos play Sunday so he had Dean program the satellite to record the game and he watched it after his dentist appointment. Technology is so amazing! The Broncos won so it made the visit to the dentist’s office a distant memory.
We did learn something new this week. Even though Ryan’s driving skills are almost flawless, he can’t drink and drive!! He doesn’t drink many carbonated drinks, but he had a Dr. Pepper for dinner Monday night and then drove from the kitchen in to watch TV. As he was “sipping & puffing” he hiccupped and veered off to the right and almost ran into his therapy table. We all thought that he had passed out or something was drastically wrong when he said, “I can’t drink pop and drive!!” Each sip or puff will turn or move the chair, whether it is deliberate or accidental!
Yesterday he got to go to the doctor’s office and have his trach tube and catheter changed. Each month or so he will have to make a visit to the doctor’s office to have these procedures done. Changing the trach tube is quiet painful so he doesn’t look forward to that at all. Dean and I were trained to change out both the trach and catheter, but I feel more comfortable letting the doctor do it. If he is doesn’t talk himself into relaxing, he will tense up the muscles in his neck and close the opening to the trachea so it can take several seconds to make the change; then, if something were to go wrong, he wouldn’t have anyway to get air – better to be in the doctor’s office.
Last night we had another thunder and lightening storm. We all slept much better knowing that we had a generator and surge protectors on the vents and all of the battery chargers. Monday night for Family Home Evening, Michelle gave a lesson on 72-Prepardness Kits. She started each of our families with some supplies in the event we needed to leave the house or the area in a hurry. We have done these over the years but it was good to have a refresher. With Ryan’s injury and all the life support “baggage” he now has to have, we are looking at this a little differently. Over the next few days I began to think of all the things that we would need to have and what kind of disasters could possibly occur that would require us to evacuate; one of which would be a fire. I began to wonder how we would move Ryan contemplating all of the different scenarios that could possibly occur. Again, I needed some sleep and finally came to the conclusion that if we do everything possible, the Lord will do the rest. I recalled the scripture in the Doctrine and Covenants.
I tell you these things because of your prayers; wherefore, treasure up wisdom in your bosoms… if ye are prepared ye shall not fear.Each day we try to put ourselves in the Lord’s hands and learn what we can thru this trail. We are truly depending on Him to help us get thru each day.
D&C 38:30
Love,
Dean, Terry and Ryan
Sunday, October 16, 2005
Scheduling
Well, we are learning that we still have good days and bad days. Ryan has had a couple of really "hard" days; more emotional, mental and psychological than physical. He is struggling to try and figure out what his purpose in life is. It is sometimes difficult to stay positive for him; all I want to do is cry!!
He knows that he is not alone in this, and we all know that there is a reason for our trial. We continue to hope and pray that we will have the strength to continue thru the hard days.
We are trying to help the caregivers get trained to take care of Ryan. We are limited to one company in town as they are the only ones that are approved by the State of NM to work with the Disable and Elder Waiver Program. The nurse that is taking the lead is struggling in training the other nurses as she is somewhat apprehensive in dealing with a patient on a trach. Michelle, Ryan's younger sister, has taken the lead in "helping" the caregivers become familiar with the trach, the vent, the lift, the wheelchair, how to dress Ryan, etc. etc. Friday she had a meeting with the head nurse and one other nurse, she let them know how much we appreciate what they have done and what they are trying to do; then very diplomatically informed them that they need to take the care to the next level, "..since this is 'our' Ryan that we are dealing with." She helped them understand that their prior experience with fragile infants was very helpful, but gaining knowledge of all aspects of SCI's as well as getting to know Ryan and his needs was now their priority and things needed to be done a certain way. Ryan and I were in another room, on the therapy mat which Grandpa built, and we could overhear some of what Michelle was discussing with the nurses. At one point Ryan asked me, "Do you think they know that she is only 20 years old?" I said, "The way she is handling this, I don't believe so." I am so grateful to her for stepping up and taking the lead on some of this stuff. I am finding that I am too emotionally attached and that I just get upset or cry!! I think with Michelle's help we are on the right track.
Each year the San Juan Quilters Guild has a quilt show to display their many talents; I love to see the creativity with colors and machine or hand stitching. It is really a beautiful display of art and talent. I asked Ryan if he wanted to go and see the show. He looked at me with a raised eyebrow then told me that I hadn't made him aware of the schedule in enough time so he wasn't able to go. He said that he needed time to prepare, surely, I could appreciate the need to plan for such an event. He said that he wouldn’t really enjoy the show being that he hadn't had time to look forward in anticipation of it. He reminded me that we had planned three weeks in advance for the Broncos game, "And look what great fun we had." I told him that I would put it on his calendar for next year!!! He did appease me and go to the Piedra Vista girls' volleyball game last night!
We will endeavor to remain strong and steadfast in helping Ryan to endure this trial. This week we are going to get the computer up and running for him; hopefully that will uplift his spirits. We are also awaiting a vocational rehab schedule and plan which will hopefully help get him active in the community. We look to having more good days!!
We continue to be blessed with love and support which helps to keep us going. I reminded Ryan today of the many many prayers from our friends and family on his behalf and that he is not alone in this. We can't thank each of you enough for all that has been done thru e-mails, letters, visits, kind words, hugs, and so many many other ways.
Love,
Dean, Terry and Ryan
He knows that he is not alone in this, and we all know that there is a reason for our trial. We continue to hope and pray that we will have the strength to continue thru the hard days.
We are trying to help the caregivers get trained to take care of Ryan. We are limited to one company in town as they are the only ones that are approved by the State of NM to work with the Disable and Elder Waiver Program. The nurse that is taking the lead is struggling in training the other nurses as she is somewhat apprehensive in dealing with a patient on a trach. Michelle, Ryan's younger sister, has taken the lead in "helping" the caregivers become familiar with the trach, the vent, the lift, the wheelchair, how to dress Ryan, etc. etc. Friday she had a meeting with the head nurse and one other nurse, she let them know how much we appreciate what they have done and what they are trying to do; then very diplomatically informed them that they need to take the care to the next level, "..since this is 'our' Ryan that we are dealing with." She helped them understand that their prior experience with fragile infants was very helpful, but gaining knowledge of all aspects of SCI's as well as getting to know Ryan and his needs was now their priority and things needed to be done a certain way. Ryan and I were in another room, on the therapy mat which Grandpa built, and we could overhear some of what Michelle was discussing with the nurses. At one point Ryan asked me, "Do you think they know that she is only 20 years old?" I said, "The way she is handling this, I don't believe so." I am so grateful to her for stepping up and taking the lead on some of this stuff. I am finding that I am too emotionally attached and that I just get upset or cry!! I think with Michelle's help we are on the right track.
Each year the San Juan Quilters Guild has a quilt show to display their many talents; I love to see the creativity with colors and machine or hand stitching. It is really a beautiful display of art and talent. I asked Ryan if he wanted to go and see the show. He looked at me with a raised eyebrow then told me that I hadn't made him aware of the schedule in enough time so he wasn't able to go. He said that he needed time to prepare, surely, I could appreciate the need to plan for such an event. He said that he wouldn’t really enjoy the show being that he hadn't had time to look forward in anticipation of it. He reminded me that we had planned three weeks in advance for the Broncos game, "And look what great fun we had." I told him that I would put it on his calendar for next year!!! He did appease me and go to the Piedra Vista girls' volleyball game last night!
We will endeavor to remain strong and steadfast in helping Ryan to endure this trial. This week we are going to get the computer up and running for him; hopefully that will uplift his spirits. We are also awaiting a vocational rehab schedule and plan which will hopefully help get him active in the community. We look to having more good days!!
We continue to be blessed with love and support which helps to keep us going. I reminded Ryan today of the many many prayers from our friends and family on his behalf and that he is not alone in this. We can't thank each of you enough for all that has been done thru e-mails, letters, visits, kind words, hugs, and so many many other ways.
Love,
Dean, Terry and Ryan
Wednesday, October 12, 2005
What Muffins?
Ryan seems to be getting stronger and stronger each day. People who haven’t seen him since the accident say that he “looks really good.” I have always known that, but hey, I’m just the mom!! He does look good, his skin color is good and we think he has put on a little weight; we don’t know for sure because we don’t have anyway of weighing him. Dean said that we could go down to Mayflower and weight him – they would have the only scale big enough in town to put his chair on, but that scale is probably too big!! We will have to figure something out.
Michelle, Ryan’s sister, is really good about keeping Ryan busy and doing things. She gets him to go to Wal-Mart, Sam’s Club, as well as the movies. Our little community is great about bring in “cultural” events, Michelle purchase tickets for all of us to go and see Michael Flatley’s “Lord of the Dance.” During the days prior to the event, Michelle would ask Ryan if he was excited to go, he would always respond, “I am so excited, I can hardly wait – then smirk at her!” After it was all said and done, he really enjoyed the show – for that matter, we all did.
Since we have become intimately aware of the need for disability parking, access, seating, etc. it is amazing how far businesses, public buildings, etc. have come, yet how much more could be done. Most places have met the letter of the law as far as access, but not the spirit of the law. Believe me, we never paid any mind to the needs of the disabled until May 4th!! At the Farmington Civic Center, they have wheelchair seating, but just that. All those in wheelchairs are lined up in a row, but those who accompany them have to sit elsewhere. Because Ryan is on the vent, I was nervous to leave him sitting alone – our seats where up a few steps right behind him but I was afraid that I wouldn’t be able to hear the vent if it started “chirping!” I hung at his side long enough that they brought me a chair to sit next to him!!! Moms!!
Today Ryan had an appointment with the New Mexico Vocational Rehabilitation Office. He is hoping to find a job for two or three hours a day, as well as some computer training with a mouth stick or voice recognition software to help him get ready to go back to school. People are amazed at how well he can maneuver his “big” chair in confined office spaces. We went into a small waiting room and his chair took up half of the room. We could hear the lady he was going to meet with move chairs around in her office so Ryan could get in. When we went down the hall, he effortlessly “puffed” his way thru the snug doorway and into her very tight office.
Debra went thru several forms telling Ryan all of his “rights and responsibilities” and then started asking the informative questions such as birth date, social security number, disability diagnosis, etc. etc.. One of the questions she asked was if Ryan was a veteran. Ryan replied, “Yes.” Debra looked at him and said, “I have been doing this too long, I know better, you are not old enough to be a veteran.” He laughed and said, “Ok, No.” A little while later she told Ryan that her office would be asking some of the same questions over and over and he replied, “I still am not a veteran!” She chuckled. After Ryan and Dean left to go to the van, I stayed behind to get some copies Debra had to make for us. She looked at me and said, “You have got a great kid there!” I am continually amazed at how he can connect with people of all ages and have such an influence on them.
We are still working thru caregivers. Ryan had a real nice girl, I say girl, she is a lot younger than me but older than Ryan! She was really good and she liked the Broncos – so they had lots to talk about! She told Ryan Monday that she was going to have to have some surgery and would be out about six weeks, so her boss would be sending someone else in to train. So tomorrow morning, Ryan will get to meet someone new. I think this along with dealing with Medicaid and the NM Disable and Elderly Waiver are going to be the biggest challenges. We will continue on and hopefully take more steps forward than backwards.
Dean and I take turns turning Ryan during the night. I take the early shift -- 1:30 am to 3:00 am – depending on what time he goes to bed and then Dean takes the later shift – 4:30 am to 6:00 am. These are the scheduled turns, which doesn’t include any other problems he may have during the night. The last several nights when I go in to turn him, he is hungry and wants to eat three (!) carrots dipped in Ranch dressing. Last night when I got in there, he asked if I would make the muffins that I used to make. I couldn’t figure out what he was talking about, I don’t remember making muffins!! He said they had nuts in them and maybe bran or something – or maybe they were oatmeal with shredded carrots. We couldn’t figure it out, so this morning I made him Chocolate Chip Oatmeal Pecan Muffins (you can’t go wrong with chocolate chips!) – they weren’t what he remembered, but he liked them. At lunch we asked Michelle if she remembered the muffins “I used to make” she couldn’t remember either. We told Ryan he must have had some really great dreams!!!
I think we left Denver just in time. We heard that they had quite a bit of snow and lots of road closures. Winter will be in Farmington before we know it. One of the symptoms of spinal cord injuries is feeling cold or hot. Ryan has been very cold the last couple of days, to the point that his chin quivers but his body temperature is in the normal range. We are keeping the house a little warmer than usual; he will ask for blankets to cover him while Dean and I are sweating!! I hope we have a normal winter here in Farmington, which for us are pretty mild. Hopefully, it won’t be too bad on him.
We hope and pray Ryan will continue to progress and regain as much stamina as possible. Tonight he was in tears, he wants so bad to go back to school and be with his friends; then we read the e-mails from his wonderful mission President, wonderful former Bishop and lots of friends who say just the right thing to help him get past the very few down moments he has. We so appreciate your kind words, love and support.
Love,
Dean, Terry and Ryan
Michelle, Ryan’s sister, is really good about keeping Ryan busy and doing things. She gets him to go to Wal-Mart, Sam’s Club, as well as the movies. Our little community is great about bring in “cultural” events, Michelle purchase tickets for all of us to go and see Michael Flatley’s “Lord of the Dance.” During the days prior to the event, Michelle would ask Ryan if he was excited to go, he would always respond, “I am so excited, I can hardly wait – then smirk at her!” After it was all said and done, he really enjoyed the show – for that matter, we all did.
Since we have become intimately aware of the need for disability parking, access, seating, etc. it is amazing how far businesses, public buildings, etc. have come, yet how much more could be done. Most places have met the letter of the law as far as access, but not the spirit of the law. Believe me, we never paid any mind to the needs of the disabled until May 4th!! At the Farmington Civic Center, they have wheelchair seating, but just that. All those in wheelchairs are lined up in a row, but those who accompany them have to sit elsewhere. Because Ryan is on the vent, I was nervous to leave him sitting alone – our seats where up a few steps right behind him but I was afraid that I wouldn’t be able to hear the vent if it started “chirping!” I hung at his side long enough that they brought me a chair to sit next to him!!! Moms!!
Today Ryan had an appointment with the New Mexico Vocational Rehabilitation Office. He is hoping to find a job for two or three hours a day, as well as some computer training with a mouth stick or voice recognition software to help him get ready to go back to school. People are amazed at how well he can maneuver his “big” chair in confined office spaces. We went into a small waiting room and his chair took up half of the room. We could hear the lady he was going to meet with move chairs around in her office so Ryan could get in. When we went down the hall, he effortlessly “puffed” his way thru the snug doorway and into her very tight office.
Debra went thru several forms telling Ryan all of his “rights and responsibilities” and then started asking the informative questions such as birth date, social security number, disability diagnosis, etc. etc.. One of the questions she asked was if Ryan was a veteran. Ryan replied, “Yes.” Debra looked at him and said, “I have been doing this too long, I know better, you are not old enough to be a veteran.” He laughed and said, “Ok, No.” A little while later she told Ryan that her office would be asking some of the same questions over and over and he replied, “I still am not a veteran!” She chuckled. After Ryan and Dean left to go to the van, I stayed behind to get some copies Debra had to make for us. She looked at me and said, “You have got a great kid there!” I am continually amazed at how he can connect with people of all ages and have such an influence on them.
We are still working thru caregivers. Ryan had a real nice girl, I say girl, she is a lot younger than me but older than Ryan! She was really good and she liked the Broncos – so they had lots to talk about! She told Ryan Monday that she was going to have to have some surgery and would be out about six weeks, so her boss would be sending someone else in to train. So tomorrow morning, Ryan will get to meet someone new. I think this along with dealing with Medicaid and the NM Disable and Elderly Waiver are going to be the biggest challenges. We will continue on and hopefully take more steps forward than backwards.
Dean and I take turns turning Ryan during the night. I take the early shift -- 1:30 am to 3:00 am – depending on what time he goes to bed and then Dean takes the later shift – 4:30 am to 6:00 am. These are the scheduled turns, which doesn’t include any other problems he may have during the night. The last several nights when I go in to turn him, he is hungry and wants to eat three (!) carrots dipped in Ranch dressing. Last night when I got in there, he asked if I would make the muffins that I used to make. I couldn’t figure out what he was talking about, I don’t remember making muffins!! He said they had nuts in them and maybe bran or something – or maybe they were oatmeal with shredded carrots. We couldn’t figure it out, so this morning I made him Chocolate Chip Oatmeal Pecan Muffins (you can’t go wrong with chocolate chips!) – they weren’t what he remembered, but he liked them. At lunch we asked Michelle if she remembered the muffins “I used to make” she couldn’t remember either. We told Ryan he must have had some really great dreams!!!
I think we left Denver just in time. We heard that they had quite a bit of snow and lots of road closures. Winter will be in Farmington before we know it. One of the symptoms of spinal cord injuries is feeling cold or hot. Ryan has been very cold the last couple of days, to the point that his chin quivers but his body temperature is in the normal range. We are keeping the house a little warmer than usual; he will ask for blankets to cover him while Dean and I are sweating!! I hope we have a normal winter here in Farmington, which for us are pretty mild. Hopefully, it won’t be too bad on him.
We hope and pray Ryan will continue to progress and regain as much stamina as possible. Tonight he was in tears, he wants so bad to go back to school and be with his friends; then we read the e-mails from his wonderful mission President, wonderful former Bishop and lots of friends who say just the right thing to help him get past the very few down moments he has. We so appreciate your kind words, love and support.
Love,
Dean, Terry and Ryan
Sunday, October 09, 2005
According to Our Faith
We have had a busy couple of days, but it doesn’t seem like we ever get anything done. Today I got ready for church and couldn’t find my “winter” church shoes. Since we have been in Denver, I have been able to wear sandals. It rained most of the night and turned a little cold here so I needed enclosed shoes; they’re all in boxes in the garage – but which one!! I try to unpack at least one box a day if not two, but the last couple of days I haven’t been able to get to any.
I keep thinking that we are going to get on a schedule, but not yet. Ryan’s schedule depends on how he feels. Tristen, our grandson, has had a little cold, I think Ryan may have caught a little of that. All-in-all, he is doing really well although Sunday’s are hard on him because he doesn’t get to rest much. He gets up at 9:00 and our meetings start at 1:00 pm; we don’t get home until 4:30 – which makes for a long to day. When we got home he asked what was for dinner, I told him we were having roast and potatoes but it would take about 30 minutes to get ready. By the time I got it ready he was sound asleep, I woke him but he said he would rather sleep!! After he woke up and ate, some friends came by; which is always nice. We so appreciate the love and support we have been given.
Friday, we had a very nice visit with our cousin, Matt Billingslea. He was in town with the band that he is playing with and was able to take a little time to come by and see Ryan. It was nice to catch up with him. The last time we saw him was when Ryan received his Eagle Scout Award at age fifteen, so it was nice to visit and hear what all he has been doing.
Ryan was a good sport and went to a couple of high school ball games this week; the Piedra Vista girls’ volleyball team played Thursday night and the football team played Friday night. During the football game Dean asked him if it was like being in INVESCO Field; Ryan replied with a grin and a look of “yah, dad??”
Last night we had quite an “intense” thunder and lightening storm. The lightening lit up the sky and the thunder roared. I actually enjoy thunder and lightening, but being in a new home, it was a little unnerving. Ryan’s bathroom has two large corner windows and when the lightening would strike it would light up his entire room. About 12:30 a.m. I went into his room to close the bathroom door; he was awake, couldn’t sleep because of the storm. We talked for a minute about how loud it was and how different it was being in a new place. After I went back to bed, my mind started wandering and I woke Dean up to see if we were prepared with back-up batteries, for the vent, just in case the electricity went out. He said we had everything we needed for the vent, but not the air mattress on Ryan’s bed. We do have a twin mattress on hand in the event the air mattress goes flat, so we were somewhat prepared. My mind wouldn’t slow down and I got to thinking about the bedside vent that Ryan is on. The bedside vent has a humidifier which has wiring going thru the circuit to heat the mist as it flows thru the tubing. I thought, what if the house was hit by lightening and Ryan was electrocuted because of the wiring going thru his vent circuit – I have got to figure out how to turn my mind off!! Dean went in to check on Ryan about 4:00 a.m. because he couldn't sleep and found Ryan was still awake. They talked for a bit about “life,” some of our best talks are in the middle of the night – but we have got to get some sleep!! Tomorrow, we will get a small generator for the bed and a surge protector for the vent – maybe that will give us some peace of mind – and some rest!!!
Each day Ryan looks forward to getting the mail and checking the e-mail; it brightens his day to hear from each of you. We so appreciate all of your continued love and support. We do wish we could respond to each of you individually, but please know that we are so grateful to be loved by so many. Numerous people have offered to help in any way they can, most times we don’t even know what to ask for. We are taking one day, sometimes one moment, at a time and hopefully making good choices. As Ryan said prayers tonight, he asked that the Lord would bless us according to our faith. We continue to have faith and hope that Ryan will improve. We believe that the Lord’s will will be done and hope we are so in tune to know what that is and accept it. We hope and pray that the Lord will bless each of you.
Love,
Dean, Terry and Ryan
I keep thinking that we are going to get on a schedule, but not yet. Ryan’s schedule depends on how he feels. Tristen, our grandson, has had a little cold, I think Ryan may have caught a little of that. All-in-all, he is doing really well although Sunday’s are hard on him because he doesn’t get to rest much. He gets up at 9:00 and our meetings start at 1:00 pm; we don’t get home until 4:30 – which makes for a long to day. When we got home he asked what was for dinner, I told him we were having roast and potatoes but it would take about 30 minutes to get ready. By the time I got it ready he was sound asleep, I woke him but he said he would rather sleep!! After he woke up and ate, some friends came by; which is always nice. We so appreciate the love and support we have been given.
Friday, we had a very nice visit with our cousin, Matt Billingslea. He was in town with the band that he is playing with and was able to take a little time to come by and see Ryan. It was nice to catch up with him. The last time we saw him was when Ryan received his Eagle Scout Award at age fifteen, so it was nice to visit and hear what all he has been doing.
Ryan was a good sport and went to a couple of high school ball games this week; the Piedra Vista girls’ volleyball team played Thursday night and the football team played Friday night. During the football game Dean asked him if it was like being in INVESCO Field; Ryan replied with a grin and a look of “yah, dad??”
Last night we had quite an “intense” thunder and lightening storm. The lightening lit up the sky and the thunder roared. I actually enjoy thunder and lightening, but being in a new home, it was a little unnerving. Ryan’s bathroom has two large corner windows and when the lightening would strike it would light up his entire room. About 12:30 a.m. I went into his room to close the bathroom door; he was awake, couldn’t sleep because of the storm. We talked for a minute about how loud it was and how different it was being in a new place. After I went back to bed, my mind started wandering and I woke Dean up to see if we were prepared with back-up batteries, for the vent, just in case the electricity went out. He said we had everything we needed for the vent, but not the air mattress on Ryan’s bed. We do have a twin mattress on hand in the event the air mattress goes flat, so we were somewhat prepared. My mind wouldn’t slow down and I got to thinking about the bedside vent that Ryan is on. The bedside vent has a humidifier which has wiring going thru the circuit to heat the mist as it flows thru the tubing. I thought, what if the house was hit by lightening and Ryan was electrocuted because of the wiring going thru his vent circuit – I have got to figure out how to turn my mind off!! Dean went in to check on Ryan about 4:00 a.m. because he couldn't sleep and found Ryan was still awake. They talked for a bit about “life,” some of our best talks are in the middle of the night – but we have got to get some sleep!! Tomorrow, we will get a small generator for the bed and a surge protector for the vent – maybe that will give us some peace of mind – and some rest!!!
Each day Ryan looks forward to getting the mail and checking the e-mail; it brightens his day to hear from each of you. We so appreciate all of your continued love and support. We do wish we could respond to each of you individually, but please know that we are so grateful to be loved by so many. Numerous people have offered to help in any way they can, most times we don’t even know what to ask for. We are taking one day, sometimes one moment, at a time and hopefully making good choices. As Ryan said prayers tonight, he asked that the Lord would bless us according to our faith. We continue to have faith and hope that Ryan will improve. We believe that the Lord’s will will be done and hope we are so in tune to know what that is and accept it. We hope and pray that the Lord will bless each of you.
Love,
Dean, Terry and Ryan
Wednesday, October 05, 2005
Ceilings
Thanks to Grandpa and Grandma, we finally got a bed, but the mattress came in and it is the wrong size!!! Things that used to seem so simple have become so complicated. We are hoping the new bed will be much more comfortable for Ryan; not only will it be long enough, but the head of the bed will raise to 40◦ - 50◦, which is critical for watching TV…not to mention keeping the airways in his lungs open!!
Geralyn and I met with the State Medicaid Office today and completed the next step in getting Ryan approved for the NM Disable and Elderly Waiver Program. Hopefully we are again on the right track to get Ryan’s needs met. After fifteen years of dealing with government entities, I am continually amazed at the “red tape” which the public has to go thru to get anything done. Thanks to our local State Representative, who has helped us get thru some of the paperwork more rapidly. It was also nice to have Geralyn there, as she has worked the system in Wyoming and knows a lot of the “particulars.”
Ryan has been called to be the Ward Prayer Coordinator for our Ward; which is, for those who don’t know, to make assignments for the opening and closing prayers for Sacrament Meeting. It is so nice to have a Bishop who listens to the spirit and comprehends that Ryan needs to be a part of things. As he was telling his grandparents about his new calling he commented that he was called to do that because, “I can’t hand out hymn books!!” Grandpa and Dean assured him that they could “hitch” a trailer to the back of his chair and he could do that too!! His positive and spontaneous sense of humor is so great.
Monday, we had to go to the hospital for blood gas tests; Ryan wanted to go out to lunch before he had to “give blood” so we went to Red Lobster, had a real nice lunch and found that their tables are high enough that he can actually pull-up underneath the table so he can sit as close as the rest of us. The little things we take for granted! As we got out of the van, the sidewalk was blocked so he wasn’t able to maneuver his chair up the handicapped ramp but rather had to “pop the curb!” Luckily, Dean was with us and was able to help him so that he didn’t “pop” another wheelie!! If he would have, he would have hit a huge rock. After we had ordered, Ryan asked if he could speak to the manager – we all looked at him and thought, Oh, no, what is he going to do. The manager came over and Ryan is so polite, he first told him that he always loved their food and he was glad that he could pull-up under the table, then asked him if he wouldn’t mind “making some improvements” to their handicap access. He continues to amaze me, his patience, his positive outlook and constructive mannerisms; we all could take note!!
As we were awaiting our food, he did a “weight shift” which he does about every twenty or thirty minutes. As he was reclining in his chair, he said matter-of-factly, “I know what I want to do for a career,” we were all very attentive awaiting the new revelation. We waited patiently and then he stated, “I want to be a Ceiling Consultant…I see most ceilings everywhere I go!!” We talked of the pros and cons and than all had a good laugh!!
We try to count our blessings thru this trial. We have become closer as a family, we have made wonderful new friends and acquaintances, we are learning patience, and most importantly we are trying to become closer to our Savior and truly understand his atoning sacrifice. After Meredith drove the five hours - 305 miles from Flagstaff this past weekend, she told Ryan that one of his blessings is that he doesn’t have to buy gas. We just need to look at the positive – she forgot we are in the gas business!!
Sincerely, we are so grateful for our blessings, some days we have to look real deep, but when we do we are richly blessed. May we all look a little deeper each day for the blessings that fill our lives.
With Love,
Dean, Terry and Ryan
Geralyn and I met with the State Medicaid Office today and completed the next step in getting Ryan approved for the NM Disable and Elderly Waiver Program. Hopefully we are again on the right track to get Ryan’s needs met. After fifteen years of dealing with government entities, I am continually amazed at the “red tape” which the public has to go thru to get anything done. Thanks to our local State Representative, who has helped us get thru some of the paperwork more rapidly. It was also nice to have Geralyn there, as she has worked the system in Wyoming and knows a lot of the “particulars.”
Ryan has been called to be the Ward Prayer Coordinator for our Ward; which is, for those who don’t know, to make assignments for the opening and closing prayers for Sacrament Meeting. It is so nice to have a Bishop who listens to the spirit and comprehends that Ryan needs to be a part of things. As he was telling his grandparents about his new calling he commented that he was called to do that because, “I can’t hand out hymn books!!” Grandpa and Dean assured him that they could “hitch” a trailer to the back of his chair and he could do that too!! His positive and spontaneous sense of humor is so great.
Monday, we had to go to the hospital for blood gas tests; Ryan wanted to go out to lunch before he had to “give blood” so we went to Red Lobster, had a real nice lunch and found that their tables are high enough that he can actually pull-up underneath the table so he can sit as close as the rest of us. The little things we take for granted! As we got out of the van, the sidewalk was blocked so he wasn’t able to maneuver his chair up the handicapped ramp but rather had to “pop the curb!” Luckily, Dean was with us and was able to help him so that he didn’t “pop” another wheelie!! If he would have, he would have hit a huge rock. After we had ordered, Ryan asked if he could speak to the manager – we all looked at him and thought, Oh, no, what is he going to do. The manager came over and Ryan is so polite, he first told him that he always loved their food and he was glad that he could pull-up under the table, then asked him if he wouldn’t mind “making some improvements” to their handicap access. He continues to amaze me, his patience, his positive outlook and constructive mannerisms; we all could take note!!
As we were awaiting our food, he did a “weight shift” which he does about every twenty or thirty minutes. As he was reclining in his chair, he said matter-of-factly, “I know what I want to do for a career,” we were all very attentive awaiting the new revelation. We waited patiently and then he stated, “I want to be a Ceiling Consultant…I see most ceilings everywhere I go!!” We talked of the pros and cons and than all had a good laugh!!
We try to count our blessings thru this trial. We have become closer as a family, we have made wonderful new friends and acquaintances, we are learning patience, and most importantly we are trying to become closer to our Savior and truly understand his atoning sacrifice. After Meredith drove the five hours - 305 miles from Flagstaff this past weekend, she told Ryan that one of his blessings is that he doesn’t have to buy gas. We just need to look at the positive – she forgot we are in the gas business!!
Sincerely, we are so grateful for our blessings, some days we have to look real deep, but when we do we are richly blessed. May we all look a little deeper each day for the blessings that fill our lives.
With Love,
Dean, Terry and Ryan
Sunday, October 02, 2005
Finding Help
It is good to be home, but we are experiencing reality!! Ryan’s caregiver resigned. Caring for Ryan is a “big” job and his caregiver wasn’t up to the challenge. We had heard from several patients after leaving Craig that they had to go thru two or three caregivers until they found one that worked for them. We were hoping that we would be able to “sing a different tune” but we are not exempt.
I spoke with my new found friend Laurie, Dan Leslie’s mom; she lived in Provo this summer trying to find good help for Dan. At the end of the summer semester, she felt like she had succeeded only to find when they returned, after the break, she was at square one again. I think this is going to be an ongoing challenge.
We were aware when we made the decision to come back to Farmington that this would be one of our biggest hurdles.
We weren’t able to make it to Salt Lake this weekend for Ryan’s mission reunion and General Conference. Ryan was quite sad about not being able to go. He loved his mission and made lifetime friendships with his mission companions. He was hoping to get to see some of them. Hopefully in the next couple of months he will be up to traveling and making the seven hour trip.
Since we weren’t able to get to Salt Lake, it was nice to be able to watch General Conference in our home; we were afraid that we weren’t’ going to be able too. We had a satellite installation date of October 10th, but Dean called the office here in town and was able to get the installation date moved to the 30th of September. The installer came out about 1:00 p.m. and was here until 4:30 p.m and still couldn’t get the signal, she called her boss and he came out and got it all set up, finishing up about 9:00 p.m. We told then that our “church” was going to be on TV this weekend and we would really appreciate it if they could get the satellite up and running. They were so kind and generous of their time to get it going.
We enjoyed conference and then Dean and Ryan went to the General Priesthood meeting Saturday night. Ryan came home quite depressed – I wondered what they had talked about!! It wasn’t the meeting, it was seeing a lot of his friends who are now married and are starting their families. He thinks about the future 24/7. We continue to hope and pray that we will know Gods’ will thru this trial.
Meredith was planning on meeting Ryan in Salt Lake for Conference, but since we weren’t able to go, she came to Farmington. She sure can brighten his day!! It was fun to see her and have her here for the weekend.
We had two new caregivers come in yesterday and today; we will see what tomorrow brings!! I feel like our front door is a revolving door. Everyone in Farmington is going to know what kind of a house keeper I am; I guess that is the least of my worries!! Maybe I will ask them to help!
May the Lord bless each of us as we strive to know and do His will. We are so grateful to you all for the visits, the food, the cards, the e-mails, the kind words and most especially the hugs.
Love,
Dean, Terry and Ryan
I spoke with my new found friend Laurie, Dan Leslie’s mom; she lived in Provo this summer trying to find good help for Dan. At the end of the summer semester, she felt like she had succeeded only to find when they returned, after the break, she was at square one again. I think this is going to be an ongoing challenge.
We were aware when we made the decision to come back to Farmington that this would be one of our biggest hurdles.
We weren’t able to make it to Salt Lake this weekend for Ryan’s mission reunion and General Conference. Ryan was quite sad about not being able to go. He loved his mission and made lifetime friendships with his mission companions. He was hoping to get to see some of them. Hopefully in the next couple of months he will be up to traveling and making the seven hour trip.
Since we weren’t able to get to Salt Lake, it was nice to be able to watch General Conference in our home; we were afraid that we weren’t’ going to be able too. We had a satellite installation date of October 10th, but Dean called the office here in town and was able to get the installation date moved to the 30th of September. The installer came out about 1:00 p.m. and was here until 4:30 p.m and still couldn’t get the signal, she called her boss and he came out and got it all set up, finishing up about 9:00 p.m. We told then that our “church” was going to be on TV this weekend and we would really appreciate it if they could get the satellite up and running. They were so kind and generous of their time to get it going.
We enjoyed conference and then Dean and Ryan went to the General Priesthood meeting Saturday night. Ryan came home quite depressed – I wondered what they had talked about!! It wasn’t the meeting, it was seeing a lot of his friends who are now married and are starting their families. He thinks about the future 24/7. We continue to hope and pray that we will know Gods’ will thru this trial.
Meredith was planning on meeting Ryan in Salt Lake for Conference, but since we weren’t able to go, she came to Farmington. She sure can brighten his day!! It was fun to see her and have her here for the weekend.
We had two new caregivers come in yesterday and today; we will see what tomorrow brings!! I feel like our front door is a revolving door. Everyone in Farmington is going to know what kind of a house keeper I am; I guess that is the least of my worries!! Maybe I will ask them to help!
May the Lord bless each of us as we strive to know and do His will. We are so grateful to you all for the visits, the food, the cards, the e-mails, the kind words and most especially the hugs.
Love,
Dean, Terry and Ryan
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