This week was a bit emotional – to say the least! We were able to go to the Provo temple on Tuesday, which was another “first” for Ryan. When he was on his break from BYU-I he would come to Provo and work with his uncles. Once a week, while here, he would go to the Provo temple so as we entered the temple Tuesday, it brought back lots of memories – those when he was able to walk. He had a difficult time as we went thru and completed the session. Hopefully, it will get easier each time we go.
We met with the State of Utah Division of Services for People with Disabilities this week as well. Two ladies, one of which was the one that told us not to move to Utah, came to our home and did a complete assessment of Ryan’s needs. They asked him everything from mobility needs, to social issues, to health issues to financial needs. After all of that, we were placed on the “waiting list” which in some cases has taken from five to ten years to get in the program. However, they did include an “appeal” process form, so we will be appealing their decision. More grey hair!!
Ryan’s healthcare nurses are great. He has become very confident in their abilities; as he has said, “They talk the talk and walk the walk!” One of the nurses, Lyn, is very good with him. She has boys his age so she understands his needs, wants, desires, etc. She is very good to talk with him one on one, as well as joke and kid with him. Ryan has gained a lot of strength in his neck and can move it pretty well from side to side. He can hold it steady pretty well when he is being transferred, until he has a spasm then he loses control and his head will flop backwards. Lyn is very concerned, as she should be, that he won’t be able to hold it all of the time so she is always asking him if he is OK. He will respond in the affirmative and then tease her by letting his head flop backwards to the point where he is able to gain control of it again. When she goes to grab it, he will bring it forward and then just smile at her. She keeps telling him one of these days she is going to let him fall on the floor and that will teach him!! Today he was giving her all the excuses as to why he hadn’t been drinking or eating this weekend. She told him, “I have heard excuses from you all week; I won’t have any more of that!” They do have a good time.
We also met with our new orthodontist this week. We hadn’t planned on meeting with him for a couple of months but the wiring came off of two brackets, so we needed to get Ryan in. We are so grateful to those who have been so kind and offered their services; especially being able to get in so quickly rather than having to wait for several weeks. After we met with the doctor, one of the assistants was putting the wiring back on the brackets and Ryan asked her if she had finished school, and if so where she had received her training? She told him that she was actually going to BYU, majoring in Wellness and Physical Health, and she had received her dental training from the doctor. She said that the doctor had completed some of his training in the military so he utilized that program to train his aids. Ryan asked, “Do you have to do push-ups every morning?” It took her a few seconds to digest what he had said and then she started laughing and said, “Oh, so you have a sense of humor as well!” Before long, he had the whole office in stitches!!
Ryan had a couple of friends come out and visit this week, one of which was a missionary in the Philippines with him. Elder Cole, or Mike as he goes by now(!), brought some Philipino food and made us lunch. It was great!! He and Ryan had a great time reminiscing over fond memories of their time in the Philippines. It is also nice that he is reconnecting with some of his friends that he made at BYU-I, as well as when he was here in Provo. I am hoping that some of them will be brave enough to get trained on the vent and suctioning and then he can have a social life!! I tried to get him to go to the quilt shop with me, but he matter-of-factly declined. I think he would enjoy being with his friends, rather than with mom and dad all the time.
Ryan’s toe is doing much better. I finally found some “big feet” socks, size 13-16, which have really helped. The bigger socks allow more “breathing” room for his toes when his shoes are on. I am still amazed at the things that we take for granted. There are so many “little things” that I never even thought about let alone worried about – like his toes and making sure his elbows don’t stay in the same place for too long allowing blood to pool – just to name a few!!
Rob and Kristen were able to bless their almost two month old baby today. They asked Ryan if he would participate in that blessing. It is so nice to see that he can still use his Priesthood even though he isn’t able to move. It strengthens my testimony that the Church is true and that our Heavenly Father loves each one of us and will accept our offering – even with our limitations or imperfections.
Kristen had a very nice family gathering after Sacrament Meeting. We wanted Ryan to be able to visit with all of the family upstairs rather than having to have all of them come downstairs, so our “roll-a-ramp” came in handy. Rob has three steps, then a landing and then one more step into his home so Dean put the ramp on the first three steps and had Ryan “sip and puff” to the landing. While he was sitting on the landing Dean “tipped” his chair back and held it as the ramp was moved around him and placed back under his chair and over the threshold step. Then he “sipped and puffed” his way into the gathering and was able to visit with everyone. Ingenuity gets us everywhere!
We went to the hospital tonight to see Ryan’s cousins’ new baby. Little Zoei was born premature, 2lbs 6oz(?); she was so tiny. We were a little worried that Ryan wouldn’t be able to go in and see her, but we walked right in and he was able to see the baby and visit with her mom and dad for almost an hour. As we looked on, seeing all the tubes and monitors coming from her little body and watching her sweet Mother cuddle her and feed her thru a tube, Dean looked at Ryan and said, “We all have challenges, just at different phases in our lives.”
We are so grateful for the many blessing we have, one of which is life it self. We know that life is fragile and we need to make every minute of every day count. When I opened the blinds this morning, we had another inch of snow on the ground and as we went to church, we heard the birds singing. We give thanks to a loving Heavenly Father who created this beautiful world for our enjoyment. We are grateful to Him as well for allowing us to have the association with such wonderful family and friends who continue to stand by us, buoy us up and love and support us thru our trial. I am learning that this is the reason we are here on this earth, to love and help each other – no matter our trials, struggles or limitations.
We love you all.
Dean, Terry and Ryan
Monday, March 27, 2006
Monday, March 20, 2006
In the Lord's Time
Snow, snow, snow and more snow! As the last minute household goods were being put into boxes Friday morning, we looked out the window and there was a blizzard like we haven't seen in years. We hadn't had much weather, to speak of, all winter in Farmington but that morning we couldn't see past the front porch. I had looked at the weather reports earlier in the week and told Dean and Ryan that the forecast for Friday and Saturday didn't look very good all the way from Farmington to Provo. As before, I had asked them both if we should wait! Ha! Ha! But, Friday morning as Dean stood looking out the window he had second thoughts although realized things were already in motion with family from Provo and Gallup already in Farmington to pull trailers to and fro. Uncle Marshall and I were talking when he reminded me that in our part of the world we can wait fifteen or twenty minutes and it would all blow over! Sure enough, after dumping a few inches of snow we got the rest of the "junk" loaded and we were on our way. However, we did wondered what the roads would be like the rest of the way.
We had a little road weather around Dove Creek but then the roads were clear on into Monticello where Dean had to stop and do some banking business. When he came out of the bank, he said that he had been told that the roads into Moab and on up thru Green River were going to be bad; but, we were truly blessed. We saw snow as far as you could see from our front door in Farmington all the way to our "new" front door in Mapleton, but the roads were clear and dry. We were so grateful.
Ryan actually traveled really well. We didn't have any problems other than the closer we got to Mapleton the quieter he got. I asked him what was bothering him; "I'm just nervous and scared, most of my memories over the last few years have been in Provo," he said. This new phase in his life will be challenging, as he tries to get back into to school and go on with life, with the new limitations.
When we arrived, we had lots of family ready and willing to help get Ryan's bed and equipment set up as well as all the other "goods" unloaded. Dean's mom had prepared a very nice "hot" meal for all of us – which was really nice. As we went to bed that night, we looked back over that 24-hour period of time and felt so grateful and thankful for all the many many hands that help us get here. As we packed the trailers in Farmington, at one point I looked around and had an overwhelming feeling of love and comfort as we had so many ward members and friends (all of which we consider family) as well as immediate family there to make this transition so much easier. We are grateful for modern technology so even though we have moved miles away from our "home" we can still be in touch with our New Mexico family.
As we left Farmington, we still didn't have anything worked out as far as home health services. I started working on getting something lined out in November, but hadn't been able to make any headway. Two weeks before our departure I was on the phone everyday – most of the day – trying to get things put into place, all to no avail. At that point, I had concluded we could take care of things ourselves for a few weeks which would allow us time to get settled and then I could go door to door and try to find help, rather than trying to work something out by telephone. Hoping and praying that things would work out, I had also consciously put the matter into the Lords' hands. While Dean was in the bank in Monticello, my cell phone rang and it was our medical supplier letting me know that she had been on the phone with yet another home health agency but found that they did not take vent dependent patients. However, she had given my cell phone number to another agency, which she had spoken with, and told me that they may be in touch with us. A few seconds later the cell phone rang again, I answered it and heard the voice on the other end say, "Hi, this is David with Harmony Home Health and I need to get a little more information about your son Ryan so that we can get him set up in our system". After I caught my breath, I gave him all the information he asked for and told him that we were, at that very moment, on the way to our new home in Utah. He said that he would be back in touch and let me know if they would be able to take Ryan as a patient. We traveled on to Moab and the phone rang again, again it was David with more questions. To make a long story short, by the time we got to Mapleton, I had spoken with David again in Green River and Price and had a meeting set up so that we could meet their staff on Saturday and then they would begin services on Sunday! We are so blessed. They showed up Saturday at the agreed time; we had a very enjoyable visit, Ryan was impressed that "they talked the talk" and we were all excited that they were going to begin health care services Sunday morning.
I spoke with Scott later that evening, I told him that I was relieved and thought we had finally got the home health worked out, he said, "Mom, I don't know why you worry so much; you didn't need the service until today anyway!" After getting past the "worry", I know there is a good lesson to be learned; when we have done all we can do, we need to turn the matter over to the Lord and with faith and prayer, He will open doors. Again, we are so blessed.
We woke up Sunday morning to another six inches of snow!! Dean got his workout by helping to shovel walks and driveways. He came in and said he thought we had taken a wrong turn and we were actually in Alaska!! Rob and Kristen have been so gracious to let us live in their basement, which is not your "typical" basement; it is very nice and very comfortable. Their home is at the base of the Wasatch Mountains so as we look out our windows we see the beautiful snow covered mountain tops; it is quite picturesque.
As we unpacked and got settled, we made appointments with the Business Department at BYU so Ryan could talk with a guidance counselor to register for Spring Semester classes and with a Physiatrist to make sure we were on the right track with Ryan's care.
Our visit to the doctor was very informative and hopeful. Dean had met with Dr. King prior to us getting here and had briefly gone over Ryan's injury and what we were looking for in a doctor. As Dr. King was going over things with Ryan he made the comment that when he saw that we had made the appointment to meet with him he was a little nervous as to what he was going to find on the other side of the door as he came into the room. He said he had braced himself for the worst and feared that Ryan's condition would be a "mess" but he was very impressed and surprised that he was in such good health. He was also impressed that Ryan had so much movement in his neck and that he didn't require regular frequent suctioning. After we visited for sometime, he felt that Ryan should see a Pulmonologist specialist and do some testing on the phrenic nerve to see if they could see some diaphragm activity. He also wants us to see a urologist and make sure the bladder is functioning properly. But, the most encouraging word was that he felt there could be some recovery or possible improvement up to 18-months after the injury. He encouraged Ryan not to give up, but to go on with life and find something that he can be productive at. We left his office very encouraged and hopeful that our prayers will be answered, but realize we will deal with where we are at today.
After visiting with the doctor, we went to Olive Garden for lunch. We had a very upbeat, friendly and curious waiter. He sat down at our table and joked with Ryan as he kept asking questions about his chair and how he got hurt, etc. He was amazed at how Ryan was injured and that he didn't have the use of his arms or hands. When he brought Ryan's meal, he warned Ryan that his plate was "very hot." Ryan replied, "OK thanks, I won't touch it!" The waiter looked at Ryan and we all started laughing – he had forgotten that Ryan didn't have movement in his hands!! We do enjoy the fun and laughs.
After we left the restaurant, we went up to BYU's campus where Ryan was able to speak with a business counselor. He registered for a couple of general education classes; math and history. Most of his classes transferred from BYU-I; but he is going to have to take a couple of different courses to stay in the Provo campus Business Management Program. We asked lots of questions and received lots of help, but still need to go to the Accessibility Office and get set up for a note taker. The counselor also told him of a sample math (algebra) test, which was posted on the Internet, that he would have to pass in order to take the upper level math class. As we left campus, Ryan got quieter and quieter. I can always tell when he is "spiraling downward" as he doesn't like to talk. I have also learned to "let it be" until he is ready to talk – which is very difficult for me. When we got home, he looked up the sample math test on the Internet and became very discouraged. He than stated, "How am I going to do math when I can't even write?" Then the tears; mostly mine. It is so hard to know what to say, so I say a little prayer to hopefully say the right thing. I told him that the Lord has closed doors, but He will open others and things will work out – it won't be easy, in fact, this will be very difficult but things will work out. What else can I say? Lots to digest.
We are still working on getting approved for the Utah Waiver Program. I have a call into "our" Utah State Representative, Rebecca Lockhart, to meet with her. Tom Taylor, our New Mexico State Representative was kind enough to take the time to make a call to Ms. Lockhart and opened that door for us. We met all the requirements for the State of New Mexico, via the State of Colorado, which are very similar if not identical to the State of Utah's requirements. Even though the funding (as I understand it) for these programs comes from federal monies, each State runs their own program, so there is no reciprocity. We may have to go thru an appeal process to get approved; we will continue to move forward and do what we need to do to get the help Ryan needs.
We are still working on the house plans, hoping to go to the engineer for approval this week so we can get started building. When we left the architects office, we stopped and grabbed a sandwich and again Ryan was really quiet. I asked what he was thinking. With a sad face he said, "I should be roofing with my uncles." The physical part of this injury is difficult at best, but the emotional and mental aspect is HUGE. I feel like we are on a never ending roller-coaster ride; lots and lots of ups and downs.
Dean and I must have aged somewhat over the last year. Last week when I attended Relief Society, I was asked if I was Kristen's (Rob's wife) mother. Then today in Sunday School, Dean and I were asked if we were Rob's parents!!! Ryan just laughs! We told Ryan we weren't going back!!
Dean is getting used to shoveling sidewalks and driveways. Today we woke up to another four or five inches of snow!! It is beautiful; it warms up pretty fast, this time of year, so by mid day the streets are pretty well cleared off.
We are so grateful for the continued love and support. We couldn't do this with out each of you.
We love you and appreciate all that you have done.
Love,
Dean, Terry and Ryan
P.S. Here is our new address and telephone number:
1825 South 1200 West
Mapleton, UT 84664
Tele 801-494-2057 Fax 801-494-1464
We had a little road weather around Dove Creek but then the roads were clear on into Monticello where Dean had to stop and do some banking business. When he came out of the bank, he said that he had been told that the roads into Moab and on up thru Green River were going to be bad; but, we were truly blessed. We saw snow as far as you could see from our front door in Farmington all the way to our "new" front door in Mapleton, but the roads were clear and dry. We were so grateful.
Ryan actually traveled really well. We didn't have any problems other than the closer we got to Mapleton the quieter he got. I asked him what was bothering him; "I'm just nervous and scared, most of my memories over the last few years have been in Provo," he said. This new phase in his life will be challenging, as he tries to get back into to school and go on with life, with the new limitations.
When we arrived, we had lots of family ready and willing to help get Ryan's bed and equipment set up as well as all the other "goods" unloaded. Dean's mom had prepared a very nice "hot" meal for all of us – which was really nice. As we went to bed that night, we looked back over that 24-hour period of time and felt so grateful and thankful for all the many many hands that help us get here. As we packed the trailers in Farmington, at one point I looked around and had an overwhelming feeling of love and comfort as we had so many ward members and friends (all of which we consider family) as well as immediate family there to make this transition so much easier. We are grateful for modern technology so even though we have moved miles away from our "home" we can still be in touch with our New Mexico family.
As we left Farmington, we still didn't have anything worked out as far as home health services. I started working on getting something lined out in November, but hadn't been able to make any headway. Two weeks before our departure I was on the phone everyday – most of the day – trying to get things put into place, all to no avail. At that point, I had concluded we could take care of things ourselves for a few weeks which would allow us time to get settled and then I could go door to door and try to find help, rather than trying to work something out by telephone. Hoping and praying that things would work out, I had also consciously put the matter into the Lords' hands. While Dean was in the bank in Monticello, my cell phone rang and it was our medical supplier letting me know that she had been on the phone with yet another home health agency but found that they did not take vent dependent patients. However, she had given my cell phone number to another agency, which she had spoken with, and told me that they may be in touch with us. A few seconds later the cell phone rang again, I answered it and heard the voice on the other end say, "Hi, this is David with Harmony Home Health and I need to get a little more information about your son Ryan so that we can get him set up in our system". After I caught my breath, I gave him all the information he asked for and told him that we were, at that very moment, on the way to our new home in Utah. He said that he would be back in touch and let me know if they would be able to take Ryan as a patient. We traveled on to Moab and the phone rang again, again it was David with more questions. To make a long story short, by the time we got to Mapleton, I had spoken with David again in Green River and Price and had a meeting set up so that we could meet their staff on Saturday and then they would begin services on Sunday! We are so blessed. They showed up Saturday at the agreed time; we had a very enjoyable visit, Ryan was impressed that "they talked the talk" and we were all excited that they were going to begin health care services Sunday morning.
I spoke with Scott later that evening, I told him that I was relieved and thought we had finally got the home health worked out, he said, "Mom, I don't know why you worry so much; you didn't need the service until today anyway!" After getting past the "worry", I know there is a good lesson to be learned; when we have done all we can do, we need to turn the matter over to the Lord and with faith and prayer, He will open doors. Again, we are so blessed.
We woke up Sunday morning to another six inches of snow!! Dean got his workout by helping to shovel walks and driveways. He came in and said he thought we had taken a wrong turn and we were actually in Alaska!! Rob and Kristen have been so gracious to let us live in their basement, which is not your "typical" basement; it is very nice and very comfortable. Their home is at the base of the Wasatch Mountains so as we look out our windows we see the beautiful snow covered mountain tops; it is quite picturesque.
As we unpacked and got settled, we made appointments with the Business Department at BYU so Ryan could talk with a guidance counselor to register for Spring Semester classes and with a Physiatrist to make sure we were on the right track with Ryan's care.
Our visit to the doctor was very informative and hopeful. Dean had met with Dr. King prior to us getting here and had briefly gone over Ryan's injury and what we were looking for in a doctor. As Dr. King was going over things with Ryan he made the comment that when he saw that we had made the appointment to meet with him he was a little nervous as to what he was going to find on the other side of the door as he came into the room. He said he had braced himself for the worst and feared that Ryan's condition would be a "mess" but he was very impressed and surprised that he was in such good health. He was also impressed that Ryan had so much movement in his neck and that he didn't require regular frequent suctioning. After we visited for sometime, he felt that Ryan should see a Pulmonologist specialist and do some testing on the phrenic nerve to see if they could see some diaphragm activity. He also wants us to see a urologist and make sure the bladder is functioning properly. But, the most encouraging word was that he felt there could be some recovery or possible improvement up to 18-months after the injury. He encouraged Ryan not to give up, but to go on with life and find something that he can be productive at. We left his office very encouraged and hopeful that our prayers will be answered, but realize we will deal with where we are at today.
After visiting with the doctor, we went to Olive Garden for lunch. We had a very upbeat, friendly and curious waiter. He sat down at our table and joked with Ryan as he kept asking questions about his chair and how he got hurt, etc. He was amazed at how Ryan was injured and that he didn't have the use of his arms or hands. When he brought Ryan's meal, he warned Ryan that his plate was "very hot." Ryan replied, "OK thanks, I won't touch it!" The waiter looked at Ryan and we all started laughing – he had forgotten that Ryan didn't have movement in his hands!! We do enjoy the fun and laughs.
After we left the restaurant, we went up to BYU's campus where Ryan was able to speak with a business counselor. He registered for a couple of general education classes; math and history. Most of his classes transferred from BYU-I; but he is going to have to take a couple of different courses to stay in the Provo campus Business Management Program. We asked lots of questions and received lots of help, but still need to go to the Accessibility Office and get set up for a note taker. The counselor also told him of a sample math (algebra) test, which was posted on the Internet, that he would have to pass in order to take the upper level math class. As we left campus, Ryan got quieter and quieter. I can always tell when he is "spiraling downward" as he doesn't like to talk. I have also learned to "let it be" until he is ready to talk – which is very difficult for me. When we got home, he looked up the sample math test on the Internet and became very discouraged. He than stated, "How am I going to do math when I can't even write?" Then the tears; mostly mine. It is so hard to know what to say, so I say a little prayer to hopefully say the right thing. I told him that the Lord has closed doors, but He will open others and things will work out – it won't be easy, in fact, this will be very difficult but things will work out. What else can I say? Lots to digest.
We are still working on getting approved for the Utah Waiver Program. I have a call into "our" Utah State Representative, Rebecca Lockhart, to meet with her. Tom Taylor, our New Mexico State Representative was kind enough to take the time to make a call to Ms. Lockhart and opened that door for us. We met all the requirements for the State of New Mexico, via the State of Colorado, which are very similar if not identical to the State of Utah's requirements. Even though the funding (as I understand it) for these programs comes from federal monies, each State runs their own program, so there is no reciprocity. We may have to go thru an appeal process to get approved; we will continue to move forward and do what we need to do to get the help Ryan needs.
We are still working on the house plans, hoping to go to the engineer for approval this week so we can get started building. When we left the architects office, we stopped and grabbed a sandwich and again Ryan was really quiet. I asked what he was thinking. With a sad face he said, "I should be roofing with my uncles." The physical part of this injury is difficult at best, but the emotional and mental aspect is HUGE. I feel like we are on a never ending roller-coaster ride; lots and lots of ups and downs.
Dean and I must have aged somewhat over the last year. Last week when I attended Relief Society, I was asked if I was Kristen's (Rob's wife) mother. Then today in Sunday School, Dean and I were asked if we were Rob's parents!!! Ryan just laughs! We told Ryan we weren't going back!!
Dean is getting used to shoveling sidewalks and driveways. Today we woke up to another four or five inches of snow!! It is beautiful; it warms up pretty fast, this time of year, so by mid day the streets are pretty well cleared off.
We are so grateful for the continued love and support. We couldn't do this with out each of you.
We love you and appreciate all that you have done.
Love,
Dean, Terry and Ryan
P.S. Here is our new address and telephone number:
1825 South 1200 West
Mapleton, UT 84664
Tele 801-494-2057 Fax 801-494-1464
Thursday, March 09, 2006
Snow!
We're on our way. We had snow this morning in Farmington so I checked out weather.com and looks like we will be traveling in the snow. I showed Dean what the weather looked like on Friday and then asked him if we should still go – dumb question!! He said, "Yes".
We are looking forward to the move and trying to get settled in Provo.
Ryan received a call from BYU-Provo letting him know that a letter of acceptance was in the mail. In talking with the Dean of Admissions assistant, I learned that I worked with the Dean when I worked at BYU years and years ago. His assistant gave me her name and number as a contact person in the event that we need assistance when we get on campus. It makes it so much easier when we have someone who is willing to help us get past some of the hurdles. I am sure we will give her a call! Ryan is looking forward to getting back into school; however, he wishes so badly that he could return to BYU-Idaho. I told him tonight, "This probably sounds like a trite statement, but there must be a reason you need to be on the BYU-Provo Campus."
We are still working on the design of the house with our architect. I hope when we get it done, it looks and flows like I see it in my mind. Sometimes I have a hard time getting my vision on paper; I just need the architect to read my mind!!
We finally had a "seating" specialist (I'm not sure of the correct medical title) come and look at Ryan's manual wheelchair and get it operational. While he was here, he took a look at his power chair and after assessing both chairs he determined that we had the wrong size of chairs. He said that generally when a patient leaves the hospital he is at his lowest weight and the therapists always fit the chair to that weight, forgetting that when the patient gets home they generally get back to their original weight or sometimes even put on a few more pounds. Needless to say, we have to order larger seat cushions, height adaptor plates, etc. for both of his chairs. We will contact a specialist when we get to Provo to come and fix both chairs. We run the risk of having skin problems until the chairs are fixed.
I believe we have experienced Autonomic Dysreflexia (AD). Ryan was replying to several e-mails the other night and asked to have the speaking valve put in line. He has better success with the voice recognition software when the valve is in place. We haven't got the speaking valve fine-tuned so we don't use it very often; when he does us it, it isn't for long periods of time. I was standing in the kitchen, right across the counter from him, when he said in a troubled voice, "Mom I'm not breathing right, take this valve off." It takes a few seconds to get the valve removed from the circuitry; I was hurrying as fast as I could trying not to panic and jerk the trach right out of his throat! A few seconds after I got the valve out and the circuitry put back together he said that he was breathing a little better. I wheeled him into watch TV and he said again, "Mom something is wrong, I shouldn't have used the valve." His face turned bright red, his hands went white as a ghost and his fingernails were blue. I wondered "what now" and started crying (I think because I was so tired) and asked, "Do you want me to call 911?" He said, "No, just rub my forehead." I had to get myself under control since I was the only one home; Lisa had just left to go to volleyball practice and Dean was in Utah. My mind was racing and I thought, "How do I take care of him and call 911; and if I do call 911, will they even know what to do?"
I was trying to remember what they had told us in the hospital about AD. I remembered they said the number one cause of AD is urinary tract problems, then bowel issues, then anything – hang nails, kidneys, heart, etc. Since he has a toe nail that is infected, which we can't seem to get it cleared up, I took his shoes off hoping that would help. Then I made sure the tubing for his leg bag was not kinked. At that point he was in excruciating pain. AD is very serious and if not caught in time can result in (cut-n-past from the web!) severe hypertension leading to cerebral or subarachnoid hemorrhage, seizures, atrial fibrillation, neurogenic pulmonary edema, retinal hemorrhage, coma or death. When we were in the "Tetra-Topics" classes at Craig, they went over several times how serious AD can be, helping us realize the problem needed to be resolved expeditiously. A few minutes later, he finally started feeling better. That was the first and I hope the last time we experience that. After the episode was over I got him to bed, then I went to bed and cried some more; mostly due to tiredness but also wondering if this will ever end. Most times in life we look for new challenges and new experiences; we are learning to like the mundane!!
We have tried and tried to get Ryan's toe to heal. We may end up having to see a podiatrist to have his toe nail cut off if we can't nurse it back to health. Because his feet are so long (size 13) his feet hang over the foot-rests several inches. If he is not watching very closely, he hits his toes when making close turns or moving up to a table, etc. The other day he got in the van and hit his toe on the lift. I told him that in order for his toe to heal he was going to have to quit jamming it or maybe we could get him some steal-toed boots. After thinking about it, we decided he would probably be the only tretraplegic wearing steal-toed boots!!
I had the 24-hour flu bug and then Dean got it. We were hoping and praying that it would by pass Ryan – but, he was "hurling" tonight. Dean gave him a blessing, so hopefully he will have a mild case and be able to get some sleep.
During a visit with a friend the other night, she asked me how I could do all of this without showing any emotion. I told her that we all feel like we are in a "state of numbness." Each day we spend so much time on the phone trying to get insurance, prescriptions, home health care, waiver programs, and a job etc, worked out all the while making sure Ryan's needs are met. Every other night when I go into turn him (we turn him every three hours – hoping not to have skin sores), I have to pinch myself to see if this is really happening. It is so unreal. After I pinch myself, I realize, "Yes, this is really happening." I told Ryan about my thoughts of pinching myself every once in awhile; he said, "Mom, you can pinch me but I won't feel it!"
We haven't been able to get home health care assistance or the waiver program in place yet in Utah. I feel like I have talked to everyone in the State of Utah that has anything to do with home heath care and the waiver program in the last couple of months. I started this process before the end of the year but here we are down to the wire and still don't have anything in place. In order for Ryan to get on the Utah waiver program immediately, the State will require him to go back into a facility for 90-days to show that it would be more cost effective if he were in a home setting. I keep telling them I can put a pencil to paper and show them that it would be cheaper; they keep telling us "that's how it is done". If we don't put him in a facility, he has to go on a waiting list which could take up to five or ten years. Each person I have spoken with tells me the reason there is a waiting list is due to lack of money, lack of money, lack of money. When talking with the Director of the Utah Medicaid Program he again stated, "There is no money." I asked him to please not tell me there was no money, I had spoken with approximately 18 people who were in some way affiliated with the waiver program and they were all receiving salaries from the State of Utah; so there was money it just wasn't filtering down to the people who so desperately need it. He was kind enough to acknowledge my request and during our lengthy conversation didn't say any more about there being "no money." He had to catch himself a couple of times!! Hopefully, with the help of our NM State Representative we can make some progress. We'll see.
We are going to miss Farmington. We have been here for 21-years. Michelle and Lisa were born while living here; this is all our kids know. This was the first place we lived after we were married that we didn't have any immediate family. Since we have been here, we have made lots of friends and consider most family! We love you all and appreciate ALL that you have done for us. There have been so many that have made great personal sacrifices on our behalf. We appreciate the flowers, food, cards, visits, as well as the emotional, spiritual, and monetary support. Your love and kindness is so appreciated; we couldn't have done this without you. When we left Denver we talked about staying there, going to Provo then, or the Phoenix area. All Ryan wanted to do was to come HOME; he has felt such a closeness to many of you. We appreciate your concern and love for him.
Thank you for helping us raise our children.
With Love,
Dean, Terry and Ryan
We are looking forward to the move and trying to get settled in Provo.
Ryan received a call from BYU-Provo letting him know that a letter of acceptance was in the mail. In talking with the Dean of Admissions assistant, I learned that I worked with the Dean when I worked at BYU years and years ago. His assistant gave me her name and number as a contact person in the event that we need assistance when we get on campus. It makes it so much easier when we have someone who is willing to help us get past some of the hurdles. I am sure we will give her a call! Ryan is looking forward to getting back into school; however, he wishes so badly that he could return to BYU-Idaho. I told him tonight, "This probably sounds like a trite statement, but there must be a reason you need to be on the BYU-Provo Campus."
We are still working on the design of the house with our architect. I hope when we get it done, it looks and flows like I see it in my mind. Sometimes I have a hard time getting my vision on paper; I just need the architect to read my mind!!
We finally had a "seating" specialist (I'm not sure of the correct medical title) come and look at Ryan's manual wheelchair and get it operational. While he was here, he took a look at his power chair and after assessing both chairs he determined that we had the wrong size of chairs. He said that generally when a patient leaves the hospital he is at his lowest weight and the therapists always fit the chair to that weight, forgetting that when the patient gets home they generally get back to their original weight or sometimes even put on a few more pounds. Needless to say, we have to order larger seat cushions, height adaptor plates, etc. for both of his chairs. We will contact a specialist when we get to Provo to come and fix both chairs. We run the risk of having skin problems until the chairs are fixed.
I believe we have experienced Autonomic Dysreflexia (AD). Ryan was replying to several e-mails the other night and asked to have the speaking valve put in line. He has better success with the voice recognition software when the valve is in place. We haven't got the speaking valve fine-tuned so we don't use it very often; when he does us it, it isn't for long periods of time. I was standing in the kitchen, right across the counter from him, when he said in a troubled voice, "Mom I'm not breathing right, take this valve off." It takes a few seconds to get the valve removed from the circuitry; I was hurrying as fast as I could trying not to panic and jerk the trach right out of his throat! A few seconds after I got the valve out and the circuitry put back together he said that he was breathing a little better. I wheeled him into watch TV and he said again, "Mom something is wrong, I shouldn't have used the valve." His face turned bright red, his hands went white as a ghost and his fingernails were blue. I wondered "what now" and started crying (I think because I was so tired) and asked, "Do you want me to call 911?" He said, "No, just rub my forehead." I had to get myself under control since I was the only one home; Lisa had just left to go to volleyball practice and Dean was in Utah. My mind was racing and I thought, "How do I take care of him and call 911; and if I do call 911, will they even know what to do?"
I was trying to remember what they had told us in the hospital about AD. I remembered they said the number one cause of AD is urinary tract problems, then bowel issues, then anything – hang nails, kidneys, heart, etc. Since he has a toe nail that is infected, which we can't seem to get it cleared up, I took his shoes off hoping that would help. Then I made sure the tubing for his leg bag was not kinked. At that point he was in excruciating pain. AD is very serious and if not caught in time can result in (cut-n-past from the web!) severe hypertension leading to cerebral or subarachnoid hemorrhage, seizures, atrial fibrillation, neurogenic pulmonary edema, retinal hemorrhage, coma or death. When we were in the "Tetra-Topics" classes at Craig, they went over several times how serious AD can be, helping us realize the problem needed to be resolved expeditiously. A few minutes later, he finally started feeling better. That was the first and I hope the last time we experience that. After the episode was over I got him to bed, then I went to bed and cried some more; mostly due to tiredness but also wondering if this will ever end. Most times in life we look for new challenges and new experiences; we are learning to like the mundane!!
We have tried and tried to get Ryan's toe to heal. We may end up having to see a podiatrist to have his toe nail cut off if we can't nurse it back to health. Because his feet are so long (size 13) his feet hang over the foot-rests several inches. If he is not watching very closely, he hits his toes when making close turns or moving up to a table, etc. The other day he got in the van and hit his toe on the lift. I told him that in order for his toe to heal he was going to have to quit jamming it or maybe we could get him some steal-toed boots. After thinking about it, we decided he would probably be the only tretraplegic wearing steal-toed boots!!
I had the 24-hour flu bug and then Dean got it. We were hoping and praying that it would by pass Ryan – but, he was "hurling" tonight. Dean gave him a blessing, so hopefully he will have a mild case and be able to get some sleep.
During a visit with a friend the other night, she asked me how I could do all of this without showing any emotion. I told her that we all feel like we are in a "state of numbness." Each day we spend so much time on the phone trying to get insurance, prescriptions, home health care, waiver programs, and a job etc, worked out all the while making sure Ryan's needs are met. Every other night when I go into turn him (we turn him every three hours – hoping not to have skin sores), I have to pinch myself to see if this is really happening. It is so unreal. After I pinch myself, I realize, "Yes, this is really happening." I told Ryan about my thoughts of pinching myself every once in awhile; he said, "Mom, you can pinch me but I won't feel it!"
We haven't been able to get home health care assistance or the waiver program in place yet in Utah. I feel like I have talked to everyone in the State of Utah that has anything to do with home heath care and the waiver program in the last couple of months. I started this process before the end of the year but here we are down to the wire and still don't have anything in place. In order for Ryan to get on the Utah waiver program immediately, the State will require him to go back into a facility for 90-days to show that it would be more cost effective if he were in a home setting. I keep telling them I can put a pencil to paper and show them that it would be cheaper; they keep telling us "that's how it is done". If we don't put him in a facility, he has to go on a waiting list which could take up to five or ten years. Each person I have spoken with tells me the reason there is a waiting list is due to lack of money, lack of money, lack of money. When talking with the Director of the Utah Medicaid Program he again stated, "There is no money." I asked him to please not tell me there was no money, I had spoken with approximately 18 people who were in some way affiliated with the waiver program and they were all receiving salaries from the State of Utah; so there was money it just wasn't filtering down to the people who so desperately need it. He was kind enough to acknowledge my request and during our lengthy conversation didn't say any more about there being "no money." He had to catch himself a couple of times!! Hopefully, with the help of our NM State Representative we can make some progress. We'll see.
We are going to miss Farmington. We have been here for 21-years. Michelle and Lisa were born while living here; this is all our kids know. This was the first place we lived after we were married that we didn't have any immediate family. Since we have been here, we have made lots of friends and consider most family! We love you all and appreciate ALL that you have done for us. There have been so many that have made great personal sacrifices on our behalf. We appreciate the flowers, food, cards, visits, as well as the emotional, spiritual, and monetary support. Your love and kindness is so appreciated; we couldn't have done this without you. When we left Denver we talked about staying there, going to Provo then, or the Phoenix area. All Ryan wanted to do was to come HOME; he has felt such a closeness to many of you. We appreciate your concern and love for him.
Thank you for helping us raise our children.
With Love,
Dean, Terry and Ryan
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