Miracles...

"Miracles are never wrought without prayer, felt need, and faith...they are the natural result of the Messiah's presence among men."
Bible Dictionary

Monday, December 12, 2011

Brrr ! It's cold!

Even in Arizona it gets cold and It's an adjustment for Stephen to stay warm. It is a blessing to be in Arizona, compared to colder places with snow. I'm not sure how we'd get along with a wheelchair in the snow. Anyway, things are moving forward. I'll let you know about a few new things we are trying. We've found a new support brace for the left shoulder that we are using instead of kinesio tape. We can take it on and off easier and use the estim machine more often on his shoulder. It's our number one immediate priority to get that shoulder stronger. We also found a chiropractor that is trying a laser treatment to see if Stephen has any positive response. It is a hand held cold laser that we use for 3 minutes every hour and just shine it on the back of his neck. Stephen has started using his wrist splints less, and we are waiting for gloves to arrive instead. They will be less rigid, but he can still use his wrists. Those are the gloves he will use in a manual chair to turn the wheels with the heels of his hands. Actually, he is using his iPad more and more without his stylus splint, which I count as a big improvement. Also, his blood pressure is regulating itself more and he is taking less medication. So, we are continuing with therapy three times a week at the neuro institute and twice in the pool. Other than that Stephen has decided to give himself a deadline for the computer science final and decide on some independent study classes.

Stephen can't think of anything he even wants for Christmas. So, I was hoping that we could fill his stocking full of letters from all of you! If you get a chance...email us a note at genny.m@q.com or send it I the mail to 872 E. Taurus Pl. Chandler, AZ 85249.

Monday, November 14, 2011

Today is 7 months

Today is an anniversary we really don't like to celebrate, but have to acknowledge. I guess I need to remember that many of you want to keep up to date, even if I don'tfeel like there is much to report. I think my goal has always been to be positive and optimistic and there are days we just don't feel it. Stephen has been remarkably brave and hopeful this whole time, but that doesn't mean there aren't some tough moments to work through. We are being taught how to find a deep, abiding faith and trust in our Heavenly Father, without that we won't survive. After we make it through these tough times, we can make it through anything. We continue to pray to know the Lord's will, which we have always felt is for Stephen to recover. Those impressions were answers to prayers and aren't diminished with the passing of time. Elder Costa told us to have patience, which I think means we will be tried beyond what we think is possible. I continue to have faith in the Heavenly Father's all encompassing power. I realize that the medicine tells us only so much is possible, but I know that with God all things are possible, including miracles and healing. We continue to pray and petition him humbly for mercy, compassion, and strength. I like to imagine that if Christ were on the earth, He wouldn't hesitate to heal Stephen, and so I find myself looking forward more than ever to the Second Coming. However, I also realize that we have the fullness of the gospel, including the priesthood power to act in his name. We appreciate all of you who continue to exercise your faith and prayers on Stephen's behalf, that those blessings will come about.

Just to let you know what's been going on...therapy is the same except the pool schedule moved to Wed/Fri afternoons which makes for long days and leaves Tues/Thurs wide open. We do exercises at homes much as possible and try to get up I the standing frame at home. The dilemma is we can only do that when Spence is home and we don't have any other evening plans. Stephen taught Elder's Quorum a few weeks ago, which I was great. He had taught every month up at school, but wasn't sure about teaching the "old married guys". I think he realized it's not much different. We also finally got those wisdom teeth out, which was scheduled last spring. Two teeth had already broken through, so it was long overdue. It was a really great recovery and we are glad to check that off the list. That pretty much is all the news to report. We are looking forward to visits from grandparents this week and Dan for Thanksgiving!

Wednesday, October 19, 2011

Manual wheelchair

Not yet exactly...but a manual wheelchair is the big goal in physical therapy that we are working for. Stephen tried out two different kinds, one with rope wrapped around the wheel, and one with knobs sticking out every few inches. He wears quad gloves and pushes off with the heel of his hands. The left side is still has a ways to go, so the tricky part is evenly pushing off and going in a straight line. I love seeing him in the chair because it represents a tangible purpose for the exercises. A manual chair means strong triceps, wrist rotation and extension, trunk control, shoulders, and back. It signifies a little more independence, because it is moving by his power. Just a couple of laps around the gym was exhausting, but a good workout. Stephen is also starting to work towards helping with transfers using a slide board. I realize that most of you have no clue what that means, but he is trying to lock out his elbow and wrist and bear weight on board that bridges from his chair to the bed, or chair to chair. Then he slides along the board while sitting up. Those are both significant goals for us.

His aquatic therapist was really pleased with his right wrist last week. He is getting more control over the extension. Actually, that small improvement might be enough to keep him from discharge. We are wrapping his hands with the fingers in a fist and using the e-stim on his forearm to bend the wrist up, hoping that will begin to carry over. When he can bend the wrist up, then the fingers follow naturally into a "pinching" form with the pointer and thumb. There are splints that help too, as soon as Stephen gets the wrist movement down.

We are pleased to report that the standing frame has been delivered and assembled. Rather than wait for the therapist to help, we adjusted it ourselves and Stephen watched football yesterday standing up. Nobody else in the family had gotten to see him stand up yet, so it was fun for everyone (even Spence) to look up to him. It was nicer for Stephen to look down. This will become part of our daily routine, which is great for weight bearing on the bones and weight relief, blood pressure, etc. It is one of those things that Spence and I both need to be there to transfer him, unless I can figure it out. So, if you want to come by in the evenings, he might be standing up?!

Thank you for your continued prayers and fasting. We are learning what if means to pray always. I know that Heavenly Father hears and answers those prayers.

Sunday, October 9, 2011

No more St. Joes!

Well, the latest news is we are now discharged from Occupational Therapy at St. Joe's and will soon be discharged from aquatic therapy. I had a feeling this was coming when he was evaluated last at St. Joes and we had a hard time coming up with "attainable goals", which is used for insurance purposes. All the therapists continue to comment on how he is getting measurably stronger, but that doesn't count for therapy. The only thing that really matters is functional progress. So they set us up with a home exercise program, assuming that someone will be able to assist him and that we will have all the equipment or drive to a disability gym and use their specific weight machines and equipment. In theory, the therapeutic pool is open for personal use for a small monthly fee, however we aren't sure if they will allow Stephen access since he is a risk in the water. At least we still have the Neuro Institute and will hopefully be able to begin occupational therapy there. I feel a critical need to get as much therapy as possible, hoping to get the maximum benefit and retrain the neuropathways. In reality, I don't know what else we would do without therapy, not that I particularly love having appointments every day and always hurrying to be somewhere on time...but therapy represents work towards progress and hope. We aren't ready to give up yet on working towards progress. Of course, they always leave the door open for us to return to therapy when there is increased mobility, which we continue to hope and pray will happen.

We have loved the cooler weather this week! The summer temperatures are brutal, especially for Stephen. He overheats when he is in hot temperatures for too long and hasn't been outside for long periods of time in months. The younger kids are out of school for two weeks for intersession and it really isn't an option for us to take a trip this year, so Thursday we spent the day at the zoo. I felt totally guilty when Sarah couldn't even remember going to the zoo...I know I've taken her before but it's been awhile. Anyhow, it was wonderful to get outside and enjoy the beautiful scenery, animals, and weather. We had a great time together, even though we had to endure Nathan's moaning and whining about how he hated the zoo all the way there. Of course, he had a great time when it was all over. It was great just to do something relaxing and destressing.

I want to comment on thoughts from General Conference...I'll work on that for tomorrow!

Wednesday, September 21, 2011

A Special Visitor

I really need to catch up. My apologies to those of you wondering what happened to us. No worries...we are fine. I just need to find a dedicated time to write and stick with it. I keep on telling Stephen that he could always contribute, but he hasn't taken me seriously. There are some things that I'm not sure he wants to share, so it would be nice to have him pipe up every now and then. We are as busy as ever with therapy. He is getting stronger and we can see progress even if it is seemingly small. We have one therapist who works with him at the pool and the neuro institute. She really pushes him and has some aggressive goals. He is working on sitting balance and leaning over while supporting himself with his arm to the side. This requires strong triceps, shoulders, trunk, and biceps. His left shoulder is still subblexed and we keep it taped with kinesio tape and use the estim too. We are praying for that shoulder to get stronger so he can do more with the left side. We should have a standing frame at home this week, so that will be great to use at night after dinner.

We had a nice visit from elder Choi of the quorum of the seventy. He and his wife were visiting our stake conference and wanted to come over to visit our family. It was a busy Saturday morning, but we crammed in a cross country race and were all ready for our VIP guest by 10:30, a very untypical Saturday morning. They were very kind and I think it made quite an impression on the younger kids. We had a nice visit and he was able to give Stephen a priesthood blessing.

In other news, Stephen has been studying seriously for his world history final, and just took it on Monday. His professor arranged to have the local institute teacher be the proctor, which was very convenient. Stephen dictated his answers and the teacher circled them. Then he dictated his essay response which we typed and he dictated the edits as he went. Yeah! It is so great to get that behind us. Now he is working on his computer science final, the last one! He is going to try out the voice recognition software in windows 7. Plus he's discovered Splashtop, a cool app that he can use to access his laptop from the iPad. The difficulty is typing. With his stylus splint he can type on the iPad slowly, but a lot better than the computer. So, we are trying to figure out the best system to use for his fInal, which is writing a java program. I am more grateful than ever for his sharp mind. I know he will be able to figure it out.

We did get some interesting test results back this week from some blood work to check on his blood clot. Apparently, he has two gene mutations that make him more susceptible to blood clots. One can be maintained with folic acid. The other one is Factor V and means he will be on blood thinners indefinitely. We plan on an ultrasound before Christmas to check on the blood clot. Now we need to have our blood checked too...even the kids. Ugh! It's good to know why he got a blood clot so quickly and severely. It wasn't just the immobility alone, but a combination of that and bad genes. There are also two proteins they checked for, but when you are on coumadin the test results are inconclusive. We will need to go off the coumadin and switch over to lovanox shots in order to get his wisdom teeth pulled. That will happen sometime soon...aren't we excited?!

Tuesday, September 13, 2011

Sorry, I took a little break!

I guess if I get pestered enough I'll remember to get on the blog. Stephen is doing well. Our schedule is a little out of whack, with OT still at St. Joes and PT at the Neuro Institute. Plus, aquatics at 360. Nothing is at the same time on the same day, at least for this month. I feel like I'm always in a rush to get to an appointment on time, and that's asking a lot from me. I'm not the most punctual person, but I'm giving it my best effort. I am still getting used to the extra process to get out the door; lower the ramp on the van, open the door for Stephen, gather the supplies, snacks, ipad, hook the wheelchair in on all four corners, raise the ramp....and the reverse when we get there. It adds an extra 10 minutes. I'm realizing that there really aren't enough handicapped spots, especially with extra space on the side for the ramp. Stephen really doesn't go to a large variety of places anyway, just doctors' offices, therapy, church, the movies, maybe someplace to eat. He would rather avoid errands and shopping, unless absolutely necessary. That's nothing new, but now I don't force him to come along like I used to. When the weather cools off, we will have more opportunities to go outdoors on walks. I guess he is making up for all the time he didn't spend at home during high school. On Labor Day we felt the pressure of doing something fun, just so we could say we got out of the house. A long car trip out of the valley isn't really possible now with only 5 seats in the van. It is too hot for Stephen to be outside physically. Things we would of done before like bowling or ice-skating aren't choices now. So, we went to the aquarium at Arizona Mills. It was nice, but small...which was fine. It was a chance just to get out and do something normal. When I get overwhelmed thinking about everything at once (I can't let myself do that often) this is one of the things I worry about. I'm grateful for Stephen's keen mind, and that he can keep himself busy for long times by reading and studying, although I worry about him missing out on everything he did before.

Here's another quote that helps me. "No pain that we suffer, no trial that we experience is wasted. It ministers to our education, to the development of such qualities as patience, faith, fortitude, and humility. All that we suffer and all that we endure, especially when we endure it patiently, builds up our characters, purifies our hearts, expands our souls, and makes us more tender and charitable, more worthy to be called the children of God...and it is through sorrow and suffering, toil and tribulation, that we gain the education that we come here to acquire and which will make us more like our Father and Mother in heaven." That was by Orson F. Whitney, quoted by Pres. Kimball in "Faith preceded the Miracle".

Saturday, September 3, 2011

Playing the insurance game

Well, last Monday our physical therapist at St. Joe's let us know we were going to be discharged at the end of the week, at least from physical therapy. It's a matter of "maintenance" vs. "improvement" in the eyes of insurance, and I guess using the standing frame and the e-stim cycle are just maintenance. Occupational therapy has a longer list of goals, like grooming, eating, using a remote, getting a drink. OT also has more measurable improvements of arm strength, because his arms and shoulders are definately getting stronger, but they even cut us down to two days a week. Anyway, we decided to check out another rehab in Tempe on the way home that day, that specializes in neuro rehab. They had the equipment and more importantly, the attitude of improvement. After talking with them for a few minutes they suggested lots of "improvement goals" that would continue justifying physical therapy, like sitting independently, using a manual wheelchair, etc. So, we will go for an evaluation this week, and probably switch over to this place, The Neuro Institute. Stephen is optimistic about it, and we are hopeful it will be a good match.

Stephen has been consistently studying and getting ready to take his History final. It will be good to get that out of the way. It is keeping him occupied. When those are out of the way, we will have to decide about moving forward with independent study classes while we continue with therapy. There are too many unknowns to make any decisions too far in advance. Of course, we continue to wait with hope and faith for Stephen to improve. Any improvements will mean more independence and strength to be able to go back to school. Sometimes I find myself praying for just small improvements, in the triceps, wrists and hands. Any of those things would be a miracle to us! For those of you fasting tomorrow on Fast Sunday, please consider that in your prayers.

We know that one of the purposes of our life on earth is to get a physical body. Another purpose is to be tested to see if we will choose to be faithful in trials and temptations. Stephen has always been an excellent test-taker. He was always the best student, starting in kindergarten. Taking tests was just intuitive without too much effort. I remember when he took the ACT the first time and did really well, but was unsatisfied with one portion. So, he took it again and did well on that section, but worse in a different section. So, the third time he took it was the charm. He did really well on all the sections...almost perfectly. Well, this is a test beyond any test in school. U know we all have our trials in life, some might be a series of quizzes, some might be multiple-choices. This is more like a big essay...or defending a thesis. It was definately a "pop quiz" too. Well, I guess we knew that we would be tested when we came to earth, so maybe we had some warning. Anyhow, we wanted to come to earth even though we knew it could be hard. I don't think we knew it could be this hard, but hopefully we can pass this test too.

Sunday, August 28, 2011

Tidbits from the week

Another week just flew by! Mortality really is just a short time in comparison with eternity, especially when we are looking backwards. However, looking forward, considering the uncertainties, life on earth still seems like forever. Anyhow, we are continuing at St. Joe's with PT and OT. We tried out the RTI E-stim bike twice this week, and Stephen really enjoyed it. He can pull up to it with his wheelchair and stays in the chair. The electronic pads are placed on his quads and hamstrings (2 on each leg). There are also pads for the glutes, but we haven't used those because of the time it would take to get out the chair and put them on and then get back in the chair. His feet are in footrests. The bike starts off with 100% power from the motor, while giving the electronic stimulation to the quads and hamstrings coordinated with the motion of the bike. It is a really high dose of stimulation...if he could feel it, he wouldn't be able to tolerate it apparently. Anyhow, the muscles begin to take over the motion and the motor backs off until it is 100% e-stim/muscle and no motor. He did this two days for at least 45 minutes. It was a good cardio workout too. It is an awesome therapy with lots of benefits. It would be ideal to have our own bike at home, but it is one of those insurance battles, and a really expensive one too. Currently, we are working on getting a standing frame at home...then we'll tackle the bike. Stephen also moved up to the heavier weight machine in OT, especially for the right arm and is showing some progress with those muscles. There is a little frustration when we have to work on adaptations and functional skills instead of focusing on strengthening exercises. That is technically what Occupational therapy is, but Stephen would rather spend time on muscle strengthening than opening doors and pushing elevator buttons. It's another therapy requirement dictated by insurance approval for continued visits. The highlight of the week is aquatic therapy. His therapist on Friday was really impressed with his improvement this week, lifting his right arm up above his shoulder and straightening out the tricep. Anyhow, we decided against changing rehabs for now and will keep our options opened to change in the future.

To all you missionary moms...tell your sons thanks for their letters to Stephen this week. I think there was a letter almost every day. Stephen loved to hear from them. They are great friends. A special shout out some spectacular girls who have come over every week to bring dinner and eat with us! We are going to miss you now that you are gone to school. You are the "cream of the crop" and thanks for your friendship and cheerfulness. What great examples you are to my three girls! We had some great laughs too. I'll never forget when Sarah, my 8 year old, was talking about how Stephen was "petrified". She's just a little obsessed with Harry Potter lately. Yesterday she set up a pretend school and was dictating a spelling test to Nathan using only words from Harry Potter, like Gringotts, Diagon Alley, etc. (I probably misspelled them!) She would say the word and use it in a sentence and then say it again. You should of been here for that, Amy and Syd! Stephen got a good laugh out of it. As much as I wish Stephen weren't here...that he was in the MTC...there is some blessing in the extra time we are getting to spend together with everyone home.

One thought from Neal A. Maxwell, "A good friend, who knows whereof he speaks, has observed of trials, 'If it's fair, it is not a true trial!' That is, without the added presence of some inexplicableness and some irony and injustice, the experience may not stretch us or lift us sufficiently. The crucifixion of Christ was clearly the greatest injustice in human history, but the Savior bore up under it with majesty and indescribable valor." That just hits home.

Sunday, August 21, 2011

Insights from Sunday School

Our lesson today in Sunday School was from Acts and Thessalonians, talking about Paul and his second missionary travels. One of the scriptures read and discussed was Doctrine and Covenants, Section 4:

Now behold, a marvelous work is about to come forth among the children of men.

2 Therefore, O ye that embark in the service of God, see that ye serve him with all your heart, might, mind and strength, that ye may stand blameless before God at the last day.

3 Therefore, if ye have desires to serve God ye are called to the work;

4 For behold the field is white already to harvest; and lo, he that thrusteth in his sickle with his might, the same layeth up in store that he perisheth not, but bringeth salvation to his soul;

5 And faith, hope, charity and love, with an eye single to the glory of God, qualify him for the work.

6 Remember faith, virtue, knowledge, temperance, patience, brotherly kindness, godliness, charity, humility, diligence.

7 Ask, and ye shall receive; knock, and it shall be opened unto you. Amen

I read the list of characteristics for us to have as missionaries, (vs 6) I recognized every one of them in Stephen, perhaps pre-accident, but especially now. As we go through the refiner's fire, we are polished and grow in a way only possible through trials. We are not the same as we used to be. We are all changed to some extent because we are experiencing this with Stephen. It's overwhelming to comprehend the impact it has on Stephen. He was a great young man before any of this happened, eager and excited to serve his mission, with a strong testimony. Now he can add to that testimony patience, humility, charity, and faith. He is being prepared to share the gospel with a personal, powerful testimony beyond anything he could have shared before. He is my example and strengthens me.

Tuesday, August 16, 2011

Remember Stephen tomorrow!

I love my little brother Dan. He is here visiting for the week and we are having a great time. For those who don't know Dan is my youngest brother, 18 years younger than me. He and Stephen are great friends and were both at the Y last year together. All the kids love hanging out with him. He is here for the school break to visit and help out. Just having him here has cheered us all up! He is great for a swim, to play games, help with homework, help Stephen do exercises, and take Stephen to therapy. It's awesome!

Yesterday I ran to the grocery store for a quick trip, around 9 pm when no one else is there. As I walked around, the thought came to me that something good will happen to Stephen soon. It was the most hopeful, positive feeling. I don't know what it will be or when, but I am anticipating something wonderful as a gift of reassurance perhaps from Heavenly Father. Any small improvements, or news counts in our world. Every email or message from friends is good news. Every service given to us fills us with encouragement. So, I am learning to count my many blessings, even the small ones, and anticipate them coming!

We had some new neighbors move in who connected us with a different neuro-rehab possibility. It is much closer...saving us 40 minutes drive time a day, and we are considering the switch. Maybe include that in your "specific" prayers!

Also, tomorrow is a special day for us. It is Stephen's MTC date. I will never forget how excited he was to open his letter to read his call to Buenos Aires Norte. I'm not sure how the day will go, I'm hoping it will be a special day and we will feel comforted and hopeful in the future. We will keep busy with Aquatic Therapy plus some of Stephen's friends are coming over to make us dinner. Please remember him in your prayers tomorrow!

Friday, August 12, 2011

In the pool!

It looks like Friday is my day to post on the blog that last few weeks. That may have something to do with no homework on Fridays?? I have great intentions to post things more frequently, but stuff always gets in the way-like sleep. Unfortunately, the blog gets pushed down to the bottom of the list even though I realize this is the main news venue for most of you, and you are our support team. So, keep on checking regularly, I will try to post more often. Apparently some of you have a hard time making a comment. I'm not sure why that is...I've tried to go through all the settings and didn't find anything out of the ordinary. Let me know if you can't post a comment...genhome@cox.net.

We are "a-go" at 360 Therapy to get in the pool. We got a prescription and had our initial evaluation on Wednesday...with Brian Moss, a friend from the stake coincidentally. Today Stephen got in the water for the first time and really enjoyed it. The time went by too quickly. We are excited to go back twice a week and do more. Hopefully we can figure out a way to get in the pool in the backyard. So now we go for therapy 5 days a week. Tuesday Stephen had a great session at physical therapy. He stood in the standing frame for 37 minutes without the e-stim hooked up to his legs. He could of stood up longer, but we ran out of time. The e-stim keeps the muscles contracting and the blood flowing so he doesn't pass out. So, that was really impressive. Now we are working on a prescription to get our own standing frame at home. We'll see how that goes. We are continually concerned about the left shoulder sublexation and are working on kinesio taping for that and to relax the right shoulder and help keep his neck inline. His arms, shoulders, and back are a maze of tape.

We are in good spirits, and keeping the faith!

Friday, August 5, 2011

FINALLY...

We have a showerchair! What a game we had to play to get it, but a different provider and a different prescription and Voila! That simple good news was a ray of sunshine that brightened up a tough couple of days. We also got Stephen's actual wheelchair, a Permobil...the so-called newest, greatest in wheelchairs. We are still getting used to the changes and there are a few things we don't like as much...it's a few inches longer and taller for one. But, no complaining...a wheelchair's a wheelchair. We'll get used to it.

Thanks to all the friends from Stephen's BYU ward in the MTC sending the photos from the world map wall. They lined up and pointed to Buenos Aires Argentina, holding up the WE Love Stephen Merrill" shirt next to it. Also, thanks for the great letters! They were very encouraging and full of faith that Stephen will get better, which lifted our spirits.

P.S. Those of you who are friends of Stephen on facebook saw the photo in the standing frame. We'll get it put on the blog too...keep checking.

Also, let me know if you want some blue "Elder Stephen Merrill" wristbands. We have more!

Friday, July 29, 2011

A week of quiet days

...because the rest of the kids are at school! It was an adjustment for all of us to get back to school. This means trying to get to bed earlier, which we haven't figured out too well. Then everyone takes off at various times...starting with Rachel at 5:05 am to go to cross-country practice before zero hour (crazy) and then Nathan at 6:10 and the girls at 8:00. With the 2 am rotation thrown-in, it's a little exhausting. Stephen figured out this week that he no longer needs the sleeping medication at night...a good thing. We were hoping that meant he could come out of it earlier in the morning, but he still has a hard time waking up in the morning. I hate for him to sleep the day away, so I go in an start to wake him up by doing "range of motion" exercises on his legs. The whole process of exercises, getting dressed, and out of bed can take anywhere from 45 minutes to 1 hour. By the time we are ready for the day, it's time to go to rehab usually and then by the time we are home, so are the kids. I think we need to figure out a schedule?!

Our rehab schedule was a little light this week, because one of the therapists was gone. Stephen did improve on the standing frame Monday to 18 minutes. We will continue to work on that. Perhaps you have heard about the football player from Rutgers and saw a picture of him standing up for 40 minutes. That gives us something to work for! We finalized our version of the arm skateboard and it is working fabulous. The therapists asked if we would mind making some for other patients and we are thinking it would make a great eagle project....Nathan! So now we do all of those exercises at home and other things in the appointments. Today we did the vitaglide for the first time. That will help with the left scapula and shoulder, which are getting stronger and no longer need taping. So, we are continuing to strengthen the muscles Stephen has, and wait for new movement and sensation to come back. It is a lesson in patience and faith. We remain faithful, nothing doubting and hopeful. Continue to keep Stephen's recovery and healing in your prayers. He is still positive and keeps his sense of humor going, despite the hard moments and watching his friends leave for the MTC. I hope their experiences with Stephen the last few months will help them somehow on their missions.

Saturday, July 23, 2011

Therapy

So this week we got our e-stim (electronic neuromuscular stimulation) unit for home use and are figuring out how to work it. I tried it out on myself but putting it on my forearm and turning it up slowly until I could feel it...about a level 3...and my pointer finger started flexing in and out. There are multiple programs, strengths, durations, etc. and it is pretty sensitive to where you place the pads...one inch off and you get a completely different nerve and muscle movement. Anyway, we have used it for a variety of reasons, mainly to help the left shoulder sublexation for 30 minutes at a time. It is actually starting to feel better on it's own, without the kinesio taping, which just held the shoulder in place. (Why didn't we do this in inpatient therapy??) We also use it on his quads and calves for 30 minutes each time, to help with circulation. Stephen can't tell me when he feels it, so I just have to slowly crank it up and watch for muscles triggering. The thing is, if it is too painful it can cause autonomic dysreflexia, which anyone with an injury above T6 can get. We also use it to trigger stimulation during exercises. At therapy on Thursday, our PT used it to help Stephen stay up longer in the standing frame. She put it on his quads and calves on both legs, cranked it up to level 5 intensity. He was able to stay up for a lot longer before his blood pressure started to drop. Our session lasted one hour; fifteen minutes were spent setting up the e-stim, 10 minutes getting in the frame, 25 minutes going up and down in the frame, and then getting back in the chair for the last 10 minutes. So, half of the therapy time is spent just getting set up in the equipment...a little frustrating, but there was some progress. Stephen said it felt really good to be up. He was standing up in front of the mirror, so he could see himself. That was cool. We have replicated the "arm skateboard" from therapy, adjusting the model a few times to get it right. It is a arm rest with a handle for his hand on a board with four 360 degree caster wheels. He rolls it on a board, across his body, out to the side, up and back, etc. We can add weight as needed. Now we can get some good exercises done at home, as long as we find enough time during the day. We will be able to get a better schedule going this week when the other kids start school. Yeah!!!

Sunday, July 17, 2011

Special Day

We have been home for two weeks today! Stephen's goal was to go to temple as soon possible after he was released from the hospital and we were able to take him to the Mesa Temple yesterday, before they close for a two week break. It would be the last chance for him to go with some of his good friends before they leave on their missions, so we decided to hurry and made the arrangements just a few days beforehand. He had a rough day Friday with some chills and we were concerned he wouldn't feel well, but he was able to rest and felt fine early Saturday morning. He was asked to be there at 9am, which is no small task for us to get up and out of bed...but we are getting faster and more efficient with our morning routine. We had made special arrangements for him to wear his white temple clothes there. (For those who don't know, when we attend our temple everyone changes into white clothing.) That was a big relief, because we had been concerned about how to change his clothes in the wheelchair multiple times. Actually, when we explained Stephen's condition and they suggested we do that, I wished I had called earlier instead of stewing over it for a few weeks. There were a few other elders going to the temple for their first time also. I was able to sit by one of their moms and explain to her about Stephen's mission call and his accident and condition and how we are hoping and praying for a miracle for him to serve his mission. It is interesting to explain to others, friends or strangers, and to see their reactions. She was so sweet and kind to me the whole session. Stephen was able to enjoy his experience and was happy to be there. It was a renewing and strengthening experience and will continue to be so as we are able to go back. The temple in synopsis is about making and keeping promises, or covenants with God. How grateful we are to know that God will honor His promises and that he is aware of us.
Today Stephen went to a missionary farewell for two of his friends from high school/BYU roommates. They also happen to be twins. Most of his good friends are on their missions, waiting for their departure dates, or waiting for their mission calls to come. This will be the biggest challenge of them all, it will also be the motivating force to recover. We've got to figure out the best way for him to keep up with all of them and hear how they are doing. Let me know the best way for Stephen to keep up with any of you missionaries out there...from BYU or AZ.
Look for blue "Elder Stephen Merrill" wristbands to come in the mail this week. They are a light blue color...the same color as the Argentina flag. Wear them as a reminder to pray for Stephen to serve his mission. I'm trying to catch up with all the wristbands and thank yous for everything, so it's taken awhile...but here they come.

Thursday, July 14, 2011

Catching Up

Guess What??? Now that I'm home, I'm having a hard time finding a minute to catch everyone up. Home life is good, just very busy. The drive back and forth to rehab is getting longer...at least Stephen can enjoy his Ipad the whole way or take a little nap. The therapists have determined their initial goals and have given us more exercises to do at home. We are trying to strengthen the left shoulder, suffering from sublexation, and build up his upper body strength. Spencer is going to build a "arm skateboard" to do some exercises at home. Before Stephen can do a whole lot of upright vertical exercises, he needs to build up his blood pressure endurance. Basically, when he goes up in the standing frame, we go very slowly until his blood pressure is so low and everything is going fuzzy. We can do some estim stimulation at home, as soon as we get our machine and are working on a lift to get into the pool. We have seen some great articles, websites, etc. about therapy techniques, especially at the Neuroworx in Utah. They sound really encouraging and we are looking into more options. For now, we are working on some basic strength and endurance training.

We are still waiting for the shower chair decision from the almighty insurance company. It's been an education in the insurance industry, most of which has been good for us. We've been lucky to have coverage on everything. So, until then it's a shower in the Adirondack chair...very uncomfortable.

Today is 3 months. We are in good spirits, even if we are a little tired. I've decided that when the kids go back to school in 1 1/2 weeks, it will be a lot easier to get into a schedule and have help during the week. There is only so much others can do, but maybe I can find something for all of you who always offer.

Thursday, July 7, 2011

TSHIRTS

I just got an email from Ty's mom (one of Stephen's friends/BYU roommate). Thought I would pass it along.

"Hey all you UTAH folks - Want a Stephen Merrill T-shirt but can't afford the shipping? I'll be in Utah from July 13-20 and will happily deliver your T-shirt. I can meet you somewhere in SLC or Utah Valley. Call or text me - LaDawn Resendez @ 623-363-2536."

Thanks LaDawn! It was fun to see Ty and friends over today. Thanks for the visit guys!

No more 6 am blood draws!

We've been home for 4 nights and things are going well. Stephen is sleeping well in his bed, padded with a memory foam pad plus an inflatable pressure relief waffle pad. It is the most comfortable bed I've ever laid in. It helps that no one comes in, turns on the light and draws blood every morning at insane hours. Spencer and I are turning him every 4 hours and his skin is doing well. Maybe once or twice he'll ask for a drink (we've got a baby monitor set up in our rooms), so we go up and down the stairs a couple times during the night. We are definitely living life on a schedule for meds, etc. We have started checking in at a coumadin center/dr. office every other day for his blood INR levels. Plus, we went for an initial evaluation at the physical therapist yesterday. It will take us a few weeks to get on their regular schedule with back to back appointments for PT and OT. So, we will have to take whatever openings they have available until then, which means we might be back and forth every day for the next few weeks at various times...starting Monday at 9. That didn't make me too happy. Who knows, if that doesn't improve we might have to make another therapy choice. For us to get there by 9 is no small deal. Getting Stephen up, dressed, out of bed, breakfast and on the road still takes me awhile. Hopefully I will get faster, I already am better at driving that wheelchair. Our biggest obstacle right now is still that showerchair. We are waiting for a loaner even, until the insurance can get their act together. Don't laugh too hard, but we gave him a shower in a plastic Adirondack chair yesterday... but that took way too much effort and was not comfortable. So, if anything...pray for a shower chair!!

Saturday, July 2, 2011

Last Day

We enjoyed a "pass" today and took the first ride in our "new" rampvan, which arrived Friday from Florida. The casual observer might not notice the new van...another white Toyota Sienna, a year newer, but the same amount of miles. This one is specially modified with a 10" dropped floor, and an electrical fold out ramp on the side for Stephen to drive up. There are floor clamps that attach to all four wheels. It is a great van, but driving will be an adjustment. Stephen feels every bump and any hard braking, so we will be driving rather cautiously. So, if anyone needs a "new" van...let us know! The pass was to the movies, X-men, to be exact. It was fun to be on our own and do something normal. We could have been gone all day, until 9 pm, but Stephen was tired and just wanted to go back and take a nap. So much for adventure! That was fine because the other kids flew back today and we had to go pick them up. We brought them by the hospital for one last visit and they helped take down all the posters, cards, and packed them up. The room is now bare walls again. One more night apart and tomorrow we will all be back together.

The last few days have been a rush of preparations; filling prescriptions, gathering equipment, organizing the house, licensing the van, training, etc. We are as ready as we will ever be. Stephen has confidence that we will be fine, so I guess we will be. Of course this is the next step, and we have been waiting for this day for a long time, but now that it is here I have a mixed wave of emotions. There will be a period of adjustment and I'm sure it will take awhile to fall into a schedule and figure things out. We will get started next week with a new primary care physician and outpatient therapy. Hopefully, we will find ways to fill Stephen's days and keep working on getting better. So, farewell St. Joseph's Rehab! I won't miss you couch, but I'll miss the great nurses, techs, and therapists who have taken such good care of us. Home, here we come!

Thanks for all your fasting and prayers tomorrow. I know it will give us the extra strength beyond our own.

Thursday, June 30, 2011

A slight delay

Well, Stephen won't be coming today, but hopefully Saturday or Sunday. Not that we are too surprised, but a little bummed. Basically, we need to make sure that his INR blood levels are therapeutic. He was taken off the coumadin for his procedure last week, and they are adjusting his levels according to the daily INR blood draws. That can be monitored from an outpatient clinic, but since it is a 3 day holiday weekend, we need to be sure his levels are stable before we go home. Today would have been a rush anyway...the van is still in route from Florida and should get here tonight or tomorrow. We still have a few things to finish up at the house too. I'm basically "nesting" at home, getting things just right before he comes home. The bathroom/door changes are looking great. The equipment has been delivered, except for the shower chair...which still needs to be worked out with insurance. There are shower chairs and then there are SHOWER CHAIRS. Apparently, we need the cadillac of shower chairs. It will work out. So, the extra days will get a chance to be completely ready. Plus, it will take us awhile to move out of that room...with all the stuff we have in there!

So, last chance to visit Stephen at the hospital!!!

Wednesday, June 29, 2011

Attention Friends and Family

This is Stephen's Aunt Robin. I helped set up this blog, but it has been a while since I've written as the primary author. I wanted to repeat something I left a couple of days ago as a comment:

To all of Stephen's friends and family: I purpose that on Fast Sunday in July (3rd), we have another intense fast for Stephen. I remember the high level of faith and prayers that seemed to be non-stop when the accident happened. I know that for most of us, those prayers have continued and our faith is strong in the blessings that Stephen has received. I know in my own home, Stephen is mentioned in every prayer! However, I would like to encourage everyone to check their faith levels on his behalf. He will be going home soon, but we also need to bump those nerves of his another step closer to recovery. Let's double or triple the intensity of our prayers. On July 3rd, everyone fast that the feeling and mobility will increase in his legs. Spend extra time in the scriptures and in prayer on his behalf. In preparation for Fast Sunday, please put his name in the temple closest to you. I remember in a blessing that Stephen was given, it mentioned the great power and faith of those petitioning Heavenly Father from both sides of the veil. Let's put everything we have in our hearts into helping Stephen in this healing process.

I remember hearing a story once from Scott Anderson. It was about a girl who was in an accident and through the faith of her friends and family, she eventually healed to a full recovery. This is our story... This is for you Stephen. We love you!

Monday, June 27, 2011

Happy Birthday

Thanks everyone for your awesome birthday wishes, cards, and gifts. We are so blessed with great friends and family. Thanks for those who were able to come and visit at the hospital. It is nice for others to visit and see our home-away-from-home (but NOT for long!). We are counting down the days and trying to finish gathering our supplies and finish the house. Our van is on its way from Florida, hopefully it will be here on time. Everyone who was at the hospital was able to get there own "ELDER STEPHEN MERRILL" wristbands, the brainchild of Todd Shell. There are LOTS available for anyone, we'll start sending them in the mail to family and friends. Send us your address in the "comments" and how many you want...no limits. They will be a reminder of Stephen and help to remind us to "keep the faith". Thanks Todd for sending them to Argentina as well...I think that will be awesome for all the missionaries to wear them.

Thanks Robin for your comment yesterday. That would be awesome to have our faith united in prayers and fasting. Consider it a birthday gift to me (next Sunday's my birthday). Let's plan on it!

Saturday, June 25, 2011

Birthday Party

This Monday is Stephen's Birthday. For anyone who wants one last chance to visit in the hospital, come for cake from 6-7ish at the Barrow Neuro Rehab at St. Joseph's Hospital, building 240 on the 2nd floor in the main gym. Let me know if you can come and need directions. Thanks! Genny 480-603-7809.

Friday, June 24, 2011

Friday Report...back to Rehab

Well, after waiting around all day on Thursday without food or water, they finally got around to coming to get us at 3:30. Luckily Stephen was able to sleep most of the day, especially after very little sleep the night before. And of course, as I had joked about earlier, they came at the worse possible time...the NBA draft!! How dare they??? I guess they had some trauma patients earlier in the day and couldn't get to it until then. He had the TPA dripping through the cathether all day, which means they were unable to move that leg much for the whole 2 days. So, they put him prone again, this time his head was propped a little more comfortably than the first time. So, for the fourth day in a row we waited in the radiology waiting room....this time was a little longer than before. I watched Jimmer get the #10 pick and cringed because Stephen had been looking forward to this for weeks. It was just cruel. Then Spencer showed up with the kids and we ate dinner in the cafeteria and came back...and still waited. Finally the doctor came back and said he worked on it as long as he could with a variety of methods, which is why it took so long. They got out as much as they could, but some of it had been there so long it was too hardened and they were unable to get it all. The clots were very extensive, up past the hip and into the abdominal area. We were disappointed, after trying for weeks to get the doctors to permit him to go prone and then another week to get them to coordinate it. Spencer's frustration was really mounting when they made him spend another night in the ICU because it was too late for admissions to readmit him to the rehab...even though our room is there and we've been for months. Because of paperwork, he stayed another night and didn't get readmitted until 3:30 Friday afternoon. So, four days spent on the thrombolysis. I don't think our rehab doctor anticipated this at all. They were expected a few hours and he would be back. I'm thinking to myself, if blood clots are to be expected as standard conditions, haven't they experienced this before?? You can probably hear my frustration...good thing Spencer isn't typing this. I'm wondering how many doctors he spoke with today. If he could he'd probably check him out and take him home, we are losing confidence in the "best in the west".

So, I am gone for a few days delivering the rest of the kids to Kentucky to a Croshaw Family Reunion. Spencer is with Stephen at the hospital for the weekend...so go and visit if you are in town. Also, for Stephen's birthday Monday, we will have cake from 6-7ish in the main gym at the neurorehab. Text me if you want to come! 480-603-7809. Thanks everyone!

Wednesday, June 22, 2011

Another day in the ICU

Stephen just came out from the thrombolysis, step 2. They took him pretty early in the day and spent an hour or so "roto-rooting" and suctioning the blood clot out. They cleared out the clot in the femur, but decided to keep the cathether in for another day and increase the medicine to get the clot up in the pelvis and hip area. It stretches up to a few inches below the filter. So, back to ICU for the rest of the day. YUCK! At least Wimbledon is on, so that will pass some time. After that we can hopefully take a nap and catch up on some sleep that escaped us last night. Even though this is a hiccup in the plan, I am so grateful that we were finally able to get this done. The clot was more extensive than we realized and definately needs to come out. Please pray that the rest of the clot will cooperate tomorrow, be softened and thoroughly removed.

Tuesday, June 21, 2011

Be Careful what you ask for

So, we have been pursuing a thrombolysis on Stephen's blood clot for a few weeks now and were excited last night when the order was written. So, today we heading back to radiology and met Dr Kay, who explained the procedure. The first step is to insert a cathether into the leg from behind the knee up and down the leg. The catheter has holes that feed the TPA medication directly to the clot locally. Anyhow, it has to basically sit there for a day (or two?) to break up the clot before they can go back in and break it up and suction it out. Those, of course, are laymen's terms. The procedure went well, no problems or complications. Stephen had to be pronated, which took a little bit of doing to completely turn him over on his stomach. Anyhow, we didn't quite anticipate the waiting part, which incidentally takes place in ICU. So, we have spent the rest of the day in ICU, this time the surgical ICU...which at least has private rooms compared to the Heart and lung ICU. We are experts at this now, but this ICU has it's own nuisances- it has a guard at the door that has to check with the nurses station everytime I want to come in. I laugh now when I think about how many people we snuck in Stephen's room in the Provo ICU. No way, No how, would that happen here. So, we are pretty bored in the ICU, cause Stephen feels fine...no respiratory problems or anything. I think the doctors are pretty bored too, because they are crossing every t and dotting every i, meaning ordering every test imagineable...ekgs, chest xrays, blood draw, ultrasound on his abdominal because his liver levels are a little elevated (they are always a little elevated), respiratory treatments, on and on. Leave us alone already! So, because they want to do the ultrasound on the abdomen, Stephen can't eat anything...and they are late with the ultrasound. He's got some chicken cordon bleu waiting for him....even if it's past 10 pm. Anyway, at least there's a good movie on TV. A trip to the ICU reminds us that we could always be worse off, there are so many families in the waiting room with those looks of shock that are so familiar to me. My heart goes out to them. I hope and pray that their loved ones will be healed. So, good night from the ICU!

Monday, June 20, 2011

We set a new record!

Thanks to some of Stephen's great friends we set a new record today...for the largest group of people escorting a "transport" to/from radiology. We had another ultrasound scheduled today for 8pm, but of course they showed up around 5pm, completely off schedule and as luck would have it, the same time 12 friends from high school (plus Kassandra from BYU) came to visit. So...they all tagged along for the hike to radiology. Stephen was on a gurney, and while we were waiting in the "parking bay" in radiology, he was completely surrounded by these great kids. The "transporter lady" said she's never had a group that big before and we couldn't all fit in the same elevator. So, well done guys!!! Thanks for coming and cheering us up! Frankly, hospital life is getting a little old and any visits are a welcome distraction. The amazing news it that after the ultrasound tonight, we got word that the doctor sent a consent form to undergo the thromolysis. We are flabbergasted! That only took FOREVER. So, Stephen will have to be weaned off the blood thinners first, which will take a few days. We are guessing that it will be the end of the week, it just better not interfere with the movie outing scheduled for Thursday afternoon or the NBA/Jimmer draft on Thursday. The irony would kill us!

We are busy getting things ready for Stephen to come home. Remodeling has started on the bathroom, thanks to some good friends and grandpa. The living room drapes are being lined with blackout fabric and the windows are being darkened to cool off the room. Yes, Stephen is moving into the living room and it will work out really well as far as space, but it has always been the hottest room in the house, so that will help out alot. There are supplies to be found, and equipment to be delivered, but I think everything will be ready.

We found a super talk given by Elder Dallin H. Oaks in May 2000 at a CES fireside, entitled Miracles. I would recommend anyone interested going to LDS.org and finding it. I will just share a few thoughts. Elder Neal A Maxwell called this the "anti-miracle-mindset". "The rejection of miracles in the last days was prophesied. The prophet Nephi foretold that the gentiles would "put down the power and miracles of God, and preach up unto themselves their own wisdom and their own learning, that they may get gain." (2 Nephi 26:20). He also prophesied that churches would be built up in which persons would tach with their learning, deny the power of god, and tell the people that if someone should "say there is a miracle wrought by the hand of the Lord, believe it not; for this day he is not a God of miracles" (2 Nephi 28:6). Some people reject the possibility of miracles because they have not experienced them or cannot understand them." I have witnessed miracles before and I think all of us have, it we can recognize them. I know that the day of miracles has not ceased. Later in this article Elder Oaks tells the story of a man trapped under a log by himself up a canyon in the winter and how he thought he would die, but later woke up and found himself sitting up on his wagon, with the logs loaded up and his oxen hitched up riding down the canyon. The story was about Marriner Wood Merrill, Stephen's great-great-great grandfather. We continue to hope and pray for miracles to be manifest in Stephen's life, according to God's time and will.

Now...one more item of business. Stephen's birthday is a week from today, June 27th. He will be 19. Anyone who would like to sent a birthday message or card...our address is 872 E. Taurus Pl. Chandler AZ 85249. Our email is genhome@cox.net. We will have cake at the hospital that night, and let those of you in town know what time!

Thanks everyone for your support. We are blessed to have so many great friends and lots of family.

Thursday, June 16, 2011

Discharge Date

Today was another Thursday, marking nine weeks. In rounds today, Stephen's discharge was set for June 30th...in two weeks from today. That seems like just around the corner, and now I'm overwhelmed with everything to prepare to come home. Of course, considering that it is taking all week to set a date for the thrombolysis, who knows if the 30th will stay put in place?! Stephen's leg and foot are continually more swollen with the blood clot. Tomorrow we should nail down the procedure. Augh! It will be difficult to be the nurse/caregiver at home, but it will be easier to all be together at home.

When he is released, we will continue rehab three days a week at St. Joes or Healthsouth. That is one of many decisions to make in the next few weeks. At times the stress of it all can be overwhelming, especially when we can only talk about things over the phone, texts, or emails. I know that answers will come and solutions will be apparent. The greater question we face everyday, "When is it thy will for Stephen to be healed?", is something that we cannot decide or have any control over, so we put forth our efforts in doing what we can and having faith that Heavenly Father is watching over Stephen. Please continue to keep us in your prayers and exercise your faith in his behalf.

Tuesday, June 14, 2011

Stephen loves skittles

Well, medicine is definately an art and not a science-quoting Kristen. We have a conglomerate of doctors...the neurosurgeon, pulmonologist, radiologist, internist, and neurorehab doctor trying to communicate with each other, first of all, and then decide about this thrombolysis treatment for the blood clot on his leg. The ultrasound last Friday showed that it was still extensive and it is getting more swollen. His INR number has been high the last three days as well (for those of you familiar with blood clot medicine and treatments). I would like to do it before we go home, so hopefully it will dissipate on its own, but that will take a long time and we don't want it to get hardened in the vein. So, they have decided to do another ultrasound the end of next week and evaluate the surgery then. Each doctor has a different input and approach, just like each artist has a different brush stroke. Thus, the reason for 2nd, 3rd, even 3th opinions.

Stephen was feeling good today, although he was a little tired. He took a late nap, which he hasn't done for awhile. The family all came up and brought skittle bingo, so we gorged ourselves on skittles...yum. After they left, I thought he would have a hard time falling asleep, but he told me he was going to say his prayers and the next thing I know he's breathing deeply and lights out. That means me too. They are trying to up Stephen's skin tolerance slowly, but increasing the time between his rotations. So we are up to every 3 hours from every 2 hours. As long as there is no skin breakdown, we can move up to 3 1/2 or 4 hours. That is where we hope to be when he comes home, because we will be the ones doing it...can't bring the nurses home with us! So that means he gets less interrupted sleep, much better for all of us.

D&C 84:88..."And whoso receiveth you, there I will be also, for I will go before your face. I will be on your right hand and on your left, and my Spirit shall be in your hearts, and mine angels round about you, to bear you up." Stephen's handwritten note on the side of the margin next to this scripture..."Got my back. Not alone." I continually pray that we will be blessed with administering angels, and I know that we are.

Sunday, June 12, 2011

How Firm a Foundation

Today in Sacrament meeting, Bro. Marshall played a piano number and encouraged us to follow along in the hymn book. As I read along with the words from "How Firm a Foundation" I was brought to tears by the lyrics of these verses. It seems to be that the words of the hymns mean more to me than ever before and touch my heart more than any of the spoken words in the talks. I thought I'd share the words below...


In ev’ry condition—in sickness, in health,
In poverty’s vale or abounding in wealth,
At home or abroad, on the land or the sea—
As thy days may demand, as thy days may demand,
As thy days may demand, so thy succor shall be.

3. Fear not, I am with thee; oh, be not dismayed,
For I am thy God and will still give thee aid.
I’ll strengthen thee, help thee, and cause thee to stand,
Upheld by my righteous, upheld by my righteous,
Upheld by my righteous, omnipotent hand.

4. When through the deep waters I call thee to go,
The rivers of sorrow shall not thee o’erflow,
For I will be with thee, thy troubles to bless,
And sanctify to thee, and sanctify to thee,
And sanctify to thee thy deepest distress.

5. When through fiery trials thy pathway shall lie,
My grace, all sufficient, shall be thy supply.
The flame shall not hurt thee; I only design
Thy dross to consume, thy dross to consume,
Thy dross to consume and thy gold to refine.

Perfect, right? We had a good day and Stephen is feeling well. Let's hope for a good week!

Feeling Better!

By Saturday Stephen was feeling much better from the UTI infection. Yeah! Friday he was still a little nauseous and couldn't eat much and was a little tired in his therapy sessions. The PT thought it was time to get Stephen standing up for the first time, which we have been waiting to do for awhile. From a sitting position on the mat, they put a sling underneath him and attach it to a standing brace. His feet go on the machine and someone is bracing him from behind and on the two sides. Then they crank up on the sling and it pulls him up to standing. His knees are held in place on the machine and his elbows rest on a little table top. The first time he stood there for a few seconds and started getting dizzy, so they lowered him down and waited for a few minutes to try it again. The second time he lasted longer. We will continue to work on it. It's really good for him to be upright for circulation, muscles, bones, everything. The odd thing was his blood pressure went up as he did it, not down-like most people. Maybe because he was still a little sick. Anyhow, it was nice to look up at him (physically speaking-because we are all looking up to him) for the first time in awhile. It was probably nice for him to look at people from his regular height, 6'1". Actually, I decided to bring a tape measure and see how tall he is, because I think he might have grown some more since I saw him last at Christmas. He grew an inch his first semester at school, who knows maybe he grew another inch the second semester?! Friday night they finally got around to another ultrasound on his leg to check on the blood clot and evaluate the necessity of putting him prone to do the thrombolysis (cleaning out the clot).

Saturday Stephen felt really great and had a super visit from 10 friends. They all went down to the cafeteria, pushed some tables together and had a pizza party! Stephen ate lots of pizza even. Thanks guys for coming...I wish I had been there to see it. He had more friends show up Saturday evening, the Johnsons and the Remers. Thanks for coming everyone, it was great day! It was a great day for us to go to the temple and attend the wedding of Shirley and Darrin. Congratulations to them!

Job 23:10..."But he knoweth the way that I take: when he hath tried me, I shall come forth as gold. My foot hath held his stpes, his way have i kept, and not declined. Neither have I gone back from the commandment of his lips: I have esteemed the words of his mouth more than my necessary food...for he performeth the thing that is appointed for me; and many such things are with him."

Have a great Sunday!

Thursday, June 9, 2011

June 9th

Elder Orson F. Whitney said: “No pain that we suffer, no trial that we experience is wasted. … All that we suffer and all that we endure, especially when we endure it patiently, builds up our characters, purifies our hearts, expands our souls, and makes us more tender and charitable. … It is through sorrow and suffering, toil and tribulation, that we gain the education that we come here to acquire.” 5

We received more education today, as Stephen suffered a miserable day of fevers, chills, and nausea. He tried his best to do therapy, but couldn't do any afternoon work because he was shaking uncontrollably with chills, which caused his shoulder to hurt even more. They diagnosed a UTI and started antibiotics, which kicked in around dinnertime, so he could finally eat something. The worst part is that with this one infection, he is taking more pain medications, nausea meds, valium, and antibiotics. More meds usually mean he is more tired and has less energy. Anyway, they caught the infection early and it should clear up quickly. They had planned an ultrasound of the bloodclot, but he was in no shape to be transported to radiology this afternoon and that will be postponed until tomorrow. He has had chills many times in the past 8 weeks. We all know how that feels, but usually when we have them we can curl up and move ourselves to work them out. He just has to lay there and try to direct us how to help him the best, by putting on blankets, heating pads, cooling blankets, etc. He does a good job giving directions and asking for help with everything from putting on chapstick, getting a drink, to scratching his nose, but it would just be so much easier to do everything for himself. So, today was an endurance test and basically tomorrow has to be better.

One interesting thing from therapy...since he was miserable, his OT came in his room with some of the electrical current technology and attached the patches to his triceps to get his right arm to extend out from the elbow. As soon as he turned it on, his fingers on the right hand began to extend out straight completely from a relaxed fist. They did it over and over with every electric impulse. The OT was baffled and couldn't figure it out. He said he's never seen that before. Finger nerves are on the forearms, not on the triceps. They shouldn't have been moving. It was just very odd. It might be because he was had chills and was shaking so much, but who knows?

Wednesday, June 8, 2011

A trip home

Something is different about Stephen today! I walked in this morning and the first thing I noticed was a long, skinny, NAKED neck! Stephen said it felt great. We finally got the orders written up from the neurosurgeon but are still waiting about pronation. Anyway, he did well with therapy without the brace and can put it on as needed. That isn't even our biggest news of the today. It is kinda a shame that we had to use up two big events on one days. I wish we could have spread them out over two days...oh well. So we loaded up in the big BUMPY van with our therapists and their tape measures and drove home. Grandma and the girls were waiting for us anxiously. It was awesome to be home and just felt so wonderful to get out of the hospital. So we tried out ramps, doorways, tables, and equipment. We will have to make some changes and will try to make them the least invasive as possible. Basically, everything will work out on the main floor for Stephen to get around, with some "minor" remodeling. We had a friend and contractor meet us there to give advice and take some notes. Now the therapists write up a report for the insurance company to verify medical necessity for equipment and try to get them to cover as much as possible. The visit went really well.

The rest of the afternoon was a bummer after that, especially because his left scapula was in a lot of pain after the bumpy van ride. Plus he battle some nausea, chills and fever the rest of the afternoon and evening. That seems to be a difficult balance to find sometimes. We use the cooling/heating blanket to help adjust his body temp, but it can be difficult to know if it is just more than a regular tempurature regulation problem and not an infection and a valid fever. So we hope he can get a good sleep. We enjoyed a quiet night at the hospital with Grandma coming up to visit. We are glad she can be here for a few weeks. Spencer was able to give him a blessing tonight. He hadn't had one for a while, and seemed a little anxious about being able to sleep when he wasn't feeling well. It was a great blessing to here the reassurance again that God's purposes will be fulfuilled and will not be frustrated.

Tuesday, June 7, 2011

June 6th

We survived another weekend at the hospital! With no therapy scheduled, weekends have the potential to be long and lonely. There are some patients here who really dread Saturday and Sunday because they have few, if any, visitors and nothing to do. We are grateful for cousin Dan Johnson coming Saturday morning so Spencer and I could meet at the temple. He came early enough that Stephen slept for a lot of it, since Saturday does mean a chance to sleep in. We are also thankful for all of Stephen’s friends who came on Saturday, Sunday, and today. You guys are the best! Your visits are critical to surviving the hospital. Thanks for lifting his spirits and helping him laugh. It isn’t easy to keep the Sabbath when you’re in the hospital and can’t attend church, even though we do get the sacrament brought to us by members of our ward. Stephen and Spencer have done their best to study the lessons and read on their own, and even though boredom could be used as a good excuse to watch tv, Stephen has kept to our family tradition of no tv on Sunday. This Sunday we were able to ordain Nathan to the office of a teacher in the Aaronic priesthood, using a conference room down the hall. That will always be a memory for Nathan, having Stephen in his wheelchair in the circle with his hand on his head. Plus, the day ended off on a high when Bishop Brockbank called with some great encouragement to keep the faith!

We haven’t seen a lot of noticeable improvement recently in his movement and sensation. His left shoulder is usually very sore because it is weaker, and now it is taped from the shoulder down the arm. His right arm continues to be the strong side and is doing well. We haven’t yet taken off the neck brace but anticipate that happening this week. We need to strengthen up his neck muscles, so he will be prepared to go home without the brace. Today we visited the outpatient rehab here at St. Joes and were impressed with the equipment there (why don’t they have the same stuff for the inpatient rehab??). We need to check out our other option, HealthSouth in Mesa or Scottsdale, to decide where we will go after we are discharged. That is just one of many decisions we need to make before discharge, so hopefully that will keep us busy and distracted until then. It’s exciting to think about going home, but also scary and overwhelming. Please keep us in your prayers…that we will be able to prepare all the arrangements for Stephen to come home. Of course we hope that he would improve steadily until then, so we would need less extensive equipment and remodeling , but those things are out of our hands and we need to do all we can for Stephen in his present condition.

Friday, June 3, 2011

June 3

According to Stephen today is day 50 (and I thought we weren't counting). Today we got the go ahead to take off the collar, but are still waiting for the neurosurgeon to visit and show us the xrays. We also need the go ahead for Stephen to go in pronation, to lay on his stomach. Hopefully that will be soon as we continue to pray for progress and to waith upon the Lord for the promised blessings. Spencer shared two scriptures with me the other day that I felt was applicable as an illustration of how the Lord can fulfill His promises and restore all things.

Joshua 21:43-45
"And the Lord gave unto Israel all that land which he sware to give unto their fathers; and they possessed it, and dwelt therein. And the Lord gave them rest round about, according to all that he sware unto their fathers; and there stood not a man of all their enemies before them; the Lord delivered all their enemised into their hand. There failed not ought of any good thing which the Lord had spoken unto the house of Israel; all came to pass."

1 Samuel 30:19

verse 19 "And there was nothing lacking to them, neither small nor great, neither sons nor daughter, neither spoil, no any thing that they had taken to them: David recovered all."

Wednesday, June 1, 2011

June 1st

Happy Birthday Sarah! Stephen’s littlest sister Sarah turned 8 today and we celebrated at the hospital with cake and presents. She is looking forward to getting baptized as soon as Stephen can get home from the hospital. We also celebrated the last day of school, no more homework…yes!!! Now what do we do all day…oh no!!! Summer will be interesting this year for sure.
Well, we had a little bit of excitement the last two days, nothing too exciting, just a little different from the normal routine. Yesterday, Stephen was given 6 units of plasma in preparation for a procedure today to remove his vena cava filter. The plasma comes one bag at a time from the freezer, nice and cold. Tuesday morning they started the IV pretty early, anticipating it would take all day to do the transfusions. By coincidence and lack of communication, we also had a home visit scheduled for Tuesday. We were supposed to go home in the van with our two therapists and evaluate the changes to make for Stephen to come home. It would have been the first time Stephen has been home since Christmas and we were looking forward to it, even if it was only going to be for an hour. Anyway, we were going to try to squeeze the trip in at 12, in between transfusions. The first bag went in slowly at first, and then it warmed up and the second half went in quick. The second bag went in in 20 minutes, a very fast pace. So the nurses figured if he started the third bag at 11, we would have plenty of time to leave at 12. Well, the third bag dripped at a snail pace and took 2 ½ hours! So, the trip home was postponed until next week. Amazingly, bags 4,5,and 6 all went in at a quick pace. I guess we weren’t supposed to go home on Tuesday. Good thing I hadn’t planned a big welcome home. Stephen wasn’t too disappointed and he realized that the plasma transfusions needed to come first. If we had gone home, we wouldn’t have finished them until very late. Things just work out for the best.
This morning was the vena cava filter removal. It was inserted the day after the accident and would be a permanent fixture if we didn’t remove it by 8 weeks. It is lodged under the kidney to catch any blood clots traveling up from the legs. Since Stephen still has some blood clots and is at risk of more, they took out the one and replaced it with a different model that can be removed two or more years later. Stephen was semi-awake during the procedure and did really well. We finished around 11 in the morning and he was worried about missing PT. When they told him he has 2 hours of bedrest, he was pretty bummed but quickly nodded off to sleep. We got in some therapy in the afternoon and everything is back to “normal”.
I’ve realized that part of our responsibility while we are here is to share with others the joy and peace of the gospel, and maybe help them with their difficulties and bring others to Christ. This is including our therapists, nurses, techs, doctors, and other patients. We get to know these people pretty well, some of them too well, and we are given lots of opportunities to open our mouths and let them know what we believe and how we have faith in the atonement of Jesus Christ and trust in His will and plan for us. I think that will by one goal for the rest of our time here. I know that hospital staff sees lots of patients, and some are memorable and others forgetful. Some of them have emotional responses to certain patients. I hope we can make some kind of positive impact on their lives, in appreciation almost for their help and service for us.

Sunday, May 29, 2011

May 29, Sunday

I've realized it's hard to get the word out to everyone about the blog. I apologize to those who are just finding out. The purpose was to keep friends and family up-to-date "en mass" without having to individually keep in touch with everyone, but that doesn't work if people don't know about it. So, if you follow the blog and know other friends of Stephen, maybe mention it...just in case they would be interested. Some days I struggle to find anything of interest, so I might have to stretch for something to say worth your time. If I imagine myself far away and not in the hospital everyday, I guess there are a million details to cover, but now those things seem as common place as everyday routines. I'll try to share more of them with you.

Because it is a three day weekend, Spencer gets to spend another night and go to rehab with Stephen tomorrow. That means I'm in the real world at home. I should mention Grandma Penny went home today. She has been here for a month and kept down the fort with laundry, shopping, school work, errands, etc. We are grateful for all the help. We have a couple of days on our own before Grandma Croshaw comes, so we'll see how we do on our own. I ran a few errands on Saturday to Walmart and the library, and I have to admit it's odd to be out among people doing regular things. I guess time as stopped for me and things are all out of place, but life still goes on for everyone else as if nothing happened. I wonder how many other people are walking around trying to keep up with regular stuff when things are anything but regular, and they might have a heavy load of care weighing them down. All the more reason to smile and be kind to strangers in the elevator, in the grocery line, or on the street. That being said, I'm never quite sure what to say when I'm asked how we are doing. I love to know that people are concerned and we are in their prayers, because it would be so much harder to do this without the support of so many of you. I try my best to let everyone know that we are doing well, truly we are doing well. Things are difficult, yes, but we are doing well under the circumstances. Sometimes I think I may not express myself convincingly, but that's just because I might struggle to find the right words at that moment. Sometimes I just can't go into all the details and just need a hug and a smile, and other times I might need to talk it out. I worry that I don't give everyone enough time, please understand.

Well, here's the real news about Stephen. This is about him after all, right? On Friday we loaded up in the rehab bus for a lunch outing with two other patients. We went to a old-school sandwich place in Phoenix. It looked like it came straight from Miami. It was fun for Stephen to drive around and get out. It was also pretty tiring, so he slept for a long time Friday afternoon and then for some reason on Friday night, he woke up in the middle of the night and couldn't get back to sleep, causing a little anxiety. So Spence got out the laptop and starting playing old broadcasts of BYU basketball games around 3 or 4 in the morning. I would of never thought of that...good going Spence. Saturday night he slept fine for Mark, so hopefully that was just a one time thing. Saturday he left the hospital with Treyson, Jake, and Ty to the pizza place across the street, (ssshhh! against hospital policy) and Sunday night we had a fun visit with Mark and Alexis and Annie from Idaho, plus Megan and Layne Varney. He also got to talk to Pres. Gulbrandsen in Argentine. His spirits were good and we had a few good laughs. He is just awesome and I am overwhelmed by how much I love him and all my family.

Thursday, May 26, 2011

May 26th, Thursday

Stephen is really disappointed right now...we just watched the Bulls lose it in the final minutes of the game, which is especially discouraging after the Thunder did the same thing last night. Not that Stephen is a big fan of Chicago or OKC, but he was looking forward to as much basketball on TV as possible. Bummer! At least there is the French Open to look forward to, but that is only on in the morning and early afternoon, so we have to squeeze it in at breakfast and in between therapies. Since he isn’t as tired at lunch time he has managed to keep his eyes open for a little tennis then too. Plus, the pulmonologist reduced his respiratory treatments to twice a day, so he has an extra half hour in the morning! So he has a pleasant distraction to look forward to every morning for awhile. Today the neurosurgeon came by and decided to order a few more xrays with the neck extended back and tuck forward, so we went back to radiology just when we thought we were going to bed. It’s a good thing, but doesn’t anyone in the hospital believe in letting patients get rest? We’ll be interested to see the results.
Our OT explained today that he thinks Stephen will have more consistent, stronger movement if he had more sensation because if he could feel his triceps, for example, it would be easier to “find them” in the exercises. That makes sense. As we learn more about spinal cord injuries, the more complicated and challenging it is. I am reminded that we need to pray as if It all depended on the Lord and act as if it all depended on us. That means we need to be involved with the family training and planning, not knowing the Lord’s plans and purposes but having faith in Him and letting Him know our greatest desires. We need to make we ask regularly for Stephen to be healed, have movement and sensation in his hands, chest, and legs and that he would be able to fulfill his mission, according to His will. I know the Lord knows my heart and mind without needing to pray, but prayer is the way to humble ourselves and worship Him as we commune reverently and then receive answers from Him. Please continue to include Stephen in your prayers.

Tuesday, May 24, 2011

May 23, Monday

It's Monday and the beginning of another week. We try our best not to count the days backward or forwards, because it makes time go by slower. This has only been 5 1/2 weeks from the beginning, a relatively short period of time compared to what we have ahead of us. However, we have lots of dates to look forward to, which give us motivation and a goal to work toward every day. There is the anticipated time to go home, 5 to 7 weeks, the best guess of the doctors and therapists. We still have to decide on a date for Sarah's baptism and Stephen's temple trip, which will be probably be around the same time. Of course we also have Stephen's mission report date to work toward. We have hope and faith in a recovery in a "miraculous time" and look foward to that happening. Everything else, we will just take in stride as we are faced with decisions, such as summer plans, home modifications, and equipment purchases. We will do what's necessary for the moment, those things will work out for the best.

Stephen had an xray today to look at the vertbrae and help decide when to take off the neck brace even for short periods of time to strengthen the neck. I'm getting used to seeing it on and it will be odd to see him without it. That was a different break in the day, kinda of big outing for the day...very exciting. It meant that he didn't get in his regular "naptime", but actually it seems like he needs less sleep and has more energy. That's an improvement. He is using less energy for breathing and coughing and has more energy to use for actual therapy and exercises. Now that he is doing so much better, we are starting to pray more for movement and sensation to improve and strengthen. Those who have seen him lately, keep on telling him he looks so much better, not that he didn't look great before....but he feels better too. That is a great way to start the week.

Sunday, May 22, 2011

May 22

This is Sunday evening, and I'm back on the cot! Stephen had a great Sabbath day. Our young men continue to bring him the sacrament every Sunday and he has a "study time" with Spencer where they read the lessons online. He does his best to make Sunday a special day in the hospital. We were talking about attending mass at the hospital chapel. Maybe he can get out of bed early enough one Sunday to do that, since he usually sleeps in on his days off. Bishop Myers came by today and he was able to have his interview for a temple recommend. He is anticipating this and wondering about going as soon as possible. He was in great spirits tonight and we had quite a large family gathering in the common room, plus Senora Taft was able to visit again. Physically, he is feeling much stronger and has less coughing up secretions. His leg is less swollen from the blood clots and he has more appetite. Tonight when he was eating I noticed him reaching up and scratching the side of his nose...what a small and simple miracle!

I just have a few thoughts...for those of you who follow my babblings. We are learning about patience, faith, fortitude, and humility. I think the neurophysiologist and Carol, the head of the program whom I really adore, are both waiting for us to have a breakdown eventually. Carol keeps on asking me probingly, “How are you doing?”. I keep on smiling and telling her we are great. She keeps on telling me that I’m such a great mom and she loves Stephen. I will have to tell her one day that the only way that I’m keeping up with this day after day is because Christ is carrying us through it. He is strengthening us beyond our own means. Sometimes people think that we aren’t given more than we can handle, like Nephi 3:7, but that’s not it….Heavenly Father gives us more than we can handle on our own so that we can learn to rely on the atonement to make it through our trials. I know what it feels like to be encircled with His arms. I know that you do too, in your own lives and trials. That is how we come to know Him. I have always been a worrier, and this has cured me of worry. I know it is in the Lords’ hands and am peace to wait for His purposes to be revealed. I’ll admit, sometimes something will happen that will cause me to pause and remind myself to exercise my faith, like a muscle that needs to be strengthened regularly. That is where prayer, study, and sharing our testimonies with each other come into play. I can’t depend on spiritual witnesses from weeks ago, unless I have the spirit with me now to know that they were indeed from Heavenly Father. I need to have the constant companionship of the Holy Ghost through constant prayer, because Satan is just waiting to bring discouragement, doubt, and fear and we are constantly on our guard to chase him out. He can have no room in our lives during this trial. One of the ways to build our faith is to keep the commandments...quoting Elder Scott from Bro. Benson's talk today!

We love you all...good night!

Thursday, May 19, 2011

May 19th

Today is the 5th week since the accident. Not an anniversary we want to celebrate necessarily, but one to recognize and remember. We had a little mini-celebration by walking/driving across the street to the barbershop so Stephen could get a much anticipated haircut, the first one in awhile. They did it right in the wheelchair, and it looks great. It was a legitimate barbershop and I felt a little out of place, being the only female, but I guess there is nothing better than watching ESPN and talking sports with strangers while you get your haircut. Apparently, it is the place to go with pictures of Shaq and Raja Bell, former customers, up on the wall. Thanks Mark for showing up and going with us, it was great to have some company. We also went next door and Stephen ordered a real cheeseburger and good fries. They tasted delicious, if only he had the appetite to eat them all. Therapies went well, and Stephen was luckily awake for a few visitors at night too. Physically, Stephen's lungs are doing great, the blood clots will dissolve in a few days with the medication. The medication is making his heart rate jump a little high, but that's not a big concern. So, Stephen is feeling good, and ready to do some work.

I am impressed with the "quiet dignity and magestic meekness" that Stephen is developing as he deals with this humbling and debilitating condition. I was reading about meekness in Matthew 29, and how we need to learn from Christ to be meek and lowly in heart. Christ was meek because he was never weary in well-doing, by being patient in times of tribulation, and by submitting His will to the will of the Father in all things. These are lessons we are learning. Stephen is learning real compassion for others, especially anyone suffering. He feels their pains internally and prays for them. He does what he can to be cheerful and kind to the other patients here, and they all seem to be in the same mindset. Suffering can teach us so much. After all, the meek shall inherit the earth. Let's all try to have more compassion towards others and have a great day!

Wednesday, May 18, 2011

May 18

Just one of those days....you know not enough time in the day!

Tuesday, May 17, 2011

May 17

I am home tonight and Spencer is spending the night with Stephen in the hospital. He had an excellent sleep last night and was able to sleep in a little because his schedule started later than usual. So, we were off to a good start for the day. However, we had some tough spots during the day. His antibiotics are making him nauseous and he didn't have much appetite for lunch. That's a good thing, because he got sick during therapy and threw up whatever was in his stomach. They have another medication to treat the nausea, but he was avoiding it because the side effects would make him more sleepy. He also had a lot of coughing up stuff during therapy, which is difficult when we aren't in the room with the suctioning machine. So, he had to spit into washcloths all day. That really isn't anything too new or terrible to complain about, but the blood clots in the right leg discovered in the ultrasound this afternoon are a little frustrating. So, we are adding more medications to dissolve them, including twice daily shots in the stomach. He had a filter inserted under his kidney the second day in the ICU to catch any blood clots. We have known they were common risk from his legs not moving regularly. It's just a little frustrating that he has multiple blood clots and wasn't on medication to prevent them. So, something new to pray for...please pray that the blood clots will dissolve and start praying for Stephen's doctors. We are doing all that we can to be actively involved in his treatments and care, but we don't have medical degrees (although we might by the time this is done) and have to place our trust in them. We need to include them in our prayers, that they will be inspired to give him the best treatments and medications and that his body will respond to the medications. Thank you so much for all your prayers and concern.

Monday, May 16, 2011

May 16th, Monday

Today we got to see what Stephen really is made of. He basically had a miserable night last night, with a high fever and lots of suctioning. They decided to do a chest xray and draw blood for a culture around 3 or 4 AM. (Can't really remember because the whole night was a blur.) Anyhow, he was able to drift back to sleep for a few hours after that. When we woke up in the morning, we had a OT session beside at 8:30 for half an hour. After that, the nurse and tech were able to help Stephen quickly get out of bed and in the wheelchair for PT at 9:30. He still had a fever, but had taken some tylenol and it was going away. The therapist and nurse told him that they would only do what he was up for and if he wasn't feeling good to speak up and call it quits. Stephen drove off to the gym and did it all, no taking it easy. I know he was exhausted, but he knows he's got to put in the work when it's time to work, and sleep whenever he can. As far as the fever goes, he still has it and his blood tests came back with a high white blood cell count, indicating an infection. The cultures aren't back yet. His lungs are good in the xray, so it probably isn't there. He is coughing up a lot of secretions, mostly due to an adjust in medications. We had 3 respiratory sessions today, lasting anywhere from 1/2 hour to 1 hour. It's all about keeping the lungs clear. If you are wondering what to pray for today, we want this infection to clear up quickly so the fever will subside. Of course we are very pleased to report day two of no oxygen!! Yes, he still is breathing oxygen, but all from room air...not from a tank...to be perfectly clear to those jokesters out there.

I have some great inspiration thoughts, but am too tired to think clearly now. I do want to say what a great chance it was for me to get back to some normalacy and teach the young women yesterday at church. I loved telling them about the temple and sharing my testimony with them about how excited Stephen is to get out of here so he will be able to go for his first time. For those of you who are able to attend a temple, think of Stephen when you go and take him there with you!

Sunday, May 15, 2011

May 15

This is another catch up for the last two days. Spencer was here on weekend duty, plus Uncle Mark stayed overnight on Saturday so Spence could go to his early (6 am) stake meetings, which he hasn't been to for the last month. So, Friday late afternoon Stephen took a nap, as usual. However, he slept on through the night, with a brief wake up for the Quarantas, who came to adjust his glasses. When he woke up on Saturday, he calculated a total of 16 1/2 hours of solid sleep. I have to admit, I'm a little jealous of the sleep. Saturday he hung out with cousin Dan Johnson, so Spencer and I could attend the temple. Thank you Dan! He didn't have any therapy on Saturday, so it was a day to just relax. The last few days he has had a lot of coughing up secretions around 7 pm, just like clockwork. Sometimes he can cough for a good hour, which is the best way to keep his lungs clear, but can really mess up the nightime dinner, visiting, and bed routine. We are really pleased with Sunday's progress. He was oxygen free for the day, with his oxygen saturation measuring in the mid-90s. That was our goal since the broncoscopy on Wednesday. Yeah! The pulmonologist also said that his breathing was getting stronger and more in the chest and shoulders than before. That is what we have been praying for. We are grateful for the progress. Thanks for all the comments and messages and a big thank you to the Chapples for the BYU basketball signed by the team! We had to examine it closely after you left to try and decifer the signatures. Very cool!

Friday, May 13, 2011

may 12

May 12, 2011
This entry will be for the last two days. Apparently Blogger is have some maintenance issues and was in read-only mode today, so it wouldn’t allow me to make a post. Sorry, I had a few followers calling me to find out the latest. I didn’t realize how important it was for you to get the minute by minute play-calls from rehab. I will try to give you more details. To us they seem a little repetitive and mundane, but for those of you who aren’t able to be here in person, I understand that it is important to know as much as possible.
On Wednesday (the 11th) we started off the day with a broncoscopy to clean out the lower left lobe of the lung, the largest of the six lobes. It is the lobe they have been concerned with all along. After the scope, it is sounding much better. To us a bronc seems like a miserable, invasive procedure that we would rather avoid, but to the pulmonologist it is a routine, no big deal thing. I’m starting to understand his point of view, because afterwards Stephen was up and feeling awesome and completely off oxygen. We went for a cruise in the wheelchair to the main building to get something to eat with another girl in rehab, Eden, and the PT therapist, Melissa, and Gus, the recreational therapist. By lunch time he was exhausted again and back on some oxygen, but much less than before. His poor nose is raw from the cannula and the scope, so they gave him a different cannula with a little well instead of the prongs. He continues to be on oxygen, especially at night when his breathing naturally slows down and after rehab when he is exhausted. The good news is his lungs are clear. Between the meds, the schedule, workouts, and basically the healing process, he is exhausted. We wake him up for dinner at 6:00 and hang out for a little and then start getting ready for bed. I know Stephen loves to sleep, but this is extreme sleep. That leaves hardly any time for him to make phone calls, read (even blog posts or facebook), or dictate notes. He knows all of you are out there sending your love and will eventually be able to send it back. It would be nice to spend some time studying espanol, and taking his finals, but we haven’t gotten there yet, he needs SOME downtime. Luckily it’s the NBA playoffs and it’s nice for him to catch a few minutes of basketball at night, just to keep things somewhat normal and escape from the hospital world.
He is making more progress with his fingers, thumb, wrists, and triceps. They are improving a little each day. It takes extreme concentration and effort to move his thumb a flicker, and bring in fingers in an inch. Last week he started just triggering the tricep, now he can extend his arm from his chest out to 90 degrees, pushing for more. His therapists are really pleased. He sat up the other day for 2 minutes, balancing with his shoulders, biceps, and neck. We are grateful to see the improvements, they are motivating and keep us optimistic and encouraged. A couple of days ago the toes on his left foot started flexing in periodically. The first time I saw it, I was totally aghast thinking Stephen was doing it, but it is involuntary. However, it is still interesting to the doctor and therapist, because it is different from a muscle spasm, which SCI (spine cord injury) patients deal with regularly. They said it was a signal getting through. So, we shall see!
Tomorrow (the 14th) marks one month since the accident. Time as gone slower for me than the last month of a pregnancy. With so much emotion, anxiety, anticipation, and exhaustion packed into such a short time, we have been in overload and a high adrenaline rush. The adrenaline is starting to calm down, and we are starting to settle in more with a day to day schedule. The challenge will be to keep up the motivation and optimism day to day. I have learned to have a constant prayer in my heart, and find myself talking to Heavenly Father about everything throughout the day. I know Stephen does as well. That is the only answer to find peace and joy in the midst of a trial.