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

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.