Hives & the ER, Part 2 – May 8, 2013

5:38 PM

So the results of the tests are in: the MRI results are normal, and the electroencephalogram (EEG or brain-wave) show normal brain activity.  This is all good news as any visit to the emergency room beginning in the dead of night rarely ends well. After a few hours she is back at home, extremely drained from all the hustle and bustle of the day on only a few hours’ sleep. I do not know what else to write about – my feelings are strained and I wonder sometimes if we are going to make it out of this mess. Clearly, it has a far greater impact on Cassie’s life than it does mine. I see my companion and how she is not herself.  I see her make huge strides and have much progress, to only hit another wall. I know I need to be faithful and learn what the Lord has in store for my wife and I. It is difficult to do so. I think of Job in the New Testament, and the horrible things that happened to him: slain family, human frailty and illnesses, and the derision of his friends. As I think of that, my mind is immediately taken to the opening verses of Doctrine and Covenants 121. Here is the story of Joseph Smith in Liberty Jail, hallowed scripture where multiple insights are given through the dialogue between the Prophet Joseph and the Almighty.  Here is the text of that scripture:

O God, where art thou? And where is the pavilion that covereth thy hiding place? How long shall thy hand be stayed, and thine eye, yea thy pure eye, behold from the eternal heavens the wrongs of thy people and of thy servants, and thine ear be penetrated with their cries? Yea, O Lord, how long shall they suffer these wrongs and unlawful oppressions, before thine heart shall be softened toward them, and thy bowels be moved with compassion toward them? O Lord God Almighty, maker of heaven, earth, and seas, and of all things that in them are, and who controllest and subjectest the devil, and the dark and benighted dominion of Sheol—stretch forth thy hand; let thine eye pierce; let thy pavilion be taken up; let thy hiding place no longer be covered; let thine ear be inclined; let thine heart be softened, and thy bowels moved with compassion toward us ... Remember thy suffering saints, O our God; and thy servants will rejoice in thy name forever. 

My son, peace be unto thy soul; thine adversity and thine afflictions shall be but a small moment; And then, if thou endure it well, God shall exalt thee on high; thou shalt triumph over all thy foes. Thy friends do stand by thee, and they shall hail thee again with warm hearts and friendly hands. Thou art not yet as Job ... (Doctrine and Covenants 121:1-4,6-10)

We are not alone.

Hives & the ER, Part 1 – May 8, 2013

Smiling at the doctors' office

So Tuesday morning started off a little interesting. I was at work when Amy texted me and said that she was developing a rash. It was observed to be on her knees and elbows. After consulting with Dr. S. Call she had an impromptu visit to do some blood work. He increased her prednisone dosage from 5mg to 40mg per day. As the day progressed, her left side was hit the worst with the hive-like symptoms. When I returned home, I could tell how tired she was, worn out from all of these visits. The weather was luckily good while she was outside, as around dinnertime it was raining and hailing quite hard. We had a good dinner and watched some Boy Meets World. We updated the blog and then got her ready for bed. It took some extra time because now the hives have spread to more of her limbs. We get her in bed and she is clearly uncomfortable. As I was saying our prayer together, she fell asleep and I hoped that she would continue to have those deep sleep breathing patterns. About 30 minutes later she woke up and was just itchy all over. The hives have now spread to most of her body, including her neck and the sides of her face.

About 10:30 PM I called Amy and had her come over, just to have another set of eyes there in case an urgent decision has to be made. Cassie is slathered with hydrocortisone and lotion in an attempt to alleviate the irritation. She slept for another two hours and then woke up again with the same symptoms. I make an early morning trip to Walmart to purchase more hydrocortisone. She then slept for an additional hour and then woke up needing to go to the bathroom. As Amy and I help her, she took two steps and then swayed side-to-side. Her head lolled to one side and her eyes rolled back into her head and she collapsed. We lay her down on the bed before we can slide her to the ground. 

She is not responsive and breathing quite shallow. Amy sits with her and makes sure she remains conscious. I call 911 and the ambulance is on its way. I get ready, and then Amy gets ready as we trade off. We arrive at the ER at Utah Valley RMC around 5 AM. After normal procedure happens, she eventually takes some Benadryl and goes to sleep. The neurologist, Dr. L. Altamirano comes and gives the diagnosis: most likely a seizure. Fortunately her hives are retreating as a result of the increased prednisone and possibly the Benadryl. Also fortunate: the results of the CT scan, urinalysis, etc. are normal. She has an upcoming brain wave test and an MRI. More details to come. As all of this is coming to fruition, I reflect on my feelings of losing my wife for at least a second time, if we don’t include her first ER visit. There are just so many things that are possible in her life now as a consequence of the stroke. Seizures are scary. It scares me that there are so many things out of my control, that I get to be a spectator rather than in control as much as I would like to be.

Back to Church Activity As Life Continues – May 7, 2013

This has been an eventful few days.  A fun story to share: Saturday night at my family, Gramps and Nanny joined us for dinner and afterwards played Mexican Train, an entertaining and strategic domino game.  The best part was, in previous times playing games, Cassie has needed some assistance remembering the game and playing it properly.  This time around, she needed little reminders and, as it turned out, won the first two go-arounds!  She was laughing and quite pleased with herself – a reward so worthwhile as she has dealt with so much.

We have worked ourselves back to church, having returned April 14, the week following General Conference.  We started out with just sacrament meeting, and this past Sunday we went to the first two hours of church (skipping the 3^rd hour) as we continue to work up to full activity on Sundays.  It’s a treat to be among the Saints, to feel of the Spirit of God helping buoy us up in our time of need.  When the prayers are said, and heaven’s help requested for those that stand in need, I take note of that.  Before, I never felt that those pleas applied to Cassie and me.  Now, it certainly does. 

Yesterday, on the 6^th, there were many errands and tasks to be completed.  First we had therapy, which Cassie continues to excel at.  We have increased her baclofen dosage to 60mg per day and that seems to be loosening up the tone in her hand that is causing the ligaments and muscles to work in such a manner that she clenches her hand (not quite a full fist, but certainly not relaxed).  Her step is also improving – it is less compensated by her torso but more moving the leg forward and utilizing her knee.  She takes the steps going down at a normal pace, one foot per step.  She still feels uncomfortable when there is not handrail for her to feel secure.  Her physical therapist Shane helped her take the stairs going up in the same fashion, and it took some time but she is making strides in that area.  She is able to balance more and more, and put more weight on the right side.  She still cannot move her foot or wiggle her toes (it’s all involuntary movement).  She can lift her right arm and hand to position it by her mouth, such as if she were to eat. 

As far as the errands, we went to Shopko to buy some sheets, to Deseret Book for some Mother’s Day shopping, the bank to deposit some cash, and finally the Bishop’s Storehouse to get some much needed food and supplies.  I was not quite sure what to expect, imagining some kind of Costco setup.  I was taken aback at the quaint little convenience store vibe there.  The service missionaries were quite helpful and garnered all the supplies requested for us by our Relief Society president days prior.   I was humbled and I felt the love of God and the fellow members of the church who contribute to the fast offering funds.  I obviously can say that I did not anticipate ever using the funds, only to contribute.  But here we were, in the storehouse, receiving the aid of the church.  I took me aback and I truly felt humbled, and know that my life is more in His hands, more than what I may be comfortable admitting.  I am used to independence and living within my means, but now the “means” just are not there anymore.  Humility requires a submissive heart and willingness to be served.

For Mine Own Purpose – April 30, 2013

We have wondered why Cassie had this stroke and although we have yet to obtain this information, I feel that the Lord pointed us in the right direction to obtaining that answer one piece at a time.  It is found in this scripture.

1 NEPHI 15:3
 3 For he truly spake many great things unto them, which were hard to be understood, save a man should inquire of the Lord; and they being hard in their hearts, therefore they did not look unto the Lord as they ought.

I think sometimes I try to escape what has happened, to harden my heart as it pertains to the stroke.  I know that there is a purpose to what has transpired, perhaps even something "great ... which [are] hard to be understood."  We are to remain faithful to Him, pray to Him for knowledge and look and live.  

Life is quite a journey.  I am not ashamed to admit my allegiance and dependence to the Redeemer and Savior of the World, Jesus Christ.  It is a piece of humanity we all possess: the need for someone to lean on, to divulge secrets and burdens and to look as an exemplar.  I seek, albeit imperfectly, to be like Him and to follow Him.  I do not have all the answers, and for someone like me (for those who know me more intimately) who seeks to have control and is a perfectionist, it is hard to not have a complete grasp on the situation.  He who has suffered for all is, oft times, the only source to turn for solace.

Another scripture I love can be found in the Doctrine & Covenants.  Forgive me, as I may oft quote this as it gives me strength and eternal perspective.

D&C 122:5-9 (italics added)
 5 If thou art called to pass through tribulation; if thou art in perils among false brethren; if thou art in perils among robbers; if thou art in perils by land or by sea;

 6 If thou art accused with all manner of false accusations; if thine enemies fall upon thee; if they tear thee from the society of thy father and mother and brethren and sisters; and if with a drawn sword thine enemies tear thee from the bosom of thy wife, and of thine offspring, and thine elder son, although but six years of age, shall cling to thy garments, and shall say, My father, my father, why can’t you stay with us? O, my father, what are the men going to do with you? and if then he shall be thrust from thee by the sword, and thou be dragged to prison, and thine enemies prowl around thee like wolves for the blood of the lamb;

 7 And if thou shouldst be cast into the pit, or into the hands of murderers, and the sentence of death passed upon thee; if thou be cast into the deep; if the billowing surge conspire against thee; if fierce winds become thine enemy; if the heavens gather blackness, and all the elements combine to hedge up the way; and above all, if the very jaws of hell shall gape open the mouth wide after thee, know thou, my son, that all these things shall give thee experience, and shall be for thy good.

 8 The Son of Man hath descended below them all. Art thou greater than he?

 9 Therefore, hold on thy way, and the priesthood shall remain with thee; for their bounds are set, they cannot pass. Thy days are known, and thy years shall not be numbered less; therefore, fear not what man can do, for God shall be with you forever and ever.  

Faith, Hope and Humility – April 23, 2013

This is a cute story: there was a password for an Internet filter that was not remembered.  At first she couldn't recall it – so she took a few minutes to think about it and it still would not come. She went into the bathroom and of all places, there she had her epiphany. She came back to the computer and typed in the password and it worked. She was ecstatic about this information, that she was able to pull from far within herself in her still healing brain. It was a good time to rejoice, even if it was something as simple as a password.

The evening was difficult. We visited with Bishop Bennett about our finances and requested help from him to make it. This is the first month in our marriage where we have expected to fall short of what is required for the monthly bills and expenses. We explained to him how the emergency fund had allowed us to not be totally submerged by bills, but that we have reached a point where it is no longer realistic to survive like this.  It was quite humbling to ask for help, and Cassie and I were emotional about it – as I'm sure she feels somewhat responsible and helpless simultaneously. I don't know if I had any expectations as to what the bishop would offer for assistance, but upfront he offered to help with rent and to allow us to utilize the bishop's storehouse. He was anxious and quite willing to offer these services to us, who he identified as a temple-worthy couple.  I don't feel that I'm doing the bare minimum at times as far as what spirituality and righteousness demand. But I know that Cassie and I are at a point in our lives where humility is required and we have to be the ones that are served, perhaps more than we want. Time to redouble my efforts to be close to the Lord and ensure I keep His commandments at all times and be faithful above all.

We have many people to thank, who have spent precious time and money to support us as we go through this trial.  It ranges from the help given by the church, to the immediate family who spend time with Cassie while I work, to friends who have come to be with us, to ward members who have provided meals and loving comfort, and to the many thousands across the nation that pray for us, and the temples wherein our names are mentioned.  The means whereby we subsist on a daily basis lies more in the strength drawn from others than what we can sometimes muster from within.  Cassie and I thank you and know that your efforts are heaven sent.  It is recognized that faith, hope and humility are constant doctrines in life right now.

And Do You Hear & Answer Every Child's Prayer – April 19, 2013

As we were retiring to bed, Cassie began to cry and I tried to figure out what she was feeling. She related to me that her Father in Heaven hears her prayers, but that she was worried about how He heard them. I told her that Heavenly Father hears everyone's prayers and comprehends them perfectly and that she should not worry.  She is trying so hard to improve her speech that it is sometimes difficult for her to realize that it is still a long road to full recovery but that she progresses on a daily basis. We've spent time talking and Cassie has requested multiple priesthood blessings to know of the love of the Almighty God and His Son, and to receive comfort through the Holy Ghost. I cannot imagine how difficult this trial is for her, and to know that she has a long road ahead. But as leaders of the church have said, prayer is a supernal gift from a loving Father in Heaven, to draw on a spiritual reservoir of strength and love from His hand.

The sublime words from A Child's Prayer, found in the children's hymnbook, come to mind: 

Heavenly Father, are you really there? 

And do you hear and answer ev’ry child’s prayer? 
Some say that heaven is far away, 
But I feel it close around me as I pray. 
Heavenly Father, I remember now 
Something that Jesus told disciples long ago: 
“Suffer the children to come to me.” 
Father, in prayer I’m coming now to thee. 

Pray, he is there; 
Speak, he is list’ning. 
You are his child; 
His love now surrounds you. 
He hears your prayer; 
He loves the children. 
Of such is the kingdom, 
The kingdom of heav’n. 

Miscarriage Recollection – April 16, 2013

In relation to my miscarriage:
"I remember all the blood. I don't remember it happening and how it seemed so fast. I was on my side when I miscarried. The nurse came in and said that she was going to put some potent things in place. I didn't think about it at that point."

To Feel Normal & Be Better – April 15, 2013

Such a beautiful girl (and smile), holding a nice
chunk of birthday brownie

She cried when she went outside because she is not able to do things a normal person might: gardening, picnics, swimming, etc. Feeling the breeze and the rays of the sun was a good feeling. In order to use the new tools she received for her birthday, she wants to be able to use her hand and leg to shower by herself and dry herself. She talked about putting her pride aside to reach out to others for help as she continues to heal and recover. She was also distraught because she has an ingrown toenail and she cannot take care of it by herself.

"Escaping" therapy by making brownies!

We were able to celebrate her birthday this past week.  Her birthday is April 11, and it sure was a week-long attraction! She spent time with me and I made her dinner. Then on Saturday it was a celebration at my family's and the following day a celebration at her family's.

She is quite loved and appreciated.  She is a light in our lives and I know that she doesn't feel normal, and so I am positive that having this birthday was among one of the events that could be classified as "normal."  She received some nice gifts, but ultimately to her and to myself, it is the joy of being surrounded by family, to feel the warmth of love permeate the room.

The expression on her face is priceless

It is such a blessing to see the excitement on her face

The party at our apartment.
Pictured: Cassie; Chris & Cathy Holt

"What did you say?!"
Pictured: Cassie; Amy, Troy and Ethan Lilly

Simple Beauty: Thoughts from Cassie – April 13, 2013

Cassandra said the blessing on the food at breakfast: “I'm thankful for Chris because he toils and troubles all the day long.”  Cute, huh?

"I want to be able to hug you with both arms. I have a hard time thinking that I will be able to make the changes I want."

The Difference – April 5, 2013

Cassie has expressed some frustration with her current situation.  Her handwriting has improved, with the size of the letters more comparable to each other, as well as the writing process runs more smoothly and comfortably.  But this is with her left hand and not her right.  She is worried about the status of her right arm and the fact that she is still unable to do much with it on her own.  She wants me to write down her progress so that she is able to see how far she has progressed. Today, in occupational therapy (without the assistance of the electrodes), was able to lift 15 pounds once in addition to lifting 10 pounds twenty times successively.  She is compensating less and less with her core and trunk, relying upon the muscles and ligaments/tendons in her arm.  She knows that, eventually, she will be better, but it will take many months of work.  She never complains or bemoans her situation, which I feel is quite different than feeling some frustration for the the struggles she is experiencing.

Tangible Optimism – April 1, 2013

I like 1 Nephi, it's so simple. It is so easy to read.

I reached out and grabbed my wheelchair with my right hand and it felt really good and it was so  positive I don't think I can believe it. I have no other choice but to be positive. I just grin and bear it.

A Tale of Two Cities – March 31 & April 1, 2013

So we have had quite the eventful Easter weekend, first visiting my family and then the Lilly’s.  That is how it is usually done, Saturdays with my family since my dad has to leave sometime on Sunday during or after church, and then Sundays with Cassie’s family.  Nothing seemed out of the ordinary and we went to bed, perhaps a little later than we should have that night. Just after midnight, Cassie wakes me up and is panicking a little bit.  She says that she cannot breathe and that her heart is pounding as if she has just completed a run.  Of course that worries me – how am I supposed to know what she’s experiencing?  So I jump on the iPad and look up some of those symptoms, and of course heart attack is one possible outcome, which does not sit well with me at all.  What more do we need to suffer?  So I talk to her about going to the emergency room, and that of course upsets her because she has been out of rehab for only a month and surely is weary of having to visit doctors so often in her lifetime.  We end up deciding that it is a better decision to go and be safe rather than sorry as the cliché goes.  So I hurry and throw on some clothes, help her get dressed and out to the car and away we go.  I called both of the mothers to have them meet us at UVRMC.  My mind is racing at what it could be.  I surely hope it isn’t a heart attack, as that would be just another tragic event.  But what else could it be?  We arrive at the hospital around 1:30 AM, get checked in to a small room where the 4 of us barely fit.  She is examined, has another IV apparatus plugged into her arm (which, in private, Cassie cried because she had not been without one for less than 2 months) and then we wait.  After the echocardiogram results are in a few hours later, there doesn’t seem to be anything wrong with her heart, which is a huge relief to all of us.  They do have her setup with a heart monitor for 24 hour monitoring.  Every time she feels that same or similar symptoms she is supposed to activate the monitor so that the caretakers can examine that specific moment to check for anything amiss.  The heart monitor has the exact same wires and setup that she had while lying in a hospital bed.

I feel so bad for Cassie – just another thing to have to deal with on top of the lame hand, the impaired movement and the difficulty with speech.  She is definitely a champion for having to deal with all of these deficiencies, that I can only imagine just weighs her down with sorrow and despair at times.  We return back home and get settled again around 4 AM.  At this point, she would have to arise in 2.5 hours’ time to prepare for therapy, which is not going to happen.  So we sleep until 8 AM or so and I call and cancel her therapy.  The doctors said she would have been fine to carry on, but she needs her rest.  We took it easy that day.  About a week and a half later we receive the results: normal.  On occasion she feels that rush of the heart and thinks her breathing is quickening, but using the blood pressure cuff shows a normal pulse and blood pressure.  Lately, those symptoms have come with less frequency.  I wish all of this would be over, and it seems a monumental load to bear.

There Shall Not Be Room Enough to Receive It – March 17, 2013

Bowling! Amy L. and Cathy H. joined us

Michelle, speech therapist

Well it has been an entire month since writing last and for good reason too.  There were many things going on that prevented me from using a computer to take time and write.  For one, Cassie moved to the transition room soon after one of us stayed the night with here in the armchair.  It was a blessing to stay the night with Cassie, just as I anticipated.  It was nice too, and took me away from the bad habits of staying up late watching TV and thus getting a later start in the morning.  Plus, I had to start going back to work.  Luckily I have the ability to care for Cassie if I need to do so.  While in the transition room we were able to complete our taxes and scholarships, just in case I or both of us return to school this coming fall.  I really don’t know how that will turn out, but hopefully towards the end of the year we will see what progress has been made and whether or not it is a feasible idea.  With our taxes, we should be getting a sizable return, which could not have come at a more helpful time.

Cynthia, occupational therapist

Cassie has the wonderful opportunity of going to the Wilkinson Center at BYU for some bowling! The rehab center has begun an annual bowling activity for those who have suffered from strokes.  Cassie was hesitant at first, unsure if she wanted to go.  We were able to convince her otherwise.  It was uplifting to see Cassie out there being able to bowl (albeit with some assistance on both sides of her).  She ended up having a blast, and it was a pleasure to see how happy she was.

Cassie continues to get better and better all of the time.  She currently can walk with just one person using a forearm crutch.  Her new therapists are Shane, Jory and Jim – who replaced Dustin, Cynthia and Michelle.  It was hard for Cassie to part with Dustin, because he was done with his rotation and went back to New Mexico, and Michelle was done with her's and returned to BYU.  Cassie made sure to take pictures and obtain contact information to keep in touch.  Going back to her progress, she is able to go up and down stairs without too much trouble, is able to navigate around the house in her wheelchair, and stand on her own as she brushes her teeth.  She feels that she is not improving, and on occasion cries because of her fears of what might be the end result.  I see much progress and try to convey that to her.  I couldn’t imagine what she must feel like, especially when it comes to her right arm and hand, which remains the least advanced limb.  She can move it away from her body, but her fingers still are mostly clenched and hard to maneuver.  Her knee has been bending more and she takes longer strides.  With the help of the Nioxin hair products her hair has begun to grow back.  Brittany, the physical therapist from the ICU, gave us some product and then gave her a haircut to make the hair more uniform and symmetrical.

We have tried to do fun things, such as going to Ethan’s wrestling match in Pleasant Grove.  She was riveted watching any of the matches, and was concerned when Ethan would get lifted and slammed.  It was a joy to see her out in the real world doing normal things.  I even treated her to Purple Turtle onion rings and Oreo shake, just to test her mother’s theory that the onion rings are the best in the world.  I disagree – not crunchy enough and way to flimsy.  A lot of the time we stay at home and watch something, like Survivor, Boy Meets World, Arrow, or some movie.

Grandma Johnson hooked Cassie up with an iPad!  It’s the third generation one with the retina display.  She has many apps for learning, such as numbers, colors, shapes, animals, etc.  Also, Mathew from BYU (Amy’s coworker) came over one night and helped to sync our iTunes accounts so that movies and such were available on all devices, in case Cassie wanted to have something on the iPad to break the monotony of the day.  It is nice to have these options, to have content transferable to the iPad.

Cassie, hard at work, moping the floor (it needed it!)

Many people have continued to provide meals for us.  The first week it was every night, and the refrigerator was overflowing.  So we had the meals cut back to Monday, Wednesday and Friday.  Other friends have still provided food and snacks in the meantime.  The windows of heaven have surely opened, to the point of not having enough room to receive it all.

Contributed by Christopher Holt

Cassie's First Post – March 3, 2013

This will be a series of thoughts, feelings and impressions that Cassie has had since her discharge from the rehabilitation center. She recorded them on the iPad and the content of the sentence remains unchanged and pure.

It is so hard to have been able to talk and then not be able to talk. Because I have things that I ... um ... I'm trying to say.

Romance Is In the Air – February 17, 2013

The flowers I got for Cassie

Cassandra is doing really good in rehab.  Her speech is getting more and more understandable every day. She is working really hard in all of her therapies. She will probably be here another 2 weeks. We have found that when she feels up to it, she draws strength from visitors.  We appreciate your patience as we go through this process.  We also want her to be able to draw strength from people, knowing that she is loved and cared for. 

Contributed by Amy Lilly

Today is again the Sabbath Day and time for some reflection.  This has been an extremely blessed week with many miracles happening.  Of course, Cassie continues to improve day-by-day.  Sometimes it is difficult for her to see progress, and she is becoming increasingly aware of things and expressing herself well.  She has finally said “Poop!”  One of her therapists in the ICU would always ask her to say that (she would always give him "the look" mixed with amusement and disgust when he requested this) and now she can.  She has also developed the ability to say the hard “k” and “c” sounds which has been difficult for her.  She is now stringing together words into phrases and sentences, and it has been discovered that when she does not overthink as she speaks the words come easily.  It is such a blessing for me to see all of these normal things coming back, and I hope she recognizes the steps she is taking.

I am still considering whether or not to move into one of the family’s houses or retain the apartment.  I am curious, and might, retain the apartment to see how we might survive financially.  The one thing that might be forsaken is the savings, as I am fairly confident we can handle the normal monthly bills on just my salary.  On the other hand, there is the question of her physical impairments obstructing her ability to handle stairs and the layout of the apartment.  My family’s house has the least amount of stairs and the Lilly’s have the largest set.  Now that Cassie is able to communicate much better, and might be able to use the iPad to write her responses, I need to talk to her about the options.

Amy and Cassie went down to the hospital
gift shop and purchased this for me ...
a candy bouquet

Amy and the Myers setting up the
romantic evening

Beautiful Cassie with a new necklace and
feeling good!

Anyone say decadent?

The Valentine's Day dinnertime spread

The love birds

I do have to recount what happened on Valentine’s Day.  I did wake up with a spark of genius, trying to think of how to give her the perfect gift.  I ended up deciding to give her a handwritten love note.  I knew this would mean something to her because it requires writing, which is not one of my favorite things.  Also, it takes time and thought to do it.  I also purchased her a dozen pink roses and my mother half a dozen yellow roses.  It was a pleasant day as usual.  The parents and friends, on the other hand, were planning behind our backs to give us a romantic evening.  The Matt and Sydney Clayson bought dinner; Noah and Kaitie Myers delivered the food (Panda Express and Sweet Tooth Fairy cupcakes); Amy set up a nice tablecloth and holiday decorations.  So beginning at 6 PM, we had the evening to ourselves.  There was crying, laughing, smiling, kissing – all the good things one might expect from a date.  This one was incredibly special.  I felt a swelling in my heart for Cassie, bigger and brighter than I have felt since marrying her.  I have truly grown more in love with her, and take pleasure in knowing that she loves me and is my wife.  I actually had to carry the conversation, and Cassie could really only respond very childlike.  But I was amazed with how the evening went and just the love that was evident.  The nurses did not even disturb us until I went out to get them at 9 PM to get Cassie ready for bed (they even put a sign on the door, making manifest the romantic date in progress).  We also watched The Adjustment Bureau and really just had a wonderful evening.  I could not imagine any more perfect date.  Cassie just had the perfect smile on her face the whole time.  She was even “dolled up,” having makeup on and attired in some of her nicer clothes.  I’m sure she wanted to be beautiful to me, but she is always so.  I have gotten used to the lack of makeup, yet I know that it is important to her and something that makes her happy.  I hope that the date was as special to her as it was to me, and I’m sure it was.  I can just see her now: the glow from the outside lights illuminating behind her as we ate, the smile that pulled to the left side of her face but still maintaining its magical look, her curly locks (even with the absence of some lost hair) cascading down her head as she used to do it.

The wonderfully pleasing Panda Express

She has been having difficult times at night.  One night she thought about the miscarried baby, and last night expressed that there is no one there at night with her.  So Ariana altruistically volunteered to stay the night with her, and then I will stay Sunday night with her.  I cannot believe I have to return to work so soon, and wish I had thought of staying the night.  I am sure Cassie has been trying to say this to us, and has finally conveyed the message to us all.  I do look forward to it, and it will be a blessing when eventually she graduates to the transition room and I can sleep in the same bed with her and enjoy the evening that way.  But sleeping in the recliner won’t be a bad thing either.  Apparently, Amy said that when she came in this morning it was the happiest morning for Cassie in a long time.  I think having family there through the night was comforting, even if it was for that simple fact of having a loved one nearby.

Contributed by Christopher Holt

The nurse-made sign: DO NOT DISTURB

Cassie and Chris posing with their respective bouquets

The Songs I Cannot Sing – February 10, 2013

Cassie has been here in rehab for a number of days now. She has really been working hard, whether she has liked the therapy sessions or not. At times she gets frustrated, but we have encouraged her to persevere and she will see success. Dad said yesterday, since he is gone for a week, that he has seen a lot of improvement. He has that advantage, so to speak, of not seeing her every day and so he can see the evidence of her hard work more easily than those who see her each day. She has a fairly rigid schedule:

• 7 AM with Activities of Daily Life for 45 minutes
• 8:45 for physical therapy for 45 minutes
• 9:30 for occupational therapy for 45 minute
• 11:00 for speech therapy for 30 minutes
• Lunch at 12 noon
• 1:45 physical therapy
• 3:00 speech therapy

She has also moved to the regular diet, which has opened up more options for meals and nutrition. She also eats out in the dining room and goes on tours of the hospital (she obtained a grounds pass – and the next step is a pass to go outside the hospital and visit other places).

I figured out the health insurance, which is a huge relief. Last week I took care of the COBRA payments, as at the end of February her benefits expire. We have been set up for blessings as the payments are considerably less than what was expected. It has been difficult for me to handle these tasks, because she was the one that took charge of insurance and other things. I have also been handling the budget, and probably spending money that I shouldn’t. I did put some money back into the bank and made sure that all bills would be taken care of for the month of February, and we are still able to save money. Heavenly Father has sure taken care of Cassie and I. I am still in the midst of trying to decide whether or not it is appropriate or necessary to move. I really don’t want to move, but I do not know how Cassie will be able to handle the longer flight of stairs going down to the front door. It would be difficult for Cassie to come out of the hospital and not be returning to the apartment. On the other hand, I do not want to spend unnecessary money on a place that I am not currently staying at or that would lend itself as a difficult place to live with her condition and recovery.

We had sacrament meeting for the first time since Cassie’s admittance on January 16. It was a spiritual meeting, which I did not expect. I take for granted many things, namely being able to go to church, to walk, to speak – all of these things that Cassie cannot do in her present state. So as we sit there and sing the hymns, Cassie attempted to sing the first verse and then began to weep because she could tell that it was not right at all. Instantly, the phrase “the songs I cannot sing” came into my mind, and I appreciate that so much more. It’s not by choice that she cannot sing, but it is her ability. She really could not sing. And yet, He understands her perfectly. I said the invocation and was grateful for the words of the prayer I gave. I have noticed that my prayers are more sincere and less rote, and it means more to me as I say them. The speakers spoke on trial and remaining close to God through the thick of them, and the two musical numbers were gorgeous and uplifting (“A Poor Wayfaring Man of Grief” and “Nearer My God to Thee").

One Chapter Closes, Another Begins – February 8, 2013

We made it to Rehab! Wahoo! She was declared medically stable on Tuesday and released to inpatient rehab at 5:00 pm. Over here she can wear her own clothes, she has been cleared to eat regular food, the IV pole is gone and the vital sign leads are gone! She spends 4 hours every day (except Sunday) in therapy. 1.5 hours of physical therapy where they are helping her balance, stand, get in and out of bed, and walk. She also spends 1.5 hours in Occupational Therapy where they are re-teaching her brain how to use her right arm, hand, etc. Her brain has to be reminded of how to do all of these things since that is the part of the brain that the stroke damaged. She also spends 1 hour each day in Speech therapy even though the two language centers were not damaged the highway in between runs through the damaged area so she can understand everything that is said, she seems to be able to read and understand what she is reading, she can’t really say anything understandable except "no."

Contributed by Amy Lilly

This is Cassie, being a goofball. Glad to
see she still has that spirit about her!

This is a monstrous bruise that is a result of all the
blood- and lab-work that was needed on a daily basis

We call this the cadillac of IV pick lines.  Three-pronged
for all the joyous IV medicines and such

Cassie's face continues to realign and seems more
natural, as made evident by her beautiful smile

Moving On Up – February 3, 2013

So it has been a quick few days with some good news: Cassie, on last Friday, was moved to the 3rd floor, which is still considered ICU. It is not intensive care but intermediate care.  So they still like to keep the nurse to patient ratio small but the doctors do not checkup as often. She was real excited to get a change of scenery, and she was able to procure one of the better rooms. The view is not great as it faces the inner brick walls where the air conditioning units are, but she can see the sky and the sun. Her room had been a double room, but is now single and so there is quite a bit room more than her ICU room. I do not like the nurses as much (in general) as the ICU, but I am sure they mean well.

She has been eating more and drinking more, and her vitals are doing well.  Dr. S. Call and the intensivist from the former ICU have explained that the expensive biological medicine, which treatment she began in the ICU, is producing the signs hoped for, that it is working and preventing any additional damage. She is showing improvement in her physical therapy sessions, as she circles the room with two people supporting her with one person blocking her right leg. Amy and I have taken her on two wheelchair tours of the 3rd floor, so that she could see the mountains and some of her surroundings. Both times she has come back to the room completely drained and wanting to lie back down. 

One of the setbacks worth mentioning is that her hair is falling out. This was almost too much for me to handle.  Obviously it is a far less dangerous outcome in comparison with the more pressing health struggles, but this is her outward appearance that is being damaged. People can somewhat tell what is going on inside, but it is much easier to see the outside. When they can see her outward person deteriorating, it is hard for me to see. I wept as I read some scriptures, searching for what they say about the hair of God’s children.  I found Doctrine & Covenants 84:80, 116.

D&C 84:80, 116
 80 And any man that shall go and preach this gospel of the kingdom, and fail not to continue faithful in all things, shall not be weary in mind, neither darkened, neither in body, limb, nor joint; and a hair of his head shall not fall to the ground unnoticed. And they shall not go hungry, neither athirst.
116 Let him trust in me and he shall not be confounded; and a hair of his head shall not fall to the ground unnoticed.

Cassie and I had some time together and I was extremely blessed, in hindsight, of selecting an eternal companion.  She comforted me as I cried and expressed sorrow about her hair falling out. She has a habit of running her hand through her hair, and a result of that is pulling out chunks. Her bed around her hair is strewn with hair. She has cried a few times about it. She is still the most beautiful girl in the world, and whether or not she gets to retain her hair or has to eventually regrow it, I love her and bless her name.

Contributed by Christopher Holt

The Good and the Bad – January 30, 2013

Today has been a quite a day, which seems to be quite the understatement.  Good news is that Cassie has been able to eat and drink on her own. She has been waiting for this day for such a long time.  For a while there, she was asking any nurse or doctor (or family member for that matter) whether or not she was going to be allowed to eat and drink now. At this point it is still like playing charades, where she uses her able limbs to communicate, and where sometimes we just have to guess until we get it right.  It's funny: she gets something caught in her mind that she wants to talk about it and it can take many long minutes of deliberating and guessing to score the right answer. Finally, the time arrived where the feeding tube was removed and the food arrived. She was so excited when she received her first "food item", which was an orange Popsicle, which she devoured. She also has expressed that it is the best food she has eaten. She was able to also have a chocolate milkshake as that is a soft food, which she thoroughly enjoyed, as can be seen in the picture to the right. She is doing really well with physical therapy and her right side is gaining more and more resistance (it increases with the more resistance the left side receives). The therapists do a number of exercises and stretches with her. On a side note (a funny one at that): her feeding tube was removed this morning, but as the observant husband that I am, I was oblivious to that until it had to be told me by my mother-in-law, and I was shocked to see that yes, the tube was gone. I just thought her face looked normal.

Now, for the tragic news: Cassie lost the baby. Dr. Feltovich (the high risk OBGYN) came in and did another ultrasound and there was no evident heartbeat. All of us in the room were stoic until she left, myself denying multiple times that I was anything but okay.  When she left the room, it was a complete meltdown, at which point we were all crying and comforting each other. I wish I knew what was going on in my wife’s head as she wouldn't be able to dictate what that state may be.  The able limbs making motions are not capable of expressing that deep of an emotion. I never anticipated that the joy we felt as expecting father and mother only weeks before could change so drastically and suddenly into heartache and emptiness as it did this afternoon. All of the dreams of parenthood melted away. I know what I believe, and I know what Cassie and the remainder of my family hold to, but in times like this, I can only be human. Some social workers came in and gave her some information about child loss and dealing with the resultant emotions. They also gave her a neutral colored blanket (as we did not know the gender of the baby), a charm bracelet and a matching ring. There have been multiple times today where there has been weeping and hugging, a longing for comfort that cannot quite be satisfied.

As many people would do in this situation, I turned to God for strength beyond my own. I have found comfort by turning to the scriptures, reading His words given through prophets old and new. In particular, I turned to Moroni 8:5-12 and Doctrine & Covenants 137:5-10 to receive the most relief that at this time I can obtain.

MORONI 8:5-12

 5 For, if I have learned the truth, there have been disputations among you concerning the baptism of your little children.

 6 And now, my son, I desire that ye should labor diligently, that this gross error should be removed from among you; for, for this intent I have written this epistle.

 7 For immediately after I had learned these things of you I inquired of the Lord concerning the matter. And the word of the Lord came to me by the power of the Holy Ghost, saying:

 8 Listen to the words of Christ, your Redeemer, your Lord and your God. Behold, I came into the world not to call the righteous but sinners to repentance; the whole need no physician, but they that are sick; wherefore, little children are whole, for they are not capable of committing sin; wherefore the curse of Adam is taken from them in me, that it hath no power over them; and the law of circumcision is done away in me.

 9 And after this manner did the Holy Ghost manifest the word of God unto me; wherefore, my beloved son, I know that it is solemn mockery before God, that ye should baptize little children.

 10 Behold I say unto you that this thing shall ye teach — repentance and baptism unto those who are accountable and capable of committing sin; yea, teach parents that they must repent and be baptized, and humble themselves as their little children, and they shall all be saved with their little children.

 11 And their little children need no repentance, neither baptism. Behold, baptism is unto repentance to the fulfilling the commandments unto the remission of sins.

 12 But little children are alive in Christ, even from the foundation of the world; if not so, God is a partial God, and also a changeable God, and a respecter to persons; for how many little children have died without baptism!

D&C 137:5-10

 5 I saw Father Adam and Abraham; and my father and my mother; my brother Alvin, that has long since slept;

 6 And marveled how it was that he had obtained an inheritance in that kingdom, seeing that he had departed this life before the Lord had set his hand to gather Israel the second time, and had not been baptized for the remission of sins.

 7 Thus came the voice of the Lord unto me, saying: All who have died without a knowledge of this gospel, who would have received it if they had been permitted to tarry, shall be heirs of the celestial kingdom of God;

 8 Also all that shall die henceforth without a knowledge of it, who would have received it with all their hearts, shall be heirs of that kingdom;

 9 For I, the Lord, will judge all men according to their works, according to the desire of their hearts.

10 And I also beheld that all children who die before they arrive at the years of accountability are saved in the celestial kingdom of heaven.

Contributed by Christopher Holt

Sorry I haven't sent out many updates lately. Sometimes the changes although good seem so small that there isn't much to say. Of course not all the news is always good. But over all things are getting better. She has had some additional strokes since she has been here. As far as we know no additional damage. So they changed her medicine and the MRI from yesterday showed no change which is good. She will probably leave ICU tomorrow to an intermediate care room for the weekend. Then if all goes well onto rehab on Monday. She is getting stronger on her right side and talking more although we still can't really understand her yet. She can eat pretty well with her left hand and has even tried writing her name. She can read and pick from the menu what she wants to eat.

Contributed by Amy Lilly