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.