June 22 - Day 127

I'm doing my best keep everyone updated while juggling visitors, participating in therapies, and trying to spend some quality time with Brian in between his sessions (on top of trying to plan the unforseeable future and research on potential next facilities). But I do think it's important to keep everyone informed so here's the latest:

• Today the doctors have increased his dopamine medication to the maximum dosage, in addition to a few other meds to help decrease his muscle tone.
• Yesterday he scored 3 more points on the rancho scale! (the Rancho Los Amigos Levels of Cognitive Functioning Scale is a renowned clinical tool used to rate how people with brain injury are recovering. The ten levels of recovery noted in the scale also help to decide when a patient is ready for rehabilitation. As patients "wake up" after a head injury, they go through different levels of recovery on the Rancho Scale. Each level describes a general pattern of recovery, with a focus on cognition and behavior).
• AKA they were able to get increased responses from him - the things I was present for included improved visual tracking, vocalizing sounds, localized responses to pain, and when asked if his name was Brian, he appeared to wave his hand (though we aren't sure if this was a direct response it was still a new movement). He also appeared to attempt unbuckling himself from his harness in his wheelchair.
• He grabbed a spiky rubber ball off of his stomach after the therapist rolled it around and asked him to grab it. He completed this 3x! They captured it on video for me and it is definitely the most complex response we have seen!
• The therapists used a specialized chair to put him into a standing position, which was his first time standing almost 90 degrees (assisted).
• He followed a music video on a phone with his eyes from left to right and back again one time.
• He now has a one way speaking valve placed on this trach. The next step is capping, and the final step would be removing it all together!
• During speech therapy, he completed 15/15 swallow tests (they put an ice cold spoon in his cheeks to trigger saliva generation and then wait to see if he will swallow on his own. He has always done well with this).
• Speech therapists have also noticed his jaw/clench is not as tight as it used to be and are able to brush his teeth more easily now.
• His blinking & visual threat responses have improved significantly. He even responds/flinches when I come at his eyes from the side, which means his peripheral vision is coming back.

Last week, while trying to research post acute care facilities, I decided to join some support groups online to get advice & feedback, hoping it would give me some clarity on what to do once we are discharged (we got the full 4 weeks for now). It really negatively impacted me to read what other people are going through with their loved ones who suffered a TBI, not to mention the mixed reviews on facilities that made everything feel more overwhelming than before. For two days I sobbed and pleaded with God - asking for clarity, to guide my steps & decisions, to guard my mind and heart - to wake & heal Brian! I feel so far gone from our former life, from feeling joy, from the 'normal' things. But then a woman in the forum posted that her husband got accepted into the same facility in Chicago as the one Brian is at and she will be transferring him this week. She asked quite simply if anyone else had experience there. I private messaged her and we quickly bonded and setup a time to meet for coffee. She reassured me that our husbands will be okay and that we can pray together for them -- while I reassured her that she will be in good hands and I will happily show her around the city and give her any insights I have on the facility here (they're coming from KY). After keeping in touch with her the past couple of days (and seeing her pray for Brian on her FB page while she prayed for her beloved husband) I realized that I needed to sit in the hard stuff on those support groups for a little while, face it head on, and then God stepped in & introduced me to her and I believe that was the sole purpose of joining. Because he introduced me to someone that believes and agrees with me, that our God is bigger and is able. He will make a way.

Meanwhile, all of the other angels on earth I / we have encountered along the journey, including everyone that reads this blog, prays with us on Sundays, and has been with us since day one (friends & fam, I'm looking at you) have played integral parts in reminding me of that. There are things that are timed so perfectly, and words that are delivered to me at the exact right time (sometimes the SAME verses from multiple people on the same day) that remind me how near God is to us. And yet when I lay my head down each night and look at Brian's empty side of the bed, I still pray to God to help me with my unbelief - because I see all the signs, I witness all the progress - but going home alone and not talking to Brian for yet another day...minute...month...still aches in deep my heart and quickly makes me forget all the good things that God has provided every step of the way. So I believe, but God, help me with my unbelief. 

Yesterday, the chaplain from the hospital came to sit with me. She brought me a beautiful knitted shawl from her church that was blessed and prayed over. She also gave me a little devotional called "Your Daily Bread" (which is a concept I just now started understanding about God...he doesn't give us our weekly or monthly bread, but just enough for today). We had a really nice conversation about prayer and healing. I told her I believed that this is all on God's timing, not my own or Brian's own. At that exact moment I got a text from a friend with a quote that read "my heart stops rushing when I remember the timing He has chosen for me is greater than anything I could come up with on my own." And then this morning I woke to another text from another dear friend and prayer warrior for us - and she said the Lord delivered this verse as a reminder to me (a verse I shared on day 111):

"The Lord will be your everlasting light, and your days of sorrow will end. They are the shoot I have planted, the work of my hands, for the display of my splendor. The least of you will become a thousand, the smallest a mighty nation. I am the Lord; in its time, I will do this swiftly." -Isaiah 60:20-22

I don't believe in 127 days of coincidences or luck. 

I do believe that God is coming to the rescue, and its on display in many different ways; through dreams, prayers, scripture, perfectly timed texts, friends / company, special people in health care that truly care for us (btw I have yet to see Ashanti again so I'm starting to wonder if she really was an angel lol), clouds (Kathy 😉), meeting a stranger in a support group that is also a newlywed experiencing this heartbreak, and inexplainable strength to endure this day over day (surely this is God's strength and not my own). 127 days of trusting God, asking for help, and logging all the good in the day that he provided (daily bread). When we open our eyes and list the things we are grateful for, every day, it's then we can stay hopeful and grateful despite our circumstances. I'm learning this slowly but surely.

Please pray for Brian's continued emergence to consciousness. That his healing leads him to complete & miraculous recovery. That the dreams in both mine and Brian's hearts, were set there by God, and that he will fulfill his promises to us...for hope & a future. I need to see Brian return to his full self and my prayers wont be for anything less. Lord, let that day be soon, because I really miss Brian. I really miss my best friend, and I really would love to grow old with him in a meaningful way, the way we imagined & promised we would (with many adventures in between) on our wedding day. Thank you for choosing me to be his wife. Please continue to protect and heal him completely. Amen.