Here is an update on Elijah from Brenna, his mom. This was written over the course of the past four-ish days, with updated snippets inserted where necessary.
I got to spend a while chatting with Grace, Elijah’s 16 year old sister, yesterday evening. We were talking about the immensely cheering progress in communication that Elijah had shown earlier that evening, and Grace made the statement, “I wonder if Elijah saw Jesus while he was in his coma? Because we sure did.”
We sure did. That summed things up for me. We’ve watched these families walk through awful moments, where we on the outside wanted to hit the stop button, or the rewind, or the fast forward –anything that would get these dear friends out of the crushingly overwhelming now. But Jesus’ way and His time-table is always reliably the best way, and truly, we’ve seen Him. Enjoy the update –and please keep praying!
“It has been a long time in between posts! Thank you for the texts, prayers and visits in between! It seems to take us awhile, as Scott referenced in his post about moving Autumn home, for us to get up to speed when we make a significant change in our living arrangements. Craig is a bustling place and it took us awhile to get our legs under us, so to speak. In this journey Craig was always the light at the end of the tunnel. When we arrived reality hit and we realized that the tunnel will be much longer and the light is a bit farther away than we expected at this point. It reminds me of ski trips that I used to make with my neighbors. I was raised as an only child of older parents. Winter weekends would find me accompanying my next door neighbors on ski trips to Idaho, Colorado, Utah and Montana. In early elementary school it was always my habit on long trips, to query “How much longer?” or, “How many more miles?” My own dad was used to these questions and was quick to provide an answer, but my neighbor dad found this to be a bit of an annoyance. I lacked patience. Indeed, I am finding that I still lack patience. Truly I often want to ask my Heavenly Father how many more miles? or, how much longer until we are at the end? I am reminded that this too shall pass and to take a deep breath and be grateful.
We are blessed to have a one-bedroom studio apartment that is part of Craig Hospital. It has been nice to not have to navigate traffic to get here to see Elijah and to have a place we can all be together. We even did a very normal thing today (Saturday, 7/18) and went grocery shopping… while we were walking the aisles I heard Ezekiel (age 10) singing! We are glad to be together and do some normal life. We have been together for a whole week. While it is not always a cakewalk, we are together and still have some happy times. We have our bikes here and have found a few trails and we take a break while Elijah is in speech or rest time. For exercise we climb the parking garage stairs twice. That is 14 flights with two sets of stairs for each flight. Saturday we bought Craig T shirts since we are spending 3 months of our life here (been there, done that, bought the T-shirt).
This has been a big week in many ways. For a while I wasn’t sure if I would ever have enough energy or insight to write a post again. I know that many of you want to know how things have gone, so I will try to provide a summary without injecting too much personal commentary. . .
Settling in at Craig:
We arrived early (10:30 a.m.) on the 7th of July. The arrival was bittersweet as we passed Swedish hospital where Elijah was born 19 years ago. Craig is situated on the next block. Thankfully, the Lord did not reveal the future that we would face 19 years later! It truly has been a wonderful 19 years with this guy. The next few days involved learning the ropes of the Craig system, meeting doctors, therapists, social workers, neuropsychologists… etc. Elijah also had to undergo all of the tests again: MRI, X rays for 3 hours, cat scans of his feet, EEG, EKG. The initial therapy sessions involved the therapists familiarizing themselves with Elijah and his abilities/deficits to obtain a baseline. These were mentally and emotionally challenging days to again see Elijah through a professional’s eyes.
Elijah was talking (and quite a few large sentences ) up until Friday the 10th. The doctor removed one medicine from his regimen (yea!) that was causing some unwanted movements. For the past 3 weeks or more Elijah had begun a kind of rocking motion (like ab crunches) but these had become very regular and were keeping him up at night as well. After the removal of the medicine, he was able to relax and, although he still prefers daytime sleep to nighttime, he is finally able to settle down. The downside to the med change was that he became very apathetic, sleepy, inattentive, and has stopped talking altogether. Most of last week he would not even hold his head up. Because of the drastic change, this week was rather intense in terms of walking in faith. Faith is the substance of things hoped for, the evidence of things not seen. We were being challenged to walk by faith and I confess that I wasn’t always passing the test. I realize that in real time one week or 10 days is not that long, but we eat, sleep, drink, breathe and live Elijah’s recovery and sometimes I could not see the forest for the trees.
Friday was a bigger day of changes and so I feel as if there is more to write about. I must say Elijah has a great team of therapists who day after day cheer him on and challenge him.
- Casts: Elijah’s OT, especially, has championed his cause and surprised us by making a drop cast for his right arm. His arms still have a lot of tone and prohibit him from using them in any purposeful manner. For a layperson this means that his biceps, brachialis, subscapularis, pecs and other muscles are very tight and pull his elbows to an angle smaller than 90 degrees. The drop cast stops the upward contraction but allows him to drop his arm lower because there is no casting on the underneath side. Already his arm is much more relaxed. As it relaxes she will recast at a greater angle.
- Botox and Phenol: These are the injections that Elijah will have to aid in the recovery of movement of his arms. They won’t help him move, but will help him have a range of movement as the motor neurons connect to help him move. The phenol is injected into the nerve of the brachialis (the musculocutaneous nerve?) It will actually kill the nerve and a side effect can ironically be nerve pain. The nerve will eventually regrow but in a more branched manner and the growth will be slow. This will release the contraction of his brachialis muscle and Lord willing provide more functional movement of his arm. Some muscles will have botox injections. Similarly, these will cause the muscles to relax but the effect is more temporary. The effect of this procedure will peak at 3 weeks and will last for 3 months. Hopefully by then he will have resolved some of the motor apraxia to regain movement.
- Motor apraxia?? Yes. The doctors have reiterated that, while fatty emboli syndrome is uncommon (30% or less of long bone fractures), the severity of Elijah’s FES is even less common. We keep hearing the words catastrophic and diffuse. Apraxia is caused by a disruption in motor planning because those pathways have been damaged. What happens is that movements are difficult/impossible to make and often if one movement is established then it will become “stuck”. We have seen this at times with laughter. Elijah has a very congenial and content demeanor and his smile is contagious. Sometimes he gazes intently but often he is smiling or laughing. While the laughs are often at appropriate situations or statements, we have noticed that he can become stuck in this and get the giggles. An apraxic can often open their mouth but when told “open your mouth” are unable to do so (this can also be tangled up with a language disruption called aphasia). Thus the muscles are fine but the impulse to move the muscles is disrupted or detoured due to the injury. Initiation of movement is also a challenge with apraxia. This is very frustrating for the apraxic as they know what they want to say but are unable to send the motor pattern. We feel that we have seen this frustration with Elijah this past week especially. Elijah is able to initiate some inconsistent movement with his left fingers, his right leg is moving quite a bit and he is able to push and pull with both legs with some delay and of course they are weak. He has been standing in braced structure this week and also pedaling a bike from his wheelchair. So, our God is bigger than apraxia/aphasia and can make new connections for Elijah- would you please pray for him? Of course we desire for him to move his arms and fingers more readily but his ability to communicate would make all the difference for him and for us. (update: Friday night we were in the garden area, and singing songs. Elijah was able to sing two words to our song and another one word for another song. It is so great to hear his voice again.)
- On Sunday we had a room full of people (family, Haley, and Sally, her mom) and Elijah spoke abundantly and clearly. He did a great job with his initiation and said things like “That is something that requires much consideration on both sides,” and, “I’m a betting man, so I think short and curly hair looks good” – when Sally asked if he liked her new “do”. When one friend threatened to draw a flower on his cast, he said, “I would prefer something a little less feminine.”
- Feet: His feet are a concern for PT as his left foot is unable to get to neutral (as in standing). The fracture he sustained is a Lisfranc Fracture and dislocation: the kind that people get if they fall off of a horse and their foot remains in the stirrup. They have consulted the orthopedic doc who specializes in feet and did a CT scan of his feet, thinking that he may need more surgery. (update: Monday in PT they did almost get his feet to neutral in the standing frame and the PT was encouraged by the progress.)
- Discharge Date: Because of the severity of the trauma that Elijah has survived (by God’s grace!), the doctors here have recommended an extended stay with a possible discharge date of September 23. Probably 7 weeks in a hotel… wow! We of course wish that the process would be quick but the realization that we will probably have to take him home in a wheelchair is just now hitting us and we know we have a lot to learn and prepare at our house in Cheyenne.
- Friends who still remember us!! Thankfully too, we have friends down here through speech and debate. We have a special family here that has visited often and brought us a picnic meal one beautiful evening. Last year we celebrated Elijah’s birthday with them while we were at Nationals for Speech and Debate in California. Also another friend has offered her house for us to stay in and still others have offered to help give us a reprieve if we feel the need. We have had friends from Cheyenne come almost everyday and that has been a blessing. One friend took over with Elijah so that I could spend 2 hours with my other kids and another time we went to lunch as a family. We also have had friends come to help out with the younger kids for just a few hours while Randy works.
- Elijah’s swallow reflex was never compromised as it can often be with head trauma. He eats normal food and has no tube feeding.
- Elijah gets to come to our apartment – that is so cool.
- God’s strength for each day. On Thursday I was exhausted and I told one friend that if I could quit, I would. That is an obvious character flaw. The fear of the future and caring for Elijah at home was overtaking me. Since that time I have had some time with the Lord and do feel renewed as I wait expectantly for what He will do. I remember the post from the RN who attended the scene of the accident when she is reminded by God to wait and rest, He has got this under control. Also, I am reminded of His goodness to us throughout this journey and providing encouragement at just the right time. We are grateful that we serve a mighty God and strive to love and serve Him daily. “Gratitude always leaves us looking at God and away from dread. It does to anxiety what the morning sun does to the valley mist. It burns it up.” — Max Lucado
Here is a list of prayer requests for us:
- New neuron connections and victory over apraxia – Elijah to regain consistent communication and movement in his arms and fingers.
- Strength and energy to manage the days- with wisdom and discernment and hope.
- For Grace, who at 16, is traveling a very different road from her peers and is handling it with such poise. It brings back memories for me as my parents died when I was 17 and 18 and I also traveled a very different road – which was how I met Jesus. Thankfully Grace knows Jesus. She has been very strong and sacrificial but please pray for her as she is away from her friends and piano. I am sure some days are harder for her than she would ever say.
- Movement for Elijah’s whole person.
- Wisdom for how to manage our marriage, kids, house, school etc. and not to reside in fear of the future unknowns.
Enjoy all of the beauty of the summer days! God Bless.”
~ Brenna (for all)