Sunshine

I saw my brother this weekend for the first time in several weeks. It's hard not to see him for long stretches because I rely on other people for updates, but at the same time, I get to see his progress more dramatically. As Amy mentioned in her post last week, the biggest change is in how alert and awake he is.

My mom and I arrived yesterday to find him with his eyes open. Recently, his open eye moments have been much more frequent, and yesterday, he spent the majority of the time with eyes wide open. Sometimes he looks at us, sometimes he looks at the tv, and he seems to really focus on pictures when we show them to him.

Accomplishments lately include: pointing his finger on command (he only did it once, but he did it fairly quickly after I showed him what I wanted him to do), moving his legs on command (thank you Jimmy!), and generally following commands more frequently. The nurses and therapists will tell us "he squeezed my hand when I asked" - it's nice to know other people are having success with commands as well.

Today was the first day Aron has been outside in almost three months. After a lot of maneuvering, Aron was outside on the patio. It is a beautiful day today, and it was nice to be able to spend some time with him in the fresh air with fewer disturbances. Some friends from church and Griffiths Middle School visited, and he did a thumbs up a couple of times for them, one time almost immediately after I asked.

These recent developments have me thinking. He can hear us, that is certain, and he is sometimes able to act upon what we tell him. Now more than ever, is the time to speak positively to him. We've been encouraging him each time we see him with his eyes open. We tell him he is getting better, that he needs to keep trying, and how much we love him.

Every evening, my mom is at the hospital, and there is almost always someone there from our family or Amy on the weekend. If you want to spend some time alone with him, he doesn't have people with him on weekday mornings and early afternoons. If you're there with him, this is what we'd like to request: speak positively - it is ok to tell him he had a a skateboard accident, but be sure to tell him he is getting better. If you'd like to try to get him to follow commands, stick to simple things and stay on the same one (for example, don't ask him to do hands, legs, ect, all at the same time, just work on one thing and keep repeating yourself.)

As far as prayer: my family, Amy and her family, and Aron's friends are appreciative of everyone's constant support. Specific things to pray for now: first and foremost that the function in Aron's brain is restored. We are also advocating that Aron be approved for more therapy now that he is more awake, please pray that he is approved for this and can benefit from the extra stimulation. We feel Aron is very close to being considered for relocation to an advanced rehab facility. Please pray hard that Aron can wake up enough to be transferred to rehab. When we compare where we were a month ago, Aron has made major progress - please pray for progress progress progress.

On a personal note: lately random memories of Aron have been popping into my head, things I haven't thought of in years - his escapades with explosives and the time he almost blew up the pool, the summer he decided to learn how to ride a unicycle, the time we were pulled over and almost arrested on Christmas day night (remember, Jordan?), the time he decided to stop brushing his hair to see if he could grow dreadlocks (there were three), the bowling scores and quarter mile times he would stick to the fridge, following him down double black diamond runs - I could go on forever. I realize that many people reading this blog have all kinds of memories with him too. I ask that when these things do pop into your head, that you send up a prayer rather than getting sad. It's what I'm trying to do rather than sinking into my sadness. We all miss him so incredibly much.

Praying for Miracles

After being at school all week, I was able to see a big improvement in Aron’s alertness. He has been opening his eyes for longer periods of time and is now better able to track our movements when he is alert. Also, when we ask him to look at us, he will turn his head and focus his eyes on our faces. I also feel that Aron is sometimes able to recognize who we are.

For yes or no questions, we have been working with Aron to nod and shake his head appropriately. It still takes a lot of effort and is a work in progress, but he is improving. On Saturday, the nurses got to see Aron alert. He tracked their movements with his eyes, squeezed their hand on command, and gave a thumbs up in response to a question. Although none of this is new to us, it was good for the staff to get to see Aron’s progress for themselves. To them, our observations do not mean much until they witness it.

Aron has now been off the ventilator for almost a week. He no longer is on the cool aerosol but instead has a tube of oxygen, which is one of the last steps before being completely disconnected from any breathing tubes. The next step is to take him off the trach, when he is able to breath through his nose and mouth. When the respiratory therapist plugs the trach to test this, Aron has trouble breathing through his nose and mouth because of an obstruction in his airway. This could either be from his tongue or from the trach itself. There are different types of trachs, and they are going to try a speaking trach so that he will be able to swallow on his own. Once Aron is off the trach, he will have to move to a different facility. We are hoping that Aron will be more alert before he is able to be off the trach. In which case he will be able to transfer to a better facility that is more equipped for rehabilitation.

Please continue to pray that Aron will become more alert and more responsive, especially before they take him off the trach, and he is forced to move to another facility. Also, Aron’s parents are advocating for insurance to allow him to have a cranioplasty, a surgery that will replace the part of his skull that was removed to relieve the pressure in his brain. Please pray that Kaiser will approve this surgery with the doctor we want. Right now Aron’s brain is vulnerable and mostly unprotected without the skull cap on his forehead. We all will feel more comfortable after the cranioplasty.

I was reminded by our pastor today in our church sermon that we should be praying for miracles both in and through this situation. Meaning that we should continue to pray for healing and full restoration, but also for miracles in our own lives and the lives of others touched by Aron—that we would grow in love and patience and that others would come to know the Lord. Thank you again for your support and prayers, especially to those who have come alongside us as encouragement and comfort.

—Amy

Psalm 130—Out of the depths I cry to you, O Lord; O Lord, hear my voice. Let your ears be attentive to my cry for mercy. If you, O Lord, kept a record of sins, O Lord, who could stand? But with you there is forgiveness; therefore you are feared. I wait for the Lord, my soul waits, and in his word I put my hope. My soul waits for the Lord more than watchmen wait for the morning, more than watchmen wait for the morning. O Israel, put your hope in the Lord, for with the Lord is unfailing love and with him is full redemption. He himself will redeem Israel from all their sins.

Cool Aerosol

Since Tuesday Aron has been off the ventilator, he is going through a a cool Aerosol trial. This is a combo of oxygen and normal saline. Right now he is on 20% oxygen but the machine has not breathed for him since Tuesday! Normally, when they transition a patient from a ventilator to the cool Aerosol, they know within about 30 min if they can tolerate it. Aron made it past that mark and is still going strong. Last night Jimmy and I went down to see him and he had his eyes open again. I noticed he can track with his eyes far better now than last week. Jimmy brought Aron some Starbucks coffee beans, and it seemed that Aron could smell them (Aron Loved himself some coffee). Once again, we are thankful for progress that brings Aron a little closer to us each day.

Please keep praying! Thank you all for your support.

-Jordan

Engine Firing Order Sparks Response

1…8…4…3…6…5…7…2

For most those numbers don’t mean much, but to Aron that sequence is engrained into his mind. Those numbers constitute the engine firing order for a small block Chevy, and they sparked a response for Aron. Tom, Aron’s dad, asked Aron to keep his thumb down for an incorrect answer and raise his thumb for the correct answer. He gave Aron the number order and asked if that was a phone number, and I could see Aron firmly pressing his thumb down. Then Tom asked if that was the engine firing order, and Aron resolutely raised his thumb.

We were all very excited and were praising Aron and telling him that he’s doing a great job and making us happy. Then Aron decided to open both his eyes wider and try to stick his tongue out—it seemed as though he was excited that we were happy and wanted to do all the things that make us happy at once!

We continued to ask Aron similar questions—what year is your race car, what day is your birthday, what year is your wagon, etc. For the most part Aron continued to correctly answer the questions, but after a while he seemed to get tired and his responses got slower and slower.

Aron had his eyes open for quite a bit, and we put his glasses on to help him see better. It seems like he is able to follow our movement a bit more. We asked him to nod his head if he could see me, and he attempted to do so. We’ve been working with him to nod his head “yes” and shake his head “no.” When we ask him to, it’s clear that he’s trying, but it takes a lot of energy and is still difficult.

As far as the weaning off the ventilator, Aron has been doing well but still has a little ways to go. He was able to successfully tolerate a gradual lowering of the breath rate on the ventilator from 16 all the way to 4—and able to compensate by initiating his own breaths. The next step is to put him into CPAP—a mode where he is hooked up to the machine but is breathing on his own. The last few days they have put him into CPAP, but he was not able to tolerate it. They moved him back to 6 breaths per minute because his breaths were too shallow and not consistently high enough. So please keep praying that they can finish weaning Aron off the ventilator.

On a personal note, I am moving to Malibu to start Law School at Pepperdine tomorrow. This has been a prayerful decision, and I feel a peace that law school is still where God is calling me to be. I also believe that Aron would want me to continue to pursue my dreams and passions. In many ways this is a leap of faith for me. As badly as I want to be there for Aron everyday, I’ve realized that whether I am at the hospital or not, Aron continues to remain in God’s hands. I will come home on the weekends as often as possible to still support Aron. Thank you to everybody who has prayed for this decision and helped me process everything that is happening. Also thanks to everybody who has continued to visit Aron. He needs friends and family now more than ever, and I know that if he could thank you, he would.

Please keep praying and trusting the Lord. Thank you all for your comments and encouragement. I love hearing stories of how God is working in the midst of this tragedy. I feel like it gives us glimpses into God’s bigger picture and plan even in the midst of our pain.

Psalm 27:13-14—I am still confident of this: I will see the goodness of the Lord in the land of the living. Wait for the Lord; be strong and take heart and wait for the Lord.

-Amy

Open Eyes - Once, Twice, Thrice

Today when I went to see Aron, he had his both eyes open. I was able to talk him through a few commands and he responded. He was able to flatten his hand out a few times and when I asked him to blink 3 times, he also responded. Then asked him to blink 5 times and he got to 4. After all that activity, you could tell he was taxed so we gave him a break.

Later on that evening, he opened his eyes again, I was looking into both eyes and asked "Aron, its Jordan. If you can see me, blink three times hard." Almost immediately, he blinked three times! It was a determined and decisive action. Needless to say, it was hard to contain our excitement after his response.

Things like this are truly answers to prayer. We need to remember that Aron continues to show marked improvement and not to despair. Keep on praying and have faith, it helps more than we can know.

Love you Aron, and I can't wait to talk to you.

-Jordan

Thumbs Up and Tongue Out

Today Aron gave us a “thumbs up” on command. This is great progress and is a reflection of his increasing ability to respond quicker and in a more controlled manner.

I want to explain a little of the context of his responses to give everybody a better understanding of where Aron is at in terms of progress. We spend long hours at the hospital talking to Aron and encouraging him, and occasionally we get moments where he is more alert and able to respond. Much of the time Aron just seems to be resting, so we play music for him and do our best to take care of him through range of motion etc.

The good news is that although it still takes lots of time, Aron has been responding quicker than before. Initially it literally took hours of asking and encouraging just to get him to move his thumb. Now he sometimes wiggles his thumb within a minute. For Aron to give the “thumbs up” today I first asked him to wiggle his thumb, and after he did that I asked him to give a “thumbs up.” Then I explained that he needed to straighten his thumb and curl his fingers into a fist, and he slowly and deliberately followed my instructions within just a couple minutes.

As I was writing this, I just heard from the Shubins that Aron stuck his tongue out on command! The first time he stuck it out, then yawned and did it again, as if to show off. Jill said it seemed like he was happy to be able to do something that made them happy. Aron also has been opening his eyes a few times throughout each day. It still takes lots of effort, but he’s doing it.

On another brief note, Aron has a blood clot in his right arm. It’s not in an artery, which is good, but it’s still a concern. He also had an organism in his blood, but he is being given antibiotics. The doctors now think the organism was in his picc line because once they removed the line, they couldn’t detect the organism in his blood anymore.

Please keep petitioning God for miracles—for returned function to Aron’s brain, and increased ability to respond, and that God would be glorified.

Isaiah 26:3-4—You will keep in perfect peace him whose mind is steadfast, because he trusts in you. Trust in the Lord forever, for the Lord, the Lord, is the rock eternal.

-Amy

quick update

I just wanted to let everyone know how Aron's doing - I know people check this blog daily. This past weekend we saw improvement in the time it took Aron to respond to a command ("move your thumb", "raise your arm"). He also had a lot of open eye moments. The open eye moments don't necessarily correspond with the command following moments - it seems like right now one thing is about all he can handle at a time.

Last night, we think he responded to a question with eye blinking. A therapist was working with Aron, and he had his eyes open. The therapist said, "blink if you hear your mom" and Aron blinked in rapid succession. We are hoping and praying that this was a response, and that we will see more of this type of behavior.

Please continue to pray for my brother - we feel he is making progress, and he needs to continue along this path. We remain hopeful and positive. We just need to keep reminding ourselves to be patient.