RSS Feed

Tag Archives: Simon’s Story

Simon’s Story: Part Eight

If you missed part one to this story, you can find it here.

When we arrived home, my mom was there with the video camera and Simon hesitantly tottered into the house. He didn’t seem afraid to be there, but he did seem apprehensive. All of this faded away as soon as he saw his best friend, Liam, waiting for him.

The next couple of weeks we returned to “normal”. It’s very strange how you pick up right where you left off, even though you are completely on the edge emotionally. Simon had trouble sleeping at night, I believe from the trauma of being hooked up to machines almost 24/7 and having nurses poke and prod him at all hours, but for the most part he slept soundly.

Oddly enough, he used to be an avid thumb sucker and after the accident, that habit never returned, possibly because he favored his right thumb, which is on his weaker side.

I returned to work after only having missed a couple days while being in the hospital, but had a hard time focusing. It is a very strange feeling to go back to “normal”. Perhaps this is a form of post-traumatic stress.

We were incredibly blessed by people bringing us food every night for a while, which helped us get back into a routine and spend more quality time hanging with our boys.

I haven’t had stress or panics in the bathroom/hall where the accident happened, but there are occasional times when my heart panics and I freak out imagining Simon falling off of something. Once while we were at the splash pad near our house, Simon slipped, not hurting himself, but I ran and scooped him up while trying hard not to bawl my eyes out.

Jesse and I do our best to act normally around the boys and not make big deals out of little accidents, so as not to freak either Liam or Simon out. They are both pretty rough, like most boys, so we know little scrapes and head bumps are normal.


(wrestling the day after he came home from the hospital)

Simon’s speech and fine motor have returned to above normal age-range, but he still has weakness with gross motor activities, mainly running and jumping. Because of the weakness on his right side, he goes up on his toes when trying to walk. He attends physical therapy for this, but we also feel that the best thing he needs is time. We know his brain will heal, since he is still so young and when he gets older he’ll be able to understand us when we say “no toes”. He also needs time to build up his core muscles to help his balance, so that he won’t fall all the time.


We ultimately trust in our Heavenly Father and are extremely thankful to get to spend more time with our beautiful boy. Simon is a sweet, silly little boy and with his personally I’m sure he’ll be the class clown at some point in his life. He has an amazing ability to make faces and make people laugh.


We are thankful for the relationship between he and Liam and believe they were bonded closer because of the trauma they faced together.


The THANKFUL list (in no particular order):

-that this happened while I was on Christmas break and only had to miss a week of work

-family and friends being so helpful with meals, Liam, support, etc.

-the amount of others (friends, acquaintances & total strangers) that supported us through prayer and financially, helping us to cover our bills, including most importantly money for gas to get to the hospital and back.

-the nurses/doctors at Palomar for reacting so quickly to Simon’s situation and getting us the help we needed.

-Electricity and machines for supporting Simon as he healed from surgery and gave us the answers we needed to save his life.

-the amazing nurses and doctors at Rady’s who were INCREDIBLY skilled, kind and caring.

-Kaiser allowing us to go to Rady’s Children’s in Oceanside for physical therapy, so that we don’t have to go to a PT for adults or drive down to San Diego. We are the only people they have ever let do that (I don’t know why, but I’m not asking questions).


-Simon’s sweet little voice. Every time I hear him speak, I smile.

-Health insurance. If we didn’t have it, I have no doubt that we would have lost our car, house and everything else we own.

-My job that gave me the knowledge to do speech therapy on Simon while we were in the hospital.

-Facebook/Instagram for being able to spread prayer requests/pictures quickly and across the world.


-My husband for turning to God in prayer during this difficult time and taking such great care of the boys every day.

-My awesome iPhone with the stellar camera for the ability to take pictures (instead of carting around a giant dslr) and be on the internet (instead of a laptop).

-The Ronald MacDonald house for providing shelter and food for us during such a hectic time.

-The relationship between brothers to act as a friendship and model for the correct way to walk & talk.


-And finally, and most importantly, God for protecting our son and restoring him to us. We know that Simon is here for a reason and believe that God has big plans for his life.

I hope this story moved/strengthened/encouraged/uplifted you and that you hug your kids/niece/nephew/grandkids a little tighter and never take them for granted. Feel free to share this story with whoever you think would like to hear it! šŸ™‚

Simon’s Story: Part Seven

If you missed part one of the story, you can find it here.


The next day, January 17th, I returned to work and Jesse went down to be with Simon in rehab. It killed me being back and I probably didn’t do my best work because I was so distracted. I was running out of sick days though, so it was a necessary evil. My students were incredibly supportive and all of them had written me individual letters in my absence.

The support of my coworker, Kathy, especially got me through the next day when Simon went in for surgery to get his bone flap put back in. It’s not like I could have done anything being down at the hospital, but it was incredibly hard not being there. I broke down crying more than a few times that day at work and Kathy was really supportive and understanding. The surgery went really well and they extubated him quickly, which was a huge relief. They took him to PICU to recover overnight.

That night, I had bible study with my close friends at my house and I told them about my day. I explained that I felt like I was at my breaking point and couldn’t even go back down to the hospital until Simon was back in rehab. I couldn’t return to PICU because there were so many hard memories attached to it and I didn’t have the strength to do it. It’s hard to explain, but it’s as if there was a mental block combined with massive amounts of stress that made me have a near panic attack even thinking about going back to the hospital let alone PICU.

Almost as I finished explaining this, I got a call from Jesse saying he was going to be sick and that I needed to come down, so that he could come home. My wonderful friends prayed for me as I thought like I might lose my mind and then they stayed with Liam until Jesse got home. It took all of my strength to go back to PICU that night to see Simon in a drug-induced coma with his head wrapped up and once again hooked up to a lot of machines. It is true that God gives you strength you don’t think you have to do things that feel completely beyond your own human capacity and I did my best to lean on Him for that strength.

Jesse ended up pulling into the driveway that night, opening the door and throwing up on our front lawn. One by one, we were all coming down with this evil flu. My mom and sisters were also fighting the bug at this time.

Simon woke up happy, as long as I was holding him. He wasn’t a big fan of being hooked up to all the machines again, nor was I as it made it really difficult to hold him. Again we waited for them to move us to rehab and again it took all day.

Simon story 30

Finally that evening we were moved back to rehab.

Simon story 31

This time we were on the other side of the building and now had a view of the playground below us.

Simon story 32

At this point, we were thrilled at how well Simon was doing with therapy and we were completely ready to go home. Now that the bone flap was back in, we just waited for the approval that we could be released. Again, we spent our time roaming the halls, trying to keep ourselves busy.

Simon story 33

Very early the next morning, Simon woke up crying. Because I wasn’t ready to be awake yet, I stumbled over to get him out of his bed and rolled his machines over with him to my bed. I lay down with him and a mere five minutes later, Simon threw up all over me. With both of us covered in puke, I again paged the nurse for assistance. As soon as we got cleaned up, Simon seemed fine and even ate a little.

Simon story 34

He was incredibly tired though and spent most of the day sleeping with me holding him. My arms got super tired and it was difficult to get up to go to the bathroom with a kid that wouldn’t let me put him down without screaming, but I relished holding my baby.

Simon story 35

Simon definitely had the evil stomach bug, but because he had just had surgery, they were hyper vigilant over him. They needed us to make sure he was eating and drinking, otherwise they were going to have to hook him back up to a feeding tube. We are normally very cautious about what our kids eat, but because of the situation, we were trying to get him to eat or drink anything, including soda, which he wouldn’t take. I can understand when you feel lousy that you don’t have an appetite, but it was very frustrating that this evil flu bug was holding us back from being discharged when all we wanted to do was to go home to be sick and recover.

Simon story 36

Liam and Jesse came down to visit that day and Simon perked up at getting to see his brother, but still refused to eat anything.

Simon story 37

(this is the giant smile he had when Liam walked in the room)


It is true that God doesn’t give you more than you can handle and we hung in there and tried to be thankful for the fact that Simon fighting this flu meant that he was alive to be able to fight.


I took Liam home that afternoon and he was also sick. We took a short walk to stretch our legs, but for the most part, we lay on the couch watching movies and eating Top Ramen. In a way, it was nice to be lazy, but I yearned to be active, healthy and “normal” again.


The next day, January 22nd, they took Simon’s IV out. They said that if he showed that he was eating and drinking, we could be discharged by 4pm. My parents came over to our house to be with Liam, so I could head down to the hospital to wait to be discharged. The doctor came around 11:46 in the morning to sign our papers and we were released from the hospital.

It is very anti-climactic to be released. There isn’t really anyone there to say you can go, help you out or say goodbye. After you’ve been through this traumatic period, you sort of expect a party or a parade to wish you farewell and escort you to the car. It was completely the opposite. We quietly packed up all of our stuff in the wagon that we still held ownership to and carried Simon out the hospital doors.

Simon story 38

It was a wonderful feeling clicking him into his car seat and knowing we were headed home. As we drove up the freeway, Simon pointed out all of the trucks and I cried happy tears knowing he was able to see, move his body freely and communicate his feelings, all of which I had taken for granted a mere twenty-six days before.

Thanks for reading! The final part of the story will be continued this Wednesday!

A Fashion Community

I love fashion because it is my palette. I am not a very good artist, but I LOVE to create. Fashion allows me to mix colors and patterns and has an endless amount of possibilities for creativity.

But the biggest reason I love fashion is the community that it creates.

Every woman can talk about something fashion related, whether they know a lot about fashion or very little. I love standing in a clothing store and having someone comment on what I’m holding. Fashion is an ice breaker and allows for conversations and relationships to begin.

I love sending texts to my friends of cute things I’m thinking of buying and getting their feedback. And most of all, I love when they trust me enough to send me pictures of their outfits and askĀ my opinion.

I would love to start a fashion community on this blog.

If you have an outfit/hairstyle that you are incredibly proud of, I ask you to send me a picture of it, so I can share in your joy/excitement. If you have questions about a piece of clothing/hairstyle and aren’t sure if it “works”, please send me a pic and I will gladly/gently give you my thoughts.

And if you’re okay with it, I would LOVE to put the pictures up on the blog to have other readers comment and affirm your choices. Because aren’t you so much more likely to wear/buy something if someone else tells you something like, “Oh, that color looks SO good on you!”

Let’s be friends!

My email is

and I’d love, love, love to have a fashion community with YOU!

You can also find me on instagram at


So…since we’re sharing, here are my outfits from the week. What do you think?

photo 5

photo 4

photo 3

photo 2

photo 1

Happy Friday, friend!

Simon’s Story: Part Six

If you missed Part One to the story, you can read it here.

Soon after the accident happened, I got an email from Ashley from the blog Under The Sycamore. She had spent some weeks in the hospital earlier that year with her daughter, who had broken her femur and had to be in traction. In the letter, she said to me, “treasure this time” and “soak it in”. At the time, I didn’t fully understand, but I did my best to just enjoy the time alone that I had with Simon and spent every minute thankful for the time I had to hold him and enjoy his sweet smile.

We were super thankful for the chance to be able to not be “trapped” in our room anymore and spent time walking around.

When we were moved to rehab, I commandeered a wagon, that I believe was for patient use, to cart all of the many things that we had accumulated over the week in PICU. I held on to it in rehab and used it to pull Simon to therapy. He really enjoyed sitting in it and being chauffeured Ā around the hospital. Sometimes we had therapy clear across the hospital, so I was really thankful for the wagon since it was about a mile walk roundtrip (it’s a big hospital!).

The morning of January 12th, the “team” involved with Simon had a meeting that we were included in to review his records and discuss their plan for us in rehab. Because Jesse was working, my mom attended with me. It was quite strange to be the parent at the meeting, while I’m usually on the therapist side of things. I remember how, during most of the meeting, thinking how weird it was that I was a parent, especially since I feel so young mentally, even though I was thirty years old. All of the therapists commented that they were extremely happy with the progress Simon was making and didn’t plan on us being there very long. Our rehab doctor, Dr. Skalsky, reviewed Simon’s CT scans from when we were at Palomar Hospital (hours after the accident) and the ones they took the next day after the surgery. It was incredible to see how “squished” his ventricles were with all of the bleeding that he sustained. It was truly a miracle that he was alive and not brain dead.

Simon's before and after CT scans

Simon had his second day of therapy and his language really started to come back. It came back so quickly that his speech therapist jokingly asked, “Why am I here?” That was happy news to my ears as speech is such an important thing to me and was one of my worries in the beginning.

Simon story 26

We were also thankful to be able to have lots of visitors, especially my friends with kids close to Simon’s age as I feel it provided a good example for him.

Simon story 27

Very early on the morning of January 13th, I woke up feeling incredibly nauseous. I ran to the bathroom and was suddenly sick…from both ends. I sat on the floor of the bathroom feeling like death, but also incredibly worried that Simon would wake up and I wouldn’t be able to get to him, as he was super attached to me at this time. I was able to quickly get up and push the nurse button to call for help. She came quickly and was very kind, bringing me soda and crackers. I called my sisters and they came down to help me. My sister, Risa, decided to stay the night with Simon, while my sister Renata drove me home. I was relieved to be home in my own bed since I felt so awful and slept the rest of the day.

I woke up in the morning feeling better and since I assumed it was food poisoning (I ate some possibly sketchy lettuce at the hospital), I gathered Liam up and we went to my dear friend Rob’s birthday party that morning. We enjoyed the donuts and conversation.


We headed home awhile later after running some errands. I can’t tell you how freeing it was to be able to drive around and get stuff done after being in the hospital for almost two weeks straight. When we got home, I started to feel miserable again. This is when I first suspected that it was more than food poisoning.

Jesse had replaced Risa Friday afternoon and took Simon to therapy that Saturday. He told me that Simon was doing great and getting much more stable on his feet. He was speeding up his movement and working on climbing stairs in PT. He also improved on weight baring with his right arm, but seemed to have sensitivity in it and didn’t like it to be touched. When he would crawl on it (up a foam ramp for example), they worked on getting his fingers to open up as he kept them in a tight fist. At one point with Simon’s arm and leg on his right side, they used to electro stimulation to “shock” the nerve endings into recognizing that side and we noticed an improvement almost immediately after they did that.

When I woke up the next morning, I still felt awful. I think my incredibly exhausted body was finally just giving up on me. I had no energy to fight this sickness, so I did my best to rest and recover. My parents were so helpful and looked after Liam to make it easier for me to sleep without being interrupted. That afternoon Jesse came home to write a paper. Even though I felt awful and he was focused on school, it was lovely to have a couple kid-free hours in our home together. I had really missed the normalcy.

I had planned already to head down to the hospital the next day as I was feeling a bit better, but as soon as I got up, I got a call from Risa, who had stayed with Simon overnight. She said that he threw up all night and that both of them didn’t rest at all. This confirmed to me that we must have caught some evil flu bug and made me feel like our family was falling apart at the seams.


I rushed down to the hospital, a thirty-mile drive each way, to replace Risa. When I walked in I saw this happy little child, not looking sick at all.

Simon story 28

Because he was sick, we cancelled therapy just in case he was contagious. Instead we spent the day hanging out and exploring outside.

Simon story 29

Simon still had his “cage” bed that we brought over from PICU. Every time he went to sleep, we needed to put the bottom rails up and the top part down, so that if he were to wake up and stand up, he wouldn’t fall out of bed. I think this bed, plus being in a strange place, frightened Simon and he had a difficult time going to sleep, unless you were holding him.

This child had transitioned to a big boy bed at only fifteen months and loved to sleep, so this was a big change for us. He also cried when you would put him down because the noise of the bars going up would often wake him. This was incredibly frustrating, but I tried to soak up the times I could cuddle with him.

Thanks for reading! Part seven of the story will be continued this coming Monday!

Simon’s Story: Part Five

If you missed Part One to the story, you can read it here.

The next day Simon seemed to be in a better mood which was probably because his brother came by to play. He also ate an entire bowl of oatmeal as we waited to be moved to rehab.

His strange eye roll behavior persisted though and it really started to concern me. I brought it up to the doctors (something I slightly regret now because it delay our release from PICU, but at the time we had no idea what was going on and since everything was new from his head injury, we questioned everything). The doctors were concerned for the possibility of seizures, so they told us that they were going to do an EEG to check for seizures. This was incredibly tough news because we were going to have to stay in the PICU another night (yet again) and it meant that I was going to have to keep Simon up all night, so that he’d be so sleep-deprived that he would sleep through the procedure in the morning (instead of putting him under).

To say that night was tough is an understatement. Simon was not a happy camper at not being allowed to sleep, as was I.

I did my best to entertain us both by watching tv shows, singing and dancing.

It was a long night.

In the morning, the woman came and Simon was finally allowed to go to sleep. She then proceeded to put fifty little electrodes with colorful wires on his head and covered them with a bandage. The procedure took about an hour.

The results came back and we were told that they showed brain movement consistent with his level of head trauma, which is also similar to seizures, but since they didn’t see him seizing, they were almost sure he wasn’t having seizures. Because of this, they weren’t going to put him on any new meds.

I was finally able to sleep, as soon as Simon slept peacefully and yet I couldn’t shut my brain off. I was literally so tired, that I couldn’t go to sleep. I watched shows on my phone and read magazines hoping that I would get drowsy, but I continued to be exhausted and wide awake, possibly with the excitement that we would FINALLY be moving to rehab. I couldn’t wait to move on with a “new normal”.

We were so thankful for all of the consistent care that we received in PICU, but at the same time, it’s a really difficult place to be. All around us were very sick kids, ranging from newborns to teenagers. On one side of us was a baby that had the saddest cry. I wanted so badly to be able to go over and hold it. On the other side was a teenage boy that had had excruciating leg pain and while waiting in the ER, he had a stroke and had to be put in a medically induced coma. Afterwards, they found out he had lymphoma. Because there were patients with such compromised immune systems, a limited amount of visitors were allowed at a time, only two to a room, including the parents (we broke this rule a lot). Plus, to get into the room, you had to call and be buzzed in, which was irritating, especially since you had to go outside to go to the bathroom. The doctors and nurses had rounds from 7-8 in the morning and evenings where they discussed the patients. Because they discussed confidential information, there was no coming in or going out during that hour. That meant you had to be in your room or out of the PICU entirely at that time, which was equally frustrating.

We waited all day, until they finally came and moved us that evening.

Our room at rehab was incredible. Because the building is new, only about a year old, the facilities were beautiful. We had a bathroom actually IN our room (let me clarify: our PICU room had a bathroom, but it was for patients only), a gigantic place to sleep and move around and our view was much nicer. And the best part was we could have visitors come and go as we please. Jesse went back to work, so I was able to stay with Simon for his first week of rehab.

When we checked in, our nurse mentioned that she was wondering if she would see us because she had been following our story on Facebook. I should tell you again how absolutely blown away we were by the amount of people that were praying for us and following Simon’s story. My amazing friend, Jenni, who started the Facebook page “Praying for Simon Frey”, told me that the day it was created she watched the number of people “like” it jump up about a hundred every hour! People can say what they want about social media, but I think it is a wonderful “prayer chain”, especially for the distance it covers.

The glue the technician used to put the electrodes on Simon’s head left his hair pretty sticky and crazy. I was able to take a shower with him, which was a little scary considering the last time he took a shower. That’s what got us into this mess. But, it was also freeing in a way because he was no longer hooked up to any more machines.

In the morning, on January 10th, after being naked for a week and a half, our little nudist was finally able to put some clothes on.

The nurses came in and brought us a mat to play on as well as to tell us our schedule for each day. Because we were in rehab, Simon would be getting a strict schedule of speech, physical and occupational therapy for an hour each day. When we went to physical therapy, they were really impressed with his balance and proprioception. He was already attempting to crawl and tried to go to a stand from the floor! I was overjoyed to see how strong Simon was and that things he knew before the accident were coming back to him automatically. They told us that it was a benefit that he was ahead physically before the accident because it is easier to relearn things you already know then to learn things for the first time.

Simon seemed much happier being in our new room with the ability to move around and explore. Plus, he was no longer hooked up to any machines. Ronald MacDonald also had a volunteer stylist that came to our room and shaved the rest of his hair off, since they only shaved half of it during the surgery. He wasn’t too happy about having anyone touch his head, but he looked SO much better after it was done.

Later that day, Simon was sitting on the floor, leaned forward and pushed to a stand. So amazing! We were even able to go outside and play around on the hospital playground. Simon has always been much happier to be outside.

The staff also brought us a high chair and Simon was able to feed himself, which was helpful since he’s a fiercely independent child.

Thanks for reading! The story will be continued this Wednesday.

Simon’s Story: Part Four

If you missed Part One to the story, you can read it here.

The next day, we waited for the PICC nurse to arrive. The line was finally put in Ā in the afternoon and while they were doing it, they had to move his intubation tube to the other side. This made Simon incredibly angry and he moved both arms and legs. It was nice to see him angry and expressing emotion, which made us hopeful he was still “in there”. Soon after, they removed his tube and his pretty, perfect lips were a glorious sight to behold.

I slept with Liam across the street again that night and Jesse told me in the morning that Simon woke up calling for me. I was so sad to miss hearing his sweet little voice and couldn’t wait to hear him talk again. In retrospect, I feel like this day is the day that we finally relaxed and life moved back to a normal pace again, instead of a slow, tortuous crawl. They moved Simon to a crib-like bed and took two more tubes out, so we were finally able to hold him!

Speech, Occupational and Physical Therapy also assessed him and were amazed at how well he was doing. His neurosurgeon came in and called Simon “his hero”, which I thought was funny because at this point, Dr. Meltzer was my hero for saving him. Simon’s left eye was still really swollen from the pressure of the blood in his brain and it was hard for him to open. His breathing continued to be labored, but when he was awake, he tried to move around a lot, which everyone was happy to see.

Because he wasn’t medicated as much anymore and able to move around, they moved him to a new bed, that is similar to a crib with both sides that raise up, so that he couldn’t fall out. My amazing friend, Cheryl, made Simon a flag bunting to brighten up his room.

The OT (occupational therapist), Missy, handed Simon a sippy cup with water in it and he brought the cup to his mouth independently with his left hand and downed it in less than a minute, which completely floored her. Because of my background in speech therapy, I worried a lot about his speech returning, as he was already ahead of his age-group before the accident. That day he was able to repeat “mama”, “da” (dada), “truck”, “more” and “nana” (banana). This made my heart soar!

The doctors talked to us about moving Simon to less critical care because of his miraculous improvement. We were blown away at the prayers and outpouring of support from Facebook. People in other countries were praying for us and posting encouragement to our Facebook page “Praying for Simon Frey”. At one point I was worried about Simon’s personality not returning because he hadn’t smiled yet and Jesse reminded me to post a status update with a specific prayer request for that since there were so many people praying diligently for Simon. We were incredibly uplifted from believers near and far.

The next morning I rushed over to Simon’s room and he woke up and called for me. When I set my phone down next to him, he immediately grabbed it and held it up to push the buttons. I asked for it back from him and he said “no” as well as smiling at me! I was truly encouraged that God listens to our prayers, even the tiniest concerns. Jesse and I started thinking that Simon was bored just lying in his bed, so we turned Elmo on and he was stoked. That day, January 5th, marked Simon’s 17-month mark as well as one week since the accident. It was hard to believe that it had only been a week and I felt like I had aged five years in that week.

The doctors came by and told us that the next day they planned on moving us to rehab, depending on how he was doing, which meant that moving us to rehab, depending on how Simon’s therapy went, we could potentially go home in two weeks. Two weeks?!? That is crazy to believe since right after the accident I figured we would be in the hospital for MONTHS. The rehab doctor also told us that he believed that we would be going home with no equipment, meaning Simon would be walking. PRAISE THE LORD!!!!!

(I got this fortune cookie with my dinner that night and it made me smile.)

On Friday, January 6th, Simon’s breathing was still labored with a lot of gunk still in his lungs. He also seemed uncomfortable and almost frustrated at himself because it looked like he wanted to say something, but didn’t know how.

We talked to an intensivist and he said that with brain injuries like Simon’s, it was possible to have vocal fold paralysis, so they looked into that, as well as the possibility of whooping cough. Every day there seemed to be new questions or scary possibilities, but we waited and trusted in our God. An ENT came to check out Simon’s vocal folds and they were fine and we waited to hear results of the whooping cough test (which were later proven negative). We prayed fervently that Simon would sleep well through the night and breathe perfectly in the morning so we could move to rehab and get started on some hard-core therapy.

It was incredible to see Simon regain so much more of himself every hour and equally frustrating that little things (like waiting for test results) were holding us back, but we trusted God’s timing and tried our hardest to be patient.

Simon’s breathing improved the next day and even though we hadn’t found out the results of the whooping cough, we were pretty sure he didn’t have it. He did seem to be grumpy and uncomfortable, so we prayed that he was able to get rest and not be in too much pain. They told us that they planned to move us to rehab the next day, so we were really thankful.

He was also able to get his feeding tube out. We had to make sure that he ate enough by himself, so he didn’t have to get the tube put back in. This task, in itself, was challenging because Simon has always been the kind of kid that ate when he wanted to and refused to eat when he didn’t feel like it. It would take a whole day of us offering him a glass of milk every chance we got to get him to drink the whole thing. It also didn’t help that they had him on a soft foods diet and Simon is not a fan of “mushy” texture. We tried to order him as much as possible (mac ‘n cheese, mashed potatoes, apple sauce, pudding, oatmeal) to give him as many options as possible.

SimonĀ startedĀ doing a weird rolling/blinking with his eyes that concerned us and also seemed to be bugging him. The doctors suspected that it was a dry eye problem.

Thanks for reading. Part five will be continued next Monday.

Simon’s Story: Part Three

If you missed the beginning of the story, you can find Part One here.

Simon slept through the night and in the morning started to move and struggle against his intubation. This was a really good sign of brain function, but they needed to medicate him more to keep him still. We prayed for his temperature to stay low because it was rising a bit, as this would allow his metabolism to move slowly giving his brain a chance to rest and heal.

We sat and waited throughout the day (which felt like a year) and watched Simon increase in twitchiness. Watching him move more made us happy and lightened our hearts a bit. Later in the day, they took another CT scan just to be safe.

As it was Jesse’s turn to sleep in the room and the waiting room was packed with people, I decided to go home that night. My parents drove me and we stopped at my best friend, Katie’s house on the way. It was her 30th birthday and New Year’s Eve and I had a cupcake I wanted to deliver to her. Being an extrovert, it was refreshing to be surrounded by my close friends and to get away from the stress and waiting at the hospital.

It was comforting to sleep in my own bed, but also incredibly anxiety-inducing. I tried not to think about Simon and the events of the past two days. I also tried to not think about being away from him; instead, I tried to focus my attention on Liam.

We rushed back to the hospital early that morning, where we learned that the CT results were the same, which was good. His temperature was normal. They attempted to extubate him, but he panicked a little when they turned off the ventilation and breathed too quickly, so they turned the ventilation back on. This was discouraging because they wouldn’t be able to decrease his coma-inducing drugs until he was able to breath on his own. We wanted so badly to be able to see him wake up and know his mental state. The waiting combined with not knowing was incredibly stressful.

That day they worked hard to clear his airways. This included giving him some asthma medication to help treat the congestion he had, to hopefully speed up his progress towards extubation. It was at this time that he opened one eye really quickly. We were so excited to see this, which made us want to hold him so badly. We understood that he needed to rest to let his lungs heal, but our arms ached to hold our baby. The doctors told us that they needed to hear a “leak”, which would show them that his vocal area had decreased in swelling. I posted this prayer request on Facebook and only fifteen minutes later a nurse came in a heard a “leak” and another nurse told me that his lungs (while she listened through a stethoscope) sounded “really good”. We were blown away with the power of prayer and the power of our God. How good He was to us to listen to our specific needs and graciously give us tiny bits of hope for our son. We prayed that we would be a good witness to the doctors and nurses that surrounded us as we were practically roommates 24/7. We were incredibly thankful for the constant and continual care that Rady’s Chilren’s PICU gave us.

The next day, January 2nd, after we had rested (or as much as you can in a hospital room with loud beeping monitors), we met with our neurosurgeon. He read the latest CT scan and told us that there is a possibility of damage on the left side of his brain possibly caused by a stroke. This made sense as he was moving his right side a lot less than his left side (because each side of the brain controls the opposite side of the body). Some tests also came back that day which showed he had some sort of bacterial infection, which was possibly from a cold he had before the accident. They put him on antibiotics and he continued to cough up a lot of gunk, which showed that it was loosening in his lungs.

The doctors made the decision to put a PICC line in to give Simon more movement once he woke up. A PICC line is a “peripherally inserted central catheter”. A nurse is specially trained to use ultrasound to insert the thin tube/catheter in the periphery (usually an arm) that goes directly to the heart. It can deliver treatments directly to the bloodstream and is much more user friendly than an IV. Because they need a specific nurse to do the procedure, we had to wait for this nurse to come and she had a long list of patients ahead of us. We were informed that Simon wasn’t going to be able to get the PICC line in until the next day and so the extubation would have to be put off another day.

Simon opened his eye for a bit and looked at me worriedly, which is understandable as he was hooked up to five or more loud, beeping machines, in a room he didn’t recognize with people he didn’t know. I was able to lean down and hug him to comfort him, but I wanted more than anything in the world at that moment to scoop him up, run out of that hospital, and return to normal life. Hearing that the extubation was delayed yet again made me want to scream in frustration, but I tried to focus on the good things around us. I was thankful that 1-Simon was alive, 2-my husband was incredibly supportive and praying at this stressful time, 3-every nurse we had was incredibly friendly and hopeful for Simon’s future condition, 4-my family and friends who were amazingly helpful with Liam, our house, our dog, food, prayers, hugs, etc. and 5-Simon’s strong, spunky personality that made him such a fighter. This was unmistakably the longest week of my entire life.

It was brilliant timing that we were able to get a room at Ronald MacDonald that day, which allowed us to sleep in a bed in a quiet room, along with Liam and be within walking distance of Simon’s room. I am thankful for my family being so close and having a daily relationship with my kids already, so them staying at our house with Liam wasn’t too strange or different. But, you could tell that the stress of the past days’ events were getting to him. He acted out in anger towards everyone, had hysterical breakdowns and we took big steps backward with potty training. His poor belly was rejecting him and he had many accidents, most of them that were probably uncontrollable. The exhaustion and stress also caught up with me. I felt incredibly shaky and fatigued. I had been taking 1 or 2 Advil PMs every night since the accident to help me sleep and I believe that this, plus the constant stress, were breaking me down. Jesse was also having to keep up with his classwork (he is attending Ashford University and thankfully all his classes are online).

Thanks for reading! Read Part 4 on Wednesday.