.

.

Wednesday, April 16, 2014

thoughts.

They put an IV in the back of Owen’s hand so he could receive his sedation meds and fluids more easily. After putting it in his hand, they wrapped it up really well with a blue bandage which made his hand unusable. To pass the time, he and I played in the hall with a cozy coupe car. His favorite thing to do is push the cars, but he was struggling to do it with only one hand so I scooped him up and put him inside the car and I pushed him up and down the hall.

As I thought about him losing the use of his hand for a short time, my thoughts shot back to the day Isaac and Porter were born. Isaac had an amniotic band wrapped around his left wrist. So tightly that if he had been born alive, that hand would not have survived. Jacob and I used to talk about that a lot when we would discuss “what-ifs”. We would talk about Isaac’s little hand and how he would have had to adjust and live life with only one.

Watching Owen with his left hand wrapped up, I thought about my oldest.

It’s so hard sometimes. I don’t want to forget or stop thinking about little details like that. I don’t want the world to forget about Isaac and Porter. I don’t want the world to think that I’ve forgotten. I don’t want to have to explain when someone says, “is he your first?” I don’t want to have to explain my reasoning for only having one child.

Sweet Isaac, 
  Today I am thinking about you, my oldest child. I’m thinking about your perfect little feet, the deep dimple in your chin, your perfect little cheeks and knees and hands. I’m thinking about you and what you would be doing now. I’m thinking about what you must be doing now, in heaven, and how much you must look like your daddy as an adult spirit doing missionary work. I’m thinking about your tenacity and your giving heart. Your deep bond with Porter. How much you must love Owen. I’m wondering how often you get a peek of him and his life. Do you laugh when he does something silly? I miss you. I long for the day when I will see you again. Give Porter a kiss for me and for daddy. 
Love, Mama

Tuesday, April 15, 2014

tests.

Yesterday Owen and I had a long day at the hospital. We left our house a little after 6:00 a.m. and didn’t get home until 3:00 p.m..

Owen had MRI, hearing test, blood draw, and an oncology appointment.

We started with the MRI which Owen was sedated for. When they do sedation, they have me hold him and put the sedation meds through his IV. I hold him until he falls asleep and then put him on the bed that they wheel into the MRI machine. Holding Owen while he is sedated is my least favorite procedure. There is something about setting your sleeping child on a gurney… I hate it. I absolutely hate it. The MRI is an hour long, so I went to the cafeteria to grab a bite to eat. I was in between meals, so I grabbed a donut and drink and tried to distract myself while I waited. Eventually I wandered over to the gift shop and found Owen a toy (Sulley ball) for when he woke up.

After his MRI, they wanted him to stay asleep so they could do his hearing test in recovery. He had started to wake up toward the end of his MRI, so they gave him more sedation meds and they carried him through his hearing test.

After his hearing test, he woke up and we gave him some juice (they started an IV of fluids once he was out of the MRI). Then we headed down the hall for his blood draw and upstairs for his oncology appointment.

He passed everything with flying colors. It was a long, long day, but he got a decent amount of prizes (the ball I bought + a car from the lab + a bag of duplo blocks from oncology) and managed to be mostly happy regardless. Once we got home, we were both wiped out which has carried into today. He’s taken more naps today than he usually does and I’ve been moving more slowly. Two months off is going to be awesome!!











Saturday, April 12, 2014

EUA update.

Owen’s EUA went incredibly well on Thursday.

Thursday morning we woke up at 5:45 and got loaded and on the road by 6:00. It’s such a blessing that we are able to go to PCMC since it’s only an hour away. We checked in at the hospital and Owen had a great time playing with the toys while we waited to be called back. Once we were called back, Owen’s vitals were taken and we changed him into his hospital duds. He got eye drops (his least favorite part) and more waiting in the pre-op waiting room. We talked to his ophthalmologist and OR nurse and then our anesthesiologist came and walked us to the OR doors.

When it was time to say goodbye, we each gave Owen a kiss and he put out his arms for the anesthesiologist to take him and off they went.

When our ophthalmologist came to talk to us, we got the best news we’ve gotten so far. Owen’s existing tumor is still looking very dead and he has no new tumor growth. His vision is still 20/20 and he’s do so well he doesn’t need another EUA until June. I wanted to cry I was so happy.

We were taken in to see Owen a few minutes later. He was already sucking down a bottle of apple juice. He’d never had juice before, but he seemed to like it. To be honest, I’m sure he’d drink anything post surgery, he always wakes up so hungry. We hung out in post-op until they were sure he was keeping the fluids down and then we were discharged. Owen bounced back to his happy self pretty quickly.

Monday he has his tests, but everything is looking really good right now. We’re so happy. It’s so nice to get good news and the longer Owen goes without new tumor growth, the more likely he won’t get more or that many. I never expected everything to go as well as it has, we’re so fortunate that it’s been a  fairly smooth ride these last few months.

video

Wednesday, April 9, 2014

sunshine.

The weather was perfect today. Owen and I were able to spend a fair amount of time outside with my sister-in-law and niece. My sister-in-law wanted to rent a puppy for an hour (Yes, you can rent a puppy. It’s as awesome as it sounds) so they came down since the puppy rental company is based here in Provo. Our little puppy friend was adorable and exhausting (much like a small child). He licked Owen’s face a few times but they mostly ignored each other. My niece liked the puppy, but I think the whole thing cemented for her that owning a dog would be a lot of work and not always as fun as it sounds.

I am really glad the puppy came today because the whole event filled up my day quite nicely and helped me avoid thinking about tomorrow.

We check in to the hospital at 7:15 a.m.. We put O-bug down a little early tonight since we’ll be waking him up early. Hopefully he sleeps better tonight than he has been lately. We’ve already had one nightmare. Hoping for no more… I often wonder what his nightmares are about, but mostly I just hate that he has them. I feel awful when he wakes up crying and scared.

EUA tomorrow. Bag is all packed, clothes are laid out… we’re ready. 7:15 is actually a pretty decent time. We’ve definitely done earlier.





Tuesday, April 8, 2014

guardian angels and baby selfies.





















See that screw cover? Earlier today this bookshelf had a dozen or so of those little buggers covering up the screws on the side in an attempt to make the shelf look like more than a Target cheapie. They were easy enough to install five or so years ago when we bought the thing and they come off just as easily. 

Today Owen ate one. I brought the shelf downstairs yesterday to give him more access to his books. I carefully planned which books would stay downstairs and organized his toys on the top row of cubbies. I didn’t even think of those plastic hazards.

I was sitting a foot away from him when he started choking and it only took me a few seconds to realize what he had put in his mouth. Fortunately he coughed and was breathing normally again almost as quickly as it’d begun. I assumed he had swallowed the cover because of how it had happened, but I checked his mouth anyway. I found a cover and figured it had just come back up. I pulled all of the covers off the screws and promptly threw them away, disgusted that I hadn’t realized they could be a hazard but thanking the heavens that he was okay.

Tonight I found a cover in his diaper. He actually ate one. He ate a piece of plastic roughly the size of my thumbnail and it traveled all the way through him. Goodness gracious I’m so grateful he’s okay. I really feel like Owen’s older brothers are his guardian angels. I hope they pick up the slack when I make a mistake or don’t realize a hazard in time. After I changed him tonight, I just hugged him and felt an immense amount of gratitude to my Heavenly Father for watching over him. There have been so many moments when my heart wants to stop, literally stop for fear of something happening to Owen. I am so traumatized by what happened to Isaac and Porter. Things like this just throw me over the edge. 

Other than the immense amounts of anxiety over Owen eating everything in sight, today was a good day. Owen is becoming more and more fun all the time. One of his favorite things is the camera on the phone. Here are his baby selfies and a video of him talking to himself. I want to eat him, he’s so cute! 






video

Monday, April 7, 2014

Thursday, Monday, and our 6 month mark.

It’s less than a week until Owen’s next EUA and his tests. I’m officially allowing myself to think about all of it now. I’m never sure what I should be thinking as these days draw near. Overall Owen has done really, really well. He only has one tumor and it has responded well to treatments. In the cancer world, we’ve been pretty lucky. It’s been tough, but he’s done really well.

The thing is, every EUA could tell a different story. I’m always waiting for another shoe to drop. I have experienced too many of the “what-ifs” in life to ignore them or pretend they don’t exist. I’ve seen too many Rb kids have drawbacks to think it can’t happen to us. So I’m nervous. EUAs are really tough. I have to hand my baby over to an anesthesiologist, again, and watch them walk away. The “what-ifs” are hard, but the process is tough no matter what the news is. This will be Owen’s ninth time going under anesthesia. I haven’t been under anesthesia nine times. So that’s Thursday. Monday is his MRI, hearing test, and an oncology visit. He had slight hearing loss at his first test, so they’ll be checking that again and checking to see if chemotherapy caused additional hearing loss. His MRI is to check for trilateral Rb. Since he has the genetic form of Rb, trilateral is a possibility so he has to have MRIs every six months.

I realized the other day that I missed the six month mark of him being diagnosed. I’m not sure that matters, but I thought I would notice when the day came. Perhaps it’s good that it came and went without me thinking about it. It’s crazy that it’s only been six months, honestly. It seems like forever ago. I was looking through Owen’s pictures and videos around that time. I took so many those first few visits, I really should be better at taking them now. I try too. It’s hard because I don’t want to have pictures of him when he’s sick or sedated, but I know that I need to document all of this … for me and for him. Here are some from the beginning. It’s crazy how much he’s grown in six months. He still loves those hospital bracelets on his ankle though.





video
video

Saturday, April 5, 2014

Baby boy is turning one in less than two months. CRAZY. But also ridiculously exciting. I’ve been a mom for 2 1/2 years and have yet to really celebrate one of my children’s birthdays. I am beyond excited for buddy boy to have tons and tons of them.

Since it’s his first birthday, I’m keeping everything pretty simple. Just cake and ice-cream with family in the evening and a fun outing with Owen during the day. Simple because he’s little and simple will let me concentrate on him and what will make him happy.

I’d lie if I said I wasn’t having fun with birthday prep though. I’ve designed cute cupcake toppers, purchased his gifts, tried out a bunch of frosting recipes (finally found one I love!), and made a test run of his cake. We gave him a cupcake today to make sure he approves of the frosting recipe too. I think it’s a pretty safe bet.





















Other than birthday prep, we’ve been doing our normal routine. We’ve been spending more time outside, but this last week was cold and it snowed a few times so we stayed cooped up. Hopefully next week will bring lots of sunshine.

Owen’s EUA is on Thursday. He also has a hearing test and MRI on Monday. Prayers and thoughts would be really great if you’ve got them.