Wednesday, September 26, 2018

Treatment #20: Post-op days #5 & 7

The week has flown by, and Elliot is 7 days into his recovery period. His spots are healing nicely and he had very minimal scabbing. He had a small spot next to his nose, a small spot next to his top lip, and a small spot under his eye. They are very small compared to scabs he's had in the past, and I'm very pleased with this treatment. 

Usually recovery means a lot of downtime but this time has been different. On Tuesday Elliot went to his Ninja gymnastics class, with a face full of spots. He walked in with his head held high and I watched his demeanor stay the same throughout class. One child asked him what happened, and he told them he had laser surgery. That's it. So matter-of-factly. I could not be more proud of him.

Tomorrow we head to co-op at the local library. We are studying geography with Mrs. Linda this year, and a whole room full of other kids! We're learning about Africa and will begin working on our African culture project at home this week.



Elliot built a Lincoln Log mansion at Papa's house (Day 5 recovery)


Day 7 recovery




xoxo


Monday, September 24, 2018

Homeschool Journey

In January of this year (2018) we made the decision to pull our kids out of public school. Homeschooling was a dream of mine when I was a new mom, but quickly lost that drive when I had my hands full.   


It’s crazy how life happens sometimes. We always have a picture in our head of how things are supposed to be, but they rarely turn out that way exactly. Oftentimes we fight against reality to try to shape our lives into that image in our head. Sometimes we just go with the flow. I’ve learned through the years that it’s usually easier to just go with the flow and adapt, but it isn’t always easy. Twelve years ago my first child, Emma,  was born. I had grandiose ideas of how it would look to be her mother. I pictured myself as the apron-wearing mom that was shuffling between girl scouts and soccer while looking like I slept for 8 hours the night before. Ha! While we certainly had snippets of times like this, reality was nothing as I had pictured. Instead I was chasing a hyperactive two year old through stores, throwing my hair into messy ponytails and crossing my fingers that the clothes I pulled out of my closet matched as I raced to pull her off of the fridge….again. 

When she was a baby I dreamed of homeschooling. When she was four I physically carried her to the bus and handed her over with a deep sigh of relief. I couldn’t wait for four hours of silence! Fast forward to last year. We had three kids and life was going smoothly. Our kids were older and life was starting to slow down. There was less chasing and more relaxing. I began to toss around the idea of homeschooling again. Then summer vacation came and the kids were rambunctious and by the time August arrived I was happily driving them to school at 7:30 am. “I could never homeschool. I’d lose my sanity. I’d fail them miserably and the world would fall apart.” Those were a few of the fears that popped into my head every time the idea of homeschooling came up. 

Then, in January, a life changing event happened. My nephew had a seizure, and many subsequent seizures, at school and he was rushed to the ER by ambulance. Our local hospital transferred him to a pediatric ICU unit an hour away where he spent the next 5 days of his life. Our world stopped spinning. Everything that was happening came to an abrupt halt as we sat in the hospital praying and hoping he’d open his eyes again. The day this happened I had my grandma pick up my children from school, and I never sent them back. It was while I was sitting there in that hospital, watching my nephew fight for his life, that it hit me how quickly the world can change. Everything we’ve planned and everything we strive for can hang in the balance. Miracles happen. Five days later he was on his way home, smiling but with a long road ahead of him. 

While fear may have been the driving factor that day, it’s been nine months since we began
homeschooling and it is going so much better than I every dreamed of. My sanity is still in tact and my kids are thriving in their new environment. Would it have worked as well a year ago? I’ll never know but I don’t think so. I think the choice was made at the right time for us for a reason.



One of my fears when Elliot was little was sending him to public school. What would kids say? How would they treat him? I know I've talked about this in previous blog posts, but I had a crazy fear of sending him off into a shark tank. However, Elliot adjusted so well and so quickly. He often had people ask "what happened" to his face, and he would usually say "those are my spots" even when he didn't have his "spots" from his treatment. He has fielded all of these questions like a champ. He's always exuded confidence because I raised him to. Even when my own confidence was lacking I'd pretend to be the most confident person in the world in front of him. 

When we made that decision, I started to feel that fear again. Yet this time it was in the opposite direction. Will this affect his confidence in the future? Will he still be able to feel "normal" as he grows without a class full of peers that already know he has a birthmark? A couple weeks ago Elliot and his brother Ethan started Ninja Gymnastics class. He said to be after: "Mom, someone asked what was on my chin. So I wiped my chin but nothing was there. Then he said 'no, i mean your cheek' and I said oh, that's my birthmark. Then he said 'Were you born with it?' and I told him yes." And it was that simple. A normal conversation between two normal boys and he handled it like he always has. 



xoxo

Thursday, September 20, 2018

Treatment 20, Post-op Day 1

Elliot slept like a rock last night. He's usually awake mid-way through my shift (I teach ESL online) and today he slept through all of my classes until 10am! He woke up extremely swollen, which we were prepared for. He's currently holding a bag of frozen corn on his eye to open it a little more. This is another solid treatment by Dr. Orringer, and I'm pleased to see that he went heavy on his lower cheek. That's always been the most stubborn area. Oh, and we're still rocking that pony spout. ;)



Wednesday, September 19, 2018

Laser Treatment #20!

TWENTY!!!!!!

That's the number of treatments Elliot has had since he was born. I remember talking to other moms going through this and when they'd tell me a high number I'd gasp! "Woah, we'll never need that many!" I'd tell myself.

It's amazing to look back over the years and see the progress, the regression, and more progress. A port wine stain is always a work in progress when treating since the body is a self-healing machine and PWS is vascular. Summertime is a PWS's worse enemy, and without fail we miss many days of sunblock. This year we put a pool in so we tried extra hard to remember that sunblock.

Ten days ago Elliot started counting down the days to his treatment like it was Christmas morning. This was a first. He's always great about it, but it's usually a "ugh, here we go" type of attitude. This time was different. Last night he got his stuffy ready to take, made sure he had clothes and that I packed the things he needed. He woke up excited to get on the road to head to Ann Arbor. My heart was happy.

We were checked in and he was in the OR within 30 minutes. We were released and heading home after spending 90 minutes in the hospital. We basically get drive thru service these days. ;) Since we're now on once yearly maintenance treatments we opted for a full-power treatment as opposed to blending. The downside is more recovery time, the upside is less treatments. I can always tell when our progress is regressing because his little horseshoe mark above his brow makes its appearance. Elliot spent the few minutes we were in the recovery room gushing about how kind everyone was there. It's always a top-notch experience and I'm so thankful to have this hospital and their staff so close to home.


xoxo



Checking in to Pre-op
Ready to head back!

Spots complete :)



His hair was making his spots itch, so we problem solved. ;) hahaha

Friday, December 29, 2017

Treatment #19

It's that time of the year! Elliot visited Dr. Orringer at Mott's Children's Hospital on December 20th (2017) for his 19th laser surgery! He was a champ like always. We opted for a full treatment this time, with plans to do a blending treatment in the spring.

Since we always do his laser surgery around Christmas break he always misses out in the school Christmas parties. This year I mentioned it to his teacher, Mrs. Verde, during conferences and she surprised Elliot with a special party the day before his treatment. It was so nice that he was able to partake in some of the fun activities with his classmates this year.

If you read our blog often you know that Elliot always looks forward to eating lunch at Chipotle post treatment. This summer we went to Chipotle for lunch one day and he no longer enjoyed the food like he used to. He was a little bummed about not having taco's to look forward to, but I told him we would eat at the place of his choosing after we left the hospital. Unfortunately he wasn't feeling well this time and just wanted to head home without stopping for lunch.

December was a crazy month for us all. Rob finished up his fire academy and took his test on December 23rd (still awaiting the results). We had a wonderful Christmas though and we're still enjoying the break from school.  Elliot said his favorite gift was his fire truck RC car.

Here are some pictures from the day of treatment, up to today (9 days post op). The spots are healing nicely, though he did get a few small scabs.
Waiting to go back (without pre-med still!)

In recovery

I love this face

Reading on the couch

All the kiddo's ready for Christmas!

Kissing our elf Jingles good-bye for the year!

Christmas morning cuddles with his momma and Hatchimal

9 days post-op. Spots fading nicely

Sunday, November 5, 2017

Family photos and school updates

Hello all!

We just got our "sneak peeks" for our family photo session and I had to share them here. I realized after we left the session that I forgot to mention the PWS to the photographer, and I've had people try to "edit" out his birthmark before. I was happy to see that she didn't touch it. <3

Elliot is scheduled for his treatment in December so there will be a lot more activity here next month. He is overdue for his ophthalmologist appointment due to switching insurance, but that's next on the list to be scheduled.

Second grade is going VERY well! We had parent teacher conferences last week and Elliot is testing above the national levels for reading and math. WOOHOO! We love this kid to the moon and back. Enjoy the sneak peek, and I'll be back in a couple weeks with more.

xoxo
Jena



Thursday, September 21, 2017

2nd Grade!

Elliot started 2nd grade a couple of weeks ago. It's so hard to believe how quickly he's growing. It seems like yesterday I was making my first post here and scouring the internet for everything I could find about Port Wine Stains. What helped me get through those early times the most, was knowing that I was not alone. I reached out to several parents and spoke to them directly regarding their children's journey. I hope that the information you've found here has helped ease your fears as well.

Elliot is now scheduled for treatment #19 in December. I think we're also going to aim for another treatment in March. While he is in the maintenance phrase, I feel like it's important to do the best we can while he's still young. We slack on the sunscreen at times, but we were much more diligent this year. We're hoping that some of the scarring will eventually fade but our doctor has reassured us that he can help with that in the future if it's needed. It's amazing to see how far he has come. His birthmark is still noticeable, but it is so much lighter than it was before. He's learned to answer the question of "what is that on your face" by himself. I'm so very proud of him. <3


I'll be back in December! See you then! xoxo -Jena