9 days post op- Treatment #22

 Elliot’s healing up really well. He had a couple tiny scabs but nothing bad at all. 

He’s excited for Halloween tomorrow! 

Elliot’s Treatment #22

 Whew! What a whirlwind of a year and a half since I last posted here!

Elliot was scheduled for this procedure in September but we canceled because we have been in a worldwide pandemic since March 2020. Covid 19 has swept the planet causing an unfathomable amount of death and destruction. 

Since anesthesia weakens your immune system we opted to wait until now to go back for a treatment. His treatment was October 20th, 2021.

Elliot did great through the whole thing. The nurses are always amazed at how easy going his is, both pre and post op. We had an early check in (7:15am) and didn’t see many others there this time.

Today is 6 days post op and he’s healing really well. This time he didn’t get any large scabs which I’m thankful for. He hasn’t complained at all about it being uncomfortable aside from the swelling the morning after. 

Since I have haven’t updated in a while, he has had an ophthalmologist appointment recently also and that went very well! He’s now on a yearly check up schedule. Yay!!!

Treatment #21 Post Op Photos

Elliot's been battling a cold, along with mom, for the past week so "updating the blog" kept getting pushed to the back burner.  It's been almost 3 weeks since his laser surgery for his port wine stain. I haven't updated regularly but I will add all of the photos here. He seemed to swell more this time, and it last for a few days. He healed up really well though. He did get a few light scabs down the bridge, and just under, his nose. He still has some redness from the treatment but his spots are mostly gone. Within the next couple of weeks we should see how much clearance he got from this one.

4 days post op

10 days post op

12 days post op

20 days post op

I'm not surprised that it's taken so long since it was a really heavy treatment. I'm looking forward to seeing what happens with the Prima laser next month.

xoxo

Treatment #21: 1-3 Days Post Op

Laser treatment #21 of Elliot's Port Wine Stain is in the books. Elliot was a champ through it all, as usual. Our plan was to try the new Prima laser this time, but unfortunately it wouldn't calibrate correctly so Dr. Orringer was unable to use it. The Prima is the first laser improvement since Elliot was born. It's supposed to target the Port Wine Stain deeper and I've heard that healing time is a little shorter. I was pretty bummed that it wasn't working that day. I'm actually scheduling him for another treatment in April to give it a go.

He said it was pretty painful when he woke up. The nurse asked his pain level and he said a "7" (which I'm going to say was inaccurate) but they gave him a dose of fentanyl. I nearly died, haha. I didn't even know they use that for pain management in children! Yikes.

Today is 3 days post op and he hasn't complained at all about the pain. He said it doesn't really bother him. The swelling is still there today but they did a REALLY heavy treatment.

Mommy and Elliot before he went back

Aunt Lisha is our rock on treatment days

Elliot always wants Chipotle after <3

In the recovery room

Day 1 Post Op. Lots of swelling. 

Day 2 Post Op

You can see in the photos how much darker the spots got over the first couple of days. It was a really heavy treatment. I wish I had asked what joules it was at. I'm praying he doesn't get bad scabbing. 

His swelling is better today but he still doesn't have much of a waterline. Also, just check out that "man bun" 😍😍😍 #HairGoals

Day 3 Post op. Spots are darker, swelling is going down

Side view

I'll update again in a couple of days with more healing photos. As always, if you have any questions about Port Wine Stains or laser surgery feel free to ask.

xoxo

Update 2019

Just wanted to post an update about where we are at. Elliot hasn't had a treatment since September which is fine since we're in the maintenance phase currently. Our Blue Cross insurance is still denying coverage so we're reapplying for Children's Special Health Care Services to help us. Without insurance the cost of laser surgery is just too far out of reach. I spoke to his specialist today and she said his last surgery was billed at just over $14,000. >.<

He's doing really well and I'm happy with where we're at. There is a new laser on the market called the Prima which is able to target deeper than those currently available. Unfortunately the University of Michigan doesn't have plans to add one at this time. I'm hoping they'll jump on board soon because I'd love to see if we could get more clearance with the new laser.

Homeschooling is going really well and I'm so impressed with Elliot's math ability. He's currently working a grade level ahead, which is the biggest perk of homeschooling! I love being able to meet the kids where they're at academically. We're on spring break this week and we're enjoying the outdoors and relaxation.

He needs a recheck with the ophthalmologist soon so I need to get that scheduled. That's about it!

We colored Easter eggs today! This isn't a great quality photo but good enough to see the PWS. :)

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

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

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. ;)

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

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

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

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

Treatment #18

Whew! The holiday's and New Year are always so busy around here so I wasn't able to update like I wanted to. Following Christmas we had a nasty run of strep throat and sinus infections so we're just getting back on the mend.

Elliot had his 18th laser treatment on December 23rd and did spectacular. We did a mixed treatment of blending and lightening. If you haven't read our previous posts, a lightening treatment uses a smaller laser and higher intensity pulse than the blending. We decided to do both because he has a stubborn area on his cheek that hasn't lightened as well as the other areas. Unfortunately, this time he experienced heavy scabbing in these areas. I believe this was a result of not only the intensity but the fact that it had been 11 months since his last treatment. The blended areas did not scab and healed much faster.

I'm including a few photos from his treatment day, along with one from Christmas to show what it looked like a couple days after. I need to get better recent pics of the healing process. Sadly my Note 3 has a TERRIBLE camera so the picture quality stinks. I always forget to bust out our Sony for times like these.

Elliot has taken this week off of school (the last week was winter break). He will be going back next week but I wanted him to have a little extra healing time at home. He's still a little self-conscience about his "spots" so I don't want to make him feel uncomfortable.

Waiting in the Pre-Op room

In Recovery

Eating Chipotle after leaving Mott's

Christmas Day

That's all for now! I will get some recent healing pictures up this weekend. :)

-Jena

Fall 2016 Update!

Whew! It's been quite a while since I've updated. It seems like there is not much going on lately in the world of Elliot's PWS Journey. We have drastically slowed our roll with his treatments as we are now in the maintenance phase. I am currently trying to figure out when will be the best time to get Elliot in for his maintenance treatment (which will be #18) since he is in school full time now.

Speaking of school, Elliot is a 1st grader now! WOW! I cannot believe how quickly the years have flown by. If you've been following this blog since the early days you understand what I mean. He is really loving his teacher, Mrs. Savage. 

Two weeks ago Elliot had his re-check with Dr. Luparello (his ophthalmologist). Everything was great! He did such an AMAZING job getting his pressure checked. I love healthy eye checks. <3 I forgot to get pictures of him in the chair, but I did snag one in the toy room while he was waiting for his dilation drops to work. 

I hope you are all having an amazing fall, it's our favorite time of the year here! Next weekend we will be visiting the pumpkin patch for fall activities and pumpkin picking. Elliot is still trying to decide what he wants to be for Halloween this year so I'm sure we will be in a last minute rush for a costume. ;) 

xoxo,

Jena

Bye-Bye Baby Teeth!

It seems like just yesterday I gave birth to this beautiful baby boy. Now he's growing up and losing teeth! On Sunday, Easter, Elliot lost his first baby tooth. It was an exciting night in the Thorp household with the Easter Bunny AND the Tooth Fairy visiting in one night! The kids have been so excited about Easter, especially Elliot. "Surprise Eggs" are all the hype these days and he spends all of his computer time watching unboxing videos, or "un-egging", on YouTube. He has been anxiously awaiting Easter since the moment he opened his last Christmas gift. :) Losing his first tooth on that day made it even more special for him.

Today (Wednesday) he lost his 2nd baby tooth (with a little help from our dental floss). He was the first to tuck himself into bed tonight, with the tooth in it's special tooth pillow located under his pillow. He was asleep within 10 minutes. Momma could get used to this! haha.

Tomorrow is the last day of school and then we're on Spring Break. Let's hope we get some beautiful Spring weather to go along with the time off!






P.S. I could get lost in those beautiful, big brown eyes <3



xoxo,
Jena

Back to School!

Yesterday Elliot returned to school. His first day back since his procedure went well. I was hesitant because he still has some spots (and scabs) but it wasn't as noticeable as before. When we arrived at the school he said "I'm scared. It's been a long time since I've went to school." I knew he would be nervous. :( He didn't cry though! He said his day went good, and that people did ask what happened on his face. He said "I told them it's my birthmark." I don't think he felt like explaining the laser treatment, and this is his go-to response for questions like these. He said that Aislee (our best friends daughter) also told people if they asked. He is blessed to have a built in support system at school (2 siblings and 3 "cousins").

I snapped a pic of him as he was walking in. Love this little boy <3

11 days Post-Op (Treatment #17)

Yesterday was 11 days post-op and Elliot is healing up nicely. All of the scabs are in place and we are continuing to apply the products to keep them moist. We're considering sending him back to school tomorrow. The spots are still noticeable but not as "shocking" as they were in the beginning. He's missing his friends at this point.

Today we received a referral for the ENT. Elliot's tonsils have always been large and he snores a lot. I foresee a tonsillectomy in the future. Thankfully he bounces back from everything super quick so I'm not too worried.

Here's a picture of the healing process as of yesterday. :) Thanks for reading!

Our Favorite Products

I've had a few questions from other parents about what products we use after laser surgery. These are our favorites. These are affiliate links.

This is our daily cream. You can purchase HERE.



This is the non-petroleum jelly that we use on top of the Eucerin cream for scabs. This helps seal in the moisture from the Eucerin and create a nice, protective barrier. Purchase HERE



This is our preferred sun-block. You should always be using an SPF 50 (any time you are in the sun, not just after treatment!). Purchase HERE.





Finally, you should always put a hat on. The less sun-exposure that you get when you have a port-wine stain, the slower the capillaries will regenerate. Find these hats HERE. 





I hope this helps you find the products you need to keep your skin as healthy as possible!

xoxo,
Jena