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: 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

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

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