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 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

Summer fun!

We're having a fun summer in the Thorp house! Elliots port wine stain had seemed to darken a little because we haven't been as diligent about sunblock. :( We will most likely get another treatment this year once summer has ended.

I hope you're all having a great summer!

We're home! Treatment #15 is in the books!

I have to say that even after 15 treatments it is still not an easy experience for us. Anytime general anesthesia is involved it is stressful. However, today was definitely the most pleasant and quick experience we have had.

Typically after Elliot is checked into pre-op he is given Versed. This helps him relax and not really remember what is happening. It allows the doctors to take him from my arms to the operating room with no tears. Today the hospital was ahead of schedule and the anesthesiologist said we could either give him the Versed nasally (which burns and is unpleasant) or I could just walk back with him. I've done that once before and swore I'd never do it again. It was terribly uneasy to watch my son be "put to sleep." Instead, I talked to Elliot and told him that this man would take him down to get his "spots" and that mommy would be waiting when he was finished. I waited for the hysteria to ensue......but it didn't! He laid on the bed and they wheeled him away (and the nurse even came back and said he was giggling about the fish on the walls).

Once we got back to recovery when he was finished I expected tears since that's normally what we walk into. But nope! The nurse said "well he woke up chatty so we've just been talking." Not a single tear was shed today. Typically the Versed induces a type of hysteria in him for the 2 hour drive home but today it was all smiles. We will definitely be taking this route in the future! :) I am so proud of our brave boy.

Today Dr. Orringer did a blending treatment. This is a larger laser at a lower setting to help blend out the lines created from previous fading. We were in and out within 1 1/2 hours, and off to Chipotle Mexican Grill!
Now on to the adorable pics!

**Also a huge shout out to my best friend and sister by choice, Alisha, for going with me to nearly all of Elliot's treatments. :) **

Listening to Mickey Mouse Clubhouse 

All smiles in Pre-Op

Smiles in recovery!

Look at that handsome, smiley boy!

Spots up close :)

Chipotle for lunch!