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

Post treatment #17 Healing

Hi all! It will be one week tomorrow since Elliot's treatment. It's healing pretty nicely, though there were about 10 that scabbed (some very light, some heavier). We have been keeping Eucerin cream and a non-petroleum natural jelly on them to prevent them from scarring badly.

Elliot is about a year older than he was when he received his last full treatment. He has expressed that it does hurt when I rub cream on it (though he didn't today). I've been told by many people that it feels like a sunburn. It definitely hasn't slowed him down any LOL. He and his big brother, Ethan, love to wrestle and Elliot hasn't mentioned any pain other than when I am applying the cream. He also said the Lavender oil was burning when I attempted the first 2 days so we've stopped that. I think I will attempt it again on Friday once it's had more time to heal.

The first picture is from Monday night (5 days post-op) and the second is from tonight (6 days post op). The full treatments do take longer to heal.
*The deeper purple spots are where there are scabs.*

Post Op #17-Day 1

Elliot woke up with some swelling today. I expected this since he had a full treatment, including the eye area. His eye was swollen shut when he woke up but quickly opened. We had a very lazy day that included binge watching Animal Mechanicals and eating chicken noodle soup. I'm very blessed to be able to be home with him during this time!

I always find it fascinating to see the spots and their differences after. If you notice, along the outside of his face those spots are more white in the middle than the deep purple spots. This is part of his mark that has faded the most through treatments, thus not destroying as many capillaries during the laser therapy. The spots of his birthmark that are darker show the deep purple spots. I just thought that was interesting and wanted to point it out. :)

*This picture looks much darker than it did on my phone. I will get a clearer picture tomorrow, but you can still see the swelling. 

Laser Tx. #17

Everything went as planned! The weather was a little snowy on our trip to Ann Arbor but nothing we couldn't handle. Elliot woke up healthy and well enough for his procedure. We arrived at 9:45 for check-in and he was in the operating room by 10:10 am! Talk about speedy service! No pre-op med again and he did very well. This helps his post-op recovery so much and we were out of there in a blink of an eye. We did a "full treatment" this time meaning the maximum joules that he can handles and the entire Port Wine stain area. Since we were not diligent with the sunblock this summer I felt that it was best to get a full treatment, rather than just a blend.

We, of course, went to Chipotle afterwards. That's become our "thing" and he really looks forward to it. Usually Elliot orders a kids meal and eats a little of my burrito. This time he wanted his own burrito! If you've never been to Chipotle..you need to go! These burritos have to weigh 2 lbs by the time we're done filling them, haha. He ate nearly the entire thing (just a little shell and rice left over) plus some chips.

Aunt Lisha went with us like always. :)  I enjoy getting to spend the afternoon with my best friend and she's the perfect support I need. We stopped by Toys R Us on the way home (and by "stopped by" I mean we spent an hour browsing the entire store!). He was thrilllllled until we discovered they didn't have the one thing he was looking for...go figure!

I will post some follow-up pictures as his "spots" heal. I'm also going to test out the Lavender oils on a small part to see if it helps the spots fade quicker. I've heard this has helped others and it's worth a try! Elliot will be missing a couple weeks of school while the spots fade.

Pre-surgery

Picking his stickers before leaving!

Elliot's burrito the size of his head!

All ready to head back!

Snuggles with Mommy at home <3

Laser Surgery Tomorrow!

Elliot is scheduled for his treatment tomorrow at Mott's Children's hospital. Fingers crossed that nothing comes up between now and then! Today we are gathering his school work for the next two weeks since he will be missing school for recovery. Stay tuned for pictures tomorrow!