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!