Treatment #17 postponed

Elliot was scheduled for laser surgery on Wednesday, however he was sick. Our appointment was canceled and he's now scheduled for January 20th. He was actually quite bummed....he really looks forward to that Chipotle, and the fact that he was going to get a longer Christmas break, haha. 

I hope everyone has a very merry Christmas and a happy new year! We really do appreciate all of the support from our readers!

Looking for makeup?

Hi everyone!
Whew...it's been busy around the Thorp household! I didn't realize I haven't posted since September...the time is flying by!

I had to share this real quick with all of Elliot's followers. Makeup is not something we've considered, or are considering yet, though it may be in the future. A month ago I signed up as a Younique presenter because I personally love the the makeup.

One of our best sellers this month is the Liquid Mineral Touch foundation. I personally use this and love it but after seeing numerous posts about "watch it cover ____" I decided I wanted to see how well it covered a Port Wine Stain. Most makeup for PWS is very pricey so I was hoping we were embarking on a cheap option!

Well lo and behold...it disappeared before my eyes. Elliot was a trooper and let me test my foundation out on him (for $$ of course haha). I used 3 drops of my Velour Mineral Touch liquid and my jaw dropped.

I just wanted to share because if you're someone who has a PWS and are interested in a foundation to cover it...I wanted you to know there is an affordable option. Feel free to message me if you're interested in a color matching!

Elliot goes in on Dec. 16th for his next treatment, and I'm going to "guinea pig" him again to see how it covers the laser spots. Stay tuned!

If you're interested in the foundation visit www.JenasBeautyBoutique.com

xoxo,
Jena

Elliot's in Kindergarten!! Say What?!?

I cannot even fathom how the years have flown as fast as they have. One minute I was nursing my beautiful baby boy and the next I was walking him to his class on the first day of kindergarten! It is so cliche to say but they REALLY DO grow up so fast!!

Elliot is really enjoying kindergarten. The first couple of days he shed some tears, as I expected. But now he jumps out of my car every morning like champ. His best friend Aislee is in his class and I think this has really helped him to adjust.

One of my biggest fears of sending him to school was how others would react to his port wine stain. In preschool it wasn't AS scary because he was only around kids his age. However, since our kids attend a charter school he is surrounded by all ages of students. I asked him after his first week of school if anyone had asked what his birthmark was, and he said "just Emma's friend Teagan on the bus" and that was it. He is lucky to have his own little group of supporters at school. Not only does he have his siblings, but also my best friends (Alisha) 3 kids and all of our neighbors.

Elliot will be having another full strength treatment in December. We had considered stopping at the doctors request, however after a summer full of LOTS of outdoor time and not enough sunblock it seems that the mark is beginning to darken again. When we lived at the apartments I was diligent in applying sunscreen almost every single time we walked out the door. That's because going outside was a process that involved me ALWAYS. Now that we have our own house and yard the kids are in and out constantly from the moment the sun rises. This has caused frequent sun exposure without proper sunscreen way too often. I have decided to put a small shelf by the front door to hold the sunscreen products and hats...with a sign to help Elliot remember that we HAVE to put it on before walking out.

That's all of the update I have for now. I really appreciate all of the followers that his blog has gained since it started, and I truly hope that our journey has helped even one person who was given this path in life.

xoxo
Jena

Elliot's eye appointment 7/28

Elliot had his 6 month eye appointment today with Dr. Luparello. He was in quite the silly mood today and was being VERY hyper. But for the first time in probably 1 1/2 years he actually sat still and let them check his pressure! His pressure today was 18 which is in the normal range. She said everything looks great! I'm so thankful that his eye has not been affected. :) We will go back in January for his next check up.

We're thinking about doing another treatment in December on winter break. This summer has been rough for keeping sunblock on 24/7. I feel that his PWS has darkened back up slightly, so we will get another treatment to help lighten the effects from this summer.

Here are some cute pic's from his appointment!

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!

Summer break and a video!

Elliot graduated preschool! Ahhhh! Where has the time gone? Seems like just a short time ago that he was a newborn. He's learning his letters, numbers and sounds and doing great. I'm very proud of him!

Appointment Canceled

Just doing a quick update to let everyone know that we have canceled Elliot's laser appointment that was scheduled for tomorrow. The weather has been beautiful here in Michigan and it's so difficult to keep him in doors for the time needed following treatment. Also, he has his Kindergarten orientation on Monday and he's beginning to feel self-conscious with his dark spots. Doctor Orringer said last time that we're good to take a break for a while and he feels this first initial phase is complete.

Elliot has just a few short weeks left of preschool and then he will be done! It's just so hard to believe how quickly he's growing up. This week he learned to ride his bicycle without training wheels! I had to choke back the tears as I was celebrating. He took off within a day like he had been riding forever. :)   I can't wait until Elliot is older and can peruse the blog and see all of the posts. So when you're reading this buddy...Mommy LOVES you!!

Elliot's first stitches :(

Just had to share Elliot's first injury and some cute pics. This week he was jumping on a friends trampoline along wit several small toys. Their German Shepard was trying to "fetch" the toys from underneath it, when its tooth went threw the trampoline and into Elliot's foot. :( he had to have 4 stitches but he watched the whole time and handled it like a champ (like always!). Then he had two shots the next day :( It's been a rough spring break for him!

Project time!

Elliot is painting a birdhouse today, hoping for Spring to come soon!

His spots are taking a little longer to fade than I anticipated this round. He has been back to school this week and it's not bothering him at all. :D

1 week post op, tx #16

I Elliots spots are healing pretty nicely. He does have a small scab underneath his eye area. He has seemed to be leaving it alone so hopefully it won't scar. Here's a picture of him showing you his spots! :)

And a silly pic from St Patties Day

3 days post op #16

We had a fun family day at our Aunts house for my cousins 17th birthday. Elliot enjoyed getting outside  for a while this evening when it was overcast. The worst part of all of this for him is not being able to go out and enjoy the sun on beautiful days! 

He's doing well though. He had swelling the day after the treatment but that subsided quickly. He asks me to put the Eucerin cream on a couple times per day. :)

Treatment #16!

Well, we are home from the hospital and Elliot is doing fantastic. He's a little sad that he can't go outside and play today because the weather is beautiful. Mommy is keeping him occupied inside instead. He did AMAZING once again. No pre-med (Versed) and no crankiness after....besides being a little grumpy about the nurse not taking the IV out immediately haha. Dr. Orringer consulted with me after the treatment and said that after his next blending treatment we're basically done with this first round. He thinks it looks great and we aren't really achieving further lightening *besides the blending that we've been doing* so we will take a break and just do maintenance treatments when needed. I LOVED this news, and so did Elliot. When I told him he gets a break he said "yay!" He's so amazingly strong and I just can't even express with words how proud I am of him.

After we left we went to Chipotle, like always. ;) He was wound for sound. Dancing, running and doing push ups HAHA. He then ate his kids meal and a half of my enormous burrito. This kid can pack the food away like there's no tomorrow!

I will try to be more diligent in posting healing pics this time. I've been slacking lately. On to the cute pics. :)

On our way! It was a foggy, early morning.

Blood pressure check.

Just getting in the car. Rockin' that messy 'do :)

Mommy and Elliot at Chipotle. 

Shoving his face like he's starving lol

Me and my best friend Alisha...who is always there by my side. :)

Laser treatment this week!

It's that time again! Elliot goes to the U of M on Wednesday for his 16th laser surgery. This week I've been reminiscing about all of the treatments and appointments this kid has been through and I am just AMAZED at the strength he has. I'll never forget the apprehension I had before his first treatment, and it took all of the courage I had in my body to go through with it. While it is definitely not easy at this point, I can say that I am thankful that I had the courage I did back in 2011 to begin this journey. I remember the hours upon hours of research that I put into port wine stains, laser therapy and Sturge-Weber Syndrome. Countless nights of sleep were lost. I reached out to whomever I could that was on the same journey that we were embarking upon. I met two amazing mothers who I friended on Facebook and I truly think that their journeys inspired me to find the courage necessary to go through with all of these treatments. One mother talked to me about how many treatments her daughter had went through. At that time it was around 20 treatments. I remember thinking "oh my gosh, I am not strong enough to do this for that long. That's A LOT of treatments." Well here we are, getting ready for treatment #16. There are moments when it feels like it has been a life time, and others when it I feel surprised that he has had so many treatments.

This evening I was talking to Elliot about him getting his "spots" on Wednesday. He asked if they were going to use that mask again (the one they use for anesthesia) and I told him yes. He smiled. He actually SMILED. Last time the nurse let him bring this home, and he remembers because we skipped the Versed last time. I just stared at him, looking into his big brown eyes, and was amazed at the strong little boy that we are raising. Sure he's a handful, and sure he gets on my nerves a million times a week at this age....but he is an amazing little boy and I wouldn't trade him or his birthmark for anything in the world.

I look forward to the day that he can read and browse this blog. He's been my #1 reason for all of these posts and pictures. I want him to read my thoughts and feelings one day and I want him to be able to see how strong he is.

I love you Elliot James <3


To all of our readers, thank you so much for following along on our journey. I hope that this blog has helped at least one other parent, who like me was new at this once too. I'll be back with more this week!

Eye Doctor

Elliot went back to the eye doctor today. She said everything looks great! His vision is better than perfect and his optical nerve looks great. I love happy appointments!