Thursday, September 20, 2018
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. ;)
Wednesday, September 19, 2018
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
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
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| Checking in to Pre-op |
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| Ready to head back! |
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| Spots complete :) |
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| His hair was making his spots itch, so we problem solved. ;) hahaha |
Friday, December 29, 2017
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.
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.
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| Waiting to go back (without pre-med still!) |
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| In recovery |
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| I love this face |
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| Reading on the couch |
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| All the kiddo's ready for Christmas! |
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| Kissing our elf Jingles good-bye for the year! |
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| Christmas morning cuddles with his momma and Hatchimal |
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| 9 days post-op. Spots fading nicely |
Sunday, November 5, 2017
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
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
Thursday, September 21, 2017
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
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
Thursday, January 5, 2017
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.
That's all for now! I will get some recent healing pictures up this weekend. :)
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.
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| Waiting in the Pre-Op room |
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| In Recovery |
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| Eating Chipotle after leaving Mott's |
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| Christmas Day |
That's all for now! I will get some recent healing pictures up this weekend. :)
-Jena
Thursday, October 13, 2016
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
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