Life with Parkes Weber syndrome: Grayson’s world

Definitely shed happy tears today, we went to orthotics and Grayson finally got his first pair of shoes! The second shoe had to stay to get a lift put on to make up for the length difference in his legs but it was definitely such a bittersweet moment for us because we have struggled so much looking for shoes that fit both feet.

Today was definitely a bittersweet day Graysons physical therapist is moving so today was our last day of therapy with her she’s been with Grayson since he was a baby and has not only helped him thrive but she showed so much care and helped us both along the way. We are going to miss her so much!

Grayson is being admitted overnight because he lost a little more blood then they’d like but other than that the surgery went very well!

Grayson got the all clear on his echocardiogram the other day his heart has no more dilation in his heart! We were also told he will not need any braces or the SMOs as well! He’s a happy thriving one year old and he doesn’t let anything stop him! He has surgery this Friday and this one might be a little more complicated due to the Parkes Weber so please send some prayers our way for a fast and successful surgery!

Grayson had an appointment to be fitted for Smos today they will help with helping his heels into the proper alignment, lifting and supporting his leg, and will keep his toes inline with the foot. He will also have to have a lift in his shoe to help him from walking properly since his one leg is longer.

We are taking our family vacation this week and Grayson is having a blast with his big sister!

We’re home now, Grayson is in pain but he’s recovering like a champ! The surgery didn’t go as planned so we’ll have to go back a second time for a second surgery. He has an infection and he also had a hernia they had to repair so they could only do one side.

Grayson has surgery tomorrow in Atlanta at 5:45 am, this procedure will have nothing to do with his leg but needs it done to reduce risk of testicular cancer and to be able to have children when he’s older it’s called orchiopexy. I will update tomorrow please pray for a successful surgery and speedy recovery!

All of Graysons appointments the last time he went, went well and he doesn’t have to see his specialist until August! But next week he has orchidopexy surgery so I will update the day of his surgery!

Grayson had another Echocardiogram today his left pumping chamber in his heart is dilated but his squeeze functions are normal and he has no problems with his heart! He’s doing so well his next appointment isn’t until August 3rd!

Some days Graysons birthmark on his leg is very red and some days you can’t even tell he has a birthmark! Love my baby boy so much!

This is what Graysons MRI looked like when he was first born. He will have to have a procedure done in the future where it will get rid of a bunch of the extra arteries that will cause his heart to over work. but this will not affect the size of Grayson leg his leg will always be larger than the other.

I decided to make a page for people to follow along with Graysons medical journey since there will be many updates during his life! And maybe add some education for people who would like to know more and hopefully help other parents along the way down the road if their kids get diagnosed with Parkes Weber syndrome as well because I know how overwhelmed I was when Grayson was first diagnosed when he was born! Thank you all for following along and supporting us! If anyone has any questions or would like to know more about Parkes Weber let me know!