Congenital Scoliosis Awareness Month

I was contacted a few days ago asking if I would share Ethan's journey on a blog that informs people on congenital scoliosis. Of course, I didn't mind, I love helping people out and giving what information I can to help anyone along this journey. I have 1-2 people a week write me on Facebook or Ethan's VEPTR page asking for info and trying to get care for their child. It's great to be able to help others out, especially when VEPTR moms were all so helpful to me in the beginning, it's a scary thing. There are many types of scoliosis, but congenital scoliosis is when a child is born with something structurally wrong with the spine that is causing the scoliosis. It's not what you remember getting tested for in gym class when you had to wear the bathing suit to school. Most times, it's caused from hemivertebrae, generally more than one, which offsets the spine and gets worse as they grow. Surgical intervention is usually required, whether you get the hemivertebrae removed and the spine fused, or, if like Ethan, you get VEPTR implants because it's already affecting your lungs. So, I wrote up our story, tried to keep it short and to the point...and here it is! He's a few stories down, Ethan's Congenital Scoliosis and VEPTR Story. http://norasjourney-early-onset-congenital-scoliosis.com/faces-of-congenital-scoliosis/

T-shirts!

Finally finished designing shirts for our little guy. A friend from middle and high school drew up a few different ideas and we combined two of them and came up with our logo. 

I've seen other VEPTR Momma's that have shirts created for their kiddo and have people wear them on surgery days to show their support. Ethan has a long road ahead and I think it's a great idea to show him all the support he has with each surgery. 

Here is the link to order shirts, if you would like to participate. https://www.booster.com/ethanveptrstrong?share=651430518637740

The idea is to post your photo on surgery days, or any day, with #EthanVEPTRstrong so all the photos will go to the same place. 

For anyone wanting to follow Ethan's journey on facebook: www.facebook.com/ethanveptr

Thank you for your support! 

Blogger app!

 

I've just discovered the blogger app! How neat. I haven't blogged in a while, mainly because I got a Mac, which I love, but I can't use windows live writer on that. It's just a pain to write a blog on the Mac and put photos in, so...let's try with this, see how this works out. 

A lot has happened since I last wrote over a year ago. Ethan is growing up so fast and is quite the amazing little boy. He's a great sleeper, happy when he's awake for the most part and just a joy to be around. 

My last post stated docs here in ABQ thought Ethan would be good. After his pulmonolgy appt at 4 months old, he also was very wushu washy with everything. Ethan now had good head control and when I held him under his arms, I could tell his left shoulder felt higher and I couldn't feel the bottom of it. I got online and started researching doctors who specialized in chest wall deformities and sent emails with his records to the chop in Philadelphia and also San Antonio. Both places called back stating they thought he needed the veptr (vertical expandable prosthetic titanium rib) and that we should be seen. We decided to travel from NM to philly to go to the chop, as Dr. Robert Campbell, one of the inventors of the veptr, was there. In August at 6 months old, Ethan got many scans and saw many doctors and it was established- he needed two veptrs and was officially diagnosed with thoracic insufficiency syndrome. His left shoulder blade was inside his chest cavity attached to his lung! His left lung capacity was 60 cc's when his right lung was 211 cc's. So, we had to now get weight on him for the surgery (because he breathed faster, he burned more calories) and he was scheduled for November.  In November he got two VEPTR implants and surgeries will occur 2-3 times a year until he is done growing in his teens. The surgery was rough, but he's doing so well. He get pt weekly, OT biweekly, sees a mandala biweekly and also an infant massage lady biweekly. He's very sensitive and is hyperaware of everything going on around him. These therapists have been doing so well with Ethan. Next surgery is scheduled for August. 

I am no longer working and stay home with him, which I love. I am active on many pages on Facebook- congenital scoliosis, veptr kids, sprengels deformity, military efmp and I try to help out when I can. Almost every day, a new person finds out their child has congenital scoliosis, missing ribs, sprengels deformity...and reach out for advice, where to take their child for care and posting x rays to try to understand better what lies ahead for their child. I've become friends with many women on these sites and connected in a way that I cannot connect with anyone else, because they understand. I am so thankful for Facebook and these groups. When I first researched VEPTR, I was trying to find anything I could. I found blogs and if I could be of some help for anyone searching and comes across my blog, I think that's a win. Check my about me for my email and email me any questions you may have. 

I will end this post for now and try to be better about updating now that I have the blogger app on my phone. I'm interested to see how the layout is once I post this, might not be pretty. 

Hope all is well out in the blogger world. Here are some photos of the little guy.