Wednesday, June 10, 2015

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/

Saturday, May 02, 2015

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! 


Tuesday, April 28, 2015

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.
 

Tuesday, March 11, 2014

Update on the little man

I haven't written on the blog in a while, but I figured this would be the best place to update those who want to know what's going on with Ethan as of now. I probably won't continue to post on here, but it's too much for a facebook post.

Around 27 weeks they saw something on the u/s that looked different with the spine. The next week they wouldn't see it, the next week they would. They ordered a fetal MRI which came back normal, but when we saw the perinatologist he was pretty sure that Ethan had a Hemivertebrae of the t11/12 area and that he was missing some ribs. This information sucked, not what we wanted to hear and the fact that the doctor wasn't all that helpful with the information made it worse. He wanted to wait and see once he was born and get an x ray and go from there.

Because of the single umbilical artery, when Ethan was born they wanted to do a renal u/s and check for reflux (urine going back up from ureter into kidney). Around 21 weeks on the u/s, it showed that his left kindey was dilated, but we were told that it resolved around 28 weeks and every time they checked after that, they said it was good. The u/s showed that his left kidney was still a little larger, but the reflux test was negative. The Urologist wants to see Ethan back in April and he will get another u/s at the end of this month to see if it's getting better or worse. They say it's common in boys and generally resolves on it's own. When they did the u/s they also noted a small diverticulum on the bladder.

The x ray showed that there is an abnormality with the thoracic spine (T3), so not where the Perinatologist thought. Because of this abnormality, it caused issues with his ribs as well and because of location, it's affecting the ribs over his heart and lung. Even though we had an idea that hemivertebrae may be the diagnosis, it was like it was all new again because of the location and it being worse than we thought. The doctors thought that because of that and the kidney issue, that Ethan had Poland Syndrome or Vacteryl/Vater syndrome. It was pretty devastating as a parent to be given the greatest gift in life and then be told of these things and not know what lies ahead for him. It was heartbreaking.

We got discharged and the pediatrician set us up with the geneticist at UNM. We saw the doctor there and were told that he does not believe that this is linked to a syndrome, but from the two vessel cord and lack of blood flow to the area during development. He felt that blood testing and everything else were not needed and that it wasn't linked to anything chromosomal. He feels that everything else about him is normal, which was wonderful news.

A week or so after that, we saw Orthopedics at Carrie Tingly with UNM. They did more x rays on his spine but couldn't see exactly what was going on with it yet. What we do know is that his spine is already curving from whatever is going on around the T3 area, so he is diagnosed with Congenital Scoliosis. We also know that his first 3 ribs and 5th rib on his left side didn't form correctly, there for leaving them looking abnormal and that the 4th rib isn't there. Because of the first 3 ribs being abnormal, they formed differently and arch more, making it look like he's missing more than just one rib. The main concern at this point with this issue is how to protect his chest (heart and lung) since he's missing the ribs that would normally do so and as he grows, will those ribs continue to grow allowing his lung and heart to grow as well or will they restrict growth in any way. The Orthopod told us that we would assume Ethan would be tall because of Dan's height and my height, but because of the scoliosis and issue with the spine, he probably won't be as tall as we would think. I asked him if he thought that there would be issues with those ribs not growing, restricting growth of the lung, he said he didn't think they would grow fully, but didn't seem to think there would be any issues with the lung not growing. He said they may want to do an MRI in the future, but they wouldn't do that until he was 2 years of age and that most kids who do require surgery on the spine because of scoliosis, that's usually not done until around 3 years of age. So, at this point, we are waiting. He wants us to bring him back for a standing x ray when he's walking and wants to see us back next February.

We also have to see a Pulmonologist on May 5th. I think he will be able to answer more of our questions regarding protection and how he thinks those ribs will/will not grow and what to expect. I think like what we learned from the other appointments, we may just not know until he grows, so it may just have to be something that's monitored. It's hard not getting answers right away and having to wait, but in the meantime he is doing great. His left shoulder pops a lot, the orthopod said it's probably from his anatomy issues on the left side, but doesn't seem to think it's anything serious and it doesn't seem to bother Ethan at all.

This is the x ray they took at the orthopedic office. Breaks my heart to see it, but you can see what's going on with the spine and ribs.

A lot of people have been asking, so I figured this was the best way to inform those who wanted to know. Continued prayers are always appreciated.

Saturday, June 15, 2013

Budapest, Hungary

From Vienna, we drove to Budapest. This is a place that I have wanted to go for a while and it didn’t disappoint.  I think Budapest makes the list for one of the top places we’ve visited. 

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St. Stephen's Basilica

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Dohány Street Synagogue

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Castle Hill in the background

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Parliament building

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House of Terror! Sorry, they wouldn't let us take pictures inside. It was here where people were detained, tortured and killed during the Hungarian Revolution

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Heroes' Square

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Vajdahunyad Castle-Built in 1896 for the Millennial celebrations, this large complex houses 21 exact replicas of the most magnificent and historic buildings of Hungary

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Fisherman's Bastion

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Views of the City from Fisherman's Bastion

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Matthias Church

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The Hospital in the Rock.This hospital was used when Budapest was under siege from 1944-45 and in 1956. It was upgraded and extended to a nuclear bunker in the early '60s because of the Cold War. They just made it known to people in 2002. They wouldn't allow up to take photo's on the tour

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From this location we walked down the hill and across the Chain Bridge

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I LOVED the Lions at the beginnings of the bridge

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Why they call is a chain bridge

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This thing was delicious! Dough that was placed on a wooded rolling pin like thing, the set in a rotating oven, then covered in Cinnamon sugar...they had other options as well. They call them Kürtőskalács, if you are in Budapest, get one!

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Such an amazing city!

Friday, June 14, 2013

Vienna, Austria

After Croatia, we took a few days off and went back home to Italy before heading to Vienna then Budapest.  It was very cold here, but we liked the city.  At first I felt it was too big and too modern, but once we started exploring the old palaces, that went away.

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We went all over, museums, crypts, palaces, churches and can’t forget the zoo!  I bet the palace gardens are much more beautiful in the spring/summer, but I’m glad we got to see Vienna!