Tuesday, May 22, 2018

Hubby is HOME!

So happy to announce that Dan made it back safely from his deployment a few weeks ago today! Ethan and I drove about an hour to pick him up from BWI and Ethan was SO excited to see his daddy, it melted my heart! Check out Ethan’s Veptr Journey on Facebook to see the adorable video when Ethan saw his daddy walk thru the doors.
We’ve been hanging out as a family, we went to King’s Dominion amusement park and trying to have as much fun as we can with all of this rain and school/therapy. We just got back from a trip up to Philadelphia, Ethan’s surgeon wanted to see us when dan got back from his deployment. So we went up Sunday, which happened to be the 5th annual thoracic insufficiency syndrome reunion at chop. We got to meet other veptr families and kiddos we’ve only known from the veptr kids Facebook group. We got to celebrate the amazing doctor who invented this device and gave our children a chance for life. Pretty amazing.
During the appt Dr. Campbell mentioned he wants Ethan to have x Rays in 6 months and we’ll see if he’s good to wait longer for surgery. He said it may even be another year or two until he needs surgery next, which is unheard of! Waiting a year like we have is unheard of, but waiting even longer is just plain amazing. Ethan does horribly with the surgeries, so any extra time we can wait is an absolute blessing! We are now back home, Dan is off this week and will return to work next week. He will be starting a new job at the pentagon and on Capitol Hill. We are so excited to be able to enjoy our summer without a surgery lingering over our heads. We also traded in the Land Cruiser for a Lexus model that's much newer. It's sooooo nice, we love it! Lots of things happening, but all for the best!

Friday, March 16, 2018

Always waiting for the other shoe to drop

Do you ever feel that way? I don’t think I generally do, but I’ve been bad about that lately. It’s Murphy’s law…when your husband is deployed, anything and everything that could go wrong, does.

Last week Ethan and I went to Ft. Belvoir to have his back x rayed. He’s been putting his hand on his back a lot, but not in any pain, so we just wanted to make sure everything with his rods looked good and this would tell us if we could wait until this summer for his next surgery. No task is easy for Ethan, it breaks my heart. Stepping on a scale at the doctors office completely sets him off and he’s just terrified. X rays were no exception and they ended up having to take double what they needed because they couldn’t get clear images with 3 of us holding him down. I got the disk and mailed off to Philadelphia and have been waiting to hear. The nurse wrote to tell me she got them and would ask Dr. Campbell what he thought, but mentioned how he has grown, asked when my husband will get home from his deployment in case surgery needed to be moved up and that she would ask the doctor and get back to me. Today she wrote back saying that Dr. Campbell reviewed the images and compared with his last and he doesn’t think he will need to have surgery this summer, but wants to see us when Dan gets home. First thing I think is that’s AWESOME! But then worry sets in…why does he need to see us? Does he need to tell us something else? It’s WILD. I think it was just the way it was communicated, there was no reassurance that everything looked great and this was great news, it was just, “may not need surgery this summer, but you need to come in.” The nurse practitioner called to set up an appt and I just got a weird vibe. I’m sure at that point she was just trying to assure me all was well, but it all just seemed a bit off. If there’s one thing I’ve learned, it’s to enjoy each moment, so I’ll shove these weird feelings in the back of my mind and keep on keepin’ on. It’s hard to do, you always have that next surgery looming and creeping into your thoughts. I started worrying about this next surgery shortly after Thanksgiving. He does not do well with the surgeries at all and this next one is a bigger one with his rods needing replaced. His VEPTR’s don’t bother him right now, he’s all boy, jumping, crashing, completely wild and I love it for him, it doesn’t slow him down. WIth a replacement, they have to take everything but the anchors out and replace it all, it’s so much involvement with the skin, muscles and moving his shoulder blade. Much more pain than an expansion, which he doesn’t do well with either. I worried they would damage a nerve or that he would be in pain all the time. It sucks. So much. I do feel relieved that we can push this surgery back even more. Dr. Campbell invented the VEPTR devices that Ethan has, it’s been amazing going to him and being under his care. Not sure when he will be retiring, but I’m hoping we can find someone like him that takes Ethan’s unique situation in mind. Most docs won’t wait longer than 6 months to do surgery, he waits a year and this go round, it looks like it will be longer. Just so exciting and hope this continues throughout the years! Ethan is super tall, so I was literally thinking he’s grown out of them. So great to get good news.

I am very thankful for my little boy. Times get difficult and we have our struggles, but there is always so much to be thankful for! I also can’t wait for warmer weather and Dan to be home and our family to be complete again. Ethan misses his daddy. May can’t come soon enough!


Wednesday, March 14, 2018

Update on Life

Man..where to start? Life has been busy! I wish I would have kept up with writing on here, but I’ve at least kept up with writing emails to my kiddo that (I hope) one day he will be able to enjoy.

I’ve not written much since we moved back from Italy, honestly. We had our son and his medical issues kept us busy, I took the time to enjoy every moment with him. Albuqueruque, believe it or not, will always hold a special place in my heart. We bought our first home there, had our son, met some amazing people that will forever be apart of our lives. Being away from family and not knowing what was going on with Ethan was incredibly hard, but my coworkers were absolutely amazing and I miss them every day.

We’ve been in northern Virginia now for almost 2 years, which sounds crazy, but we like it here as well. We are closer to Children’s Hospital of Philadelphia for Ethan’s surgeries, the services for autism are also good here as well. Ethan started a preschool autism class last February, which was a huge obstacle for him. After a little over a year, he is doing so, so well there. We love our BCBA that comes to the house for therapy daily and also his OT/speech therapist as well.

Dan deployed in October and things have been interesting around here. Ethan and I have settled into a routine, but nights and weekends are the hardest since it’s cold outside and it limits us to what we can do. We went to Florida for the holidays and spent 4 weeks there, which was amazing. It’s always nice to take a break from therapies and thaw out for a bit in the middle of winter. Ethan turned 4 in February, so we had some friends over for a little celebration.

We’ve been having issues with our heat and discovered we have an oil leak, so waiting for the landlords to get their ducks in a row with that and dog up the tank and contaminated soil. I got a 20 gallon fish tank set up for Ethan and he LOVES it! Right now I have to salt and pepper cories, glofish and a gourami.

I started a ketogenic diet mid November and have had great success with that. I feel great and have lost a lot of “stress weight” that i’ve carried since having Ethan. Even with a month stall, I’ve lost 34 pounds! Crazy! I love it :) I was looking thru some pics today and I can finally tell in my face that I’ve lost some weight, which is always a good thing! I also chopped my hair off! Got a long bob cut, the lack of carbs killed my long, healthy hair, but I do love the new cut. This is a pic from last week, me and my sister were posting pics on snapchat and thought this one turned out pretty good. Why can’t snapchat filters apply to real life, minus the flames coming out from my head? ;)

Life is pretty good, considering. Ethan’s having some adjustments, which are always hard, but we get through them. We had x rays last week, which is a chore because he is terrified of everything, to make sure his titanium ribs look okay and to determine if we can wait until the summer for his next surgery, just waiting to hear back from CHOP about that. We will get his service dog in about a year, which makes me SO happy! I truly think this will help him so, so much and many people in our lives are invested just as much as we are, so I know this will be an exciting time.

That’s all I have for now! Dan will be back in May, so we are very close to the end of his third deployment and excited to have him back in time for the nice/hot weather.

Until next time,


Sunday, December 03, 2017

Dancing Orchids!

I was recently approached to write a post for a product review, I got to go on their website and choose anything of my liking for a neutral review. I love color and I love orchids, so I chose the dancing purple orchid!

When I was browsing their website, there were so many beautiful things to choose from. Any holiday or season, you name it! I chose purple because it reminds me of our wedding colors, especially the beautiful bouquets we had. It was hard to pick, I will admit, there were so many amazing things on their website, I wish I could have gotten more. To check out their site: www.silkplantsdirect.com

I wasn't sure what to expect when it arrived, since I don't have many fake plants in my home, but when I opened it, it was such a beautiful piece and adds so much color to the room. The quality of the piece is very good and looks good on the floor or on a table. I actually had it in both places, but I like it most on top of our wine rack that we brought back with us from Italy, loaded with Italian wine, of course!

What do you think? Beautiful, right?

This is the sister company of http://www.commercialpalmtrees.com/ , so if you are needing any custom fake palm trees, this is the site to get them!


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


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.