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!

-Brittney

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,

-Brittney

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!

-Brittney

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.