Wednesday, July 23, 2014

And She Lives Happily Ever After

Greetings and a Reminder:

I write this blog as we go through ET Mehta Casting with our daughter Olivia. The blog is intended to inform, possibly inspire, and raise awareness of Infantile Scoliosis and its treatment/cure. Please share our story. For more information please check out http://www.infantilescoliosis.org/ 

I write this blog post on the 2 year anniversary of Miss Olivia's first cast. I can remember that day like it was happening right now. I don't need to go back and read my original post to remember every little detail of that day. 



Two years.

I can't believe two whole years have gone by! So much change has happened over those two years. Olivia is now an independent little lady about to start pre-school.  We're approaching the one year anniversary of the move to our new home. Olivia has welcomed a new cousin and is soon to welcome another cousin into her life. 




To say we have been blessed is an understatement. 

Let's back up a little in order to catch up to now. My last post was in January and I mentioned that we were heading to Children's for an x-ray. I was nervous because she hadn't been wearing her brace for a month due to her being ill and then complaining that it was bothering her because she pretty much had outgrown it. I promised a post that never came. Our appointment that day was cancelled due to weather and had to be rescheduled for the end of the month. Life got the best of me and I never updated.




We went for the appointment and I am pleased to say the x-ray looked great and Dr. G was impressed by how well she was maintaining, despite being out of the brace for almost two months at that point. The plan was for her to be in a brace for a year. She had only been in a brace for 5 months. Her x-ray looked good so Dr. G gave us the option of either fitting her with a new brace, or riding it out brace free, which we would monitor closely at home and see him again at the end of June. We took the latter. It was such a thrill to be given that option, which we of course took with extreme caution. 

Following our visit with Dr. G we had to head down to NOPCO so Olivia could see her friend Ben. She brought him a bag of M&Ms (her request), which he shared with her. If you go to the NOPCO at Boston Children's Hospital I recommend you see Ben for bracing if you can. He had such a way with Olivia. She still talks about him. We said our goodbyes, which was bittersweet. I knew how much Olivia adored Ben, but I was hoping it would be our last visit to NOPCO.

Fast forward to the end of June. I was watching Olivia's back closely for the five months following our January visit and was confident we would get a good result on her x-ray. Sure enough her x-ray came back with an under 5 degree curve! We were officially graduating to a scoliosis free life! It was the happy ending we had been eagerly waiting for! Of course I still look at her back constantly and won't skip a beat if I notice anything out of the ordinary, but to be officially done with it all is such a wonderful exhale to a breath I've been holding for 2 years. We're not scheduled to return to Children's until next June!













Now that we're in the full swing of summer I catch myself staring at my neighbors' and friends' babies. I eye their sun kissed backs to check that they're straight. I hold my neighbor's little girl who is the exact age Olivia was when her first cast was put on and I'm reminded of Olivia's inability to snuggle up to me the way this little one does because she was inhibited by a rigid cast. I can't lie and say that I don't have moments where I become sad and feel robbed of those soft cuddles. 

Those feelings are short lived because I tell myself that there are worse things that parents and children in this world go through and that this little hiccup in our life is really a grain of sand in the broad scheme of things. I am reminded of how blessed and lucky we are that we had access to casting every time I look at my daughter standing straight and tall. What could have been a painful, surgical nightmare was avoided thanks to the efforts of so many. 

I know I've said it before, but overall I am glad we went through this as a family. It made us appreciate the little things we could have so easily taken for granted. It proved how strong we are as a family. It also gave me the opportunity to spread the word about Infantile Scoliosis and help other families. I would NEVER had known this even existed had it not entered our lives! 

I can't begin to express my gratitude to everyone who has read our blog. When we began this journey it became a goal to help other families going through this, and to educate others that this exists. I can proudly say we have been successful. At our last appointment one of the first things Dr. G said to me was that people are reading the blog. Families come in and they talk about the blog. That's the beauty of this whole thing. Though we are coming to the end of our journey, there are so many other families out there whose journey is just beginning. Yes, that first diagnosis is a terrifying thing. I've written this blog to show that it's doable, that there's a light at the end of the tunnel, and that you're not alone. I also wrote it so Olivia knows her history, her story. 

Everyone's experiences are different. Everyone's story is different. Everyone's happy ending from scoliosis comes at different times. We were VERY lucky. Olivia is a fast grower, which was in her favor. A minimum year of casts turned into 10 months. A minimum year of bracing turned into 5 months. That is not the norm. Regardless, no matter how long your journey is you will get there. 

Though I won't be posting very often I'm not disappearing off the grid. I will continue to pop in now and then so you can hear about our adventures as a cast free family. I am ALWAYS accessible via Facebook if you have any questions or just need to hear a reassuring word or two. I won't be a stranger, so don't you be one either. 

Thank you. 

There's a light at the end of the tunnel. You are not alone.


Wednesday, January 1, 2014

Where Have We Been?!?!?!


Greetings and a Reminder:

I write this blog as we go through ET Mehta Casting with our daughter Olivia. The blog is intended to inform, possibly inspire, and raise awareness of Infantile Scoliosis and its treatment/cure. Please share our story. For more information please check out http://www.infantilescoliosis.org/ 


Hello! 

I know! It's been over 6 months since the last time I've written. No news is good news right? Brace life for the most part has been pretty smooth and quiet. Olivia continues to be a trooper, though she does complain now about it being too tight. 

When we went for her appointment in July, one month after receiving her brace mind you, NOPCO was concerned with her growth and wanted to replace the brace. ($$$$) After a second opinion and some gentle persuasion they let us keep the current brace. We have an appointment this Friday morning, which we are anticipating a brace replacement. This, even with insurance, is quite the expense, and a disappointment seeing as we were told she would only need one brace for the duration of the year. What can I say? Our daughter is a weed and just won't stop growing!






The good new is her back is holding beautifully. It's such a wonderful thing to see that nice straight line!






Outside of the world of scoliosis our family has experienced a great new change! We moved into our new home on Labor Day Weekend. Olivia LOVES her new room and big girl bed. She enjoyed a wonderful summer full of swim lessons, dance class, yoga and beach days in Maine. These are activities we will NEVER take for granted. 



Here our some pictures so you can see how much our nugget has grown! 

Coming soon....A new post over the weekend. :-)












Thursday, July 4, 2013

"Brace" yourselves ;-)


Greetings and a Reminder:

I write this blog as we go through ET Mehta Casting with our daughter Olivia. The blog is intended to inform, possibly inspire, and raise awareness of Infantile Scoliosis and its treatment/cure. Please share our story. For more information please check out http://www.infantilescoliosis.org/ 

We certainly enjoyed a few weeks cast and brace free. Olivia was fitted for her brace on Friday June 21st. The week leading to it I prepped her as best as I could explaining that she was going to get a new "turtle shell" and that it was like the cast but it could come off. She would always say "yes" to me. I would ask her how she felt about that and she would say "sad. no cast". So I was very nervous about how the day would go. As always, she surprised me!

We went to NOPCO (National Orthotics and Prosthetics Company) at Children's for 11 AM. I misunderstood at our last appointment and I guess that I had to make a nurse's appointment directly following our brace appointment to receive information on wear and care for the brace. I didn't learn this until the following Monday. Oh well. Our brace tech, Ben, did an awesome job filling us in and we haven't had any problems so far. 



I had been warned by other scoli parents that NOPCO can take a long time, so I was prepared. I'm telling all of you so that you can be prepared as well. Our appointment from start to finish went from 11:00 AM to 4:30 PM. Why does it take so long? Your brace tech uses this time to trim down and better mold the brace to your child to ensure that they can wear it comfortably. 

We went in and Olivia had to put on her undershirt, and Ben brought in her brace. Initially the brace was VERY high, and VERY low. I remembered at our initial fitting being told that they make the brace in full and then trim as needed. Ben (who Olivia still talks about btw) put the brace on her and then marked in sharpie where to trim. He then took it off and went into the shop to trim it down. He was back in about ten minutes and had her put it on again, made more marks for trimming and then said we could come back in a half hour. At that point we went to get some lunch.










When we came back she put the brace on again and he had her sit in it so he could look at her back side, under arm, and legs. He made a few more marks, trimmed and came back. Each time he put the brace on her he asked her how it felt, and she would tell him it was tight and show him wear. It was amazing how well she was communicating. She was also extremely well behaved and did everything Ben told her to do. He really took to her and you could tell he was doing everything he could to make sure she was comfortable in the brace. He then took the brace one more time to the shop to flare out the legs a bit to make it more comfortable when she sat. 







When he came back he showed me how to put it on her and made the initial tightening marks on the velcro and the final tightening marks. Olivia needs to "break in" the brace. Because she was in a cast breaking in for her is a little different than for an adolescent wearing something on the torso for the first time. We were able to start her on stage two and tighten it all within the first week. You can see what I mean here. For the first five nights she didn't wear the brace overnight. She has been wearing it overnight since, with no complaints. 

Ben wanted to make sure things were going well so when we go back on the 26th of July he wants to see her and check out the brace. As we were checking out (and I was maxing out my credit card $$) Ben gave Olivia sticker AND chocolate. Heehee. 

On the 26th we go to see Dr. Glotzbecker so he can check out how she's doing in the brace, and they will do an xray to make sure the brace is working ok. 

Olivia loves her brace. She shows it off to everyone she meets. What I think helped was when she went to play with a group of kids and one of them hugged her and he looked at me and said "Whoa. Her back is hard....what's on it?" I had Olivia show him her brace and he was like "That's cool!" She was really proud of that. She loves the attention.

Brace life is different from cast life. For starters she can get wet and it's ok! We just wipe the brace down. She gets four hours a day out of the brace which means cuddles and baths! The brace affects diapering. Because it rides to her tush in the back we have to take it off for every change. Luckily she's been really good about it so far. If she ever gets difficult about wearing her brace then this won't be fun. We are going to attempt potty training, but she has been meeting this with some resistance so we're going to ride things out the way they are at the moment. 

The brace is very slim, so when she wears certain clothes you can't even tell she has it on. Technically she's supposed to wear her pants over the brace meaning they all need to be elastic waist. I've been finding, however, that even though I put them over the bottom velcro, they still fall under the brace when she runs around and plays. Trial and error I guess. Dresses are pretty awesome right now.

On Wednesday Olivia took her first swim class in over a year and a half. She clung to me for dear life, but sang all the songs and overall had a nice time. She also had her first dance class, and was amazing. Overall, life in the brace so far has been going very well, and it's shaping up to be a great summer!