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!






Sunday, May 26, 2013

There's a Light at the End of the Tunnel!!!!


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/ 

Oh happy day!!!! I want to start this blog post with before and after pictures.

Here is Olivia's spine on 06/07/12



And here is Olivia's spine out of cast yesterday 05/24/13



How amazing is that?!?!? Ten months in a cast straightened out a 40 degree curve. She did not have to endure painful surgeries, rods, pins or anything invasive. I am forever grateful to Heather Hyatt Montoya for seeking out Dr. Min Mehta for treatment for her daughter. I am also forever grateful to be living so close to the number one Children's Hospital in the country. Boston Children's Hospital is just amazing. I've said it over a thousand times and I will say it a thousand more. Everyone there is wonderful, and they are dedicated to what they do.

I would also like to personally thank those who have taken care of Olivia over the past year, particularly Dr. Michael Glotzbecker and his nurse Deb Cranford. Both have been remarkable through this whole experience, truly working to give Olivia the best care possible. They were always available to answer any questions, and were on hand if we had any problems or concerns. Because of them Olivia will be able to live a normal life. Thank you both!




Now we're not out of the woods yet. Now we move onto the next phase in our journey; the brace. For the next year Olivia will wear what is called a Boston Brace. This brace was created by Boston Children's Hospital specialists headed by Bill Miller back in 1975. It will work as a retainer to help her spine maintain its straightness. She will have to wear it 20-22 hours a day. We will have to start over now and learn about life with a brace as it will be different than the cast. Basically it means more blog tutorials on ways to do things with a brace: clothing, diapering, skin care etc!

Here is a short video which talks about the Boston Brace:



Needless to say yesterday was a pretty awesome day. We got to the hospital at 12:30 to have lunch with Kathleen. 



We finished early so Olivia had time to go and look at the water wall.




Then we went up and had the cast removed. Her back looked amazing.







Then it was off to X-ray. Our x-ray tech Brian was great. He talked through everything he was doing and Olivia was a perfect patient standing very still for her "picture." The last time we did her x-ray she wasn't standing on her own yet. Brian let us look at the images as they were loading on the computer screen. I was actually a little nervous because as you can see her spine isn't perfectly straight, and I wasn't sure if it was going to be straight enough. I told Brian that I wanted a CD of the images for my records, and he said he would take us to put the order in. He gave Olivia three stickers for doing such a great job and then it was back to Orthopedics to await the results. 



Olivia enjoyed all of her opportunities to color while she waited.





We went straight to a room and Olivia placed bear in a chair, sat in her own seat, and we sang The Wheels on the Bus while we waited. Dr. Glotzbecker came in holding two pictures which he handed to me. They were the two images from above. He told us that her back looked great and he would have put her in a brace at this point regardless of whether or not it was the summer. He said that her spine looked great and that it was exactly what he wanted to see. It was then that I was able exhale. I was as thrilled as I was the day Olivia was born. 









Dr. Glotzbecker then filled us in on the next steps. Olivia will be in a brace for the next year. After she gets her brace we will go back for a follow up with Deb in two weeks to make sure everything is fitting Ok. She will also be x-rayed in the brace to make sure she's positioned well in it. Then she will see Dr. Glotzbecker July 26th to see how things are going. Following that she will be seen every three months with an x-ray every six. If all goes well and remains well she will be able to graduate from the brace in a year. 

I thanked Dr. Glotzbecker and Deb, we shook hands, and took pictures and then Olivia and I were off to NOPCO (National Orthotics and Prosthetics Company). There are multiple NOPCO locations, including one right in the hospital. We went down there, I filled out some paperwork and Olivia became friends with a nice boy named Charlie. The receptionist informed me that our insurance will cover $750.00 towards the brace, but that the braces cost between $1800 to $2200. This is just an FYI to all you scoli parents out there. The braces are expensive! 

Chelsea was the brace specialist who took care of us. She was wonderful with Olivia. Every Boston Brace is custom made for each patient, which requires a lot of measuring. Chelsea had Olivia wear a special undershirt, which is worn under the brace. This way it is figured in to the measurements, and because it's form fitting it helps her see how Olivia carries herself. 





After doing all the hand done measurements Chelsea then did a digital scan of Olivia's torso. It was amazing to watch. She placed this device on Olivia and then I had to keep Olivia completely still as she went around her with this infrared scanning device. Then an exact replica of Olivia's torso came up on the computer screen. When they said custom made they weren't kidding. 

We also got to select a pattern for the brace. There were over 50 different patterns to chose from. I let Olivia pick. She went with blue butterfly. I asked her to pick a pattern five different times over the course of our visit and without fail she picked the same one all five times so that's what we'll go with. 


Here are some pictures to give you an idea of what the brace will look like.

 Back View

Front View

 Back View

 Left Side View

Front View

I was given a brochure to read about the brace and how to care for it and was told that we would have a nurse visit on the day of the actual fitting to also be taught how to care for Olivia in the brace. I was told that the brace fits differently from the cast in that it will sit lower on the hips. Diapers will have to be worn under the brace meaning that the brace will have to either be loosened or removed for each change. When Olivia transitions to being potty trained they recommend that she should wear her underwear over the brace because it'll be easier for her to be independent with it. She will also not be able to wear anything fitted on the waist unless it's big enough because it must go over the brace. It'll all be a trial and error, just as it was when we got the cast for the first time. 

Olivia will get her brace on June 21st. We are going to enjoy every day of this nice long break. We have already had plenty of cuddles and tickles as well as a great bath. I'm so glad that we don't have to do sponge baths in the sink anymore! 

Thank you to all of you who have been keeping up with all that has been happening. Your support has meant so much to us. To the parents out there who have a child with scoliosis there is a light at the end of the tunnel. You're great parents doing a great thing for your child. Everyone please spread the word that this exists and that there is treatment. Infantile Scoliosis is on the rise and the more parents who know about it, the better. Thank you again! More to come!