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!




1 comment:

  1. Hooray! You did a much better job explaining the braces than I would have. We are having a very hard time getting E into her brace. I think the long break while it was awesome did not help. She wants to be free. We miss you by just one day again on our follow up about the brace :)

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