Sunday, 11 May 2014

Another winter, another cast

Last Friday Evelyne had another spinal cast applied in Sydney.
It is always tough leading up to casting, emotionally preparing for pain, discomfort and sleepless nights. I am usually a mess the week before. And this time was no different. But as usual Evie was relatively calm and although she admitted she was not looking forward to the cast "because it hurts more, and you cant take it off!", she was her normal happy, positive self before (as you can see from the photo).

She recovered after the general anesthetic much better than her last cast, and was able to stand and walk quicker also. However she still needed pain killers and was in alot of pain if they wore off. She also slept very well the first few days and managed the 3 hr car trip home to Bathurst the next day with only one stop. 

We again decorated her cast in her choice of print, and her doll Milly (now renamed Annabelle) again shared the same design.

One week on she is still struggling to sit for periods of time and prefers to stand, kneel, use a bean bag or lie on her tummy. And at times she still needs pain medication. Evelyne attempted school for a few hours each day Tues-Fri, with the help of her aide, and although the first few days went well she only lasted half an hour Friday before her back was hurting too much and she needed to come home.

I'm not sure what the next few weeks will hold. It's hard not thinking that she may already have a pressure sore, but maybe she is still just adjusting to the change in her spine position. I recall it taking about a week to recover last year also. We are also awaiting the x-ray results to see what angle the cast has achieved. In the meantime we continue to pray for her to be more comfortable and that this cast will last longer than the others.


  1. She's a little trooper (as my Dad would say). I just love her determination, patience and spirit. We're praying too that the cast can stay on as long as possible. Love Dad

  2. We pray for lovely Evie , god bless her.

  3. Hello, is everything going well? I have been checking and no news since a while. I hope everything is ok. All the best to Evelyn and the family!

  4. Hello! I'm so glad I've found this blog. My name is Macarena and I'm from Chile (sorry if my English isn't perfect hahah), and I was diagnosed with Beal's Syndrome when I was about a month old I believe (I'm about to turn 21 now). It's so great to see parents that care so much about their daughter! I've personally been through wearing casts, physical therapy, surgery, and more, but as of right now I'm living my life pretty much as any other girl my age when it comes to this whole thing :). I just want you guys to know that there is hope! You can contact me if you ever want to talk/need anything.

  5. Hello, there has been a while since we heard nothing about Evelyne. Is everything ok and going as it should? All the best.

  6. Hello, my name is Renee and I'm from New Zealand. I was diagnosed with Beals at age 3 and I am now 31years of age. Back when I was diagnosed there wasn't a lot of information in regards to this syndrome and it's only been in the past 2 years that I have tried to research what exactly it is. I had an operation when I was 5 and they put a steal rod in my back as it started to curve. I had to wear a back brace for 1 year. Although I was never wheel chair bound I feel for your daughter. Beals is very noticeable in me as I am lop sided. Although I lean to one side it hasn't prevented me from doing anything. I was extremely lucky I was able to get that operation so early on. Besides that first operation I have had no serious problems and my back can get sore occasionally if I stand too long but other than that I am fine. It was a long road when I was young but it does get better. I will pray for your daughter and if you need any questions answered feel free to contact me.