Eve's spinal Clinic on Thursday was unfortunately one of those days.Her curve has increased again, and it appears that it will not be held off by bracing or casting.
The surgeon has informed us he will need to start operating sometime soon, which means, within the next year.
After reading more online it appears that not only does scoliosis in Beals Syndrome tend to 'rapidly progress', it also at times cannot be slowed without surgery.
How do you respond to such news?
Do you cry? Do you get angry? Ask God, why her? Look for second opinions?
I just felt sad and disappointed.
After a few tears (ok, lots), I have moved on to trying to find a positive through this.
1. Less pain and discomfort? I have joined the Scoliosis Australia Forum, and many people who have been through surgery report less pain afterwards.
2. Good timing. A team of specialists from around the world are visiting next week. Our surgeon is going to present Evelyne's case to them and get their expert advice.
3. She will be taller!
4. God has a plan for her. I need to trust that He is in control.
Romans 8:28 (NIV)
And we know that in all things God works for the good of those who love him, who have been called according to his purpose.
Thanks Lou, I love the post, it's a very honest reflection on how we deal with disappointments. I also love the photo of Evelyne, you are a great photographer (must have had a great mentor!!).
ReplyDeleteHang in there Louise! I always agree that having a second opinion when making tough life changing decisions is a good idea....if for nothing else, to give you confidence and peace of mind. It is so great that the team of specialists are coming in at just the right time to review Evelyne's case!
ReplyDeletehay Louise,
ReplyDeleteMy name is anouska and i'm from holland i have a child he's a boy he's 8 years old and have also beals syndrome and i want to say that i think it's great to see what youre doing and help other people and let them know how evelyne is doing, my son has also a scoliose, i know fore sure that god has a plan for them, i whise you al the best for evelyne and youre family (sorry for my englisch) and i follow youre blog.
Ha ha. Thanks Dad! Mentor or natural ability.. you win both ways!!
ReplyDeleteThanks Jamie. And great to meet you Anouska! Glad you found the blog.
Did you get her to pose for that photo?? Praying for you guys! xx
ReplyDeleteOh Lou. I'm sad I don't live closer and can't support you with hugs through tears, prayer in person, company and childminding through this continuing difficult journey for you all! What's your mobile and landline number. I've changed phones and no longer have your numbers. Can I call you tomorrow night if you're up for catching up real time? Love Julie
ReplyDelete