Today was a very difficult day for me. Ben had his ortho follow-up with the new ortho doc who specializes in hips. Overall, I liked the doctor and felt he was very knowledgeable. But having the doctor understand Ben, CHARGE Syndrome and his capabilities in a 30 minute office visit is next to impossible. Ben's hips, arms and hamstrings are very tight and he does had a lot of muscle tone issues due to his stroke, but what the doctor saw wasn't Ben at his best. Ever since Ben's femur break, he panics when someone starts tugging on his limbs
(especially someone new AND at a doctor's office) and uses all his energy to curl into a ball.
Based on what the doctor saw, he informed us that the chances of Ben EVER walking are "unlikely". He recommended Botox injections combined with casting/splinting his limbs to help stretch him so he can sit in a wheelchair. He felt his level of tightness would make even wheelchair sitting an obstacle for Ben. Needless to say, I was devastated. That is news no parent wants to hear. And then relaying the same news to your spouse is heartbreaking all over again because you are now the bearer of bad news.
I've decided against Botox and casting for now because Ben CAN sit comfortably in a chair. If the time comes when he can't, I will definitely explore it then.
Being the parent of a child with such a complex medical syndrome is emotionally the hardest thing I've ever had to do. You are told upsetting predictions and worse case scenarios from numerous doctors on an ongoing basis. It sometimes seems like too much to handle but yet you have to remind yourself that things can be worse, are worse for others and be thankful for the blessings you have.
6 comments:
Amy, I'm glad you were feeling a little better about this today and aren't letting this doctor discourage you too much. Doctors need to realize that, as parents of kids with complex needs, we not only rely on their expertise, but also on a lot of hope and faith. Our kids accomplish things that most doctors would never venture to predict for them! Hang in there, and never give up hope.
Amy, I'm so sorry to hear about this difficult day. I think Leslie is so right, and she said it so beautifully - our kids' complex needs are not black and white. Doctors give us information in a black and white way, but we know our kids better than anyone...and I think faith, hope and love are really important elements of any conversation with a doctor. Hugs to you and your Sweet Ben...
Oh my friend...what an incredibly difficult appointment. I wish I could give you a big hug and make it all better. But you know what...we will get through this. We have before and we will again. These "setbacks" are indeed discouraging but look at how much Ben has done, is doing and will do. We are with you, ok?
Love, Amy and Max
Amy, like you said....they don't know Ben at his best and you've witnessed what miracles he has already shown. Keep positive thoughts in your head and he will rise to the occasion when it is his time. Allison, Hannah and I all said a prayer for you all today at church. See you tomorrow. Enjoy the rest of your day.
Kim
It is always hard to hear a doctor say "never" but I NEVER take that answer. I have learned there is always a chance. Our kids will tell us when and if they will do something. Ben just needs time just like Eva needs time, it takes a lot to get that into our heads sometimes but we get it sooner or later.
Ben is a wonderful little boy full of life and love. He will do wonderful things one day.
Hugs,
Crystal and Eva
Amy,
Sorry to hear about your day. Ben has made so many accomplishments scince his days here in the RCNIC and will make many more as he continues to grow. You have a wonderful son and I have every bit of faith that be will do things that the docs will never expect.
Kim S. RN
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