The X-ray says it all. Vera's does have Scoliosis and it's worse than I thought it would be. Her curvature is 18 degrees. The pediatric surgeon said they'll likely recommend a brace when it's between 20-25 degrees. As for now, all we can do is "monitor".Now, this word "monitor". Do you know how a parent reads it? It like saying 'sit back and wait and watch it get worse'. Is there anything we can do to stop it from getting worse? "No, there isn't. All you can do now is monitor."
Seeing Vera's insides up close for the first time brought me face to face with the workings of Trisomy 18 once again. This genetic condition has given my baby an imperfect spine from birth. And there was nothing I could do about it. Somehow, this hit me pretty hard. Maybe because I have spinal misalignment issues myself, and know the effect it can have on my breathing and the aches and pains I sometimes feel. Oh, she's just a baby!
It will take some time (it'll happen don't worry) for me to accept the stark reality of her spinal condition.
11 comments:
So very sorry; and I'm so sorry it's caught you on the raw. But Vera is still Vera, no matter what her spine looks like.
Thanks Mrs Redboots,
I'll remember that!
So many obstacles you already have overcome, i'm sure u can overcome this too.
Be strong.
Adeline
Hang in there May. My friend's daughter went for Craniosacral Therapy to treat her minor spine curvature and it worked, although she's not a special needs child. I'm not sure if Vera is able to go for that. If you are interested to find out more, let me know. I can check with my friend.
May, Thank you for sharing her xray. I have never asked to look at Annabels or asked the degree. I am sure if you suffer from some pain with yours you are thinking of how much you little one will suffer. Praying for answers, from maybe other parents out there! It is way too hard to swallow, NOTHING YOU CAN DO!
Dear May,
I am sorry for your pain, and for Vera's condition. But know you are such a blessing to her. Who can better understand her experience than you, having experienced it yourself. She is so lucky to have you for her mother.
Stay strong, and when you hear a phrase from a doctor you do not like, talk to more doctors. Remember, they work for you. It is not a one way street. God has given you the intuition to know what direction you need to go in - find the doctor that will take you there. You are Vera's advocate, and the doctor is your partner in health, not the last word - never the last word.
Please forgive my lack of knowledge but why do the docs think you have to wait for a few more degrees of curvature before treating? Would it not be better to begin to treat it now than wait for it to get worse? Would there not be less to correct?
If Vera were not T-18 would the treatment protocal be different?
Thanks, May! You are always so good at enlightening us.
Keeping you two girls in my thoughts and prayers!
Kathy,
I believe treatment is wearing a brace, and that would be uncomfortable for her, and probably limit her movements. And we do want her to move more to build up her muscles now so her spine can strengthen. So it's catch 22 i guess.
Dear May
I am a new reader of your blog. Following your little girl's story brought tears to my eyes many time. I m really encouraged by your strength and conviction. Please continue to press on and stay strong for your Vera.
I too have a special needs girl. She is hearing impaired but has since been fitted with a cochlear implant. She is 6 now and is doing well. But I can identify with your emotions, your fears and your whys each time you are hit with more difficult news. Take heart, sister-in-Christ, I believe God will not give you more than what you can take.
Hi Anonymous,
Can you email me? I know of a little girl who is HI (no implant) yet manage to be among the top in class in a mainstream school! Through sheer perseverance, conviction and hard work. She is my cousin. Hope her blog can inspire you and your girl!
Thanks for the info May! I see the dilema.
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