Our visit to Scottish Rite was not what I had hoped for. In fact, I was shocked when the doctor told me that her torticollis was not a muscle issue. What?!! So you mean to tell me that all of this stretching, therapy, and torture of my child has been for nothing? The doctor believes that Maggie's torticollis is due to either a neurological issue or a skeletal issue. Either way, it is much more serious than we thought. He didn't elaborate on either but ordered a CT scan and MRI, which we will have in the coming weeks.
Of course I am beyond upset. I called her pediatrician/neonatologist first thing today and discussed it with him. He reminded me that Maggie did not have any brain bleeds as a baby, and cognitively she is right on track. Yes, her gross motor skills are delayed in that she can't sit up or roll over. And that's why the Scottish Rite doctor was worried about something neurological. But it just seems like someone would have noticed something before now. And maybe I am in denial - and someone tell me if I am - but I just feel like it is really hard to sit up when your head is off balance. And it is hard to do tummy time when your stomach has a valve coming out of it that hurts constantly for some reason. And doesn't it seem logical that not gaining weight for six months would have something to do with weak muscle tone?
I am just beyond frustrated. And my heart just aches. I love my baby so much and I don't want there to be anything wrong with her. I don't want her to suffer. And knowing that I've probably been hurting her for all of this time kills me. Here it is her first birthday tomorrow and I want to celebrate, but I have this worried feeling deep in my chest. And I don't see any relief in sight.
So I am asking for praise and prayers tonight. Again, I don't know why I feel bad asking for prayers. Like I am hogging people's prayer time. But Maggie is so dear to so many people and I know that many of you love praying for her so this is what I humbly ask:
Praise for her life, that she is here on this Earth with us, and praise for how far she has come in the past year.
Prayer that she does not have anything seriously wrong with her brain, spinal cord, or bones. That this doctor is wrong and that whatever she has can be fixed easily and painlessly. Pray that Maggie will have a normal childhood and healthy life. And that God will be glorified through it all.
Thank you.
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Lee, I've been reading your blog since you went on bedrest. I'll definitely be praying, as we have been, that Maggie will be healed, and that doctors will be given wisdom on how to best treat her. You are a great mom, even though I know you might not always feel that way.
ReplyDeleteIn my Bible study this week, we talked about being bold in our prayers because we know how Big and Awesome God is. I pray BOLDLY that God would heal Maggie's torticollis and help her gain weight through the g-tube. I pray for her to grow up strong and healthy. I also pray for you and Justin and Mary Lawrence, who provide constant support -- I pray for moments of pure joy and relaxation as the holiday season approaches. God knows your heart, sweet Lee, and he is so proud of the mom and woman you are!
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