Hey, everyone. Well, our first full week back from the beach has certainly not been what I had expected. I guess we were living on borrowed time and our string of good weeks has now come to an end.
The appointment with our physical medicine doctor (called a physiatrist) was Tuesday. Sophie Kate was officially diagnosed with cerebral palsy that day, the type of cerebral palsy that she has is called spastic quadriplegia (not sure if that is spelled right). The quadriplegia means that all 4 of her limbs are involved and the spastic refers to the spasticity of her muscles i.e. the high tone or increased tightness that she has in her muscles versus her muscles being limp and floppy which hers are not.
You know this had always been on our minds, this is certainly not a unexpected diagnosis, but to hear those words pertaining to your baby is indescribible. I cannot even put words to it. We have been given some short terms goals for Sophie Kate and have been told that these are essential for her to master in order for there to be any chance that she will ever learn to crawl or walk. This doctor is going to be a great addition to Sophie’s medical team. Although I had to have a very difficult conversation with him, he was quite pleased with all of the therapies that she is involved in right now and he said he wouldn’t change any of that at this time. He is going to be very involved with the therapy side of things and will be keeping on top of her muscle tone issues and medications to help that.
This is the first doctor that has ever asked me what kind of person Sophie Kate is. It really brings tears to my eyes first of all when I think about how kind he was with his questions and second of all when I think that none of her other doctors have bothered to really know who she is. He asked what her days were like, how she reacted to strangers, how she reacted when other people held her, how she responded to her therapists, what her nights were like, what things calm or sooth her and I could go on and on. I felt like he really wanted to know her and I haven’t felt that from any other doctor. God bless him.
So now we have a renewed focus and somewhat of a timetable. He of course did not give us any absolutes of what he thought she would be able to do or not, which I wouldn’t have believed anyway, but he did give us a timetable of when we need to be seeing some things accomplished. So we will be working furiously on these things, I would say day and night but since SK sleeps at night now I will just say day after day after day. These things are just as important to the future of our family as they are to Sophie Kate herself.
This week has been so impossibly difficult, I have cried to the point of being sick. I run out of time, I run out of energy when will I run out of tears? When will life make sense again? This is like a nightmare, but I will never wake up from it, it is always always with me. I can never escape it. My daughter has cerebral palsy, they say that cerebral palsy is not fatal. Then why is it killing me from the inside out?
I hate that you are this kind of pain. I wish that I had a single answer for any of your questions, but of course I don’t. I do know that Sophie is lucky to have a mom that is so willing to do for her. There are no limits to your love. I am so proud of you for being so proactive and not simply giving up. I am still clinging to the verse about plowing in tears, but reaping with rejoicing. I will claim this promise for you! It will happen, in the mean time, try to find joy in something everyday. Focus on these things, when things are so dark. We love you and your famlly so much.
Looking forward to Monday. I hope that it will lift your spirits if only for an hour or two.
Amye,
I am so sorry that you are in so much pain. I will be praying extra for you and SK…well all the family. I wish I could help, but just wanted you to know that we at this house are all thinking about you guys and praying extra.
Love,
Tina,Thomas and the kids
Just want to say I love you guys and praying for you always.
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