Yesterday it was a bitter-sweet day for us. The sweet part was that Luiza was turning 15. I can't believe the time has passed so fast! But she has been so busy with school, theater/rehearsals and finals week, that we couldn't really celebrate the way we should. But the main reason we couldn't do something more special that day was because yesterday was also Gabbie's appointment at Shriner's for the neuromuscular study (EMG) under sedation. We were apprehensive not so much because of the EMG, but mostly because of the general anesthesia. This was the second time in her short life that she had to go under general anesthesia. It worried us. But little did we know that we should have worried more about the outcome than the anesthesia.
After 3 hours, in which we were anxiously waiting for our names to be called back in there to stay with her in the recovery room, the doctor came out of the surgery center to talk to us. And I was shocked, I didn't expect the news that he was bringing at all. He said that they did a very thorough exam (they even examined the arms to make sure they were responding normally, which we knew they were). He said that they had to use a large amount of stimulation (electrical) to even have her leg muscles only twitch. They did not see much going on in terms of the axons of her motor neurons. They still believe that something must have happened in utero later in the pregnancy, which interrupted the blood flow to her legs somehow. What all that meant was that, according to him, she will never be able to walk by herself, she may be able to stand and exchange some steps with the help of braces, but she will need a lightweight wheelchair at some point. He said that now she is ok with moving by crawling, but as she gets older, she will realize that she shouldn't be doing that, and she will probably stop and we will have to provide a wheelchair for her to move around. Being in the waiting room for 3 hours, we saw many other children with their parents come and go from the outpatient surgery center. Some for simple procedures, like application of Botox (amazing what Botox can do for some of these disabilities!), others for more complicated procedures. But at Shriner's you really see a little bit of everything. And it helps to put everything in perspective and it makes you very grateful for what you have. But even that didn't prepare us for what we had to hear next, it still didn't make the news any easier to take or "swallow". We went there with so much hope, trying to find out more, trying to see what we could do to help her. And just like that, in a 10 minute conversation with her doctor, it was all shattered. Tears started falling down my face, and I didn't want to cry, after all, I was still so grateful, and I didn't want the parents around me to see me crying, the same parents that are having to deal with so much already, with problems so much bigger than mine! But I just couldn't help myself. Tears rolled down my face and for the next 30 or 40 minutes my husband and I just sat there in the waiting room, incapable of saying anything, while we waited for them to call us to the recovery room to see Gabbie. Then my husband looked at me and said: "I don't believe him, he must be wrong." And I want to not believe him too. I want to keep my hopes up. Gabbie has already done so much, she has come a long way! She is already doing so much that, according to the doctor, she "won't" be able to. He doesn't know all the things she is capable of. He has never seen her stand, because taking your kid to the doctor is like taking the car to the mechanic, they never show what you want them to. He has never seen her push the toys, or try to step towards what she wants. In his mind, she can't do it. But we know she can. And we think that she will be able to do much more. I cannot begin to grasp the concept of my child in a wheelchair, maybe she will always need some support, like a walker, but not a wheelchair. But for now all we can do is wait, and love her, and try to teach her how to overcome her disability, and wait some more, and some more... The doctor mentioned that her legs are so affected that she will not be able to do one of the recommended therapies, which involves electrical muscle stimulation through a pad on the skin, because the amount of electric current that they would need to put though to cause any effect would be extremely painful to her. So all we can do is wait. For those of you who know me, you know that I am a hyperactive person, always "on the go", the concept of waiting is new and painful to me. I want to resolve things immediately, and in this case I can't. It is frustrating.
When they finally called us to go see her, I went in and got my still heavily sedated baby on my arms. Tears rolled down my face again and still do as I write this post (and I am at lunch time at work, you can imagine the scene). We can't help but think about what we need to do, what we need to change, how we need to help her. Will we have to move from our house in a couple of years into a one-story smaller house? Will we need to change her daycare to something more directed to kids with physical disabilities? Will she be able to ... the list is endless and it is like a movie playing in your head all the time. So we are trying to live one day at a time, we are trying to keep our hopes up and pray that there is a major force watching over us and believe that everything happens for a reason. But it still doesn't make it any easier...
