Sunday, June 13, 2010

Lately

Lately, our little girl turned the big ONE. It was so hard to believe--in some ways, it seems like she was just born, but in other ways, it seems like this has been the longest year of our lives. I told Camille on her birthday morning that she has seen more doctors and had more tests and treatments in her one year than most people do their whole lives. She smiled and grunted at me in response. We celebrated the actual big day, which was a Wednesday, by taking Camille down to the Scott and White NICU. When Camille was in the NICU, I would see families bringing their children back to visit, and I would think to myself that I would never do such a thing. If I ever got Camille out--and most days it felt like that would never happen--then we were hitting the road and never looking back. But as Camille's birthday approached, I began to want to go back to the NICU, not necessarily to see anyone in particular or do anything in particular, but just to give myself a reminder of how far Camille has come. So we went down, took some pictures (her neonatologist was unfortunately out on vacation and so we didn't get to see her), and had a nice lunch at a little restaurant in Temple. Later, we all went to the Waco Water Park, and Camille loved getting to splash (or rather, be splashed by her brother) in the water. Then, we finished up the birthday week with a very warm cookout in the park. We could have called it the Camille Lynne Sweat Fest instead. Who knew it would already be close to 100 degrees in Waco at the beginning of June? We were so grateful for all of the friends and family who came out and sweat, I mean celebrated, with us.

Lately, things have been a little more troublesome health-wise for Camille. Her jerky movements have increased significantly in the past month, which led us to have to take her to see her neurologist again sooner than we had planned. After seeing her and her movements now, he was finally able to put a name to them. She has what's called Myoclonus, which basically means uncontrollable jerky muscle movements. When he said this name, I latched on to it like a rabid dog. I started fumbling around for a pen, and asked him repeatedly to spell it so that I could make sure I had it written down correctly. He looked at me strangely, and said, "Well, Myoclonus only describes her abnormal movements, not her entire condition." (Our neurologist has been wonderful, by the way, about encouraging us to find an overall diagnosis for Camille, and has said that he thought we are right to seek out multiple opinions from geneticists until we find our answer). I told him that I was just so excited to have a name for something. I can finally tell people something other than, "And she has these weird movement things that no one can name." Plus, I can go enter something else into my database--this little tidbit, however, I kept to myself and did not share with the neurologist. The thing about Myoclonus, though, is that it is usually related to epilepsy. The neurologist said that it is related to seizures in almost every child he has ever seen with it, but in Camille's case, he doesn't think it is. He's not sure what is causing it to happen, and what is causing it to get worse, other than it is something occurring in her brain. So, he is going to treat it with a new medication, which he said would hopefully lessen it, not take it away completely. And then he is also going to do a new MRI and a 24 hour EEG, to see if they can see more of what is going on in Camille's brain now that she is bigger and older. The other new medical issue is that Camille has had a blue face and lips when I have gone to wake her up from a nap twice now in the past 2 weeks. Therefore, she is now also on an apnea monitor at night. So far, so good, and the monitor has not alarmed indicating any apnea at all. Not so good, however, that we don't know what those spells are from, if they are not due to apnea, and that we have yet another set of tubes and wires to hook up to our baby every night.

So lately, I have been doing too much pondering. Too much worrying. Too much looking ahead. Too much feeling sorry for myself. What are we going to do if all of this continues? Our neurologist, who is the most wonderful person in the world, said very kindly when talking about Camille's Myoclonus that it was something that would never be cured, but that we could hopefully lessen it with treatment. He said that the goal was to just make this a livable situation for us. Right now, it's truly not. Her irritability has increased with her myoclonic movements. And her movements have made it hard to do almost anything. If you can imagine having these constant, uncontrollable jerks happening all over your body, then you can imagine what Camille is feeling all day everyday right now. It's miserable. It affects sleeping, eating, any type of motor activity. We can sometimes barely hold Camille when it gets really bad.

And the fact that this has all gotten worse right around Camille's first birthday has been really hard. I try not to, but I keep thinking about all that Henry was doing around his first birthday, and my heart breaks. He was doing things at one year that I'm not sure she'll ever do in her life time. And the way she has been so miserable and unhappy these past few weeks makes me feel even worse. We had several really good months where she was so happy and hardly cried at all. These past few weeks have been reminiscent of her early days where she cried all day long. I just keep thinking that this is not the life I wanted for my child.

Lately, I am reminded of two things that comfort me. One is the best advice that I think anyone could give the parent of a sick or special needs child. These words came from my Aunt Jena the day after Camille was born. "Take it one day at a time." I simply can't look ahead, can't imagine what our lives will be like if what is happening now continues. It's too overwhelming. All I can do is get through this one day. That's doable. The second is 5 words I received in a text message from a friend shortly after Camille was born. "God will not leave you." That's all it said, those 5 words. And perhaps those are the greatest words of comfort there are.

2 comments:

  1. Thanks for the update! Happy birthday to sweet Camille!!! I hope this next year brings many blessings and answers!

    ReplyDelete
  2. Happy belated birthday to Camille! And Maggie, thank you for sharing your journey with us - I mean ALL of your journey, the downs as much as the ups. You and your family continue to be in my thoughts and prayers. I really hope that you continue to make progress on your search for answers. - Ashley Boester

    ReplyDelete