I keep praying with each doctor visit, each test, each evening (when spasms usually happen), each step towards figuring out what is going on with our Baby Bear and figuring out appropriate treatment. I hold on to hope that it is something with limited effects. I hold on to hope that it is something that will soon be resolved or that she will outgrow. I hold on to the hope that no matter what types of challenges she faces and what the diagnosis turns out to be, she will continue to shine so brightly and bring Good into this world.
When Ryan and I were facing this alone, and even when I was just facing this with a few people, I spent so much time in tears just feeling overwhelmed with what was ahead. Opening up about the situation, welcoming the support, and receiving the various forms of love expressed by our friends and family has had me in tears this week for a very different reason. I love the well-wishes, doctor recommendations, offers to listen, the words of faith, the compliments on our parenting, the hugs, and every other bit of positive information, energy, and prayer that has been directed at our Alessandra this week. It is an amazing blessing knowing that Alessandra is receiving love from so many people, all over the world, in so many different forms. Thank you for offering to listen. Thank you for keeping her in your thoughts. Thank you for praying for her. Thank you for letting us know you are there. Thank you for praying for her doctors. Thank you for every bit of kindness.
Right now, we still do not have a diagnosis.
Alessandra has had blood tests, a short EEG (about 45 minutes) and a brain MRI. Every test result has come back normal. Although it is comforting to receive good news, it is still difficult to accept that we don't know what is causing this. Seeing her go through these tests, seeing her be sedated, seeing her go through things that she doesn't understand and being unable to comfort her through parts of it has been exhausting and challenging. She is my brave little lady. She bounces back from each procedure. She continues to be the wonderful girl she was a month ago before all this began. She continues to learn new things every day.
We are not in the clear yet. Waking at 3am to a child who is experiencing something scary that she doesn't understand is heart-wrenching. Ryan and I really lucked out in that, for months, Alessandra has woken up at about 7:15am - after 10 or 11 hours of sleep - with a big smile on her face. How did we go from that to waking at 3am to a child stiffening, shuddering, and then crying? I know that she is strong and that I can be strong for her. That doesn't mean that this is easy.
Alessandra ready for her EEG. The procedure was completely painless and no sedation was necessary. We took her in sleep deprived and gave her the bottle so that she would sleep through most of the test. I think the confusion when the electrodes were being applied was the most upsetting part - not any pain or discomfort:
Alessandra after her MRI. She was still pretty limp here from the sedation. As soon as she fully woke up she was fighting me and wouldn't accept bottle, paci, or any other of the usual forms of comfort. It took about a good hour to get her calm after sedation.
We will continue to try to figure out what is wrong. For now, we're tracking these episodes to try to see if there is a pattern. We will need to do a 24 hour EEG and it will be helpful if we have some type of pattern to follow so that we can plan to complete that EEG in a window that captures one of her episodes. Without a diagnosis, its hard to figure out what medicine or treatment to give her. For now she takes high doses of B6, she is off solids and back to breast-milk with some formula, and we immediately put her to bed if she looks tired. Essentially we are trying to limit/prevent the episodes and their damaging effects until we have more solid answer with a more solid treatment plan.
This is going to take additional testing. It is going to take time. I will continue to hope and believe for the best and I am so grateful for the various expressions of love that are lifting Alessandra up getting us through this.
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