It's been a while since I've blogged, but I feel like I've ran out of emotions. When I blog, I cry...hard! Sometimes I like to pretend that I'm living someone else's life. I like to sit back and watch. When I'm writing, I have to feel and admit that this is my life. Nothing much has changed since my last post. Aralyn still has Trisomy 8 along with many other issues, but she continues to fight hard. Last week she had an appointment with her neurologist. This was the first time we have seen her since the MRI. Dr. Said cried and explained that Aralyn is very sick. I knew that already. I asked for A's prognosis and she said she can't give a prognosis for a child that shouldn't be alive. She also gave me a print-out of A's results. They're pretty ugly. It consists of bad news and really big words. One of the many diagnosis she was given last Friday was Rhomboencephalosysnapsis with Severe Callosal Hypoplasia.
Variable clinical progression ranging from early death to varying degrees of cerebellar dysfunction and neurodevelopmental delay. Some patients may reach adulthood 3. (http://radiopaedia.org/articles/rhombencephalosynapsis)
This was the first thing I read after learning of this diagnosis. Not very comforting. It's just one more thing Aralyn has to fight. Rhomboencephalosynapsis is thought to occur between the 28th and 44th day of gestation. She sure was a busy little girl.
There have only been about 5o reported cases of Rhombencephalosynapsis since the first known one in 1914. (http://rhombencephalosynapsis.org/condition.html)\
I can't figure out my child's obsession with rare disorders. She likes a challenge I guess. We were also told that she has non obstructive hydrocephalus. That simply means that she has excess fluid on her brain, but it's there to fill the space for the parts of the brain that never developed. The list is half a page long and devastating. I know, I know. I know she has brain abnormalities, but it seems more real when there is a name to it. Dr. Said continued to go over the list and mentioned that Aralyn's brain does not even have the ability to make her breathe. Of course I had to ask, "Why is she breathing then???". She simply said, "God.". Aralyn Faith truly does have God on her side. She beats the odds everyday!!! They say she can't breathe so she takes a deep breath. They say she can't see so she looks straight at them. They say she can't feel emotions so she cries and smiles. They say she can't live, but she's 382 days, 13 hours, 45 minutes old. They say she has no memory, but she recognizes me. I'm so glad to have my faith and know that God is in control. I could not imagine terminating my pregnancy when that was the only option we were given. I thank God every day for A's medical team who stood by us, praying for God's will to be done. I've been trying to find a way to make a difference and raise awareness. Maybe we could start a foundation to support parents who are given results like we were and are told to terminate. I've had several women e-mail me saying they regret their choice, but didn't know they had another option. I remember how scared I was sitting there hearing the words. What if these babies were given a chance? What is they survived for a year like Aralyn has? What if Trisomy 8 was no longer considered "incompatiable with life"? Wouldn't that be a beautiful thing! Aralyn Faith is going to make a difference. It may not be in her lifetime, but it will be because of her beautiful life!
Lord, thank You for loving her and for loving me!
