Rag Doll

So a few hours ago we met with a rare disease specialist and a neurologist, both of whom had thoroughly examined Maisie and conferred over their findings. They both agree that what Maisie is suffering from is acquired hypotonia, which means very low muscle tone not from an inherited genetic disease but from an outside influence. Normally the term "acquired" means it happened after birth, but this is just another example of how rare and unique Maisie is. She probably did not inherit these conditions through a genetic mutation but instead was affected in utero. By an outside source.

Maisie is still young. Her brain is still growing and developing, and (though, as you'll see if you read posts from 2009, we didn't realize it at the time) has been damaged by the attack on me during her gestation. There is every chance that she could develop further complications as she grows and changes, and it's possible that some of these could be headed off, prevented or diminished if we know more about them. For this reason the neurologist suggested, and I agreed, that we go ahead with several different diagnostic tests, such as fluoroscopy, X-rays, neuro exam, and possibly a CT and brain biopsy. Unfortunately this means Maisie will be spending quite a bit of time in the hospital over the next few days, but it might also save her life.

Now, back to the original reason we came to the hospital. It would appear that her the muscles in her limbs are not growing stronger. In fact, they may be weakening. We are hopeful that a change in the physical therapy regimen and her diet will help her grow stronger, but if the root source is a damaged nerve in her brain, it's hard to know what the future holds. We have an appointment with an orthopedist in a few days to talk about bracing and other support devices. For now, she's the same little girl she's always been.

There have been times in the past where developments in Maisie's health have pushed me over the edge, completely overwhelming and frightening me. I have had episodes of extreme guilt, depression, panic, and terror, but this is not one of them. I have been remarkably calm and collected through this whole process. I am well aware of the risks and challenges ahead, but they do not frighten me as I thought they would. Maisie has proved herself to be strong and determined to survive. I am determined not to dwell on the seriousness of her condition. I will absolutely fight and continue to fight for the best care for Maisie, but at the same time I want to enjoy her for who she is right now, today, even if she is a limp, sick rag doll baby. She is mine and I am hers, and nothing, not even death, can take that away from me.