As of late, I've had the pleasure of telling people that Ella has been doing pretty well. I relay to them that the regression path she was on so vigorously seems to have slowed down. Ever since her new diet was implemented we have indeed seen a plateauing effect. Ella has been able to use her arms a bit more, keep her head stable, reduce her excessive sweating, and generally seems to have good energy levels. She has even stood up with the assistance of her AFO's, leg braces, and the loving hands of mommy and daddy beneath her bum.
SMA invades the entire body in one way or another as we are unceasingly finding out. Over the past week Ella has choked on small pieces of food that she has had no problem with in the past. In fact, her eating of solid foods, albeit in very minuscule amounts, has never caused her any problems...
...until now. Now she has choked and from that vomited two times in the past week. There is a distinct possibility that another swallow study might be ordered to determine if the swallowing muscles are being affected by SMA.
Ella had her routine dietician appointment today. She has lost 5 ounces over the past month. Many might read this and think, "5 ounces? That's it? Sounds ok to me." Not so. While the loss of 5 ounces may seem insignificant to you or me, it represents something completely different for a child with SMA. It signals that a loss is occurring...ours it to find out if we need to further supplement her diet or do we need to look at her muscle mass...is it dwindling...is it atrophying? Is it a combination of diet and atrophy?
The past week or so she has been saying "ow" a lot. Yes, she just came off an invasive surgery; and yes, we would expect her to express pain from that. This is different though. She points to places on her body that have nothing whatsoever to do with the placement of her g-tube. Is this a learned behavior because she has been given so much attention for the ills that SMA brings with it? Or is it a true representation of what commonly occurs with kids who have SMA as their bodies are so much more fragile than someone who does not have the disease? Or is it a combination of the two?
As Lindsay and I are faced with a child suffering from an incurable and untreatable disease that is considered terminal, while it robs our daughter of her ability to move and function in an independent manner, we are still raising a perfectly normal child in terms of her intellect and emotions. There is no "preparatory class" for either--and while we can fall back on our life experiences with Ava and Henry; while we can seek the inner advise we subconsciously are privy to from our parents; while we can connect with other parents...we are left with so many unanswered questions to what we are finding with our Ella.
The bottom line is that it's frustrating.
It's frustrating for Ella, it's frustrating for us, it's frustrating for our family, and it's frustrating for all those whose life Ella has touched.
