I was always the curious kiddo, never was satisfied with the "because it is" or "because I said so" answers. I wanted to know and understand the why's and the how's. I'm realizing many others are the same. Our life has been so public this past year, I think it creates a greater curiosity for what really happens behind the scenes. I get asked LOTS of questions from others in my daily life, mostly via social media. It's surprising to see some of the questions strangers are asking seem to be the same questions my friends are asking me when we get together.
Recently I started a weekly Q&A on my Facebook page where readers can send their questions to firstname.lastname@example.org and each Wednesday I will choose one to answer. We dove right in last week with the question of "would you ever date again?" Much to my amusement that seems to be the #1 question others want to know.
This week the question was about Ellis, new scans and her future prognosis. I thought I'd share an example of my answer.
On the question of scans:
Ellis has not had any scans since her hospital stay a year ago. The reason for this is simply because they have not (thankfully) been imminently necessary and would not change our current approach to how she is being treated. People can sometimes forget that these tests involve radiation that can be very harmful to babies, especially when a child has already had numerous tests performed prior. That coupled with the fact that she would have to be put to sleep for the scans make it something that is not immediately necessary or of added value. Scans are meant to give you a clear picture as to the status of the brain and a picture of what is to come based on that status. While I do agree scans can be useful in some cases, in hers she is already doing 100% of the things that the "scans" said she would never do. Sometimes there's what the medical books say a scan will mean and then there's the reality of what you see in front of you. In our instance those have been two wildly different things and our medical community around us wholeheartedly agree.
On the question of Ellis' future:
As far as her future-simply put Ellis is an anomaly. I don't throw the word miracle around lightly but there's no doubt she is one. We are constantly told by many Nurses and Doctors that there's no medical explanation for how she's able to do so well. For that reason, they honestly have no idea how to define what her future holds. We have been told by other Doctors that they believe she will catch up in the years to come and make a marked recovery. The most important thing is she is making continual progress/steps forward every single day. We expect that to continue to be the case as her brain grows and heals. There are many fascinating studies about the brains ability to grow and adapt, especially when the injury in question occurs at an early age. While you never "want" to have a brain injury, the younger you are when the injury occurs the greater the odds for recovery.
I will repeat again-there's really no way to gage this baby girl. She stands in contrast to everything she "should" be. We believe there's no limits to who she WILL be. We are believing for great things.
Ellis is growing and changing daily. As you can see in the pictures below head control is no longer an issue for her. Now we are working on even better core control. She has been working on her standing, which she loves. For the first time they put her on a treadmill to learn to take her first steps, which she did with both legs. She's in the very beginning stages of mastering these skills but it is huge progress for her. I can see her confidence growing every day.
I find it interesting many of the questions I receive pertain to the future and what that holds for us. It has become clear people have such a strong desire to know what's ahead, to plan for their own future. What few ever take into account is how quickly life can change, in an instant. Truth is I don't know the future any more than any of us do and I try to hold my plans loosely. I know what I feel in the present and that is thankfulness for where we are.
If you have a question you are dying to know, shoot me an email. I'd love to answer it over on Facebook.
Stay tuned in the next two weeks as I will have some very exciting posts coming up on the blog. One of them will be a wrap-up of Ellis' first birthday which will be next week (can you believe it?). The other will be a MAJOR announcement.
How's that for a teaser? Keep checking back, or better yet, follow along by hitting the button to your left.
Some exciting things coming down the line for our little family. Stay tuned...