Actually they're better than ok. I feel like I am in the best place that I've been since Ella's diagnosis.
I'm so much closer to accepting that SMA is part of our life. Do I like it? Of course not. I hate it. But I'm starting to accept that Ella has this disease and we can't change that at this point. And I'm really starting to go on with life. And it's becoming "normal" for us.
And then there's the eating disorder. At this point, I'm very close to being considered "recovered". I only have one more session with my dietitian and one more session with my therapist. They both feel that I'm ready to move on (as do I). It's a wonderful feeling.
But I think the biggest reason for being in "the best place" is because of our hope. Ella has continued to improve, which is not something we planned on after hearing her diagnosis. Children with SMA do not typically improve, rather, they usually get worse.
And Ella got worse for a while.
But her improvements lately have given us a new hope that we never had before.
Here is a video of Ella from a year ago. As you will see, she is unable to lift herself up and struggles to lift her arms even a small amount.
Now here are two videos showing what Ella has been able to do in the past two months:
And finally, here is Ella's latest achievement. Today she was able to take one small step while only holding my hands! This means she was bearing her own weight and only using my arms for balance! This one little step is a really BIG step for her progress!!
We're not really sure why Ella has been making this wonderful progress in the past few months.
We think maybe her diet might be playing a role. She started this Amino Acid diet last March, but she was throwing up at least one feed every day. It wasn't until August that we finally figured out the vomiting was due to acid reflux, so we were able to correct the problem. Since then, Ella has been getting her full nutrition every day.
Another change since September is that we have been working on walking with her a little bit every day. This has probably been building strength in muscles that she hasn't used in a long time.
Whatever the cause, we are filled with so much happiness watching her make these improvements!
This year, the holidays are extra special for me.
In the past, the Christmas season has always been my favorite time of year. But last year was different. Last year was our first Christmas since Ella's diagnosis. And I didn't have much joy in my heart. I basically wanted to skip the holidays altogether.
We think maybe her diet might be playing a role. She started this Amino Acid diet last March, but she was throwing up at least one feed every day. It wasn't until August that we finally figured out the vomiting was due to acid reflux, so we were able to correct the problem. Since then, Ella has been getting her full nutrition every day.
Another change since September is that we have been working on walking with her a little bit every day. This has probably been building strength in muscles that she hasn't used in a long time.
Whatever the cause, we are filled with so much happiness watching her make these improvements!
This year, the holidays are extra special for me.
In the past, the Christmas season has always been my favorite time of year. But last year was different. Last year was our first Christmas since Ella's diagnosis. And I didn't have much joy in my heart. I basically wanted to skip the holidays altogether.
But this year, I couldn't WAIT to start the holiday season!
This year I'm filled with joy. I'm filled with love. I'm filled with hope.
