People ask me all the time "How is Ellis doing?" I always answer that question by saying, she is so well. She is lightyears ahead of where anyone ever dreamed she would be. I am told by medical people frequently what a miracle her life is. Still, that being said, we have some catch up to do, and we work hard at it.
Ellis recently turned 15 months old! We have been home from the hospital with her for almost 14 months. The very first year, well the biggest word for it was "hard". There were a million things to do and a million places to be. We were in Doctor's office after Doctor's office. That was my life for our 3 year cancer battle and it was overwhelming to, once again, be thrown back into the medical world in all its glory.
Thankfully all of the appointments have slowed and we've developed a rhythm. For her big appointments (Eye and Neuro) she only checks in once a year, which is wonderful.
The only other appointments she has are Pediatric (she is on the same schedule she would've been on any way), Physical Therapy and Occupational Therapy.
Our biggest loads, by far, are therapy. She rotates between PT and OT once a week. Then we have a Physical Therapist who comes to our home every other week. So that means some weeks we have therapy 2 days a week and other weeks just once. It can be draining to always have appointments, but it is worth it when you see her progress.
I recently heard therapy described as giant baby steps. That is an incredibly accurate description. We work really hard to get her to conquer a skill. When she does it might seem small to others, but it's giant to her. You keep going forward day after day, baby stepping, then one day you look back and see how far you've come. And my, how far she's come!
Ellis can sit up for small stints of time. We are still working on stamina and core control with her. What she enjoys far more, is standing. She does that with ease as long as she has something to hold for support.
She has been able to roll from her side to her back for awhile but the big skill we have been working on is from her tummy to back. I am thrilled to say she recently mastered this skill and is fully able to roll from tummy to back. Now she's a rolling machine. When she did it the first time I about fell out of my chair. I had begun to think she might just skip rolling all together, but she just wanted to do it on her time. That's my girl for ya.
We have been working hard on walking in therapy. She has started to initiate some steps on her own, when she is in her walker. This is a really big deal and one that makes us very proud. We are just at the beginning stages of learning, and it will be a months long work in progress. But just as she's done with everything else, she will conquer it in time. We've been told before there's no reason why she shouldn't.
Ellis' main source of nutrition comes from baby food, but we also sprinkle in a few small bottles for extra nutrition. She can "rake" in food by the fistful but we are still working on the fine motor skill of using her pinchers to pick up food. She loves brining things up to her mouth, so we are not too far away from our goal. I still think, daily, how miraculous it is that she is not on a feeding tube. We were originally told there was no way she would leave the hospital without one.
Her current biggest achievement is in her language skills. She knows 6 words now-Mama, Bubba, No-No, Yeah, All-Done and Stars. She is constantly jabbering and loves the sound of her own voice. We work the most with her on PT so it's funny to us that the language thing she just kind of picked up on her own. She's a very smart little girl.
Ellis is feisty, determined and stubborn. (Funny enough, those same words have been used to describe her Mommy). We have been told all of those qualities are what helped contribute to her staying alive. Now we are believing those same qualities are what is pushing her forward towards full recovery.
That's what we continue to believe for Ellis Claire: her life will have no limits. We love to hear from those of you who continually lift her up in prayer. It is astounding to see how far she's come this last year, especially when she wasn't even supposed to be here in the first place. It puts all the hard stuff into perspective. I know your prayers, combined with her will, contributed to where she is now. I'll be forever grateful.
I am thankful for her life and progress. I am thankful for our rhythm now and how far we have come. We will keep marching forward, baby step by step, until all of these things will be but a memory. What a day that will be.