It's been awhile since I've done an Ellis update and this seemed like the perfect week to do it. In 3 days it will have been a full year since Ellis came off the vent. That day I had chosen to remove her because she had gone into respiratory failure; her health was fading, her scans showing massive damage to her brain. We were told she wouldn't make it and if she did she would have zero quality of life. I took her off the machine that day preparing to say goodbye. In a move that stunned us all, she did not die.
My baby girl lived. And here she is, a full year later, living a full life, doing things we were told she would never do.
One of the biggest things we were told was that she would possibly be deaf. She passed a hearing test a couple months after we brought her home but we recently had to do one last one before they would sign off on her. I'm happy to report that she passed this hearing test as well with perfect hearing. We've now been released as hearing patients, which is so wonderful.
One thing off the list!
Ellis continues with her weekly Physical Therapy and we have also started to rotate in Occupational Therapy as well. I view PT as learning the big motor skills and OT as more of the fine motor skills. Therapy has been a little slow moving because she is very resistant to it. Anything medical-related she is not the biggest fan of (which is normal for kids who've had traumatic hospital events). Even so we have definitely seen progress and improvement in her. It's night and day from where we were.
Head control used to be a huge issue for her and we worked months and months on it in therapy. Thankfully she has now got it down and head control is no longer a concern. Now we are working more on core strength. Ellis can sit up but we are working on her endurance in doing it for longer periods of time. She is constantly making progress in this area.
Her feet have started to turn out a bit so she is going to be fitted next week for plastic leg braces. The braces are not anything related to her injury and many kids have had to use braces, even including My Dad as a kid! They think she will most likely only need them for a couple months and it will greatly help her stance once she is able to stand on her own.
One of the big things she was also resistant to was her bouncy chair. In the past week she surprised us all but no longer throwing a fit when we put her in there. She is growing up and I see her maturing to the point where she's actually enjoying the things she used to fight.
Eating has been going well for her. She is not the biggest fan of bottles, although she humors us and takes it when we ask. The good thing is we are entering the stage where we actually get to start to cut out some of her bottle feedings and continue to add more solid foods. She's doing great on her solids and recently started trying out finger foods. This was a big deal for Ellis and so far she has done well!
We continue to work with Ellis on vision. When you have had strokes and a brain injury like she has, it is normal for vision to take awhile to repair. Ellis can see, this we know because of how well she responds to her light and color eye therapy. We have taken her to a Neurological Eye Doctor who has also said there is nothing physically wrong with her eyes or the nerves in her eyes. What we are working on is teaching her brain to see all the fine details. We have a vision specialist that works with her every other month and we have several therapy tools we do at home daily. That is one area you can believe with us for full restoration for her. We believe she will be fully healed in this area just as she has in so many other areas. Thank you so much for your continuous prayers for her.
Ellis loves to "talk" and is constantly babbling. She knows 5 words so far-Mama, oh, no-no, yeah and stars. Confused about the word stars? It's because her Bubs and Nonnie are always saying "Oh my Stars!" to make her laugh. She picked up on it and "stars" now appears to be her favorite word. She "talks" so much and so loudly, I can't even imagine the kind of sentences that will flow out of her once she really starts going at it.
As you can see in her pictures she has two bottom teeth, she is extremely proud of I might add. She also two additional ones that are just about to cut through.
Besides her Physical/Occupational therapy the only Doctors we see are for check-ins (typically every 6 months). We are so very thankful for a healthy baby!
Ellis is such a happy, smiley little girl. Her smile lights up her whole face and the whole room. I can't even put into words how thankful we are for her life. Now that we've had her for the past year, I couldn't imagine life without her. She was meant to be in our family, something I felt so clearly even before her birth. It's truly astonishing to see how far she has come in the past year and I absolutely cannot to see how she continues to amaze us all.
Keep on moving mountains Ellis Claire!