Our day-to-day lives continue to be busy (who's isn't who has two kids?). We continue to take Ari to his various therapy appointments (PT/OT/speech/audiology/ophthalmology/feeding) throughout the week. It is interesting to see how Ari grows. After we had moved away from our apartment, we saw a huge physical progression for Ari. He was exploring more in our new space and using his gait-trainer more. It was very cool. Then, he started to shift more to cognitive/interactive progress. He has become more aware of his surroundings, is more appropriately and consistently engaging with play, and is using his voice more and more each day. We are thankful for both areas of progress! He also continues to see his feeding specialist, Erica. We are so grateful for a clinician who takes pride in what she does and invests in his care. She continues to work with Ari to explore food in hopes he will eat in the future. She truly loves Ari, and he has responded very positively to her presence!
A couple of weeks ago, we took Ari to an ophthalmology appointment in Portland to have his eyes re-assessed for any improvement wit his right eye turning inward. They informed us that there had been no progress or regression. Then, they recommended that we consider having the alignment of his eyes surgically repaired in the near future so that his brain receives the proper signals from his eyes. Although we do not like the thought of rushing him into another surgery, we are beginning to see his eye troubles affect his ability to focus on objects, especially when he is moving. We are hopeful this next step will help to coordinate his eye movements and allow him to utilize his eyes in a non-confusing way for his brain. The surgery is scheduled for May 12th at this point. We will also need to eye patch for 2-6 hours a day. No problem, right?
If I'm honest, I'm sitting here trying to give an update, but it seems difficult with the looming thought his next MRI this Tuesday. I suppose that's the real reason I sat down to blog tonight. We've been experiencing a large dose of "scanxiety" over the past couple of weeks as it nears. We've been analyzing and over-analyzing all of Ari's movements and interactions only to arrive at the same point we almost always do. He's really doing quite well, but there's not really any way for us know if something is going on inside his head. I suppose that's why they schedule these scans and appointments. We continue to be encouraged by how far our little guy has come, and we continue to be hopeful that his little body will never have to deal with cancer ever again.
So, Tuesday morning at 8:00 a.m. we'll release our little man into the care of the wonderful pediatric sedation team to usher him into the imaging tube that more resembles a space ship (and sounds like one, too). We'll sit next to the natural food store at OHSU and try to busy our minds with our smiley, wonderful 7-month-old son, Everett. When called, we'll anxiously greet Ari when he comes back from the MRI, and then we'll wait. More than likely we'll wait until the next day for the results to be given to us. Just as past scans have revealed, we are praying for no evidence of disease. We are praying for fluid spaces to be smaller and normalized, and we are praying for there to be continued signs of healing and restoration. We would love it for you to join with us in praying.
Thank you for continuing to follow Ari's story.
