Whew, this was one busy week. Sol and I had one appointment every single day, and two on Tuesday. By the time we got to Thursday evening, we were both beat.
Here’s how the week went:
Monday: We had our weekly PT session with Miss Laura. Because Sol was arching his back much more than usual, Laura suggested we chat with Sol’s neonatologist to see if he was having reflux. We got some good stretching in and worked on holding toys with both hands. The latter helps Sol organize himself and it’s our hope that by having him hold a toy in the middle of his body with both hands, his eyes will also begin to shift to midline as well. (We’ve already seen this happen once or twice.)
Tuesday: We had two appointments on Tuesday. Our first appointment was an evaluation with a Vision Therapist, Marie. Marie came to the house and sat and chatted with me and Sol. She watched how Sol interacted with me, had him hold a rattle, and then decided that she would come work with him twice a month. From what I understand, she will have exercises that will help support Sol’s functional vision, something that will develop as he gets older.
Later in the afternoon, we drove up to Sol’s neonatologist for his follow up. We’d last seen her in November, just a couple of weeks after Sol was discharged from the hospital. After his measurements were taken – 11.8 pounds and 24 inches, she watched him in tummy time, saw him put his fists in his mouth, and heard him chatter. She told us that he was growing by leaps and bounds and couldn’t believe how much he’d changed since November. Woo!
Wednesday: Wednesday was another big day for us: our follow up with cardiology. Overshadowed by his stroke and bleeds, Sol was also born with an ASD, a small hole in his heart. They’d also thought they saw a clot forming just below his heart, and wanted to check in on both. I held Sol after they checked his weight (now 12 pounds) and took his vitals, while a tech ran his echocardiogram. Afterwards, I chitchatted with his cardiologist, who I immediately fell in love with. Both of the heart issues (possible clot and ASD) had resolved themselves – yippee! We were officially discharged from Cardiology – no more follow up required. His cardiologist told me how well he was doing and when I expressed my concern over his vision and some of the side effects of the stroke, she stopped me in my tracks and reminded me of my favorite word – neuroplasticity. She also said how lucky we are, that he is miraculous. His brain has and will continue to do amazing things in spite of the injury, and I need to just keep working at it.
Thursday: We ended our week on a light note with Sol’s OT appointment. Lots of stretching and playing with toys was our focus, and our homework included a continuing focus on engaging Sol’s right hand as well as encouraging him to flatten his hands during tummy time. Easy peasy, right?
After our crazy week, Sol and I boarded a plane with his Nana to spend a few days in sunny Tucson. Our plan is to soak up some warm sun rays and enjoy some much needed family time! Next week is our meeting with a vision specialist from UMD who will help us assess Sol’s functional vision and who will help us come up with a plan to continue to focus on and improve his sight.