12/30/2024
Today was a follow-up visit at Dr Stanton's office, our cardiologist. We saw the PA, Ben, who fully examined Jacob including an echocardiogram. Everything appears normal, except Jacob's exaggerated heart rate.
They increased his metoprolol tartrate beta blocker to 100 milligrams twice per day. This is double the previous prescription. I will monitor Jacob's blood pressure and vitals closely for the next few weeks to ensure there are no issues with this increased dosage.
12/27/2024
Today ended our next 28 day tobromycin regimen. We ended up a few days behind because we forgot the dosage when we travelled to OSU for Jacob's last ION363 treatment.
12/26/2024
On our 12/17 visit to Havener at OSU, Dr Pisano ordered a third set of lenses, due to the fact that they found a stigmatism in one of Jacob's eyes. Additionally, the left eyelid is much more droopy than the right, so the new lenses account for that as well.
These new lenses arrived today and are much more difficult to get in his eyes. This is largely due to the depth of the lens. They hold more of the eye solution than previous versions, therefore it is difficult to keep it from running out.
They seem to be working quite well!
12/17/2024
That's right! Mom noticed Jacob's tongue moving when she was cleaning his lips and doing a little personal hygiene for Jacob. This is incredibly huge! Couple the tongue movement with the new movement in his right leg, his right big toe, and the other small movements he seems to have gained, and it would be a clear indication that, although slowly, he is definitely improving.
12/17/2024
Back to HAVENER EYE CENTER at OSU for Jacob's newest lenses. The new lenses arrived Yesterday and Jacob was able to wear them all day long. Dr Pisano wanted to examine the new lenses and see how Jacob's eyes look. This was definitely not a wasted trip, as they were extremely pleased with his eye progression and how much better he is doing. Still, there are more adjustments to be made, and much more work for Jacob to do to get his eyes back in shape.
Dr Pisano ordered a third set of lenses, due to the fact that they found a stigmatism in one of Jacob's eyes. Additionally, the left eyelid is much more droopy than the right, so the new lenses will account for that as well.
12/02/2024
Treatment #14! Everything went perfect, blood work was good, although Marco did have some trouble finding a vein on Monday morning. We ended up going down to the lab to have his blood drawn. Doctor Kolb had ZERO difficulty finding the "sweet spot" in Jacob's back! This was the best injection yet! As with almost every injection, he had leg pain, which would persist through the 6th (Friday).\
