Praying that everything continues, so far no problems, he’s doing really well. They tirade up the dose every 30 minutes. At 11:40 I made a made a mad-dash to the vending machines for a Mt. Dew for him and the Coney across the street for a plain hot dog. Mom of Man of Steel flew and was back before the next tirade up of the dose (the elevators do slow me down a little since we are on the 13th floor).
The really wonderful news is that if he continues on this path we will be done by 1 p.m. Hallelujah! Keep your fingers and toes crossed, and keep us close to your heart.
They have already scheduled our next three treatments and a follow-up with the doctor. The schedule is looking very full. School had connected with me about home-bound services, only a couple of days a week for a couple of hours, I’m thinking about it. Need to weigh out if I could fit it easily into the schedule, not sure.
While here I received an email message from “Our Fragile X World” on doing a survey on “Health and Technology” – isn’t that fitting as I sit in a hospital with a laptop on my lap. Got that done.
No news will be good news, may not do another update until we are home, I'll just add it below. Hugs, Sally
Update 2 p.m.
Home now, he’s happy, doing well! Forgot to mention earlier the song “The Monster” was my wake-up song this morning I took that as a good omen. :-)
We have three more treatments like this to do, once a week for the next three more weeks. Because he tolerated it well those treatments should go much quicker than today’s treatment. Hoping that this works and normal, even if it is a new normal, is right around the corner.
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