While we thought that the nicer weather would help James get over whatever illnesses he was fighting in the fall, winter and spring, I guess we were wrong. We don’t know if it’s the heat that’s getting to him now, or maybe allergies, but he’s had a few days these past few weeks when he’s been pretty congested. The oral secretions do seem a bit better since the Botox injections, but the nasal congestion is still making it hard for him to breathe at times.
On Tuesday after Stacy picked up James from school, they went to her parents’ house for dinner. He seemed fine going there, but she said the drive home was a bit rough. His pulse ox is programmed to beep if his sats drop below 85. This is our cue that he needs some suctioning. On the ride home, his sats were hovering at 84/85. Every time it hit 84, the machine would beep so Stacy would have to pull over in a parking lot or side street, suction James, and then continue driving. She said she pulled over so many times on the ride home that she lost count. While we like James’ team of doctors, maybe we should see if we can find another pulmonologist or ENT to look over James and see if there is anything else that he or she recommends.
James has been using a wagon to get around at school, which we thought was a good idea, so we bought one for James to use when we go on walks around the neighborhood. We thought it would be easier on him than being in his wheelchair. It even has a cover to keep him in the shade.
Seamstress Stacy made a pillow for the wagon to make it more comfortable for him:
The birthday invites that Stacy ordered for James’ party have arrived and have been mailed out. We would love to invite you all to his party, but unfortunately, we don’t have the space for all of his fans. Even if we did have the space, I am not sure we could afford to feed you all. Just know that we appreciate each and every one of you. James has the best fans.
