I am going to try to get back into the swing of things and publish monthly updates like I used to do. Try being the key word. Since Covid hit, it really messed up my normal routine. It’s messed up all of our routines. I’m working from home, James is e-learning, and Stacy isn’t working as much because a) most of her clients are also working from home and b) because she has to help James with school.

CDC Considerations for Operating Schools

A few weeks ago, the CDC released an article with their recommendations on how to re-open schools in the safest way. The six page PDF can be found here. I’ll admit that I haven’t read it word-for-word, but merely skimmed it. I did notice one thing to be missing, though. They don’t mention anything about what to do with kids with special needs. What about the kids that get therapies throughout the school day, or need frequent suctioning like James does?

Staying six feet apart is mentioned several times, so are we to assume that James will not be going back to school because his nurse and therapists can’t do their jobs from six feet away? Will James be remote learning for the next year? Two years? The rest of his life? This really kind of sucks. This pandemic is affecting us all, but I think James, and kids like James are getting hurt the most by it. Without his therapies, how far back is he going to fall?

On a happier note, thanks to the generosity of our family, friends, and James’ fans, Stacy was able to put together 40 care pouches for the nurses at our local hospital, as well as some toys and movies for Child Life. Thank you to everyone who donated, and an extra special thank you to all of the nurses to continue to go to work every day and put their own lives on the line.

Medical Stuff

Knock on wood James has remained relatively healthy this past month. He has had some respiratory issues, but not nearly as bad as they were. We think getting him in his stander every so often has been helping. Getting him out of the house for some fresh air probably helps, too.

A few weeks ago we got a special delivery…

So what did we get that was so critical? Eye drops. Not kidding. Because James rarely closes his eyes and doesn’t know how to blink, his eyes get really dry. It’s gotten to the point where he is developing a film on them. We’ve been using eye drops (both over the counter and prescription) and while they have helped somewhat, the opthamologist recommended we try something a bit stronger. These eye drops are uber expensive so it took a bit to get insurance to aprove them. One drop in each eye every two hours, six times a day, for eight weeks. James had a 14-day follow-up with the eye doctor this past Monday and she said his eyes are already looking better. Stay the course and see her again in another two weeks.

James was supposed to have an AFO / wrist guard appointment on Thursday, but we had to cancel because the van wouldn’t start. Dead battery. Fortunately, I was able to jump start it so she could drive it to Pep Boys for a new battery.

On May 23rd James celebrated his one year ‘spinalversary’. Hard to believe it has been a year since he had his full spinal fusion. He rocked that surgery, but his digestive system almost completely shut down so he spent an entire month in the hospital before he was able to come home. We really appreciate everyone who helped us through that long month. The incision has healed nicely. They say that chicks dig scars. It’s just too bad it’s on his back where not many people will see it.

School

We ended the school year with lots of mixed emotions. Firstly, because of the coronavirus pandemic and abrubt shift to remote learning, James hasn’t seen his teacher, nurse, classmates or therapists in two months. We’re still unsure of how things will play out in the fall. Will they be back in the classroom? Still doing fully remote classes? Or will they go with a hybrid aproach and combine both in school and remote. I’m continually watching the covid numbers and unless things improve dramatically, I don’t think they will be fully opening schools in the fall, if they open them at all. I wish James could get back to school to at least get his therapies, but I doubt that is going to be an option because of the close contact needed to perform the therapies.

The second thing that is leaving us with mixed emotions is that his nurse won’t be with him in the fall if they do go back to school. She recently became pregnant and would only be able to be with James for the beginning of the school year. Additionally, she doesn’t want to put herself at increased risk of contracting coronavirus while pregnant. She lives close by so I am sure we’ll still see her. We wish her the best and look forward to meeting her little one.

Memorial Day

Thank you to all of the soldiers of our armed forces that gave the ultimate sacrifice to protect our way of life.