We’ve been pretty busy over the last few weeks. The boys are wrapping up the school year. Luca is finishing his second year of preschool; he will go to kindergarten next year. Jackson has one more home instruction session before summer. Jackson had three surgeries during this school year and, rather than attend school which is full of germs, he had home instruction once a week. Jackson usually gets sick at the beginning of each school year and we kept him home this year to prevent him from getting sick so as not to postpone any surgeries.

Jackson had salivary gland surgery at the end of September to improve his respiratory health. The surgeon removed the two main salivary glands in his lower jaw and tied off the two main salivary glands in his cheeks and injected Botox into them to stop the production of saliva. The upper salivary glands cannot be removed because there are too many nerves in the cheeks.

Two weeks ago, I took Jackson to the hospital for a parotid scan to see if the upper salivary glands are still producing saliva. The radiology tech injected Jackson with a special type of radiation that travels to his salivary glands and lights up on a scan if the glands are producing saliva.

His mouth, unfortunately, lit up, meaning the salivary glands are producing saliva, which was confirmed by the radiologist’s report. We are waiting to hear from the ENT on how severe the saliva production is and what the next steps are, if any.

Jackson’s spine has a slight curve in it and is being monitored by his orthopedic doctor. To give him more support when he is in the stander and in a sitting position, Jackson just got a Benik best. The Benik vest is made of wetsuit-like material and provides support to his trunk, which, I hope, will help keep his spine in line.

On May 20 we will go inpatient to start the keto diet. The keto diet can be used to prevent seizures in people with epilepsy. The goal of the diet is to put the body into ketosis so that it burns fat, and not carbs, for energy. This somehow helps to reduce seizures. We have to inpatient for a few days so the docs can ensure Jackson goes into ketosis and not acidosis. They will also teach us how to monitor for this at home, which includes finger pricks to draw and test his blood. If Jackson does well on the keto diet and his seizures reduce, his neurologist will take away one of his four anti seizure meds in a few months.

Finally, Jackson started shopping at Nordstrom (the only store in town that sells shoes made to fit over ankle-foot orthotics (AFOs)). Jackson and I made our way to Nordstrom one Saturday to get him a pair of Plae shoes, which are specifically made to fit over AFOs. The tongue comes out further than normal shoes, they Velcro rather than tie and the material is sturdy so the back of the shoe does not collapse when you put your foot in, which is an issue with AFOs. Jackson is wearing his Nordstrom Plae shoes in the picture above where he is in the stander.