September 27, 2020

Well, we’ve made the flight back up to Philly to see Robert’s specialists at Nemours Children’s Hospital in Wilmington, Delaware. This trip is weighing on us a lot more than our previous trips for “routine” Morquio appointments. Robert’s MRI a couple of weeks ago showed instability at the base of his neck and cervical cord compression. Gone untreated it could lead to paralysis. So, he is scheduled for surgery on Thursday.

Until then he will have multiple pre-surgery appointments, X-ray, CT scan, blood work, COVID test, etc. We are so thankful to stay the beginning of the week with good friends to keep our minds off things and for Robert to have some kids to play with. As many of you know, Robert loves Star Wars and found the best toy ever at our friend’s house (see photo) — he may never want to come home!

Thank you for all of the prayers and good thoughts. We will need all of it to make it through this week.

As you can see from today’s photos, Robert is still all smiles.