It has been a rough holiday season. But it has also been one filled with happiness and love too. When we were in the hospital last week we didn't know for sure when Seb would be coming home. I believed most certainly it would be in time for Christmas and even Christmas Eve. I wasn't… Continue reading Thank You
Well, I guess the ER nurse was right. It's going to be the 23rd or the 24th before Seb comes home. But talking to him this morning on FaceTime I was greeted by a lot of smiles and vocalizations (talking). He's doing much better and looking forward to reading his Dragon Masters chapter book… Continue reading Day 3 in Hospital
It's just after 7am. There's a vomit stain on my left shoulder. It's brown. 'Coffee ground vomit' they'd said. Dried blood. A shadow of yesterday every time I look up. Extreme Gastroparesis. Did they use that word, extreme? Shifts of sleep intervals between Sebastian and I. 15, 20, 30, 45 minutes tops. Total? Maybe 3… Continue reading Reporting from the Front Lines.
A little over 3 weeks ago Sebastian came down with a cough. Tallula had just gotten over her own cough after three weeks. Then came the chest congestion for Sebastian and because of his low tone, he cannot cough out phlegm like Tallula can. So it sort of rattles there and sounds absolutely awful… Continue reading Tis the Season
At the beginning of July we had Sebastian's check-up at the nutrition clinic where Seb sees many doctors in many departments. The good news was that he didn't lose any weight since his previous visit, 9 months prior. His body fat % is also at a good amount. The bad news was that he's not… Continue reading Blended.
Sebastian is a world traveler. By the time he was 2 he had more stamps in his passport than the average American. Born in London, UK to Australian-British and American parents, I suppose it was inevitable. Despite a new cerebral palsy diagnosis at age 3 months, we moved to Cairo, Egypt for Ali's job. The… Continue reading Around the World with Sebastian: Travelling with a child with CP