It’s been a while since our last posting, so we have lots to update you on. July has been very busy. We had long planned a trip to Seignosse in the southwest corner of France to stay with Luke’s French grandparents. It’s been a traditional summer family destination for many years and we missed out last year, so wanted to make a special effort this time around. That said, we weren’t sure until the last minute whether we would be able to travel with Luke. At the very end of June we had a surprise stay in hospital to get Luke’s digestive system back on track. It had turned into a bit of a blind alley due to a combination of many factors: his medications, the wrong milk formula, not being as upright and mobile as he should be, not enough fluid, too much cheese, not being able to chew his food etc. etc. all conspired to have the doctor utter the immortal line: “he’s full of it”. While the process leaves something to be desired, getting this sorted out has been a significant boon to Luke; he’s certainly a lot more comfortable and we have learned a lot about how to
make sure it doesn’t happen again. All this meant that we had to delay our departure; Charlotte and Yannick went in the advanced party and we followed with Luke a couple of days later. We had a roundabout itinerary that took in Miami , Madrid and San Sebastian airports, but Luke took it all in his stride and thankfully there were no delays or lost bags. It was a new experience for all of us, travelling with Luke in a “Kid Kart” that clearly identifies him as someone with special needs. Everybody was super-helpful and made things that little bit easier.
The stay in France was a lot of fun. Days there tend to revolve around trips to the beach at Hossegor in the morning and early evening. It’s a classic wide sandy beach on the Atlantic coast just north of where France turns into Spain and a Mecca for surfer dudes from all over the world. Getting Luke onto the beach involved manhandling his stroller, with him in it, over the soft and oh-so-hot sand (don’t stop, keep moving!), which was a great workout. We would then dig him a recliner in the sand, line it with his towel and place him in it. This seemed to make him happy, provided we kept up a steady supply of Madeleines (small soft spongy butter cakes very popular in France) and apple sauce. He also enjoyed trips to the water’s edge to cool off ("let's go to the eau!" as one of Luke's French cousins put it) and watching his brother and sister body boarding when the tide was right for good waves.
Luke had another Christening while we were in France at the Paroisse Notre Dame de la Mer; a great opportunity to get together with friends and family on that side of the Atlantic. Les Anglais (Luke’s English
grandparents, uncle and future auntie) made the trip down by car, so it was a wonderful international gathering to celebrate our “Little Big Man”. The party afterwards at the house on Rue des Pins was a great occasion and Luke seemed to enjoy all the attention. Having the seven grandchildren/cousins all together is
always fun, and Seignosse is the only place we have ever been able to achieve this. It really made the trip worthwhile and brought home to us the importance to the wider family and friends of being able to spend time with Luke, rather than just looking on from the other side of a computer screen, wondering that new challenges we are facing each day and whether there is anything they can do to help. Everybody got stuck in and gave us the opportunity to socialize without worrying about whether he was being attended to. A particularly big “merci” to Françoise (Mimi), Luke’s French grandmother, for organizing such a great, memorable (and tasty!) occasion.
We returned home with Luke this weekend, leaving his brother and sister in France for another couple of weeks. The return trip was again mercifully uneventful, and while it was always a bit of a risk taking him on such a long trip, in the end it paid off in spades. We have no idea when or whether we will be able to do this again. Immediately on our return we have Luke’s Angels helping out overnight, thanks to Lori’s wonderful organization. We miss Charlotte and Yannick, but it’s a chance to get Luke (and us) back in his home rhythm. He’s been back at Children’s Nest for a couple of days, catching up with all his Tampa friends.
While we are seeing a gradual decline in Luke’s physical abilities, he seems to be still on the plateau we first described back in early June; long may it last. The next challenge will be a hospital visit to have his feeding tube replaced with a “Mickey Button”. This should be a lot more convenient and comfortable for Luke, so while we don’t enjoy hospital stays and the anesthetic always seems to be a chance for Luke’s condition to worsen, it’s something we are looking forward to getting done.
Best wishes to all of you, and thanks as always for taking time to catch up with Luke.
make sure it doesn’t happen again. All this meant that we had to delay our departure; Charlotte and Yannick went in the advanced party and we followed with Luke a couple of days later. We had a roundabout itinerary that took in Miami , Madrid and San Sebastian airports, but Luke took it all in his stride and thankfully there were no delays or lost bags. It was a new experience for all of us, travelling with Luke in a “Kid Kart” that clearly identifies him as someone with special needs. Everybody was super-helpful and made things that little bit easier.
The stay in France was a lot of fun. Days there tend to revolve around trips to the beach at Hossegor in the morning and early evening. It’s a classic wide sandy beach on the Atlantic coast just north of where France turns into Spain and a Mecca for surfer dudes from all over the world. Getting Luke onto the beach involved manhandling his stroller, with him in it, over the soft and oh-so-hot sand (don’t stop, keep moving!), which was a great workout. We would then dig him a recliner in the sand, line it with his towel and place him in it. This seemed to make him happy, provided we kept up a steady supply of Madeleines (small soft spongy butter cakes very popular in France) and apple sauce. He also enjoyed trips to the water’s edge to cool off ("let's go to the eau!" as one of Luke's French cousins put it) and watching his brother and sister body boarding when the tide was right for good waves.
Luke had another Christening while we were in France at the Paroisse Notre Dame de la Mer; a great opportunity to get together with friends and family on that side of the Atlantic. Les Anglais (Luke’s English
grandparents, uncle and future auntie) made the trip down by car, so it was a wonderful international gathering to celebrate our “Little Big Man”. The party afterwards at the house on Rue des Pins was a great occasion and Luke seemed to enjoy all the attention. Having the seven grandchildren/cousins all together is
always fun, and Seignosse is the only place we have ever been able to achieve this. It really made the trip worthwhile and brought home to us the importance to the wider family and friends of being able to spend time with Luke, rather than just looking on from the other side of a computer screen, wondering that new challenges we are facing each day and whether there is anything they can do to help. Everybody got stuck in and gave us the opportunity to socialize without worrying about whether he was being attended to. A particularly big “merci” to Françoise (Mimi), Luke’s French grandmother, for organizing such a great, memorable (and tasty!) occasion.
We returned home with Luke this weekend, leaving his brother and sister in France for another couple of weeks. The return trip was again mercifully uneventful, and while it was always a bit of a risk taking him on such a long trip, in the end it paid off in spades. We have no idea when or whether we will be able to do this again. Immediately on our return we have Luke’s Angels helping out overnight, thanks to Lori’s wonderful organization. We miss Charlotte and Yannick, but it’s a chance to get Luke (and us) back in his home rhythm. He’s been back at Children’s Nest for a couple of days, catching up with all his Tampa friends.
While we are seeing a gradual decline in Luke’s physical abilities, he seems to be still on the plateau we first described back in early June; long may it last. The next challenge will be a hospital visit to have his feeding tube replaced with a “Mickey Button”. This should be a lot more convenient and comfortable for Luke, so while we don’t enjoy hospital stays and the anesthetic always seems to be a chance for Luke’s condition to worsen, it’s something we are looking forward to getting done.
Best wishes to all of you, and thanks as always for taking time to catch up with Luke.