What indeed? Five months since our last posting. How time flies. The last entry was just before our trip to Pittsburgh in February, and now we are planning our next one in September! So, to all of you who have been wondering how Luke is getting on, a huge apology and a promise to keep things up to date in the future. The take home from our February trip was that Luke has gone through "the hard part", that being the major decline in his condition, and now he is largely stable and can stay this way for an extended period. And for the most part so it has proved. He has carried on going to school in the care of his loving nurses, even during the summer because the YMCA summer camp has been hosted at his school - how cool is that for someone who thrives on familiarity and continuity? He's also growing up. He'll be five on 1st October! Therein lies one of the challenges though - figuring out how to get enough food into him (and staying in him!) so he puts on weight. We've been thinking about a range of options lately, but fingers crossed we may have hit on the solution, for the time being at least. We've cut down on the liquid formula and increased his bolus feeds during the day, including quite a bit of Nutella and peanut butter mixed in, betraying his French and American heritage (mmmm.... thinking we need something English in there too, custard maybe?). Overnight he gets only water through the automatic pump and this seems to work well for him - to the extent that we haven't had any middle of the night upsets for a while now (I have one hand pressed firmly on the wooden desktop as I type this).
Luke also had a return trip to Shriner's Hospital back in May for a repeat of the Botox injections in his legs. This is to reduce the spasticity in his adductor muscles that pull his legs across each other and make it difficult for him to stay in his stander. It seems to have been reasonably successful, but not nearly as good a result as the first time (which is apparently pretty normal - so you can't stay young forever, even with Botox). The trip to Pittsburgh next month will be partly to give him the same procedure but using phenol instead - something much more potent. Hopefully this will have a stronger and longer term effect that will make him more comfortable and allow him to be in his stander for longer periods - something that will help in all kinds of ways as he gets bigger. So that's us pretty much up to date. We kept Luke home for the summer while his siblings enjoyed a trip to France and England. Next year we are going to figure out how to bring him with us so we can all be together, as it should be. Watch out for more updates after Pittsburgh. Promise.