Every 3 months or so we get together with as many of Jude’s therapists/nurses to catch up on his progress. The last (first) one was quite useful, out of that meeting there was agreement that some of his medication need to be changed to alleviate his symptoms of acid reflux – since that happened Jude’s health in this regard has been so much better, few if any problems since makes for a much more content Jude.
The general consensus in the room was that Jude has improved in many areas since that first meeting. His head control is better, his IS appears to have gone (albeit replaced by myoclonic jerks), his weight has been steady and appropriate and he is beginning to make a connection between himself and his limbs. Some of the progress is small, barely noticeable until you look back on where we’ve come from, but there is progress.
Other things agreed at the last review included the various pieces of specialist equipement that have since been assessed for and we ether now have or are in the process of getting – high chair, push chair, car seat, sleep system.
As oft reported on this blog, Jude has had a succession of chest infections. About every six to eight weeks on average throughout his life. This means a week getting ill, a week ill and a week recovering – upwards of 50% of his life dealing with chest infections have no doubt compromised his development.
Although the last bout a few weeks ago was viral, there is ongoing concern that many of these infections are caused by aspirating his liquids. It has been suggested that Jude has a videofluoroscopy. This will take a good look at how Jude swallows and how often he might be aspirating – if it is too often they say we will have to consider another feeding tube – either a nasogastric tube, which he had before, or a gastric tube so that he can be fed directly into his stomach. Neither option appeals much but I feel that if the results are conclusive and not in Jude’s favour it is probably something we are going to have to swallow (excuse the pun).
So from this review we will likely look at a referral for a videofluoroscopy and also move forward with the sleep system assessments. We also discussed his sight issues and whether we would be able to move forward on this as we are a little in the dark as to Jude’s quality of sight – at times we think he might be focussing on something, but equally that could be an absence seizure or day dreaming.