Well Ronnie is now 6 months old and the worst fears of brain damage have been put aside (for now). Though she still cannot feed and has her NG tube in, she is developing as any other normal 6 month old. There have been a few strange occurrences though, which I shall be ringing the physio therapist about tomorrow. At her last appointment she was doing the splits laying on her back, the physio said that she wasn’t overly concerned but she did seem a bit double jointed (overly flexible), since then, well yesterday in fact, Ronnie got herself in to the position in the following picture:
Clearly this is not normal for a 6 month old baby who can’t even sit up by herself yet or crawl. I thought she was going to break her neck and so quickly jumped up and picked her up, only with hindsight realising maybe I should have taken a picture first to show the physio. She is already known to have some weak muscle tone which is why Cerebral Palsy has also been ruled out (for now)
I’m hoping to also chase up the doctors on her chromosome test results that were done when she was born and which seem to have got lost or at least get them to retake them.
Well anyway after asking around I find this ability is called hypermobility and can be a symptom of various other problems so I will definitely be raising some concern to the physio and see if she can give me some reassurances.
Also tomorrow Ronnie goes for a Barium swallow, which means that they make her drink some radiated fluid and then give her a scan and they can see what happens to the fluid, the reason for this is that she is soon to be having a Gastrostomy. This is a tube inserted down her throat with a little light on the end and in to her stomach, when it reaches the right place they can see where it is by the light and they make an incision in her stomach and attach a peg to the tube inside so that she can be fed via the tube in her stomach rather than having the continued discomfort of having her NG tube. They have to do the Barium swallow first to make sure there are no other internal problems going on and if there are they can fix those at the same time, eg: reflux.