So, a quick review of the past week....on Friday, as mentioned, we headed off to the paed with a temp, a cough and a snotty nose. Paed confirmed that Sam has croup...yet again. Started the oral cortisone and whammed him with a mighty dose of Pulmicort through the neb...
And when I say "mighty" it's no exaggeration, it took over forty-five minutes to completely neb the 8mls. We had to take a five minute break in between but, although he fought like crazy when we first started (as usual), eventually Sam settled down and just sat it through.
We've been having a really rough time getting Sam to eat. He was tolerating absolutely NO pureed food last week, not even porridge. In fact, there were two days where he ate practically nothing - thank goodness for Pedisure, which at least gives you peace of mind that he is getting some fragment of nutrition in. By Monday I was totally convinced there had to be a physical/medical reason for Sam's refusing to eat because at times he would open his mouth for a spoonful of food, but just not swallow it. He kept one mouthful in his mouth for over twenty MINUTES! He doesn't quite know how to spit the food out but eventually the food was reduced to nothing more than an orangey-slimey-glob and just sort of poured out of his mouth while he was crawling. So off we went to the GP on Monday, almost certain we were dealing with tonsilitis at the very least. The diagnosis? No tonsilitis, no weird obstructions in his throat preventing swallowing, no sores in his mouth...not even remotely red and/or swollen teething gums. Nothing except for a fairly mild ear infection and the persistent low-grade temp. (Did you gasp when you read "ear infection" and wonder to yourself why, if Sam has had continuous problems with his ears for the last four months, was under anaesthetic for another ENT procedure AND all the equipment to insert grommets/tubes had been rushed to the theatre moments before Sam's op because Dr S was so certain Sam would need gromments - why they weren't put in? I, along with several other doctors, have found ourselves wondering the exact same thing!)
So off we went on Monday afternoon, with another antibiotic but still completely baffled as to why Sam was not eating. Over the past couple of months I have slowly being introducing small amounts of "normal" food into Sam's diet, largely because I could see he was quickly becoming bored with purity especially because he is so incredibly fussy and eats only a tiny variety. So on Tuesday I thought that this HAS to be the problem...Sam wants to eat "normal" food all the time. I made him a bowl of instant noodles (cooked to almost a pulp, of course) and he ate it. I thought "Yay! Problem solved. My little smurf is just growing up!"
As if it could possibly be that easy!
On Tuesday we decided to make a last minute reservation for Goudini Spa. Sam's croup seemed to be gone, he had been in better spirits on Tuesday morning and after our lunchtime success we were all feeling a little more positive. Meghan left on Wednesday morning for her very first school camp, it was a very stressful couple of weeks leading up to Wednesday as she is very much a "homely" little girl and not always comfortable spending time away from home. It would be first time she would be sleeping out of the house in a good couple of years. After a rather teary farewell (on both her's and my part) on Wednesday, we packed up and headed off for Goudini. Although Sam's eating victory was short-lived and we were back to almost force-feeding him by Thursday, the rest of our little "vacation" was awesome. The resort was a little busier than we expected, just enough to feel like we weren't alone but peaceful enough to just do what we wanted, when we wanted.
Of course we went prepared and packed Sam's dvd player in so that he didn't have to miss out on three day's of number counting!
The outside rock pool (exclusive to our little circle of bungalows) was literally a stone's throw away from our patio. On Wednesday afternoon it was warm enough outside just to make do with this pool, but by Thursday morning strong winds had set in and after some afternoon drizzling, we resorted to the undercover pool.
Sam *LOVED* the warmwater pools (there's a little video of him at the end of the post)!
Just taking it easy on Saturday......
And so, for our next really REALLY big news....Sam has an iPad! The topic of Sam's communication capabilities, or lack thereof, has been one of the main topics in our home lately. Although at one point Sam seemed to show some aptitude towards signing, we have stagnated and he makes very little effort now with this at all. He can, to an extent, communicate certain things to us by either gesturing with his hand or actually physically taking our hand and, say, putting it on a book he wants us to read. Also, as with many of Sam's RTS brothers and sisters, Sam's receptive language is excellent. He almost daily takes us by surprise by understanding things we say to him, or even to each other. There was a time when Sam did do some baby-babbling, but he hasn't done that in months and now most of his verbal language consists of grunts or a really lovely kind of sing-songing! Of course our heart's desire is that Sam will talk one day, but we need to be realistic as well and make all possible resources available to him which might make it possible for him to communicate with us. Speech has also been a regular topic on the RTS listserve recently, which couldn't have come at a better time, and one comment I read which stays in my mind and was a definining moment for me was this one (hope you don't mind Kristi) :
"Even though it's not Noah's actual voice on his I pad it is still his thoughts. So to me it IS his voice."
So Chris and I chatted...and chatted....and chatted some more. We decided that Sam will undoubtedly benefit from the the iPad, even if he is not able to fully utilise it from the beginning, and the knowledge that a large number of Sam's RTS brothers and sisters rely very much on their iPads for communication pretty much had us convinced this is the way we want to go. Our only concern and obstacle was the price of the iPad. And that's round about when Sam's precious Aunty Anthea stepped in. As a mom of two special needs girls and being extremely passionate about giving non-verbal children a voice, Aunty Anthea was desperate for Sam to have the iPad and so contributed a large portion of the cost thereof as an awesome, totally unexpected, hugely appreciated gift to our Sam! How amazing is that? We can never thank you enough, Aunty Anthea, or fully express how grateful we are to you for making this possible for us and for Sam of course xxx
So, we are slowly introducing iPadding Smurf to this lovely new device. We have looked at a couple of communication applications so far as well as some fun apps for Sam. I am hoping to make an appointment with the ST before the end of the week so that we can also have a professional input as well...but it is soooooooooooo exciting!
In closing, a videa of Sam in the warm pool at Goudini. Just before I picked up the camera, he was acting like a crazy loon...squealing and so on, but decided "less is more" by the time I pressed "record".
P.S. Sam has now been asleep for 1hr57mins.....that's the longest sleep in over a week....WHOOP! WHOOP!