Friday, 24 June 2011

Positive Hospital Visit

So Lewis had the clinic today, we seen a different consultant, he was FAB, gave us a decent answer to the question we've been asking for nearly a year regarding the mucous Lewis keeps bringing up, didn't fob us off like they always do and after a chat about that and various other issues he has booked Lewis in for 4 small procedures, 1st will be a contrast/swallow study to see how big his stomach is and how much he can handle in it, 2nd will be an 'empty' study to see how quickly his stomach is emptying it as he suffers constipation a LOT and so they have concerns there may be a blockage, 3rd he is having a camera put down into his throat to have a look at his airways and throat and to have a look at that side of the fundoplication as they think it may be a little on the tight side and if it is then they'll have a little wiggle at it to try and loosen it slightly, 4th while he is asleep having the camera procedure they are going to remove his Gtube and replace it with either the mic-key button or the new mini button which they are using more and more, we were hoping he'd have his tube changed today but agreed it best for Lewis to have it done while they have him asleep anyway, so hopefully this will all be in about 3 or 4 weeks time and he should only be in for the day, think i may see how we go about having this man be Lewis's new consultant lol i am so pleased that at last someone has finally listened to our concerns and seemed concerned over it himself and took it upon himself to do what needs to be done for Lewis.
They also seemed a bit concerned about the 'dent' on Lewis's side, where they removed muscle for his repair operation as it seems to be quite deep now so off we went to medical illustration to have photographs of it taking so they can keep an eye on it.
They are pleased with how he's growing and with his weight gain, according to their scales he is now 1 stone 12, but not sure how accurate they are as we always go by the scales at the health visitors and he gets weighed naked there and today he had nappy, jeans and tshirt on but am sure he's not far off it anyway. Oh and as for the feeding we are now at 60 mils twice a day :)
He is not just walking around now, he's running, and also walking outside with his reins on cos am scared of him falling lol, he likes to just walk everywhere it's so good to see, oh and to my absolute horror he can get ALL the way up our stairs, silly daddy left the stair gate open earlier and he was gone just 2 seconds and i found him half way up the stairs, i was horrified BUT on the plus side i don;t have to struggle carrying him and a big bump up the stairs now, so at bedtime when i said time for bed he took himself to the stairs, with me right behind him obviously he got all the way up without any help, he is a little monkey.
I've been really struggling for various reasons lately but Lewis sure was sent to keep me going my little sunshine warrior hero <3

Thursday, 16 June 2011


Lewis is doing great, he has become an expert at walking very quickly due to all his practice, all he done was walk up and down and round and round the living room all day long for a few days, he is great on his feet now and wants to be on them all the time, so we bought him a wee harness so we can keep a hold of him and prevent any bad falls or anything, he doesn't mind being on them, for now lol he does hate being held onto though or holding his hand. So now he's mastered walking he's moved onto his speech which is coming on loads so we're hoping by the time the makaton board eventually comes he won't really need it he does have quite a lot of words but as he was concentrating on the walking he wasn't really using them very often, but now is. He really is our ray of sunshine, he was certainly sent to make us smile, he's just such a good wee boy very sociable and happy. Few things this week about SALT really peed me off but i won't go into that for now as really don't want to rant on here, all i'll say is he's my son and i know what's best for him and i do everything i can for him and no1 will make me feel otherwise and when it comes to decisions about him, then i'll be the 1 making them thanks very much. Just wishing at the moment they would all just go away and leave us be, SALT isn't (in my opinion) doing what she was sent to us to do, but instead poking into other areas that aren't hers to poke into, so wish people would either do their own job or bugger off and leave us be!!
We've been stuck on the feeding at the moment well till now i'm just about to push the last of his bolus witha n extra 5 mils in this 1 taking him to 55mil boluses, he's doing so fab with this, a huge improvement from taking only 30 mils, we've tried this so many times but failed but this time seems to be his time and he's readt this time, so here's hoping we reach our 100 mils goal in a couple months :) and also he is now putting a dummy all the way into his mouth but still not sucking it, just keeps it between his teeth, he gags on it eventually but still it's something. So proud of him for all he has come through and all he has achieved in his 19 months.

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