The kidney infection gave me quite a scare because it was most probably caused by an untreated bladder infection which is really quite horrible because, as someone who has suffered countless bladder infections and related problems, the idea that Sammy had to endure this kind of pain for so long is unbearable. Even more scary, if he hadn't landed up in hospital with the kidney infection we wouldn't have known he had the pneumonia which didn't present itself when his docs listenend to Sam's chest. I decided to buy my own urine test kit and check Sam's urine every couple of days and even the most recent test, being today, showed no indication of an infection so I am truly stumped.
Thankfully Sam's MRI to rule out a tethered spinal cord has been re-scheduled for this coming Wednesday at 09:00am so, although I am still trying to figure out how we are going to manage the nil per mouth instruction when normally by that time every day Sam's already had two bottles AND a large bowl of porridge, I am quite keen to get it over with if a TSC could possibly be the cause of his misery.
Sam has also begun seeing a speech therapist again as of last Wednesday, this time for actual communication and not feeding purposes although the fact that swallowing is still not a reflex that comes naturally to him is still quite bewildering sometimes. Sam has showed some encouraging signs in that he recognises several words like "kitty, Max, fan (he still LOVES ceiling fans), Bot" (the robot which has been passed down from Luke to Meg and now Sam) and even differentiates between "baba" and "babies" - we have a collage of photo's on one wall with pictures of Meg and Luke as babies which we refer to as "the babies" and then on another wall a single pic of Meg as a baby which we refer to as "baba Meghan" and whichever one you say to him, he points with that gorgeous little finger to the correct one. BTW, there used to be a "baba Luke" as well until, with Brampa's help, baba Sam yanked it off the wall leaving it smashed into pieces on the floor! Also the fact that he points that little finger as a means of communicating what he wants or where he wants to go is also quite a big positive. So we were scheduled for another session this coming Wednesday, but obviously the MRI takes preference so will have to postpone till next week sometime.
The only thing that remains a no-fail remedy for getting Smurf's spirits up is being outside...he absolutely ADORES it, light-sensitivity and all. The second you start making the slightest move towards any door which leads outside, he becomes almost hysterical with excitement. We tentatively planned to take the kids out for the day on Sunday as, according to the always-accurate weather predictions, we were to have a fairly lovely weekend. For some reason I suggested to Chris on the spur of the moment that we do it on Saturday instead, which turned out to be an unanticipated "save" as Sunday's weather turned out thoroughly miserable with rain, gusty winds and the works. We decided to take the girls to Bugzworld which is fairly close to home as this was going to be Sam's very first proper outing to somewhere other than a doctor's room or therapy session of some sort or increasingly-occasional shop and we were quite nervous of the potentially disastrous turn the outing could take. However, we needn't have worried for even a milli-second as Sammy enjoyed every minute of the afternoon and was quite content to be walked around on my arm just taking in all the different sounds and scenes, as there wasn't really many activities for him, and even managed to fall asleep mid-swing on my lap for a fairly decent (for Sam) twenty-minute nap. It was literally only as we were walking towards the gate to leave that he started whinging a bit, so well done Sam for making it such a pleasant afternoon!
These last two pics were actually taken a few weeks ago already of Sam enjoying his very first ice-cream....or rather, enjoying MY ice-cream (chocolate of course). The oddest thing about him having the ice-cream, other than the incredibly cute choco-mouth it gave Sam, was that after each and every mouthful he neatly closed his little mouth and swallowed whereas when eating normal food he can sit there for a full 60 seconds with the food literally falling out the mouth while I try frantically to stimulate his chin to get him to close his mouth and swallow.
Love the pictures.....he sure loves the outdoors Little Smurf...and how about peter pointer....that is great news that he can at least show you what he wants. If only he could let you know whats bothering him this is the hardest part, the not knowing its very frustrating. The girls seem to have had a good time too. Lovely family day outdoors....
ReplyDeleteOne of my biggest fears with Alex is something being wrong and him not being able to tell us. Last June he had strep, no fever, was eating, no rash, just an occasional throw up, which wasnt comletely abnormal. I finally took him to the doctor because I could tell something was just off, and he had strep, and probably had it for almost a week. Poor guy. I HATE that they cant tell us when something is wrong. It is frightening to say the least. THinking of you and your smurf!
ReplyDeleteSounds like he's telling you to use ice cream more for therapy!
ReplyDeleteHave his eyes been checked for high pressure (glaucoma)? I didn't realize, but that can cause a headache...Jessica Armstrong mentioned it, because both Rachel and Natalie are being followed for high pressure in their eyes. I'm so sorry you don't have an idea...the other thing I would rule out would be an ear infection.
Yes...more sweets! We are so not the sweet kind of family for our young ones, but we were told to use suckers and small amounts of sugary things to help with feeding. It has something to do with where the taste buds are which causes them to close their mouths.
ReplyDeleteAlso, have you had an upper GI to see if his intestines could possibly be malrotated? This can cause severe pain from time to time (especially when food tries to move through) and would need correction if it was malrotated. I know several little RTS sweeties lately that have had this (including Nathan).
My best to you as you keep traveling this journey of unknowns.
I adore your little smurf's smile...it makes me smile EVERY time!