Sam luvin' birthday parties!

It was Meghan's birthday on Tuesday and even though I vowed that birthday parties were a no-no after the tenth year, here I was planning a tenpin bowling session for nine kiddies. We had originally planned to go ice-skating, but one of Meg's friend, Erin, has been through quite a great amount of trauma over the past few weeks after a nasty ice-skating accident, which has left a finger on her right hand with a pin in it (identical to the pin Sam had in his thumbs after his corrective surgery) and securely splinted till after Easter. Truth be told, I cannot say that I was even remotely disappointed that we rather settled on tenpin bowling instead after a particularly exhausting ice-skating birthday party not too long ago (which could well have been the party after which I took the "no more birthday party" vow).

Had Sam not been ill, we had planned on taking him with to the party as he adores being around children but luckily enough for him, we made it home a good hour before all the children were to be collected...and boy did Sam have an absolute ball with such an awesome audience....

At first you can't spot the little smurf....

But there he is....instructing everyone in a game of "Copy Sam" which game is derived from a Teletubbies episode (can't believe I used to complain about Barney) where a little girl leads a group of kids in Copy Me! Sam LOVES this game and insists on all-round participation, regardless of where we might be....a doctor's room, hospital, therapy session...if he can see you, you better copy Sam :)

And, of course, there had to be some twisty-flappy movements involved.

Group photo - with the exception of the Birthday Girl who was outside delivering an extremely believable rendition of "It's my party and I'll cry if I want to!" This year was definitely D.E.F.I.N.I.T.E.L.Y the last birthday-party year!! 

I adore Meg's group of friends though - they all are really wonderful with Sam. When children reach the age of ten/eleven, that's quite often the age around which compassion, consideration and respect for others either flourishes or becomes obvious in its absence. Meg's friends will ask genuinely inquisitive questions about Sam's development (like why he doesn't walk, etc) but I have never heard any of them uttering an unkind word about Sam's behaviour, appearance, etc. or anything else. I had an unusually large audience when changing Sam's dirty nappy on Saturday afternoon and Sam was offered many words of sympathy when his "battle scars" were noticed.

I think it's really important for siblings of special needs kids to know that their brother/sister is accepted by their friends. It must surely play a huge role in their own acceptance of their sibling...I would be devastated if Meghan was faced with a situation where she was ashamed to bring friends home because of Sam, or afraid of what reaction her friends might have to him. I know its still very early days but, thankfully, so far so good!

 

A very rare, almost-complete (with the exception of Luke) family pic!

Desperate for Relief!

This last week started out a bit shaky as, as mentioned in a previous post (I think), Sam has been having very restless nights, waking up several times each night. I put it down to teething as he is, along with his four molars, now cutting an additional two teeth - his incissors. So there were moments of misery and irritability but nothing yet unbearable and we still enjoyed a visit with Aunty Cammy and Uncle Damien on Sunday afternoon, where Sam tried out some new fashion shades :

And then on Sunday evening Chris' excitement got the better of him as he had been ITCHING to give Meg her birthday present which we'd bought and hidden a week before that. So, a week in advance, Meg was presented with her new pressie and, also caught up in the excitement, she could not wait until the next day to try it out so braving the cool evening air and darkness in her summery pj's, she went for a test drive :

It has always been difficult to know when Sam is brewing a fever as his "normal" body core temp hovers around 37.4ºC (98.6ºF) but on Tuesday afternoon his temp had started hitting the 38's and by Tuesday evening was resting on a worrying 39.7ºC (103.4ºF). After a trip to the doc we found out that he has tonsilities and an upper respiratory tract infection, so our GP prescribed some antibiotics (Augmentyn ES-600). I gave Sam his first dose on  Tuesday evening and, with the help of some pain meds for his sore throat, he slept slightly restlessly but nothing more than usual. However by Wednesday morning things took a turn for the worst - Sam's temp stayed in the high 39's, even with the medication, and he also started vomitting up EVERYTHING I gave him whether it was milk or food or medicine, without fail everything passed his lips twice...once going in, once coming out, and then also developed a bad case of diarrohea. I have always thought that Sam's throwing up had reached the "ultimate" level of potential - I was wrong. By Wednesday evening he'd had practically nothing to eat or drink the whole day and just lay on my lap moaning or whimpering. I used a suppository in an attempt to get his temp down but the excessive diarrohea must have made his little behind fairly raw and he screamed in absolute pain for about twenty minutes afterwards, so even suppositories became a useless course of action. We noticed a faint red rash on his neck but as Sam has an extremely reactive skin were not sure if it was as a result of the fever or a mosquito bite or anything really. Eventually after several bouts of vomitting Sam "settled" down for the night. Thursday morning the rash was still there, but not quite as angry. I continued trying to get the antibiotics, prebiotics and pain meds in...and Sam continued with the throwing up and diarrohea. I changed the dosage method of the antibiotic as I know Augmentyn is known for wreaking havoc on little kiddies' systems, so split the daily dose into three portions instead of the originally prescribed two. Thankfully, after a near-visit to the ER on Thursday evening at 12:30am when Sam woke up screaming in pain which was then followed by more throwing up and more runs, Chris rushed off to our 24hr pharmacy who gave him some Cera-Lyte (a rice based replacement drink) which he drank without much fuss - I am certain that without the Cera-Lyte he would have landed up being admitted due to dehydration. I was desperate not to have Sam end up in hospital as it is Meg's birthday on Sunday and in lieu of celebration, she'd invited two of her "BFF's" (as she calls them) home from school on Friday afternoon, where the three of them were going to have a mini-party. Luckily Chris managed to get a day's leave to help me with Sam which also meant that Meg did not have to cancel her playdate.

Sam trying to charm his way into bunking with Meghan. Anything to avoid his own bedtime.



Friday morning started out with more bad news as, after just dropping Meghan off from school, I received a phone call from the neighbourhood police station of the college Luke attends, telling me that Luke had been robbed, allegedly at gunpoint, on his way to school. We rushed off to Luke's college, me dressed in whatever dregs of clothes I had left in my cupboard, which had not yet been vomit or poo soiled (Gross, I know, but our reality - I simply cannot keep up with the washing of the three/four outfits Sam and I each go through every single day, not to mention the number of towels we use each time in our feeble attempt to save what's left of our carpets). Having Chris with was an absolute blessing as I could "hide out" in the car while he went in to fetch Luke, who was badly shaken and very emotional, but luckily unharmed otherwise. Aside from the obvious trauma of the actual incident, along with it comes a problem I thought we had solved - a way of getting Luke to college in the morning. He is understandably too scared now to go by train. Anyway, I prepared myself for another day like the previous three which also included one vomit incident in the car while waiting for Meg on Tuesday and (horror of horrors) one diarrohea incident while waiting at the school on Thursday, both of which left me covered from neck to knee's in the respective offending fluid. To my surprise, Friday went by pretty uneventfully and by 6:30pm we'd been vomit/poo free! Sam was in his element with all the girls, he certainly does love female attention.

Kaylee, Meg & Jenna



Kaylee, Sam & Meg

Just when I started thinking "Phew! Finally things seem to be getting better." I was again proven wrong. I gave Sam his meds followed by a bottle, but the second he saw the bottle he started gagging - long before the bottle was anywhere near his mouth. And of course he threw up all the meds. Waited a bit, tried again...up came everything. And so it carried on until Sam was vomiting up bile as his stomach was so empty and he eventually cried himself to sleep. He just does not want to eat or drink anything and somehow intantly brings on gagging when he knows I am going to try and put something in his mouth. Even just putting him in his feeding chair causes taboo...

This morning Sam's rash was much worse so off we went to the doc again (after having to cancel a much needed hair appointment for myself). She has little doubt that Samuel is allergic to penicillen and the penicillen "family". He has previously had a reaction to Orelox as well (which is a cephalosporin) and a cross-reaction between that and the amoxicillen in Augmentyn usually indicates an allergy. So now, on top of everything else, behold "Spotty Smurf"...

The one good thing about the Augmentyn being such a potent antibiotic is that Sam's tonsillitis and URT has cleared up, so Dr dB advised us to stop the antibiotic straight away, to treat Sam with some Aterax for the rash and to continue doing what we can with regards to his feeding/drinking as she is satisfied that he is not dehydrated. Again, today seemed to go much better...but alas, come 6pm we had the same performance as last night...three bouts of throwing up and Sam eventually crying himself to sleep. It's like life keeps taunting us with the longed for promise of relief and improvement...and then, just as we start relaxing and breathing that huge sigh of relief.....WHAMMY! We're thrown back down.

I read an email on the RTS listserv a few days ago from one of our RTS mom's and in it she wrote "some days I just hate the word RTS" - couldn't have said it better myself!!

Meg's "Night" Marathon & Paper-Eating Smurf

The last few days have been pretty uneventful...same old, same old. Wed's physio did not go as great as last week, although Sam did not reach his, once usual, over-the-top hysteria he did moan and whinge through much of the session. Thursday was speech, which this time went much better than the previous session. Hey, it can't always be sunshine and roses!

Friday night brought with it the annual "Night Marathon" at Meg's school..."night" meaning from 4:00pm to 6:30pm for the Grades 1 - 5 and "marathon" meaning relay races of approx 200m a turn. Looking at it from a nine year old's point of view - "night" + "marathon" = super excitement. The past two years Meghan was pretty convinced she was going to participate and then both times pulled out at the last minute so when she said she was going to do it this year, I wasn't completely convinced so, although I tentatively considered what options I had with regards to managing Sam for those two and a half hours, I was pretty sure that closer the time I wouldn't need to worry at all. As luck would have it, come Friday morning and along with it a hectically windy day Meghan was determined to be there on Friday evening. Before knowing the weather was going to be so poorly, I had considered taking Sam with us even though I had no idea how I would manage the two bottles and supper he usually has during that time, none of which he will take cold or even room temperature. But with that kind of weather, taking him with was starting to look like not too great a plan which meant Chris would stay with Sam and I would go on my own (as usual). Also not a great plan because our little man IS so fussy about who feeds him.

A quick side-step : in many of the stories our RTS families share is the rather sad reality that, for whatever reason, a "special needs" diagnosis often brings with it the loss of some friends and, sometimes, even family. However, it also sometimes brings with it NEW friendships with deeper meaning and stronger bonds due to your changed circumstances and I truly believe that we have been blessed in this way, many times receiving offers of assistance and just general compassion and empathy from wonderful people we might otherwise never have gotten to know better.

One such person is the lovely mom of one of Meg's best friends (or "BFF's" as Meg puts it) who was really keen to help and so we arranged that Meg would go with Jen-Jen to the marathon and, after giving Sam something to eat and drink, I would follow a little later to at least catch some of the activities and bring Meg home. There was a Plan B though...Plan B was that Brampies was prepared to look after Sam for an hour so that Chris and I could go together to the marathon BUT only if Luke was going to be home to help out, if necessary, and that is eventually what happened. Brampies was SO worried about having to give Sam his supper though, although Luke felt pretty confident about doing it if need be, having plenty of Big Brother experience by now. So, after giving Sam a bottle, off Chris and I went...ALONE....to the school. It felt so completely strange, the last time the two of us were really alone together without our little smurf was when Sam was still in NICU. And we only returned home TWO HOURS later and what did we find? A perfectly content little Sam and a slightly stressed and exhaused Brampies from walking Sam's little 9+kg body around for two hours...hee hee! Sam only ate about half of his supper but we were home early enough for me to still give him a "top up" so all went extremely well. Which means that that much-spoken-about dinner for two Chris and I have been mulling over for the last two years might actually become a reality pretty soon and with Brampies now being a CSS (Certified Sammy Sitter, as dubbed by yet another one of those "lovely moms", Aunty Mandie) we might even be able to relax and take a little more than the forty-five minutes it took us to "down" our sushi the last time, having Sam with us.

So, in closing, some pics of Meg at the marathon and, of course, some random pics of our Smurf.

 Can you spot Meg? She's the "little" one in blue, almost a head smaller than her classmates (I am sure she's so chaffed to have her mom's genes). Here she's waiting for her turn to run, afer she spent the first hour and a half of the evening chatting and socialising.

 Waiting for the baton from her classmate.

 Getting ready to go.....

 Uuhhhhmmm....still getting ready.....

 Okay, S.T.I.L.L. getting ready...all she needs now is to actually move!

 And she's OFF! FINALLY!

Both Meg and friend, Anrich, were bitterly disappointed that they did not win the lucky draw at the end of their race (which they insisted we wait for before leaving). After all, buying one of the like four thousand tickets is practically a 99% guarantee that you WILL actually be getting the prize.

At the end of it, Meg had a great time and I am so glad we did not take Sam with us as by the time we got home my ears were ringing from being subjected to that chilly wind for so long.



 One of Sam's favourite snacks is a chocolate marshmallow egg which, amazingly enough, he very seldom gags on. We spent most of this morning in the shops looking for a new bike for Meg's birthday, coming up soon, so because he was so well-behaved and patient with us, I thought a choccie treat was well deserved by our smurf.

 The treat was over way too soon for our little man, so he thought flashing those gorgeous puppy-dog eyes at me might get him another one!

 And, when that didn't work, he thought he'd try some hand-clapping!

 "Oh come on, Mom! What else must a poor kid offer? A gorgeous smile?"

"Nope?"

 "Oh well, maybe if I shake it hard enough some more will fall out...."

"Desperate times....you know what they say! Surely the thing the choccie comes in must taste good too?"

And, talking about eating paper...on the way back from dropping Meg off at Jen's house yesterday afternoon our little smurf became awfully quiet in the back of the car, after first moaning like crazy at having his travel-entertainment (Meg) gone. When I looked behind, I saw him chewing furiously on something and then, horror of horrors, he started closing his eyes about to fall asleep, with his mouth all covered in something green. I looked in his hand and there was a half-eaten pamphlet that had been lying in the car. Panic set in as I realised that a fair amount of the paper was missing and, with Sam practically asleep, he was either going to swallow it and choke or gag and vomit. I first swerved to the left of the road but then realised there was no place to stop, so swerved to the right again to try and turn off and thankfully the traffic light turned red. I put my hazards on and practically jumped into the back seat and stuck my finger into a now sleeping Sam's mouth. And there, neatly compacted with an astronomical amount of gob, in that wonderful little "cave" that is the high palate of our RTS sweeties was about 90% of the missing portion of pamphlet. Where the other 10% got to, who knows!  I can only imagine that he must have swallowed it. But how my gag-loving, oral-aversion-prone Sam did not gag on the paper I do not know, as at least it would have warned me about what he was up to. Never a dull moment folks!

Hi-Ho...Hi-Ho...it's off to therapy we go,

With a tear and a scream and some vomit? No! No!
Hi-ho...Hi-ho...Hi-ho, Hi-ho!

Yes, I know we were meant to throw ourselves head first back into therapy last week but with my sore throat and Sam's daily throwing up, decided to leave it for another week. So, we did physio on Wednesday and speech on Thursday. Physio, although accompanied by the squeeling and crying that had become a thing of the past, thankfully brought with it no throwing up. Sam's reaction was a little unexpected as Heidi took it super easy on him with a half hour of mainly just gentle rotations and stretching and not more than five minutes tummy-work. Guess, as with everything else since the op, it'll just take some time for him to settle down again. Speech was no less stressful, as Sam's speechie worked in his mouth (which of course he does so love) trying to desensitise his gag reflex again. He did show off his new hand-clapping expertise to both Heidi and Madre and even added in an extra dose of cute in ST when he leaned forward and gave the little doll M sometimes uses a little kiss! The only thing he's ever kissed before is his books and only after we've told him to (not kiss the book itself but, say, the kitty in the book). Sam's gagging is going to take a bit of work still, although the sides and front of his mouth are fairly okay, the second you cross the midline on his tongue he gags (which does kinda make sense). As for the sensitivity to temperatures (we have to repeatedly heat his bottles and food as the second it starts cooling, he gags) M hasn't really seen this before...but that's our Sam in a nutshell, isn't it? All things unfamiliar and unusual. We have a rather busy week or two coming up with appt's with Prof F, Dr C (orthopaed - hands) and Dr D (orthopaed for everything else) as well as Sam's therapies.

So what else has Sam been getting up to? As I've mentioned before, Sam loves playing on the keyboard although he was recently "banned" in an effort to avoid either him or the keyboard, or both, being hurt. He seems to somehow have understood because I let him play again this week and he was so gentle, whereas he would usually just bash the keys with either his hands or feet, he now plays with one tiny finger most of the time and has fairly mastered the Jerry-Lewis-style of running his finger along the keys. He now also claps for himself every time I say "Clever Boy!"...that's probably the cutest accomplishment of the week, nothing like a little self-praise. Or, self-rebuke for that matter : there's been some talk on the RTS listserv the last week regarding hair-pulling and throwing things, etc. Now, Sam has already started dabbling in both of these activities, especially the hair pulling (which has now claimed TWO unsuspecting strangers - one at the store and one at church, of all places) but also throwing things. I usually put him in his feeding chair while I prepare his cereal, etc and place a couple of toys on the tray to keep him occupied, but all he does is repeatedly throw everything off. The second you pick it up, the second he throws it down again. So, with the listserv talk in mind, every time he throws something off I lightly shake my head and say and sign "No". Now, over the past couple of days Sam picks the toy up, looks at us...first shakes his head...and then throws it off anyway!! So either he's confused and thinks shaking your head is the sign for "please throw it off Sam" or he's just been super cheeky. LOL! At this point, I think it's still very much a game for him as opposed to disobedience and how can you do anything else but laugh?

I've finally resigned myself to the lost cause that is trying to mix Pediasure with Nestargel. For now we do thickened S26 before sleeping and potential throw-up triggers (like car trips, etc) and then just plain old Pediausre the rest of the time and its working okay for now. Also, with the heat, it does help that Sam is having something other than that awful thickened mixture as he still refuses juice and water. I am not sure what he now weighs, he was 9kg on the dot week before last (it's almost hard to believe - seemed like such an impossible target) so hopefully he's picked up another 100gr or so, at least. The Cipla-Actin has definitely increased his appetite, as prescribed by Dr S, and it's wonderful not having to fight with him to eat or drink. We are still doing Hypafix on the cut, for at least another two or three months which works out great, although it's a bit of a mission or remove, the wound is obviously still extremely itchy so it provides some protection from tiny little fingers.

Meg is now settling down nicely into Grade 4 and Luke has written two tests so far, Maths of all things (his real achilles heel) and obtained 85% for the first one and 90% for the second...woohooo! I have been desperately searching for something to do from home which might bring in an additional income into the household, but am really battling to find anything which might work for us. I found numerous adds on a career site stating specifically "Home typist/Data Entry Specialist" and I thought Yay! That sounds perfect as it's something I can do after Sam goes to sleep at night. Sent in several enquiries and almost signed up for the one until the lady responsible was kind enough to be completely honest with me and advised that there's actually very little genuine typing work involved, you basically earn your money by trying to get others to sign up as well. So, still trying to come up with something....have considered 100% personalised printed mugs and plates, etc. (ie, you tell me a bit about the person and I will come up with a completely unique poem for the item) or even thought of special needs "Baby on Board" signs/stickers. Is there even anything like that in SA? If there was, I would certainly buy one. So...any suggestions folks?

Still settling in to 2011....

It is so hard to believe that we are already through the first month of 2011...the days are literally just whizzing by, perhaps because we are still trying to find our feet in our new routine. With Luke taking classes a fair distance from where we stay, Sam and I are spending on average about 2.5 hours a day in the car and that's on the "good" days, which are days without doctor's appointments, etc. From tomorrow morning though Luke is going to be braving the South African Transport System (Yikes!) and attempt travelling in by train. Our suburb is unfortunately not very central so there is only one train he can catch and one bus. He would need to be at the bus depot at 6:05am though, so we have opted to try the train first. He has never been on a train before and I can see he is really nervous about a) getting off at the wrong station and b) not being able to find his way to the college as he doesn't know the area very well. I am just holding thumbs that it all works out great as it would be a HUGE relief if all we had to worry about was fetching him in the afternoons. Brampies has been an incredible help (as always) and is eager to take or fetch Luke whenever he can...we are truly thankful to have the luxury of always being able to rely on him for help no matter what the inconvenience to himself. My three hooligans are blessed to have such a wonderful Grampa.

Speaking of doctor's appointments, we have as yet been unable to secure an appointment with Prof F but did manage an appointment with Dr S who was the paediatrician who oversaw Sam's care after the operation. He had a look at Sam's reflexes, which he said look great, as well as the scar and suggested we place Hypafix strips over the cut for a minimum of three months in order to aid the healing process, which we've done. He was quite amazed at the amount of aggressive teething going on in Sam's mouth, thanks to three of Sam's molar's battling to come out (one from more than three months ago). He suggested putting Sam on Vit D drops to help the body better absorb calcium and suggested I put him back on something for pain for a little while longer, at least in the evenings. Dr S also gave us the go ahead to dive back into therapy so that's what our little smurf has in store for him this week.

Sam's weight has unfortunately taken a bit of a dive as he has not been eating or drinking like he used to, so we have switched his formula to PediaSure, which conveniently comes in Vanilla and...Sam's fav....CHOCOLATE! So hopefully he'll manage to find some of that weight that's gone missing.

Perhaps the highlight over the past couple of days is that Sam has been sitting much better than he has for quite a while since the surgery, but more importantly, has been using that right leg more and more each day. In fact, we have spent a great deal of time over the past two days on one of Sam's favourite activities...walking! How wonderful is that? He still has some shaky moments...literally and figuratively when he either suddenly gets scared and almost clambers up to my arms himself or when he somehow loses his "swagger" and suddenly becomes completely unco-ordinated. Still, it is a huge improvement and very promising that there are definite signs of healing.

Below are some pics of his budding soccer-star potential as he demonstrates his great footwork....(note poor "Bot" lying utterly defeated, facedown on the ground after been wrestled into that position by our Conqeuror!)

On Thursday afternoon we had the wonderful opportunity to be completed sandwiched between two veld fires, on either side of our house and close to our neighbourhood - or so we thought due to the severity of the smoke, but with the gusty winds that were blowing the fire could really have been a fair distance away. Regardless, our house was covered in suffocating amounts of smoke with pieces of ash raining down in the garden. Needless to say, we all woke up on Friday with sore throats and irritated sinuses and smelling as if we'd just been to a braai/barbeque...as the meal!

This is the normal view from our front door....

This is what it looked like on Thursday...

Just before all the smoke rolled in, Meghan noticed our neighbour wheeling a large tree stump into his garden - that's all the inspiration she needed to fashion a wild theory about where the smoke was really coming from and so spent most of the afternoon with her eyes glued to our neighbour's house expecting to see flames out of their front door at any given second.