Sam. Conqueror. Overcomer.

On the 15th May 2009, Samuel Christian made his way into this world...two month's premature and in severe respiratory distress. Within hours, Sam was diagnosed with Rubinstein-Taybi Syndrome - a very rare congenital disorder, of which little was known. The diagnosis together with the immediate challenges Sam faced to thrive became our core focus and it was with joy and thankfulness that we eventually brought Sam home, after nine weeks in the NICU.

As time pressed on, it became obvious that Sam's development was falling behind that of his RTS peers. Shortly before his 5th birthday Sam underwent a brain scan and it was confirmed by a paediatric neurologist that in addition to Rubinstein-Taybi Syndrome, Sam also has Cerebral Palsy related to his premature birth, as well as Autism.

This blog chronicles our journey through these challenges...
SAMUEL - COMPLETE IN GOD
Our world has crashed, been blown apart.
This can't be happening....why us? Why now?
Your fragile life shaken before it could barely start,
How do we get through this...please, Lord, tell us how?

Drowning in our sorrow, waiting for answers that just don't come.
Our baby "special needs"? It simply can't be true!
The heartache overwhelms us, we're left feeling cold and numb.
The diagnosis tells us little - these children are so few.

But then we finallyget to touch you, to see your precious face
And all the heartache and questions fade, replaced with love and pride.
It's obvious from the very start you're showered in God's grace,
And with His love and guidance, we'll take this challenge in stride.

When once we couldn't pronounce it, Rubinstein-Taybi's become our norm.
When once the future seemed dark, we now welcome the journey as having an RTS angel brings lessons in unexpected form.

Our world has crashed, been blown apart!
This IS happening....to us.....right now!
We've been blessed with a gift, so precious from the very start. How do we get through this? Here's how.....
By believing in a God, so merciful and great,
By trusting that He's right beside us as we journey through the narrow gate.
By believing His love for us is not determined by a human frame,
By trusting that we draw Him near by merely calling His name. This precious baby we asked God for,
Prayed he'd be perfect and complete.
And, as Samuel means "God hears", He's laid His answer at our feet.

(Nicky de Beer : 27/05/2010)

Tuesday, October 18, 2011

The Overflow of the Heart.....

"For out of the overflow of the heart the mouth speaks."  (Matt 12:34)

So, if our heart is troubled then so are our words. This is why I often choose not to blog during particularly trying times but to rather be still for a while until, almost always, someone (usually uknowingly) puts everything into perspective again. Oh for sure when the problems are as annoying, but still relatively superficial, as self-righteous remarks made in a doctor's room or a derogatory comment made by a small boy lacking guidance and a good set of values, I cannot wait to pounce on the keyboard and vent my anger. But when, instead of anger, you are dealing with fear and downheartedness - emotions which are far more difficult to overcome - sometimes it takes a little longer to work through. Just as importantly, I don't want Sam's blog to become one neverending mash of melancholy filled with doom and gloom posts about how awful it can be to have a child with special needs.

If I had given daily reports about Sam's wellbeing over the past week, it would have been nothing as spectacular as near-death experiences or fatal diagnosis' or anything nearly as soap-opera-like as that. It would have been seemingly insignificant issues like the fact that when fetching Meghan from school one day, as one of her friends walked up to greet Sam with a lovely smile, she received a blow to the face in return. Or that one afternoon, while trying to collect Sam's medication from the chemist, he threw such violent, screaming tantrums that, with trying to co-ordinate holding on to my wallet, holding the meds and signing the cash slip, he almost threw himself completely out of my arms and onto the floor, amidst a good few "shames" from other customers and one smug dad who looked at me and then pointedly looked at his daughter of roughly the same age, who was sitting angel-like in the trolley, and gave her a kiss on the forehead as if to say "See, this is how it should be...". There would be mention of a generally aggressive, exceptionally frustrated and obviously unhappy little boy who has smiled seldom over the last few days while now making a habit of rocking on all fours while hitting his forehead into the head of his cot, the cupboard doors or even the safety gate.

Now I am so not the kind of person that likes surprises or guessing games and my close family will readily vouch for that after the number of times I ask them to tell me the endings of movies or the perhaps unanticipated reaction Chris gets when he tells me to just get in the car and when I ask where we're going, he says "You'll see..." or something to that effect. I don't do surprises...more importantly, I don't do the unknown. Not because I am that boring - although I do so *LOVE* boring and predictable...but because I want to always be absolutely 100% prepared. I want to be prepared for a bad/sad ending in a movie - I will still watch it, I just want to prepare myself. I want to be prepared for a "surprise" journey, so that I know what to take with, what to wear, the length of the journey, etc. And, perhaps the most important and most delicate matter in our lives at the moment, I want to be completely, utterly and unquestionably prepared for Sam...and I am not. Because I don't know how to ease his discomfort or pain, I don't know how to remedy his frustration at not being able to communicate and I don't know how to take away his sensory issues.

I am quite sure that one, or all, of these three things are responsible for where Sam is at the moment. I say that he has pain/discomfort because when I lie next to him at night while he tosses and literally thrashes himself around in the bed NON-STOP, he often takes my hand and presses it to his groin in the area where his two large cuts are from the last operation. I test his urine regularly, so I know for sure its not a bladder infection. I say frustration at not being able to communicate because when before he would make gentle gestures with his hand about something he wanted or somewhere he wanted to go, he now thrashes his little arm out angrily and grunts and moans or, if you are standing up or your back is to him, he will crawl up behind you and hit you...powerfully and aggressively. And I say sensory issues because of the constantly banging his head up against things and the fact that (with the exception of some progress in his hand defensiveness) there has been absolutely no improvement with regards to being able to sit him down on the floor without him getting scared, moving him around in the car, lying him back in the bath to wash his hair, etc.

Nothing has changed, while I sit and type this post, except the fact that I read two separate updates yesterday from other RTS moms about about how good life is for them right now (can't even remember if it was on FB or their actual blogs - have to resort to skimming for now)...the word "perfect" might even have been used. Both of these moms have four-year old little boys with RTS and while it was by no means a mind-blowing jolt into the reassuring realm of perspective, it did put my mind a little at ease that there will come a time, the Lord willing, when I can also make a similar statement.

For now, we keep going because we have to...although fantasising about a little village/town where EVERYONE living there either has their own special needs angel or is close family to or valuable source of support to a family with a special needs child, sure helps sometimes...a village where unacceptance, scorn, misconceptions, judgement and self-righteous are a forbidden law. A little village complete with a hospital and intervention centre filled to the brim with caring, compassionate and inspirations specialists, school and daycare centre, shopping centre, theme park, recreation centre complete with an undercover, sensory-pleasing swimming pool, SN-friendly churches and restaurants...I could go on and on... "Oh Happy Days...Oh Happy Days"

Random pics :

Meg had her athletics day on Friday. I had originally planned on taking Sam with me, but due to his rather unsocial behaviour lately decided not to - thank goodness! The activities were eventually rained out due to rather miserable weather. Sam would have loved seeing the 'Linka Smurfs though. Luckily over the past couple of weeks Meghan has done several (a day) renditions of each and every cheerleading song they were going to be signing so we, Sam included, possibly know the actions better than what the smurfs did.


Meg, Kaylee and Jenna moments before they sprung away with their high jump (pardon the pun).


A pic I posted on FB on Sunday of Sam reading to his teddies!


Sam trying to show of his iPadding abilities...I left him (albeit surrounded with cushions and plonkey's as one would a 5 month old baby) with Old Macdonal E-I-E-I-Oing on his iPad and next thing he'd found his way to the photo's I'd used for the iComm app...

 
Something really positive that happened this morning. While feeding Sam, who was holding his favourite number 5, he slowly and deliberately placed 5 into his bowl of Kreemy Meal. Ordinarily this would not be reason for excitement, unless you are dealing with a little boy who is extremely sensory defensive in his hands. He then took 5 back out again, messed with his other hand in the little bit of porridge that had landed on his tray and continued to hold 5, although rather gingerly between two fingers, while he carried on playing!


Definite progress!


 

Monday, October 10, 2011

Bye Bye Charity Bond...Bye Bye Now

Okay, so let's start off with the bad news (not that there's any particularly good news to compensate, but maybe I'll think of something before the end of the post) - we have had to give up our hope of organising a charity bond for RTS to ride in the March 2012 Cape Argus Cycle Tour as we needed a minimum of ten riders to participate. Apart from our original aim, which was to raise awareness of RTS, I was hoping to use any monies which may have been  donated to put towards trying to organise our own little RTS South Africa conference some time next year. So, I am a little disappointed but also conscious of the fact that perhaps I should have tried to get the group together a little sooner. Chris and I will still ride, in whatever get-up we agree on by then (we are both leaning towards a Smurf theme) and will then look to perhaps a more successful attempt for the 2013 Argus...now if that isn't enough notice, then I just don't know :)

On Saturday we got to share in the birthday celebrations for both Sam's RTS brother Matt's birthday and Matt's equally adorable baby brother, Nic. It was great catching up with our little RTS family and seeing in person how much all the little kiddies have grown and progressed. I hope we get to do it again soon. Here are a few pics from the party, but there's a couple more on my FB page :

 
Sam and his RTS sister, Peyton, with their beautiful big sisters


Loved this one of the three RTS sweeties...Sam looking at Matt look at Peyton


Peyton with her Dad


and Sam with his Dad


The two girls, Tayla and Meg, just chilling. These two have become such good friends in such a short period of time which I think is a real blessing waiting to happen for a time when either or both of them might need someone (other than a parent) to talk to, who can truly relate to their circumstances.
(and please do note those gorgeously huge and lovely strawberries which were offered in super generous portions at the party...I can still taste them now...Delish!)

Yesterday was a bit of a frustrating day...firstly went off to church with Sam, who was particularly fussy and disruptive, so I had to leave the main church even before the worshipping was finished. Off to the baby room which has now been equiped with a tv, so not a bad alternative except that both the little boy and other mom already there were both coughing and sniffing something silly...so tried to hang around outside with the sunday school kids who were painting various items to place in the church garden, like rocks and little boards (BTW awesome idea, whoever's it was) but Sam threw a tantrum when I wouldn't let him open and close the entrance door. So back inside to the foyer of the church and kitchen area which, of course, has loads more doors worthy of tantrum-throwing requests. Then, to top it off, Sam decided to make a poo which is always such an awesome experience because, due to his aggressive sensory defensiveness at the moment, I cannot get him into the "lying down" position without him squealing hysrerically. So, Plan B? Have you ever tried to change the dirty nappy of a not-yet-walking two year old, with them in a standing position? No? You gotta try it...it's very entertaining.

Later yesterday afternoon went off to my cellphone service provider to renew my two-year contract, just like I did two years before now. But they would not allow me to renew because I cannot provide them with employment details!! Mmmmm....now why would I not be able to provide them with employment details...let me think....Oh Yes, it's because I am unempoyed...just like I have been for the last three years...which means, and I'll go slowly here for you, unnamed service provider (but whose name starts with a "c" and ends in a "c")so that you don't get lost...that I was unemployed the last time I renewed my contract as well. Which contract, I have to point out, has not once over the last eight or ten years ever been paid a single day late! Just had to get that out there.....Uuurrrggghhhh!

In closing, a short video of what a little smurf has to do when he has outgrown the weight limit on his mechanical swing...why, he swings himself of course :)

Oh, P.S., thought of some good news...this morning I washed my face with TRESemme Shampoo with a lower sulfate cleansing alternative and with added Aloe Vera and Avocado...which means my face will be protected against damage and breakage the whole day! How awesome is that?

*Oh Happy Days.....*


Friday, October 7, 2011

Torture...pure T.O.R.T.U.R.E.

These are the words that have, very melodramatically, been delivered to me several times over the past few days by my Glee-loving, feigning dizziness, ever-putting-on-a-show daughter. On Wednesday, when we saw the hand OT at Vincent Pallotti, we could not find parking close to the hand clinic so had to park in the hospital's general parking area about 300 metres away from the entrance. I know what you're thinking...she's young, energetic and fit...or so you'd think, AND didn't have a squirmey-wormey smurf on the arm. But alas, when we left the clinic just before noon, it was quite a show she put on complete with moments of nearly collapsing to the ground with the "torture...pure torture" of having to walk so far to the car!

Yesterday was even more of a Meg-atastrophe...not only could we not find parking in the general parking area, we had to park on an upper level parking area, which meant stairs. THE HORROR!!! So again, when we left, it was amidst regular outbursts of "torture...pure torture". She really is such a funny kid. Chris desperately wanted me to take a video of her "watching" Glee the other evening (she watches each episode an absolute minimum of at least four/five times...every....single...day!). Who woulda thought Glee was an interactive programme and required the watcher thereof to mimic every move made throughout the show. You would have thought she'd be able manage the occasional transition between hospital and car then, right? Anyway, Meg has been an invaluable help to me over the past week - it's thanks to her that Kim managed to refit Sam's splint on Wednesday, this time without hysterical screaming which meant a much more effective fit. And yesterday kept Sam occupied through pretty much our entire appointment with Dr dT, so that I could concentrate on what was being said. So I have just reserved tickets for her and and I to go watch the new Smurf 3-D movie this evening...it's a surprise, haven't told her yet.

Oh yes...our mysterious "orthopaed" appointment yesterday afternoon. I was watching an old Hillsong episode while doing my own "torture...pure torture" on the spinning bike last night. It was about negativity and how even a remotely negative outlook effects everything...our thoughts, our actions...our perceptions! Yesterday was a prime example. Here's what I was thinking : last week, when we saw Sam's hand surgeon, I had asked him about the lack of fluidity in Sam's hand movements (eg. when he waves, it is done in a series of jerks as opposed to a flowing movement) and he'd said that he thought it to be a neurological issue. I didn't prod any further because the whole appointment lasted about two hours and of course, by then, Sam was doing his own remarkably accurate impression of Grumpy Smurf. But by the time we arrived back at home the whole "neurological" thing had had plenty of time to mull around in my head and I regretted not asking for more information. Then on Friday morning, when Dr dT's assistant phoned and requested that I bring Sam in, my mind went wild and I figured that perhaps Dr C had also been giving more thought to the neurological thing and done some further investigating and come up with a gloomy diagnosis, but wanted Dr dT's opinion on it before one of them shared the bad news with me! Seriously, that is really what I was expecting. Boy, was I wrong!

The real motivation behind the request was that Dr dT had in fact been researching and considering and researching and considering...and wanted to explain to me, in person, with the aid of graphics and Sam's x-rays exactly what is going on in Sam's little left foot and what the plan is to rectify it (and, to top it off, there was no charge for the consultation). Slightly off the mark I was, I'd say. And, yes...here it comes...I am absolutely loving Sam's specialist's at the moment.

The only drawback (is there ever not one?) is that we might be doing the surgery on Sam's foot a little sooner than I originally anticipated, possibly by the age of 3/3½ which would mean May-December next year, but I was hoping to only do the removal of the right testicle around April (which would mean a eight month gap between this and the last op) but with Dr dT and Dr J (urologist) being at different hospitals we would not be able to couple the two surgeries together, so let's hope we are looking more around the 3½ yrs mark for the foot surgery. I am becoming increasinly anxious about the fact that that little right testicle is wafting around halfway to where it's supposed to be, mostly because of the reaction I get from others, mostly doctors actually, when I tell them. Perhaps we need to bump up that surgery to mid-March, depending on how much time I'll need to recover from the Argus. In fact, now that I think about it, with the Argus officially taking place on the 11th March, I might very well still be cycling it on the 15th (Yes, I do know you only have seven hours to finish)...mmmm, might need some further thought, the op that is....already have a headache just thinking about it all.

Our ST for this morning was cancelled due to an illness in ST's family, so we resume next Thursday. And of course we have little Matt & Nic's birthday parties tomorrow. Yay! for seeing our RTS family again. And, on Monday morning, it's back to PT...Yikes!

Remember this pic :
Sam in May 2010

And here's how much he's grown :

He can barely fit into the swing now and, seeing as he's become too heavy for it to mechanically swing him, he now swings himself. Did I mention that at our last paed appointment, Dr B pointed out that, taking Sam's corrected age into consideration, he is just just touching the very bottom line on a NORMAL...yes, I said it, NORMAL weight graph! 

Tuesday, October 4, 2011

Mom-losing-it...again.


I am feeling ever-so-slightly overwhelmed with all Sam's doctor and therapy appointments at the moment. Was sooooo looking forward to a "quiet" week what with the short school break but before we knew it, every day was filled with one or the other intervention by the end of last week already, with the exception of today when we got to enjoy a totally unmedically-related breakfast with Aunty M and the boys! (Dankie julle xxx). We did also manage to slip away to Stilbaai for the weekend to celebrate Ouma's birthday with her and, even though the trip started off a bit shakily when part of my tooth (for which I am currently undergoing root canal ) went M.I.A. after I bit into a cheese puff (yes...a cheese puff) only an hour into our journey. Still, the remainder of the weekend went well with Sam being not too whingey on the ride there and, other than one throw-up incident on Saturday night, us being able to enjoy some quality time with family.

Sam had his very first appointment and assessment with his new NDT speechie on Friday morning. We are going to be using the Prompt speech technique with Sam initially which, although it seems a little intrusive for Sam's liking at the moment, looks really promising. Sam's OT, Pippa, has offered to do a short 15min session with Sam before his speech appointments to help desensitise him, which I am going to mention to his ST on Friday. Yes, I've said it a million times...and, please Lord, let me say it a million more....having therapists/doctors who go over and beyond their professional requirements is key to both your SN child's and your own confidence and wellbeing. Pippa and I were discussing the need for Sam to return to PT as well (which I've neglected recently because I felt his sensory defensiveness and desperate need for communication are currently far more pressing) as muscle tone, imbalance, etc can also play a part in speech difficulties. It was just one of "those" moments when all of a sudden, in a split second, everything just seemed too much. In my mind I had just seemed to get on top of Sam's schedule and needs. To top it off, bouncing around in the back of my mind constantly is the fact that Sam's orthopaed's (the "other" orthopaed - legs, hips, feet, neck, etc) assistant phoned on Thursday morning and asked me to please bring Sam in this coming Thursday. Normally we only see him every six months, with July having been our most recent appointment, and neither he nor many of Sam's other doctors very regularly phone US to schedule appointments. So when Pippa mentioned the PT, for a moment I felt a little fragile and, if the truth be known, there might have been an ever so-slight lip quiver and stray tear forcing its way out (much to Meghan's absolute horror). Once my flash of weakness and uncertainty had disappeared, we discussed the possibility of scheduling a team meeting with all of Sam's therapists and specialists, in order to make sure no areas are being overlapped nor, more importantly, neglected. I am not sure about the practicality of such a meeting with everyone's hectic schedules, but certainly do see a need for such a meeting so will mention the possibility to the parties concerned and see what the reactions are.

Tomorrow we are off to the hand OT to have a look at Sam's splint. The nighttime wearing of the splint has not been going well, with the one night Sam seemed to be tolerating it relatively comfortably being the night that he threw up in Stilbaai...and all over the splint. I am a little concerned that it is not a perfect fit as the little finger, being the most bent at this point, seems to evade the strapping completely.

On Thursday we have the requested appointment with Dr dT and then on Friday we are off, iPad in hand, to ST.

Alas, there is a light at the end of the tunnel...we have been invited to share in the celebrating of Matt and Nic Tooke's birthdays, this coming Saturday! It will be WONDERFUL to get to visit with our RTS family and catch-up in "real life" on all the events of the last few months.