And so the "dummy hunt" was stopped dead in its tracks, much to my dismay. After another screaming consultation with our paed on Thursday (guess those first nine weeks in NICU has put Sam just a little "off" doctors....and physiotherapists...and speech therapists.....and orthopaeds....I don't know, I seem to be sensing a pattern here :-)) Anyway, our little (and I mean LITTLE as in L-I-T-T-L-E...Sam has picked up a total of ZERO GRAMS in the last eight days making him a total of (still) 3.3 kgs for his almost five months) has another ear infection, so it seems as if his immune system is just so very weak at the moment, hence the recurring thrush so the fewer "foreign" objects we stick in Sam's mouth, the better chance we have of trying to keep him germ-free. Guess I will just have to find another way to calm him down when the hysteria hits. Something oh so cute though is that Sammy has discovered his hands. Whenever I put him on the change mat for a nappy change he spends endless minutes studying them and slowly moves them closer and closer to his face, to the point where he goes completely squint. If that little thumb was not so incredibly angled, I am pretty sure it would have landed up in his mouth already. It's quite funny how, regardless of all the lovely stuffed animals and rattley toys we've bought him, the objects which arouse the most amount of fascination and "communication" from him are...the ceiling fan, the headboard, the ceiling...I know - his standards aren't terribly high for potential friends at the moment, poor kid...and now recently, his hands. This afternoon he was lying on his back, on Chris' chest...and every now and again one of his new-found friends would pop into sight..and he would smile every so sweetly (and of course go squint) at those little hands, as if to say "Oh, how wonderful to see that there's more of these friends in the lounge, as well as the bedroom!
Anyway, our evening out at the Spur on Wednesday evening went much better than I expected..Sammy basically slept through the entire evening. By the time he woke up we were already paying the bill and getting ready to leave. And of course, as usual, he caused a stir amongst the watrons with his charm and good looks...although I must admit, I think his main attraction is that unbelievable head of hair. Did I mention we've already had to give him a hair cut!!! And, horror of horrors, he is getting balder and balder by the day - but only mainly on the left side. He is sure to lose at least 5cm off his height should his little "Tintin-style kuifie" go. On Friday morning we went to visit one of Sammy's new friends, Amy Reece (LOL Siobhan)and this outing also didn't go too bad, it seems as if Sammy is slowly but surely getting more used to being out and about - although fear of those screaming hysterics is still making me a little weary. Maybe once he's completely healthy (if ever) I will feel less anxious every time we need to go somewhere.
Right now though, Sam is actually pretty sick - he is not drinking at all and the antibiotic has upset his tummy terribly, so he has the runs on top of everything else....which is going to do wonders for his weight. Not even sure we should attempt physio tomorrow. Will see how the rest of the day pans out.
Sharing the journey of Sam the Conqueror, a medically-complex, differently-abled warrior whose precious spirit refuses to surrender to the limits imposed on him by his multiple diagnoses : Rubinstein-Taybi Syndrome, Cerebral Palsy (Periventricular Leukomalacia and Static Leukoencephalopathy) and Epilepsy.
Sam. Conqueror. Overcomer.
"IN ALL THINGS WE ARE MORE THAN CONQUERORS THROUGH HIM WHO LOVES US : Samuel was born on 15th May 2009, two months early and in respiratory distress. After an initial Apgar score of 1, he was taken to the NICU and placed on a ventilator, together with an undeterminable amount of tubes, IV’s and monitors which made it almost impossible to see the little Smurfie character lying within…slightly blue and only three apples high. Sam was diagnosed within 24 hours with Rubinstein-Taybi Syndrome, a scarce medical advantage as, due to the rare occurrence of the Syndrome and the limited medical literature on it, many individuals are only diagnosed well into adulthood and some never at all. The page-long list of medical/health issues related to the syndrome, while vital in providing a prognosis and compiling a care plan, took a backseat, however, as Sam’s struggle to breathe and swallow became the primary focus of our concerns and prayers, deepened only by the heartache of not being allowed to hold and comfort him for the first ten days of his already traumatic life. After seven weeks Sam was successfully weaned from the oxygen but was still dependent on a nasal gastric tube for feeding, with which he was eventually discharged.
Once home, what should have been a precious time to recover from the stress of the NICU and enjoy a relaxed and cherished time together, instead became a seemingly-endless timeline of specialist appointments, therapies, illnesses and surgeries as that page-long list of medical complexities came into play, affecting every part of Sam…physically, neurologically, medically and emotionally. Yet, despite these challenges and an “ineducable” future being predicted when his prognosis was delivered, Sam showed a delightful potential and eagerness for learning. Unfortunately though, this learning potential seemed limited to his cognitive abilities as, physically, Sam’s development lagged significantly behind that of his RTS peers. A week before his 5th birthday a brain MRI confirmed that, in addition to the RTS, Sam also has Periventricular Leukomalacia and Static Leukoencephalopathy (included under the umbrella diagnosis of Cerebral Palsy), which would more than likely have occurred as a result of the oxygen deprivation experienced leading up to and/or during his birth.
Thirteen years later and with a number of surgeries and medical procedures which appear to be in fierce competition for their own “page-long list” (which surgeries and their subsequent recoveries have left Sam to face his day-to-day life with a residue of unshakeable anxieties and phobias), the boy you meet face-to-face…with his cheeky sense of humour, unfathomable joy and fierce warrior spirit…make it almost impossible to believe that that disheartening brain MRI and poor medical prognosis are of the same kid. As we begin to navigate this journey with a newly aged differently-abled teenager, leaving behind the little smurf whose fears and discomforts could so easily be remedied with a cuddle on mom’s lap, the anxiety of more surgeries and medical challenges now compounded by the universal fear of every differently-abled child’s parent/s (who will take care of their child once their own time here is gone) threatens to become overwhelming. But then the excitement of a horseriding lesson, the sheer delight of spotting a balloon (especially a hot air balloon) or a super silly giggle caused by simply hearing someone sneeze provides a beautiful reminder of the profound joy and courage these children radiate, despite their overwhelming challenges, and it provides the perfect encouragement and inspiration for facing your own. #samtheconqueror
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)
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)
Sorry you had to stop working on a dummy...it sounds familiar...work on something for a while, then something more important comes up, so leave it alone, then try to pick up again where you left off. I think he'll find his thumb pretty soon, if he likes looking at his hands!
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