Grumpy with a capital GRUMP? Grumpier Smurf? No, just doesn't sound right. Well, whatever the next "upsize" is to Grumpy Smurf - that's what Sam is! I guess, in his defense, the fact that he has another hectic viral infection means we can't really lay ALL the blame on him....JUST KIDDING! Of course we don't blame him. The poor little guy....what with throwing up all over the place (and I literally mean ALL OVER the place), tummy cramps caused by his runny tummy, fever, coughing and a rash for good measure, he hasn't had to put much effort into living up to his nickname. Actually, to be fair, even though he's been ill again he still finds time to smile and laugh and....SING! Yes, sing! Well at least that's what it sounds like he's trying to do...not 100% sure to be honest, but it's not baby babble and it's not crying or moaning.....it really kinda sounds like he's trying to sing.
I have to say that, when he's a little more healthy, he actually isn't nearly as grumpy as what he used to be. He definitely laughs and smiles more and his laughing and smiling doesn't need nearly as much instigating as it used to. In actual fact, there's a fair list of things he finds quite amusing like Dad's "bird" impressions, Meghan dancing around like a cheerleader on a HUGE sugar-high (baby rattles in hand for pom-poms), wind chimes (all rearranged for Sam's convenience and easy reach), our nightly bath-time routine which starts off with Sam's exposed bums being chased by Dad, Luke's dancing robot commonly known as "Bot" (a must have for effortless entertainment), calling the cats or Max the chow, whistling, singing "The Wheels of the Bus" (which gets sung at EVERY feeding time in order to distract Sam enough for him not to realise I am shovelling food in his mouth), heaps and heaps of hand-clapping....or even just giving him a smile is instantly rewarded with his toothless, own precious smile. So, as time goes slowly by, Grumpy Smurf's personality seems to transforming into a rather charming, entertaining and giggle-loving little boy who you can actually interact with now and really PLAY with...which is so very VERY awesome!
AND....he loves to jump....REALLY! No, he cannot sit yet and is nowhere near to crawling but stand him up on those two little legs and of he goes. Now of course, it's his own unique version of jumping, which in this case means he spends at least a minute trying to remember what he has to do to initiate this whole process....so first the one little leg will shake and buckle a little and then he stops and thinks "No, that's not it"...then the other little leg goes through the same Elvis-type process....then all of a sudden his bum shoots out backwards and he stops again and thinks "No, that's not it either" and then all of a sudden those two little legs disappear under him as he pulls them both up (which is his version of course) and his face is instantly filled with excitement as (while you are trying to keep him from landing flat on his face at he's weight-bearing suddenly disappearing) he realises....YAHOO...I REMEMBERED!!! You gotta love him!
We have also over the past couple of weeks found that Sam is starting to outgrow his clothes at a hectic pace, in actual fact, in the space of about one week I had to pack away at least six or seven items of clothing which no longer fit him. So, what is Sammy's new size? 3 - 6 MONTHS! He has finally outgrown 0 - 3 months which, considering he's 11 months on 15 April, is looooooong overdue. And of course Meghan is ecstatic because her Baby Born doll has loads of new clothes.
So, it's a little frustrating that Sammy's ill again....we thought we were having a good run with no really serious health-issues since he's being hospitalised in December. In fact, just over a week ago we had all his usual follow-up appointments with the ENT, Orthopaed, Opthalmologist, etc and it was all looking great and then exactly a week later (and also a week after his most recent vaccinations) he started off with a fever and then within hours the vomiting, runny tummy, etc started.
Well, at least we had those two and a bit months of smooth-sailing, which is something to really be thankful for :-)
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)
Tuesday, March 30, 2010
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wow, sounds like he is really becoming his own little person. thats great! the jumping you have to post a video i would love to see him! =) i hope he gets to feeling better soon!
ReplyDeleteI'm so glad he's showing you his great personality...going through the hard times of sickness makes it easier when we can look back on (and look forward to!) seeing their great smiles. You might have to come up with a new nickname for him...how about Jokey Smurf since he has such a happy disposition?
ReplyDeleteEXCELLENT - JOKEY SMURF IT IS!
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