SAM...MORE THAN A CONQUEROR: Busy Smurf

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)

Friday, April 6, 2012

Busy Smurf

Little Conqueror Smurf has been somewhat busy during the past week. On Saturday morning, now that Sam's health has been playing along, we paid a long-awaited visit to Haven of Hope Equine Aid Centre. We carried with us juice bottles, sunblock, Sam's iPad (of course - we seldom go anywhere without it nowadays) and the very realistic expectation that Samuel might only last a half hour on the farm before becoming niggley, forcing us to come home. The first hour was spent re-introducing Sam to the farm and especially Strawberry, the little pony we hoped Sam would brave a ride on :

But while Sam did manage a very strained, anxious attempt at sitting on Strawberry he did not seem at all comfortable and quickly wanted to get off again. He even refused to pet her, despite lots of encouragement. We kind of resigned ourselves to the fact that the only ones benefitting from any riding that morning would be Meghan and Chrisna and Sam and I settled under the gazebo with the iPad to pass the time away.

After a little while I went over to say hello to "the Prince"Jabu and quite spontaneously and without any prompting Sam stretched out his hand to touch the beautiful creature...

...and without any hesitation joined me on a short ride on the Prince, even occasionally stretching out his hand to pet the horse's mane (and suprisingly enough not even once attempting to pull it).

Being able to just get out of the house and enjoy the company of the horses as well as Aunty Juanita, Aunty Maryke and another lovely lady named Tanya, who took to Sam in a very special way, was awesome...we hope to make it out to Haven of Hope again really soon :)

With all having gone so well on Saturday, on Sunday morning we decided to push our luck and try and attend church as a family for the first time since the 4th December. Again, Sam surprised us and made it through the entire service with the help of his (muted) iPad which was wonderfully tolerated by the kind people sitting close to us. Last night our church hosted a Passover Dinner which we attended with Sam, who was an absolute little star the whole evening and charmingly smiled at anyone who happened to give him even the slightest bit of attention. By this morning Sam seems a little unsettled and has had a very restless night so perhaps all the changes to his routine are now taking their toll, perhaps calling for a quiet few days over the next week or so, but we can hardly complain. Sam's system has most definitely kept itself strong against the tummy bug that Meghan and I had which means Sam has now had about three consecutive "illness-free" weeks which for some might not seem much reason for celebration, but here in Smurfville it most certainly is not only reason for celebration...but reason to be truly thankful for all the prayers which are still being said daily for Samuel.

There has been quite a bit of talk recently on the RTS listserv regarding one of the more worrying side effects of the longterm use of Losec (Omeprazole) being that it prohibits the efficient absorption of Vitamin D, resulting in weakened bones which for some of Sam's RTS siblings, has proven quite troublesome. Even before this matter came up recently, I have never felt completely comfortable with the amount of medication Sam has on a daily basis and quite some time ago (probably about 18months) actually did try and wean Sam off the Losec, which promptly resulted in the one and only time that Samuel ever suffered from aspirated pneumonia. Apart from that short break, Sam has effectively been on Losec for a good two-and-a-half years so I thought it might be a good time to consider another attempt at weaning him off, perhaps with the help of a natural remedy this time. Aloe Vera Dew was strongly recommended as a good alternative by most of the moms on the listserv, most of whom are based overseas though, so when we went off in search of the Aloe Vera Dew the closest alternative we were offered was Aloe Vera juice of which 250mls of the bitter liquid has to be taken at a time...not going to happen with our Pediasure-only drinking little man. As a last resort, we took a super-short visit to a not-so-local shopping centre last week. Super short because while our travelling time was approximately 30 mins, Samuel lasted a total of about 3 minutes in the actual centre. Shopping centres are just one of those places where, healthy or not, Sam will struggle to cope...and quite understandably as I can barely tolerate them myself and (as far as I know) I don't have anything near the amount of sensory issues Sam has. Anyway, despite having to leave early, the trip seemed worth the drive as a natural pharmacist recommended something called Iberogast as a natural alternative to the Losec. Before beginning the weaning-off process, I thought I would first use the Iberogast in conjunction with the Losec to first make sure Sam's system will tolerate it. Wednesday afternoon Sam's tummy was making some really strange noises and rumblings and he's not eating and drinking 100% so now I've stopped the Iberogast again, will wait another day or two to see if Sam's tummy recovers and then will try and introduce it again, in case it is something else that is ailing Sam. If all else fails I'll probably persevere with the Losec a little longer and then towards the end of the year, by which time Sam will have been on it for just over 3 years, will try weaning him off without an alternative. The other option is another barium swallow study which might just surprise us by showing that Sam has managed to outgrow the reflux, but instinct tells me he does still have at least a degree of it at this point and, with Sam's foot surgery in September, I am desperate to keep all medical procedures in the interim to the absolute minimum - unless life threatening, of course. But there are many of Sam's RTS siblings who have been on Omeprazole for way longer than Sam so I don't believe that prolonging its use by another six months or so is going to make that much of a difference now. To be on the safe side, I will mention all of this to Sam's orthopaed when we see him in a few weeks time.

Tuesday morning sees the start of the second school term and we jump straight back into OT on Tuesday morning as well (after bunking OT last week on account of my birthday) but in the meantime Smurfville wishes each and every one of our readers a Blessed and safe Passover weekend xxx