Sam. Conqueror. Overcomer.
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...
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)
Saturday, April 9, 2016
Sunday, February 7, 2016
Gone, thankfully, are the days of hauling out cryptic map books when searching for never-been-there-before locations. Nowadays we jam on our GPS of choice or, if you're like me, Google Map every place before the time, preferably with a streetview, so that you can memorise all surrounding street names (just in case) and even a "landmark" or two. While I've not yet needed to purchase a GPS of the conventional kind, I am privileged to be accompanied on each trip by a location-finder of sorts anyway. Fabulously impressed that my particular GPS is spared the usual mechanical, insufferably-monotoned verbal directions, opting instead for charming grunts, excited gestures and warning screeches when necessary, the only snag is the rather limited choice of destinations (exactly two in total) and just as limited routes thereto. The you're-heading-in-the-incorrect-direction alarm could also benefit from a volume button or, even better, simply a MUTE button, particularly when attempting to make which is nothing more than a 200 metre detour in order to take care of the concerning petrol light results in such extreme protesting that you look worriedly passed the light, take a breath and hope that there are sufficient fumes to carry you and said screeching GPS home.
This little dude...always an enigma with his odd Sammerisms. Almost as enigmatic is his exceptionally accurate knack for remembering the makes of cars and who drives what. Every car trip, even while ensuring we are travelling his preferred route, is spent scanning the roads and pointing out every make of car he recognises. Different colours don't confuse him, so its the model of the car Sam's actualling taking note of and then excitedly gesturing whether it's Daddy's car, Nina or Lisa's car, etc. With mind-boggling perception Sam will notice a car whisk briefly across the road, even from a surprising distance. It's really quite intriguing.
Unfortunately we received some not-so intriguing news on Monday regarding Sam's vision. With Juvenile Glaucoma being linked to Rubinstein-Taybi Syndrome, for the first few years of life Sam underwent six-monthly Glaucoma examinations under anaesthetic, as the Opthalmologist we were seeing felt that Sam tolerating the examination simply in his consulting rooms was highly unlikely. Luckily (?) as Sam was having surgeries almost every six months at that stage, finding theatre time to couple the examination with was never a problem as having Sam undergo anaesthetic simply for a 5 minute exam was also not ideal. However, the only surgery Sam has had over the last two-and-a-half years was done with less than 24-hrs notice which was just not enough time to bring an Opthalmologist on board.
Concern growing with each passed examination-less month and Sam seeming to have lost interest in reading flashcards and books like he used to and even becoming a little agitated when I tried, I decided to make an appointment with a local Opthalmologist to discuss going ahead with the examination in theatre, even if it had to be a 'wasted' anaesthetic. When we arrived at the rooms, the receptionist asked what we were needing to be done and when I replied that I was wanting to make arrangements for the Glaucoma examination, she walked over with some eyedrops to dilate Sam's pupils. I laughed and told her not to worry as there was no way Sam was going to sit calmly through it. She suggested we try some drops just in case...and what a worthwhile suggestion it was. Sam did awesome through the examination, scan of the optic nerve and the tonometer. The great news is that there are no signs of glaucoma. The not-so-great news is that Sam is considerably visually impaired and should have been wearing specs years ago already to make the most of the limited time during which your eyesight develops. With vision teaching optimum development around 8/9 years of age, Sam's been robbed of some much-needed time. So specs have been fitted and once the apparently fairly thick lenses have been fitted, we'll dash down to collect so that not a second more is wasted.
Besides helping with his vision, Sam's physiotherapist is hopeful that being able to see better will increase Sam's potential to walk unassisted as he'll be able to more accurately judge the distance between himself and, for example, furniture.
A sneak preview...Sam quite happily tolerated the specs but there's quite a difference between keeping them on for 10 minutes compared to 10 hours.
Wednesday, January 6, 2016
Six days into 2016 already! Wow! I so planned an end-of-year, this-is-where-we're-at post. Guess we're doing a beginning-of-new-year, this-is-where-we're-at post instead.
Festive-Season plans were kept on the subdued side this year as Sam was scheduled for a Tonsillectomy on the 15th and the ENT doc had told us to prepare for a pretty hellish two weeks of recovery. And what would Christmas be without a surgery/illness anyway, right? Christmas 2010 we did Spinal Cord surgery on the 20th December and since then some-or-other bug each and every year.
On the 14th December (having finally made peace that removing Sam's tonsils was the only way to go and keen to just get it over and done with) we had a consult with Doc ENT, who had last seen Sam in October, to a) run through the final details for the following day's surgery and b) check that Sam was good to go for theatre and, more importantly, anaesthesia. After an extremely thorough examination Doc ENT concluded that he could not be certain that Sam's tonsils were the cause of us not having had a decent night's sleep in the last six week. Yes, he reasoned, the tonsils are enlarged but not barely close to what is referred to as "kissing tonsils" which is when the tonsils are so large that they actually touch (can you imagine?). Sam's greatest breathing issues come from having an extremely deviated septum in the right nostril which is almost completely obstructed (so much so that when I spray Sam's nose he has to lie on his back to allow the little pool of liquid to slowly drip passed the septum) and the common RTS floppy airway. Doc ENT advised that there are usually only two reasons why tonsils should be removed...significant airway obstruction and repeated tonsillitis (more than twice in a twelve month period). Already confident that removing the tonsils was not going to make a worthy difference to Sam's quality of sleep (which was our main objective) and with Sam last having had tonsillitis about 4 years ago, he was not 100% comfortable with going ahead with the Tonsillectomy and presented it in a pretty convincing argument, saying that should there be any complications and he was to land up in a Court with questionable motivation for having performed the procedure, there would not be sufficient medical background to substantiate his decision.
So...surgery scrapped for now!
Doc ENT did refer me to a dietician as he feels we are not managing Sam's reflux as efficiently as possible and this is in fact what is causing the constant irritation in Sam's throat. He suggested trying to get Sam off pureed foods completely and as quickly as possible as the absence of chewing (which stimulates the production of digestive enzymes) aggravates reflux and also suggested a completely dairy-free diet. Yikes! A tall order for a kid with extreme sensory challenges whose diet consists purely of pureed meat and veg, cheese, yoghurt and the occasional mushy mac and cheese. Oh well...what were we to do but give it a go. Doc ENT feels that with an adequate lifestyle-change regarding Sam's eating habits, his reflux should be so efficiently managed that medication should no longer be necessary.
For 13 consecutive days (starting immediately on the 14th) the Lil Smurfy Dude ate all things un-pureed...WHOOP! WHOOP! Chicken and even beef finely cut up and mixed with veggies and couscous was a HUGE thumbs-up. And then? He stopped as quickly as he'd started and we were back to pureed foods. Well, actually at this point, we're back to NO food as its been almost a week of him refusing to eat anything at all! Talk about from one extreme to the next...special needs parenting is most certainly just that...EXTREME!
Sam's adult front tooth (the baby one which he ground down into the gum which then had to be cut out in theatre) has been struggling to come through for some time now, you can see it sitting there in all its toothy glory just under the gum. It just can't seem to break through the gum, possibly because that section of gum was sutured up as opposed to having a "gap" where ordinarily the baby tooth would have fallen out. So that could quite possibly be the cause of his not wanting to eat. Sam does also have a bit of a crampy tummy-thing going on so perhaps even a bug in the brew...who knows? But even if it is a bug, the 6th of January is most definitely not considered "Christmas-time" still (just smile and nod, okay) so...YEAH!!! for our first illness/surgery-free Christmas in five years. Ah, as they say, celebrate the small things!
Aaaaand...another hidden blessing of special needs parenting...some time in the future we are going to get to celebrate Sam tolerating un-pureed food again (this was like the third time already LOL!) Just like we are going to get to celebrate him taking one or two unassisted steps again. What could be sweeter than living those precious moments more than once? And each time is as awesome as the first :)
Ooooooh...talking about celebrating...we have finally managed one other liquid other than warm Pediasure out of a bottle (right through the sweltering heat of Summer usually) and it be litchi juice out of a juice box! Fair enough Sam isn't so much sucking on the straw (or even closing his mouth on it) as what I am squeeezing the juice into his mouth, but hey...it's juice...out of something other than a bottle...it counts (again...smile and nod).
Happy New Year everyone...may it be a Blessed and prosperous one for us all xxx
Monday, December 21, 2015
Our visit to Sive Nathi is shared in more detail with quite a few beautiful photos at Daniel and Friends Fund BlogSpot, but one of my absolute favourites....
Thursday, November 19, 2015
Wednesday, October 7, 2015
Wednesday, September 16, 2015
Monday, August 31, 2015
Monday, August 3, 2015
Although the meds certainly did help some, I kept thinking back to those night's of blissful sleep in the hospital despite Sam actually being really ill. The major difference between hospital and home was that at home Sam was still sleeping in our bed, smack-bang in the middle to prevent him from hurting himself when bashing, while at the hospital he slept in his own bed. So Thursday we decided to go out on a limb and move house without the actual benefit of a brand new house....in other words...rearrange our bedroom, which in turn meant rearranging almost the entire house! Sam's bed was relieved of the storage facility it had merely become and pushed snug up against our own bed (baby steps). And? Well, with some very light bashing every night around 1am every night, Sam has been sleeping comfortably there ever since. As much as what he wants to sleep in our bed, being in his own bed is obviously far more comfortable and, it seems, partly responsible for his disrupted sleep. And of course the quality of sleep I am getting being able to actually relax my muscles without the fear of falling off the 10cm little scrap of bed I was left to rest on each night, is quite delightful too. Sam's still battling with his teething, his super-flushed cheek and relentless teeth-grinding tells me so...but he is at least getting a decent amount of sleep at night now. And who knows? Maybe the next six years will see us actually moving his bed a couple of cm's apart from ours....the sky's the limit folks.