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)

Thursday, May 27, 2010

HALLO PAYTON - A NEW RTS SISTER

In October last year we found out that Jacqui's friend's sister had given birth to a little RTS angel named Payton and that she had been transferred to the very same NICU which Sammy spent the first nine weeks of his life in. A few weeks later Jacqui and I went to visit Payton's mommy, Tammy (I did blog about this briefly) but as Payton was still in hospital we just got to see photographs of her and got to know her through chatting with Tammy.

Tammy and I remained in contact but with both of us settling into our "new" RTS lives, never got round to meeting again up until this last Saturday when Tammy, Shawn and Payton came to visit. It was so awesome to share similar experiences and almost get excited (is that weird) when finding out that Samuel and Payton have the same rts-erisms.

When Tammy lays Payton down to change her, she does the same kind of "heavy-breathing" that Sam does and, if you close your eyes, sounds exactly like Sam. She also laughs just like him and has the trademark red mark on her forehead as well as the reflux synonomous with our RTS kiddies and Payton's thumbs are not hectically angulated, but are definitely broad.

Payton was going back to the heart specialist this week to find out if her valve had managed to close on its own, which obviously we are hoping it has so that she doesn't have to undergo any surgery. I will keep you updated.

We managed to snap a few photo's but it was quite difficult trying to co-ordinate the pics as either Sam or Payton was moaning at any given time...aaaah, it was so amazing to be sharing this first-hand with someone else :-)





So, what's new with Smidgey Smurf - well we went for a second opthalmologist appointment on Tuesday at Vincent Pallotti (the hospital where Sam is having his op) and this opthalmologist is also fairly positive that there is no glaucoma at all. Sam's strabismus is still quite obvious but apparently this will more than likely correct itself as he gets older. His right eye is also doing a funny kind of thing - don't know if I can explain it properly but sometimes it appears as though the entire eyeball is "ticking" (rotating very quickly back-and-forth). It is pretty freaky to watch it and worries us a little, but we have told Dr Perrott about it so he can check the necessary on Thursday morning.
I have to admit that up until about 3:00pm yesterday afternoon I was still fighting the urge to phone the hand specialist (*more about this later) doing Sam's op to ask if there was no chance we could wait a year before straightening his thumbs. Sure I know the theory behind doing it now - as he gets older the thumbs are becoming more curved making it more difficult to straighten the bone - knowing the theory isn't helping me feel more at ease though :-) BUT yesterday afternoon Sam was eating a chippie (Simba cheese puff - his mouth sensitivity is so selective) and actually holding it himself but once he'd got halfway through the chip, every time he tried to put it in his mouth his little Sam-thumb got in the way and he just couldn't figure out how to manipulate his hand to bypass that little thumb and get to the chip. So, for the first time I genuinely felt that perhaps it really is in Sam's best interest to have his thumbs done now.
* When we were at the hospital on Tuesday to see the opthalmologist the panic really started setting in, being in the actual place where the operation would take place and all that. We had just left the hospital and were driving home and I just finished whinging to Chris, yet again, about how we should wait before going ahead with the op blah blah blah. Barely 10 minutes later Chris' cell rang and as he was driving I answered it - it was Sam's orthopaedic surgeon (the one who referred us to Dr Carter, the specialist). Long story short I told him I was having mild (yah right) anxiety attacks about the what's and when's and he calmly told me that Dr Carter is one of the best hand surgeons (pretty much reiterating what Matt Tooke's daddy had told me) and that if he felt we had to do the op now, then I had to trust that he knew what he was talking about. It was so weird the way it happened.
So folks, we are moving past me wailing endlessly like a spoilt little girl that I don't want the op now (well, those are my intentions at the very least).
Mmmm...this hasn't been much about Smidgey Smurf....let's try again - Smidgey is still LOVING his food (I don't know what bug has bitten him but I ain't complaining). He has recently started protesting against not only his normal Sam-erisms (getting dressed, sitting, therapy, lying on his stomach) but things like when I need to remove the boat from his hand which "followed" him out the bath, in order to put his arm through the sleeve. Or when trying to put him down for 5 mins after he's being travelling around on your arm all day. He definitely has a very strong will. I am also finding it increasingly difficult to keep him occupied during the day - he requires constant stimulation and activities. But thankfully he is extremely inquisitive about Max, our chinese Chow, and our two kitties, Belle and Jessie, and when I have run out of ideas we basically follow them around so that he can babble and "scream" at them - he goes completely tense with excitement. We've also resorted to hanging a string from the ceiling with bells on it, as well as wind-chimes from the key rack to make our back-and-forth trips around the house more exciting....you know what they say "Desperate times......."
Sam's actually been quite crabby the past two days and is making a new "gesture" with his mouth (almost like clashing his teeth - if he had them) so I am wondering if perhaps there aren't actually teeth on the way. We can see the two little white spots in his gum, but its looked the same for the past couple of months, so not really sure. Well, his corrected age would see him turning one only on the 8 July, perhaps he will have teeth by then after all (although with the amount of shoulder/arm/finger biting he does, not sure if this is something to be wishing for).

On Sunday Ouma and Oupa are coming to overnight by us for Chris' birthday on Monday, as well as to bring us a few tops that Ouma made especially to accommodate Sam's splints and then they will be back again on Friday, the day after the op. On Tuesday I have a meeting with the anaesthesiologist which I am looking forward to (if you can call it that, guess it's the reassurance I am looking forward to). If we make it till then, that is. Grampa told us this evening that he heard on the news (or read in the paper, either one of those two, both of which I never get to do anymore) that some-or-other scientist/geologist/proff-type-person reckons that within the next month either Cape Town (where we are) or Johannesburg are going to be hit with a mega-quake! Apparently Nostradamus also predicted something along the lines of an earthquake in Africa in 2010. Really Dad, if you HAVE to divulge that kind of information could you at least provide more specific details like exactly which city, town, suburb, street, day, time, etc.
Ciao all!

2 comments:

  1. you keep your mommy busy little sammy!!!!!love u lots.Janina

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  2. Hi Nicky your poem is fantastic and your writing is excellent you should turn this blog into a book. Meg is absolutely gorgeous cannot believe how she has grown and seems the most wonderful big sister to Sam.....and of course he is just adorable. Just look how far you have come in such a short time.....you are truly a great Mom to Sam never question that ever. He knows that Sam needs to be in his hands for the next few weeks with his surgery coming up and I know for sure he will hold him in his loving care..... You relax and all will be well. Lots of love to you all Anthea

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