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...
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 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)

Wednesday, November 9, 2011

Poltergeist-style TV trouble

We've been experiencing two separate kinds of problems with our tv recently, one technical and the other smurfical. The on/off button on our remote control for the tv has been giving some trouble. The button sort of sticks for a second or two after you've pressed it to switch the tv off, so if you're not careful a couple of seconds later the tv just goes on again on its own. Now we make a point of hanging around for a minute after putting the tv off in the evenings to make sure it's stayed off, because every now and again we would wake up to find the tv had been on right through the night. As Chris goes to bed much later than I do, I have often moaned at him on these mornings for not having noticed that the tv was still on (presuming of course that it was coming back on seconds after I've left the room) but each time he swears it was definitely off. A little freaky.

The smurfical issue is that a certain little boy has an obsession with pressing buttons. Sometimes it's almost as if his fingers have a mind of their own - he'll be kneeling in front of the tv watching something and that little pointer finger is just triggering away non-stop and then he occasionally gets frustrated because the channel changes in one of his favourite parts, but he's the one doing the changing! Apart from flicking through the AV buttons and constantly changing the volume, he's also changed the picture from colour to black and white and has even occasionally set the timer on the tv so that it goes off suddenly. Last night I made a point of hanging around for a good few minutes before going off to bed to make sure the tv was good and solid off but low and behold when I got up this morning it was on again. Of course I moaned at Chris and of course he insisted the tv was off when he went to bed. And then the light bulb, like the tv, went on and Chris said that it had to be Sam setting the on-timer for the tv, because if he can set it to go off he can most certainly set it to go on. A little later this morning Sam was doing his usual trigger-finger-exercises and as soon as I saw him hit the Menu button I, as I normally do, quickly grabbed the remote control to try and exit out of the menu before he could go any further and there it was : ON TIMER 00:06! (Obviously the longer I take to catch him, the later the tv goes on).

So apart from keeping us on our toes with mysterious appliance-behaviour, Sam is pretty much in the same place he was a week ago. The whole sensory vs pain/discomfort thing is still a bit baffling to me and, quite honestly, worrying. We've determined (as best we can) that there is no obvious reason for his, now, simply refusing to sit whether it be at home or more aggressively at PT. The thing that confuses me the most is that there does seem to be at least a slight improvement with the other vestibular sensory issues, like lying him back in the bath to wash his hair and even with Heidi being able to lie him down herself on the mat to do his stretches on Monday (last session I had to first lie him down for her and then she took over). So why would sitting then still be such an issue? I am still checking his urine often to make sure there's no bladder infection and really just don't know what other issues there could be that would only really become painful/uncomfortable when in a sitting position, other than the obvious misplaced testicle. I've even wondered if there isn't something going on in the area where his spinal cord was released, which of course has me imagining that I have seen a change in his bladder function again. But that was almost a whole year ago so surely it wouldn't take so long for any complications to surface? Well, I guess we'll know for certain within the next five weeks whether it could be because of the testicle and then we have an annual follow-up with APF in January/February to make sure everything else is still okay neurologically. Just have to sit it out I guess :)

Because Sam has been relatively healthy over the past few weeks (with the exception of the fluid in his left ear) we've managed to stick to our therapy schedule. Thankfully he has not yet developed any major aversion to speech therapy which I think is purely because his ST is really letting Sam set the pace and in doing so has him trusting her enough that she has even managed to attempt one or two light speech prompts on him in our last two sessions. So now when him and I are at home I try and squeeze one or two in myself when we are sitting quietly so that he becomes more used to the idea of having his face touched and when we sing songs like Incy Wincy Spider the "spider" first climbs up his cheeks before reaching the spout. Sam's definitely more comfortable with the whole exercise than what he was in the beginning. As mentioned some time ago, I've decided to give the signing another go and Sam is doing great with signing "more" now. So, the speech progress is relatively slow but it is progress nonetheless and at this point, although the need for being realistic is flashing constantly in my mind, I am borderline D.E.S.P.E.R.A.T.E. for some form of expressive communication from Sam.

The nighttime splinting of Sam's left hand to try and remedy the camptodactyly is just not going well. First Sam, albeit with much protesting, tolerated the splint. Then he figured out how to take the splint off (Do not ask me how - it has THREE straps), which meant I had to secure it a little tighter. Now he just bangs his hand violently against the side of the cot until you take it off. So we're not expecting a whole lot of improvement for those little fingers.

Meg's allergies/flu/reaction-to-paint-fumes or whatever it is that was actually ailing her seemed to improve towards the end of last week but not only does it seem to be worsening again, I too now seem to be coming down with something and Sam has also been coughing a little - not the greatest timing. As the weeks spiral towards the normal year-end rituals we have final exams for Meg starting next week, a visit from Sam's granny, a ballet presentation and another Christmas concert to look forward to before school closes and we find ourselves in the middle of yet another December surgery! I am hoping and praying (so please feel free to join in) that with this being a far less complicated surgery, that Sam's recovery from both the op and the anaesthetic will be so much less traumatic than it was in August. With it being so close to the time (basically the day before) when everyone packs up and heads-off on leave for the next few weeks, I do not want any unexpected issues and am waiting anxiously to find out whether the anaesthetist who did Sam's thumbs and tethered spinal cord will be able to juggle his already hectic schedule to help us out again (Yet again, prayers in this department would be so appreciated).

1 comment:

  1. Isn't it funny how it takes us so long to put 2 and 2 together and realize it's the child who's turning the TV on....or some other equally irritating thing? Hugs to you and prayers for a peaceful recovery from surgery.