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)
Friday, August 27, 2010
Yip, almost four months to the day Sam is back in hospital being prodded, monitored and, his least favourite, being stuck (literally) with a drip - which is already being done for the second time today as the first attempt left him with a bloody foot and Chris with a bloody sweater and pants barely ten minutes after arriving to relieve me. Interestingly (or rather, worringly) the previous stay in hospital was also four months before THAT one. Let's just hope and pray that there's no pattern forming here. Sam is scheduled for a sonar scan within the next half hour to see what's going on with those little kidneys which might be making him sick.
So we have a really sick little Smurf on our hands at the moment who still, as always, remains full of smiles and chatter for the nurses and, unless he's in pain, pretty darn joyful - which is why we all, especially Megs, miss him so much and hate to see him going through this all again...so soon. Needless to say, it looks like next week's MRI is again going to have to be rescheduled.
Now let me rush off to make the most of my "hygiene" break, in the best interest of all the other patients moms and medical staff:-)
Wednesday, August 25, 2010
This week started out pretty okay - on Monday we had a follow up visit with Sam's orthopaed to see how his thumbs were getting along. I expected to be spending a good one-and-a-half to two hours at the hospital as it would involve first going to see the orthopaed, then down for x-rays and back up again for the results and that's roughly how long it took the first time. We (I dragged Luke along with me and Sam) left home a good forty-five minutes before our appointment as I can NEVER find close enough parking which means we walk a good kilometre or twenty from the car and the weather was looking a bit ominous (still) so I figured I'd give us enough time to drive round the entrance hoping for a leaving patient/doctor. We had a choice of two routes - a) being much quicker and as-the-crow-flies direct but entailed driving along the R300 and N2 highway which are both notorious for a wide variety of issues from terribly inconvenient roadworks to more violent issues like brick-throwing, protesting, blockades, etc. and b) being a more detoured route with loads of traffic lights, congested roads, etc. So I opted for route a) and just as we turned from the R300 onto the N2 noticed a double-cab to the left of us completely surrounded by a minimum of about one-hundred-and-fifty to two hundred people and thought to myself...mmm, people round here sure are friendly - this poor motorist has obviously run out of petrol or something and look at all these folks offering to help out.
Anyway, arrived at the hospital with a good ten minutes "parking search" time but after circling at least three or four times and down to about two minutes left to not only park, but haul myself, Luke, Sam, baby bag, blanket, sound-making baby book all out of the car and up to the third floor. Eventually I resigned myself to a, technically, illegal parking spot which was situated right on a bend. The "technically illegal" part didn't concern me too much because there were at least ten other cars also parked "technically illegally" but was more worried about being parked on the bend. Was literally about to step out of the car when I noticed a burgundy Citroen pulling out of a parking bay across the road, so quickly threw all and sundry back into the car and pounced on the parking spot, practically bumping the Citroen out the way.
As we walked into Dr Carter's rooms we almost didn't have enough time to sit down before he called us in. Took a quick look at Sam's thumbs and sent us down to radiology. Again, as we walked in the radiologist was standing in reception and called us in immediately, Sam was SUPER co-operative and four x-rays took less than four minutes. Back up to Dr Carter's rooms and again straight into his office. He said Sam's thumbs are looking really good, the bone in each thumb is growing beautifully. He asked how physio was going ......
Dr C : So Sam is using his hands again as normal?
Me : Yes
Dr C : And he seems to be moving the thumbs as normal?
Me : Yes
Dr C : And he's grasping objects as normal?
Me : Yes
Dr C : And he's crawling as normal?
Me : Yes
Dr C : And....
Me : Whoaaaaa! Goofy-Crazy-Mamma Say What???
It reminded me of those age-old jokes where the guy falls off the ladder, breaks both arms, both hands, all his fingers, etc and when leaving the hospital he asks the doc with these pleading eyes " Will I still be able to play the piano?" and the doc replies "Yes" and the broken-armed guy leaps with joy, exclaiming how wonderful that was, as he could never play before!
Anyway, two half-consultations, four x-rays and twenty-eight minutes later we were headed out the door, me beaming from side to side and gushing to Luke about how pleased I was that it had all gone so quickly and smoothly and what do we see when we reach the car - my wheel has been clamped! I was in such a rush to grab the "open" parking bay I didn't bother to look where it actually was - which was right in front of a roller-gate at the entrance to another section of the hospital. Thankfully the security guards were still standing there, in the process of sticking the notice to my window and they were so completely understanding (even though they'd been read the riot act by an extremely angry motorist who had had to drive his car over the pavement to get through the gate) and agreed to unclamp my wheel without me having to pay the penalty fine.
On the way home, while still showering the Lord with thankfulness that I'd escaped the clamping-catastrophe, I heard a warning on the radio advising people to avoid the N2 as protestors were blockading vehicles in the midst of a six-day long strike! Whoaaa....let's turn up that thankfulness shower..mmmm, and make a mental note to listen to the radio more often!
On Tuesday we had our carpets replaced, which was kinda like moving house with all the inconvenience of packing, etc but WITHOUT the pleasure of the new house afterwards. The fitters took six and a half hours which meant that Sam and I were basically confined to our bedroom for six and a half hours and the constant hammering and banging works wonders for a child with sensory problems. When they were working close to our bedroom, which was a good couple of hours, Sam literally flinched with each and every hammering/banging...do you know how much hammering/banging goes into 70m² of fitting carpets? A lot! Thankfully, three broken floor tiles and a headache for me and, I am sure, Sam too the fitters left. One good thing came out of the day and that was that Sam's rescheduled MRI was confirmed for Thursday, 2 September.
This morning Sam woke up very moaney and whingey...and after vomitting his cereal up after a particularly inconsoleable bout of crying, was sporting a lovely temperature of 39.1. So, he is sleeping restlessly while I type this with an unrelentless fever still sitting at 38.3 even after three hourly administering of medication. So, I guess we are off to the doc again tomorrow which is a little frustrating as only eleven days ago he finished a sixteen day course of antibiotics....like come on Sam, can we at least split the healthy/unhealthy days 50-50....or is this just some kind of MRIphobia, that coincidentally you are sick again...mmm.
Saturday, August 21, 2010
Yesterday morning started out sunny and warm as usual, but by the time Meg and I took Sam for our afternoon walk, the skies had already started clouding over.
Thursday, August 19, 2010
But back to NT - so Sam is still not sitting, although we are really caught between trying to figure out if it could be as a result of the tethered cord or simply just Sam being Sam, because yesteday Luke and I had him on the bed and got him to sit for a good three or four minutes (while we were entertainting him with WOTB of course) and he didn't look too uncomfortable in the sitting position, which he sometimes does. But, lucky for us, they have these wonderful things called MRI's which means we don't have to rely on our own guesswork after all, so we should know within the next couple of days when Sam's has been rescheduled for. Sitting aside, however, Sam has been doing quite well with his "crawling", seeing as we really only started focusing on it last week. He can spend up to seven or eight minutes on his hands and knees and although he can't yet co-ordinate the moving of his hands and knees without collapsing, he has started rocking back and forth. So this is like SUPER exciting for us, because although Sam's "alertness" does seem to progress, although slowly, there's basically been no change in his achieving those more physical milestones. It's really quite mindboggling because if you hold two of the animals from his Noah's Ark toy in front of him, one being the horse (which is the only one he knows so far) and say to him "Where's the horsey?" he reaches for the horse or when you ask him "Where's the kitty?" he immediately looks to the floor to look for her. When you say to him "High Five, Sammy" he'll lift his left hand, but yet he can't hold his bottle or sit, etc. it's just so incredibly fascinating. Sam's babbling has also increased much to our delight and now that there's a tooth at the top of his mouth as well, each "word" is sort of bitten off with a Sam-version of a tooth grind, if not completely uttered through his teeth nashing....even when I wash his face, he catches the washcloth in between those little teeth and we have a playful little tug-of-war.
Here's a pic of Sam and Cathy practising his crawling, with Meghan doing what she can to keep him focused (although in this pic it actually looks like she's taking a bit of a nap).
I think one of the fairly disheartening areas of having a child with special needs is that, to a varied extent, they inherit more of the syndrome's characteristics than their mom's and dad's. Don't we all love pointing out which of our most endearing traits our children have inherited (while, under hushed tones, blaming the less appealing traits on our spouse). Well it seems that the gene responsible for the incredible "love" (I was tempted to say "addiction" but not sure if I could speak on behalf of Chris) Chris and I both have for food was just too much for Sam's particular Chromosome 16 to stand firm against because he most definitely has inherited this. You can absolutely NOT eat anything in front of him and that tiny little elf mouth starts eating imaginary whatever it is you are eating. And, sensory integration issues or not, he has no sensory problems with food. And I ABSOLUTELY ADORE IT! I will never take for granted the absolute joy you experience at being able to treat your little one to a chippie, a cookie, a marshmallow, a piece of orange, some biltong and even, believe it or not, some spinach and feta pie. Fair enough, he only takes tiny little bites and chews that tiny morsel so so thoroughly, but just knowing how so many of these precious little RTS angels battle with eating problems makes this seeminly insignifant ability just such a relief and really quite joyful. I do have to be careful though because Sam most definitely favours sweet things and, although he is nowhere near being overweight or even average weight at just 7.2kg's, I do not want to permanently influence his food preferences and, ultimately, put him at risk of obesity when he gets older.
I have to say that I am really quite proud of Meghan and Luke, they are both really wonderful with Sam and are always eager to play with him, even though (especially for Meghan) it usually means at least one fairly OUCH-moment when he manages to grab a handful of her hair. He still has this really testing habit of hair-pulling and he definitely knows what he's doing because he gets so excited, even his voice changes pitch. It's bad enough when you're sitting down and he grabs your hair, but on three occasions (and both in the shops on top of it) he's managed to stick out that little hand at just the right moment and grab Meghan's hair while she's walking in front of us, which means DOUBLE OUCH for Meg.
But, moving along onto a far more worrying topic......HAS ANYONE SEEN OUR MISSING WINTER! Seriously, I am NOT a Winter person or, rather, I wasn't until last Summer when we battled so with Sam's sensory issues which were heightened by the warmer temperatures and brighter daylight, etc. and I just couldn't wait for Winter so I could wrap him up when he slept, etc. Well it would be generous to say that we've had two weeks of proper Wintery days. It's totally absurd, especially considering we're less than two weeks away from Spring. I don't even think I've worn a quarter of my Winter clothes (and this time it's not just because I can't fit into them anymore) and haven't once yet put a jacket on.
Thursday, August 12, 2010
Sam had to make up for plenty of missed "holding" time as we were last in Stilbaai in December. And doesn't he just look soooooo unhappy about constantly having a willing arm being held out to him? So, here we are with Tannie Janina...
Wednesday, August 4, 2010
When Meg's got home from school yesterday, instead of changing out of her uniform into casuals, she decided to put on her pj's....yes, in the middle of the day! A short while later I asked her if she'd like to take a walk down to the post box to post a letter she had written to her best-friend Danielle, who has recently moved to another city. Of course she was eager to go, but not so eager to get out of her pyjamas....she was comfortable like that, after all, and if she didn't have a problem with it, why should I? The second we started heading towards the gate, Max started jumping around and getting all excited, obviously presuming (as he always does) that he was going with...so, we asked Luke to put on his lead (Max's, not Luke's) and come with us. Well, as you can see from the pic, Luke was far from impressed first with Meghan's daytime apparel and secondly because Max literally stops every 5 metres, either to rest (he isn't the fittest dog around) or to mark that particular section of sidewalk. Talk about creating a spectacle - one gentleman completely stopped in his driveway and had a good laugh, although I can't say at who....my pyjama-clad daughter, my exasperated son....or just simply at Max who rather resembles a miniature bear.
On a more serious note, the concept of forgiveness has really been clouding my mind lately. Over the past couple of weeks there have been several occasions when either I or someone in my family has been "hurt" or I have heard a story or read a blog about an insensitive act causing pain/emotional trauma to someone. And I know the theory surrounding it all, which is that because we are blessed with God's forgiveness when we ourselves have done wrong, we are in turn to forgive those who have done us wrong. There are times when this is something we do without even giving it a second thought, but there are other times when putting that theory into practice is a whole lot easier said than done, especially when you don't see any remorse in your "offender" and, even worse, you know for sure that if they had the opportunity to know that their actions would hurt you, they would still go ahead and do it anyway. When I least expected some clarification on how to actually achieve forgiveness, last night I read something out of a book Meghan and I read together ("Time For Two" by Danila Liebenberg). "Life offers no guarantee against pain. Pain is often caused by people who hurt you. As soon as you are hurt, you have a choice to either forgive this person or to wait in bitterness until that person receives his due." And then she goes on to suggest the following steps in order to achieve forgiveness :
"Admit to yourself what has happened to you, what it has done to you and how it is still affecting you. Do not be alarmed and draw away from how you really feel. Ultimately the truth sets you free. Pray that God will help you to forgive. Ask God's help to pray for the person/s by name. Forgive the person in prayer and in thought. Allow your pain to make you aware of how pain can affect others.
True forgiveness is an active deed. Forgiveness is not an instant trip or an instant cure. It could take you months, even years. Take the steps towards forgiveness at your own pace. Walk the long road of forgiveness to the end, DO NOT TURN AWAY."
Danila's suggested approach on achieving forgivess by literally breaking the emotions down to their core by having to admit that that person hurt you, and the surrendering of pride that sometimes goes with being able to admit it (ie, I can't believe that I allowed myself to be hurt by THAT particular person) and then allowing yourself to heal at your own pace, really encouraged me to make a greater effort at being able to forgive. Sometimes forgiveness is "romanticised" by the idea of simply going through the motions of "forgive and forget" and expecting a wonderful peace to befall you, without actually having searched your heart and admitting to yourself exactly how you were affected by the wrongdoing. So here's to pursuing true forgiveness!
Monday, August 2, 2010
My goodness folks, what a week we've had...and by that I mean...WHAT A WEEK WE HAVE HAD!
FRIDAY last week started with the traumatising and harrassment we've become accustomed to over the years from a certain "Adversary X" (I am not going to go into any further details as I would hate to poison Sam's blog with the relentless negativity which surrounds this person). So, Adversary X's T&H continued into late morning on Saturday.
SUNDAY: Good friend Kim remarked at church that Sam's top upper gum looked quite swollen and that he would probably be getting another tooth soon (her youngest is one year's old so she still has such things fresh in her memory). I thought "Easy Peasy Lemon Squeezie", the first three have come out quite easily without much ado, surely this one will follow the same pattern.
MONDAY: As brilliantly predicted by Kim, Tooth No. 4 made it's appearance and with it a firm statement that there would be no "Easy Peasy" here. Along with the little bit of grumpiness the latest addition had brought, Sam was having some rather painful bowel movements and screamed in pain every time he dirtied his nappy.
TUESDAY : Morning - Sam still screaming in pain with every bowel movement and, to add some further excitement, Adversary X throws us another doozey! I decided to make an appointment with Sam's paed to discuss the tummy problem Sam seemed to be having and got an appointment for Friday which wasn't too much of an issue as he's had these episodes before and they seem to right themselves after a few days. Afternoon - the fatal attraction sinus infection I've had for like the last 2 months decides it's certainly not getting enough attention with all my self-medicating and decides to spread its cheer by going into my ears and throat. Late Afternoon : Meg comes to me complaining of lower abdominal pain when she goes to the loo to make a Number One.
WEDNESDAY : Wake up with whhhhiiiirrrrrroooooosssshhingggg noise in my ears and hectic bags under my eyes from not being able to sleep due to blocked nose. Wake Meg up for school, who immediately tells me the pain in her abdomen is still there. Decide to give her some Citrasoda as this has happened before and to give it some time, make an appointment for doc for myself, who confirms sinusitis & upper resparitory tract infection and prescribes an antibiotic. Arrive home from my doc's appointment and find Meg in hysterical tears because "she is weeing blood". Make another doc's appointment and go off with a rather dodgy looking urine sample. Doc confirms Meg has hectic bladder infection...AGAIN!...and prescribes an antibiotic. Meghan has this unbelievable fear/phobia about going to the loo at school and so holds it in from roughly 7am in the morning until she gets home after 2pm in the afternoon! She got a talking to from both our GP and paediatrician so hopefully we won't be doing this again anytime soon.
THURSDAY : Wake up to the sound of Sam's snotty nose - oh no, not another patient! In the afternoon spend twenty minutes watching Sam agonise through what-was-supposed-to-be-therapy but instead becomes a flood of tears and runny nose. Cathy confirms though that Sam definitely seems to be coming down with something - disappointment sets in, we were planning a surprise trip to Stilbaai for the long weekend. We were going to keep mum about it and then wake the girls up on Saturday morning and say "pack your bags, we're off to Stilbaai". Now our plan looks like it might not happen.
FRIDAY : Have, as always, a thorough consultation with Dr Bristow who says that he thinks Sam might be coming down with another viral infection and being the wonderfully efficient doctor that he is, gives me a prescription for an antibiotic just in case. We also discuss Sam's tummy problems, still very obvious delays (like sitting, etc) and then the signs that Sam is showing which might indicate a tethered cord (the turned-in foot, no-sitting & seemingly small capacity and erratic bladder). Dr Bristow feels this is something we need to check out sooner than later and has already begun the process of scheduling an MRI. We won't mention about with who, it was decided, the blame lies for Sam not being able to fall and stay asleep at night.
SATURDAY : Sam has full blown viral infection - coughing, sneezing, runny nose, gagging from all the mucous, etc. good call Dr B! So we had a wonderfully sleep-deprived night :-) Still we decide to hold off on the antibiotic for one more day but by Sunday morning, after yet another sleepless night and mucous that is going yellowy, we fill the script and give Sam his first dose.
So thats where we are today (after yet another sleepless night) - waiting in anticipation for any indication that we might still be able to make it to Stilbaai. Of course the bottle-drinking is going just SWELL! The last bottle took almost two hours, Sam first tried to drink but couldn't breathe & swallow through the same orifice, then I tried to suction him to clear the nose but this made him scream, which produced more mucous, which then again left us at square one with him not being able to drink...aaahhh, the joy! Eventually after a hysteria-induced sleep, we managed to finish the bottle.
And now for a few pics......
Sam is soooo happy to have splintless/bandage-less hands with which to practice his keyboard with. Although he became quite creative while they were still in splints and would quite efficiently use his feet instead.
He even found the time to give Dad a few lessons