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)

Friday, July 29, 2011

Surrendering normal and finding celebration....

Somewhere, amidst the now daily chaos that is trying to keep an extremely close eye on an ever increasingly mobile smurf while scheduling and confirming details for his upcoming surgery (Oh My! That reminds me - I haven't forwarded the authorisation numbers through yet!) and not forgetting the "normal" mundane tasks of housekeeping and taking care of kids, I vaguely recall a different time...what seems like just a distant memory now...of a friend, confidante, lifter-of-my-spirits. I can't always conjure up her image in my mind - it's just been far too long, but I'll never forget the joy of our times together. While rushing to catch a falling-off-the-couch smurf this morning, something caught the corner of my eye. My heart fluttered...could it be? My heart willed me - go ahead, look. It has to be her. My heart cautioned - but what if it isn't? Why put yourself through the disappointment?

My heart always overpowers my mind - and so I turned...the overwhelming emotion of laying my eyes on her created a lump in my throat as I stumbled over words, trying to utter her name as she stood there in all her glory -


Or BPC as I lovingly refer to her. And what do you know - there on her screen, in equal radiance and beauty, was a picture of the lovely little being solely (well, almost) responsible for the lack of blog posting. Awwwhhhhh...but can you blame me? Isn't he just the most adorable little treasure? (Okay, so I am just a little biased...but indulge me, okay?)

Our little smurf is all over the place, crawling at the speed of lightening (which speed is daily honed by his unrelentless desire to catch the kitties) and THIS statement is made with little bias as, while standing in the paed's office last week, Sam covered the entire distance of the waiting room floor in a split second to get to the little girl standing on the other side, making her mom exclaim how fast he crawls. He has a habit of pulling his peers down to the floor, not out of nastiness but purely to bring to them down to his level. So when he saw this blonde hair, blue-eyed little beauty standing with her blankie on the far side of the room his little hands and knees motored across that floor with amusing "shimmying" and speed. Not only has he mastered crawling, he is now pulling himself up on everything and then quite confidently pulls himself along the length of whatever he's holding onto. As if all of that is not enough, Sam now crawls up the stairs and then tries to turn himself around to crawl back down again - this he has not yet mastered though and usually starts whimpering when he realises he's stuck.

The smurfskiing is going well and Sam is experimenting with all different kinds of equipment, from stacking cups to his Barney bus! His view is - if I can fit it under my hand, I can smurfskii with it! I bet if he could keep either one of the kitties still for half a second he'd try using them as a smurfskii-board. I am sure we'll have more pics on this topic soon....

Sam clapping for himself when I exclaimed how well he was balancing. He never misses an opportunity to applaude his own achievements, just in case we're a little too slow.

Almost daily I spend a good few instances in awe at just how intelligent this little boy is. Do you know that if you surrender all pre-conceived notions of "normal", you can find something to celebrate and appreciate in almost every aspect of your life? A perfect example - for months now I have been posting about (and, honestly) sometimes complaining about the fact that Sam is quite severely attached to me...which means he struggles to take a bottle or food from anyone else and plain and simply bursts into tears if either I leave the room or if, say, my Dad is holding him and leaves the room with Sam. Two of the more challenging issues are that he cannot be consoled by anyone else if he is upset and, perhaps the most trying, cannot be put to sleep by anyone else.Somehow that night that I stayed in hospital a couple of weeks ago, Sam knew that I was not there - that he had to be okay with being taken care of by someone else. But since then, even if we try and "wean" him off me in the evening by me trying to "fade off into the background" about half an hour before his bedtime, so that Chris can get Sam off to sleep, he just somehow knows that I am there and will cry and, ultimately, v-word until I come and take-over.

What is there to celebrate in this? Well, up until a couple of days ago, I thought it more a task than anything else. And then, on the RTS listserv, started reading mails from several RTS moms about
the heartbreaking emotions they endure when their own little RTS sweeties either fail to or have taken considerably longer to "recognise" them as their mamma's. I started e-mailing the listserv to share how super attached Sam is and also how affectionate he can be (when he's not giving me attitude). I decided not to send my thoughts though because I can only imagine how I would feel if the tables were turned and it would probably break my heart just a little bit more. So instead, I will cherish and savour each moment that Sam protests against him and I being separated and thank the Lord for how truly blessed we are.

Kindly Note : The author hereof reserves the right to amend this post/statement at any time, without notice, should exhaustion and severe backpain begin to cloud her judgement. Thank you.

Talking about attitude - on Tuesday Sam, Chris and I were lying on the bed and Sam was trying to get Chris and I to knock on the headboard for him. It being the end of a rather long day with me trying to do a painkiller-free day since the op, I was not particularly up to lying and knocking on the headboard (horror of horrors!) so instead folded my arms underneath me so that Sam would hopefully stop trying to pull them over to knock. Sam stopped, looked at Chris (knocking frantically to keep Sam happy), looked at me...took a step forwarded and bashed me straight on the nose! My warped idea of how to find something to celebrate in this? That this little mite of a human being is prepared to stand up and fight for what he believes he truly deserves....which in this case was plain and simple obedience.Okay, it took a couple of tears (mine, not Sam's), some tissues to stop my bleeding nose and a couple of days to work through the whole process to get to this point, but at least I'm here :)

So, Sam's surgery is scheduled for 12 August at 8:00am...beginning first with his annual glaucoma examination, then the removing of his adenoids and lastly the process to rectify his undescended testes. It looks like we might get away with coming home the same day but will probably discuss this further closer to the time or, rather, on the day.

In closing : I captured THE most awesome video of Sam jamming to Bruno Mars, but with Sam's ever exploring fingers of anything remotely technical (cellphones, remotes, keyboards, etc) he has somehow deactived my phone's facility to download pics/video's to the pc. I am devastated - to the point that I am going to take my phone in to my service provider tomorrow to ask them how to remedy this, so here's hoping there'll be a post on Sam's blog tomorrow, headed : Sam Luvin' Bruno Mars

Thursday, July 21, 2011

A Merry Martyr

Don't you love how "casual" dads are about taking care of the kids? How they shrug off our, seemingly, feigned exhaustion at the end of each day because when THEY take care of the kids it's just no fuss at all? Well of course it ain't, because if I could spend the entire day just playing with Sam without having to constantly ensure it's constructive, stimulated play, without having to tidy the house, make the beds, wash bottles, make up a day's formula, drop and fetch the other kids from school, do the washing, etc etc....I would also end each day with a smile and a load of energy to boot!

Still, it was a huge relief to hear that Monday night had gone smoothly with none of the usual hysteria that has become synonymous with Chris putting Sam to bed. Such a relief in fact that I decided to take full advantage of Chris' eagerness to see to Sam for the next couple of days and, in anticipation, had pvr'd a good couple of movies I'd been wanting to watch over the past month or twelve, as well as stocking up on some mags to keep me occupied in between my intended movie marathon while seeing my recovery out in bed! Aaaahhh....the joy of disillusionment. I got home from the hospital just past 11am on Tuesday, made my way to the not look in the not look in the not pass Begin, go straight to jail...uhm, I mean, bed! Do not be THAT Mom, I told myself. The kind of mom that is desperate for some rest but when eventually presented with the opportunity to take it (even if it takes a surgery to get to that point), lets guilt and imagined (hopefully) expectations get the better of her. You know the kind, I think they also go by the name of merry martyr...LOL! By Tuesday evening I had washed Sam's bottles, made his formula, put on the dirty laundry and fed Sam. Do I regret it? Of course! I have now either contracted flu or something similar as I have a sore throat, headache, temp, earache and possibly the most entertaining - continuous sneezing which in turn means continuous nosebleeds. Oh Joy! I am sure at least one full day's rest would have made the world of difference but as I, defeated, removed my pvr'd movies from the playlist and placed my unread mags on the bookshelf I had to admit that I have only myself to blame. Sigh! (Although having Papa Smurf demand that I stay in bed might have done the trick - just a thought for when my tonsils come, C).

As for the procedure itself - all went well or as well as it can go with 10cm+ plugs stuck in your nose and sinus cavity and equally long splints sewn into your nostrils. Thankfully the last sinus plug came out on Thursday and the splints on Monday evening. Those first few breaths of air were AMAZING! I even told Chris it felt like I was breathing in too much oxygen at a time for my lungs to cope with...LOL! (Of course that was over a week ago before I got sick) My post-op nose is still a bit tender and raw but the overall experience was not unpleasant, largely thanks to having a truly compassionate and caring ENT!

Wednesday, July 13, 2011

Daddy Daycare

So what was all the fuss about. ON Monday Morning, Nicky said goodbye, I wanted to take her but we were not sure how Sam would take the goodbye at the hospital.Soooo, Sam slept till 8am, woke up with a smile and spent 10 mins talking to me, uuugh cooo aaaa etc and then it hit me, the bottle is not going to walk into the room by itself.

I put Sam in his cot and made sure the sides were up, and ran to the Kitchen, had a quick look at the thesis on the fridge door left there during the night by the Sam fairy,distant cousin of the tooth fairy. REALISED that I'm running 45mins late with Sam's Day plan,but hey Sam's not complaining. The list did help, Sam had every bottle and meal on his menu. Sam even managed to give me not on but two dirty nappies, and they were more than just wet, they had stuff in it.

Sam was just great, he ate and drank everything that was given to him (as per the list). He played, watched TV and did not cry once. OK he cried once, but it was not my fault, I told him not to ride his bike on top of the dining room table.......

Then Brampa and Mommy happened, when visiting Mom in hospital, I got all the suggestions, Maybe Brampa must sleep on a mattress in the room, just in case I don't wake up. We settled on Brampa sleeping in Luke's room and Luke slept in front of the TV. Bramps got up every 45 mins to check on us, but we were just great. I made use of my Dad SuperPowers and was aware of almost ever move Sam made. Sam made sure of it, I had a hand/head/feet in/on/bumped/slapped/kicked my face/ribs/arm the whole night. knew exactly what Sam was doing and were he was. So much for Nicky thinking that I will not wake up for him.

Day 2..... repeat most of Day 1. added we went to fetch Nicky from the hospital and to her surprise Sam was fine, still not sure why she was worried.

But on a Sad note... Nicky does look very sore or as they say in my world "vrek eina" , so I will have some more time to spend with SAM, bring it on, I had fun spending so much time with my little guy.

Friday, July 8, 2011

Sound like a plan?

Do you know where we were this time, two years ago? We were struggling the most wicked frustrations as Sam's "real" due date, the 8th July, came and went and we were still sitting in hospital after eight weeks with the last week being ventilator-free and the only thing keeping us there being Sam's inability to drink. I remember losing my cool with the nursing staff almost every single day towards the end, when they would do things which I thought were delaying our progress with trying to get Sam to drink, things like giving him a bath just before I arrived to try and breastfeed which of course meant a super sleepy smurf (funny how now a bath seems to re-energise him instead) or when I arrived one morning to find a temp nurse had moved his NG tube from his nose to his mouth!!! Yip - that's sure going to encourage him to swallow! Poor old Dr A...I phoned him every day with one complaint or another. The following Monday I went into his office to complain that, yet again, the NG tube had been put in his mouth. He said "Do you know what Sam the Man needs? He needs to go home!" (He always called Sam, "Sam the Man"). He asked if I was confident enough to go home with the NG tube...I said OF COURSE (have been asked this sort of question a number of times by now). I am not really sure if he was acting in Sam's best interests or his own, in an attempt to avoid any further whining on my part, but does it really matter? Sam was scheduled for an eye examination on the Tuesday and he said that if all went well we could go home within a day or two after that. That very Wednesday as I walked into NICU the nurses met me with huge smiles and asked if I would like to take Sam home...THAT day! The usual protocol was that the night before taking a preemie home the mom had to do a sleep-in, which I obviously hadn't done. I was too scared to ask about it in case this step had been overlooked and by asking I in turn delayed our leaving by another day. Eventually good sense prevailed but I was overjoyed to hear that Dr A had said he was confident I would cope with Sam and needn't do the sleep-in. I quickly phoned Chris and asked if he could leave work, rushed home to get Sam's never-yet-been-used carseat and rushed back to the hospital...just in case Sam's paed changed his mind. Did a couple of really quick practice rounds in front of the nurses for inserting NG tubes and we were off! It was the 15th July, exactly two months since Sam's birth.

WOW! I remember every minute of that day...what Sam was wearing, what I was wearing (okay, this one isn't too difficult because I only had two outfits I could fit into in my post-pregnancy state)...what a thoroughly glorious day! Our little smurf has accomplished so much in these past two years, he has such an incredible personality, so many gorgeous little smurf-erisms, the most enchanting charm...I love him with all my being. Oh, please don't misunderstand, I love all three of my children so and cherish each and every one of them for their own unique characters and spirits. But, as I am sure all SN parents can relate - seeing such a fragile little being struggle so hard to simply stay alive and then struggle to achieve and master abilities and accomplishments we generally take for granted, twinges that love with just a little extra admiration, a little extra awareness and a whole lotta AWE!

One of the blessings so often taken for granted is communication. Although I would absolutely love for Sam to be able to speak to us "normally", especially at times when he is ill and we are struggling to pinpoint the problem, I have always quite appreciated his ability to largely communicate to us what he wants by using different tones with his Sam-glish, his own hand gestures or, more commonly now, taking our hands and deliberately placing it on something he wants or wants us to manipulate, eg. the tv remote control, a book he wants us to read, etc. The past week or so I have really felt, unhappily so, the blatant absence of proper communication with Sam. You see, as mentioned previously, Sam is going through a particular bad case of separation anxiety. If there is enough distraction, it is occasionally overcome, but mostly not. Also mentioned previously, I am going in on Monday morning for procedures on my sinuses and nose. I have been incredibly stressed about this operation, purely out of worrying about Sam and how he is going to be, particularly because I have to stay overnight. (I asked my ENT if we could postpone the tonsillectomy for another time because I can't possibly manage a five/six day "downtime" and was sort of hoping it would mean that I could then come home on Monday afternoon already...but alas not). I am not sure if Sam has picked up on my being extra anxious the past few days but his separation issues have reached newly aggressive heights...the kind which calls for antics such as leopard-crawling through rooms, behind couches, so that he doesn't see me when Chris has managed to momentarily distract him, or doing amusing monkey-like acrobatics over beds in an effort to sneak past him by trying to silently scale the bed as opposed to having him spot me walking by. As humourous as what it is recalling these episodes now (probably some of those you-had-to-be-there moments), it is heart-breaking not being able to explain to him why I am not going to be there when he wakes up on Monday morning or when he goes to sleep on Monday evening and for the twelve/thirteen hours in between. Because of how hysterical he becomes when, for instance, Chris takes him from me just so I can quickly eat a plate of food or something equally trivial, means that we have had to reconsider Chris bringing Sam to see me at all on Monday.  I know that perhaps this all might seem a fairly silly challenge to some, especially as I am only going to be away for one night...but you need to personally know our Sam to know how upset and inconsoleable he can become.

We've tried to concoct all sort of plans to remedy Monday's overnight stay, ie. Chris brings Sam to the morning visiting hours, Sam screams hysterically when leaving, resulting in huge amounts of v-wording all over the ward, etc. At the afternoon visit : repeat above procedure (perhaps more elaborately) but add that Chris loudly announces when leaving "Sam and I will see you tonight then!". With any luck all the patients and nurses witness to these episodes will plead my case on my behalf by telling Dr N that I DESPERATELY need to go home! Think it'll work? Nah, me neither. The only thing I can hope for now, other than a miraculous healing of my URT by Sunday, is that I am in so much pain after the op that it completely distracts me from worrying about Sam. A bit warped, I know...but desperate times folks...desperate times!

Time for a subject change before I manage to think up something even more absurd en lieu of a cancellation rather. (Oh please - don't let anything GENUINELY happen to cause me to cancel, in case everyone thinks it's something I planned).

On Wednesday Sam had a Prevenar booster shot which will hopefully strengthen his immune system throughout the remainder of Winter (Hugs & Kisses and a great big THANK YOU to Aunty 'Laine). Yesterday we had a follow up with Dr dT - OP for back, hips, knees, etc. Sam's hip x-rays came back beautiful, even though Dr dT gave us a bit of a startle when he started the conversation with :

Dr dT : you want the GOOD news or the.....

Me & Brampies : Huh?
{Brampies and I look at each other in despair} 
There's a choice? Why's there a choice? What could possibly be wrong? Oh No! What do I ask for first? Good or Bad?

Dr dT :  ...the GOOD news!

Me & Brampies : Okay, what'll it be? Good news or bad news? {Cogs start shifting the gears of our     minds into action....Dr dT's last statement slowly replays in our minds}
Ahaaaaaaaa! The light finally goes on!

Sam's little left foot, however, is still cause for relative concern as a result of the hallux varus (mentioned before I think) and metatarsus adductus. The plan for now is basically to wait until Sam is about five years old, giving the metatarsus adductus time to remedy itself, failing which a procedure will be carried out at the same time the osteotomy is carried out to rectify the hallux varus. Dr dT is pretty hopeful though that the MA will not require surgical intervention and concluded by saying that he is super-pleased with how smurf is doing - his spine looks wonderful, no indications of scoliosis or hyperkhyposis at this point, knees and elbows look great (although Dr dT had to spend a relative amount of time reassuring Brampies that Sam's hyperextending elbows are more frightening for us than what they are for Sam). Dr dT had a look at Sam's little fingers, five of which are unable to straighten/flatten (excluding his two little thumbs, of course). He appeared a little concerned and is going to put a call through to hand-OP to request that our next appointment gets moved up from September.

This morning we were back at Dr B to re-examine Sam's ears. The right ear seems to be progressively on the mend, however his nose is still very inflamed and irritated. We are going to do another seven days with Betnesol, hoping for complete healing, failing which we'll head off to the ENT for a nasal scope. Thankfully, for now though, grommets seem to have been taken off the table. We have Sam's urology appointment coming up the week after next, as well as opthalmology. With regards to the operation to bring his testes down, I was kind of hoping we could couple it with the original plan of just correcting his hallux varus at three years old, but Dr B strongly recommended it gets sorted out ASAP, which is just as well seeing as his little left foot will only be operated on in another three years time now.

OMW - what a long post. I blame it on a busy little smurf, too many doc appointments and shocking energy levels at the end of the day which prevent me from posting shorter, more regular updates. More than likely our next post will have been published by a rather bruised and swollen-faced Mamma!