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)

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 :  So...do 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!

2 comments:

  1. Congrats on this anniversary! I'll be thinking of you during your surgery...and don't AVOID talking to Sam about being gone and coming back. I'm sure he understands more than you give him credit. He will be ok! And probably grow stronger too! Hugs to you and Chris...

    ReplyDelete
  2. Once again I am stunned as to how you just manage to keep us all so entertained and inspired with your wonderful humour and caring. No wonder God gave you such a precious gift to care for and what an amazing job you are doing. Praise him for Chris and Dad who are always ready to step in when you need to do something. Praying for you today and you know what, Sam has so many angels that watch over him he is going to be just fine. You just take care of yourself just for today......love to you all

    ReplyDelete