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)

Monday, September 21, 2009

A challenging few days....or ten...ended off with a coo!

The passed ten days or so have been quite challenging...all filled with seemingly "minor" issues which cause major problems. Sam's congestion reached a point where he almost completely stopped drinking. With his weight still at a scary 3.1 kgs for his four months, he can hardly afford to be cutting back on his milk. We tried to get an appointment with his current paed, who is about 45 minutes away from us, but when it didn't look like the appointment was going to happen, I took a chance and called Meghan and Luke's old paediatrician and luckily, after explaining the situation to his assistant, we were slotted in that very afternoon instead of having to wait two weeks for one. The bad news, Sam had an ear infection and was put on a course of antibiotics. The good news, this paed has a fourteen year old Rubinstein-Taybi patient, which is wonderful. So he's worked through all our current problems previously with another set of anxious parents.

He also referred us to an orthopaed for Samuel's little feet (the left one is quite severely turned in and upwards) as well as an NDT Physiotherapist. We saw the orthopaed last Thursday who sent us for a scan and some x-rays, not of Sam's feet but of his hip which he was afraid was dislocated due to a "clicking" noise whenever he moves. We went for the scan and x-rays on Friday and luckily the hip is not dislocated. So the plan ahead, we will look again at his thumbs when he is six months old. For now, we have been given some exercises to do with his little foot which will hopefully stretch it. If there is no great improvement within the next four weeks, then they are going to put his little foot into plaster. At least surgery is not our first option. His spine for now seems perfect (fear of RTS tendency for curvature of the spine). And all through this Sam's drinking was getting progressively worse....topped off with the added strain of Meghan's school concert which took place Mon-Thurs every night for two weeks, things were not going well.

But after sitting through an hour's unsuccessful drinking session which inevitably ends with Sam screaming uncontrollably, when we feel like we simply just CANNOT go on anymore....that we are not strong enough to take care of this little angel....Sam would throw in a surprise, a little something that would completely erase every bit of frustration, anger, despair and helplessness....his new found "language"....a coo!!!! Although 90% of the time his "speaking" is completely distorted by the excessive and ever-present phlegm in his throat, just the thought that he is trying to communicate with us and doing something "normal" babies do, completely uplifts you and gives you a little bit of strength and spirit to go on a little longer.

Thankfully, the passed two days have gone so much better and it is in fact Meghan that is sick now with sinusitis - aaaahhhh....the joys of chronic allergy sufferers and this time of the year. Unfortunately Meg has been "banned" to only certain area of the house as, now that there's an infection, she can make Sam sick. So....we start treading on egg shells again looking anxiously for any signs that he might be getting sick. Roll on Summer!

5 comments:

  1. Hi Nicky and Chris - just had a glorious 20 minutes to myself so used it to catch up on your blog. Your little man has really come a long way and faced so many challenges already. So have you.

    Just a thought around Sam's congestion. When our Matt was less that a year he has a series of lung infections. For a few weeks he was so badly congested we sort help from a physio (the one based at Hedi's practice, but I am sure you can find one closer to you). She has this big suction machine and also used some "hard patting" movements on the rib cage. She was able to get so much mucous out of Matt it was amazing. We went to her for almost a fortnight. It was the first thing I would do in the morning and at least for the first half of the day Matt could breathe and drink. It might be worth looking into - maybe your new paed can recommend somone in your area???

    HUGS
    Jacqui

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  2. Hi Nicky and Chris, What a beautiful blog you have! It's so wonderful to see your beautiful attitude in the face of Sam's difficulties...much better than mine was! I always say the first year is really hard and then it STARTS to get better. Hugs to you and kisses to Sam. He is so cute!

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  3. ...and I love the name of your blog!

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  4. Thanks Jacqui - we will definitely look into it. We are seeing the ENT on Friday who will hopefully also have something useful to suggest, other than immediately resorting to surgery.

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  5. Hi Cindy - you seem to have done just awesome! Thanks re the name...it was actually Chris' idea so I can't take the credit...oh okay, I will if you insist...LOL

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