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, December 7, 2009

From Zero to 38.8 in 20 seconds!

Okay….well maybe not zero to 38.8 in twenty seconds, but definitely at least 36.8 to 38.8 in twenty seconds….okay maybe not in twenty seconds…more like half an hour. No, I am not talking about the speed at which I am picking up weight (then it would be from 50 to 100 in twenty seconds (kg’s that is), or pretty close thereto). We’re talking about Sam’s temperature on Thursday which, after two convulsions, took us to hospital where we spent that night and the better part of Friday. So, our little Christmas Elf (more about that later) decided that now was as good a time as any to catch a viral infection and throw in a little pneumonia just to make it more interesting. As always, Sam absolutely loved the change in his environment and with the added pleasures of oxygen, a drip and three really uncomfortable looking “probes” (which kinda looked like those clampy-thingies you attach to your car battery when needing to jumpstart it) made it a very challenging thirty-odd hours. But the awesome nurses at the unit made us as comfortable as possible and Sam has a great paed who always makes sure he covers all ground where Sam is concerned and takes his time when speaking to us and seems really concerned, not only about Sam’s welfare, but also with Chris and I, which really makes our lives so much easier.

So, our little man is feeling a lot better today and although we are still having to battle with getting his antibiotic down (loads of fun and games I tell you, which usually involves some serious gagging, screaming, vomiting) he had an excellent night last night and slept from 9pm until 5am this morning – yahooooo!!! But, no, this time I am not foolish enough to say “hopefully the start of a new routine” because I said that the last time and it was a one-in-a-month happening. Daytime sleeping is still not great, but hey – I can live with that as long as he sleeps at night.

Sam was meant to go in for his adenoids and grommets on Thursday, but we are going to postpone that to give him a chance to recover completely. We are also giving neuro-therapy a skip today as well.

But, let’s backtrack a little, Saturday before last we attended our annual Church Xmas dinner and Sam wore a stunning little Christmas hat which my sister bought for him with “Baby’s First Christmas” written on it – it was soooooooo cute and of course awarded him loads of attention when we walked in (pics to follow soon). The eating was a bit tricky (with Chris and I doing the usual eat-and-hold swap) but it was great to spend a wonderful evening of fellowship with our friends and also for me to be doing something remotely “social” again as my outings now seemingly only consist of medically-related appointments.

So things are slowly winding down now as all the year-end functions like prize-givings, concerts, ballet recitals, etc come to an end and the start of the five-week holidays begins. We are hoping to undertake a “road-trip” (my first ever at age 35 – blush blush) nothing major, just a two-day trip to my mom in Pearly Beach and then a couple of days with Chris’ folks in Stilbaai – Sam’s health permitting of course. We will first have to see how the next couple of weeks go – we have sort of prepared ourselves for having to cancel at the last minute if he does not seem strong enough, although the kids would pretty much be devastated I think, so we are holding thumbs…and praying of course…that it all works out okay. And of course we have checked…and double-checked…with all related parties that there is some sort of emergency room or doctor on call in both towns as they are both fairly small, quaint little towns a fair distance away from “bigger” towns.

HUMILITY

…..is facing the truth. It is useful to remind myself that the word itself comes from “humus”..earth…and, in the end, simply means that I allow myself to be earthed in the truth that lets God be God and myself His creature. If I hold on to this it helps prevent me from putting myself at the centre and, instead, allows me to put God and other people at the centre.

(Esther de Waal – Living with Contradiction)

Friday, November 27, 2009

STANDING STILL........

….that’s what it feels like Sam and I have been doing for the last two weeks….standing, suspended in mid-air, surrounded by a glass bubble which is like one huge, circular tv upon which we watch the world carry on with all its normal daily happenings.

Samuel is not doing great at the moment – his daily sleeping is virtually non-existent and his nightime sleeping is filled with constant “snorking” and sudden gasps for air every time his tiny little airways become obstructed, which means continuously interrupted sleep. So, as Monday’s appointment with the ENT looms, it looks like we are with almost certainty heading for an operation. The thought of his tiny little 3.5 kg body being put under anaesthetic terrifies me, nevermind the RTS-related complications with anaesthetic, we have to believe that this will be the best for our little Sam and so will have to trust in God to keep him safe should we need to go this route.

On a positive note – Sam’s neuro therapy on Monday went great, without Meghan’s rattle-shaking assistance! By ‘great” I mean that the first fifteen minutes was scream-free, which is a major step for us. Sam’s head control does seem to have improved once again, after taking a bit of a dip, and he managed to push himself up completely on his two tiny little matchstick arms, when placed on his tummy (yip – which he still loathes….his arms that is, not his matchstick arms….LOL).

So, we wait in nervous anticipation for the outcome of both the ENT and paed’s appointments on Monday.

“Jesus came to give us abundant life, but not a trouble-free life. Part of the abundance He offers those who belong to Him is the power of his Spirit to overcome what others cannot. As believers, we have the power of the Holy Spirit to help us deal with circumstances differently than non-believers do.”
Joyce Meyer

“…In this world you will have trouble. But take heart! I have overcome the world.”
John 16:33

Friday, November 13, 2009

A TIME FOR EVERYTHING

ALONE TIME FOR MOM

All I needed this morning was a half hour alone, thirty minutes of
peace and quiet to help preserve my sanity. No mom-do-this,
mom-I-need-that, mom-he-hit-me, mom-I-spilled-juice-on-the-couch. Just me, a hot Calgon bath and solitude.

I shouldn't dream so big!

After getting the two oldest off to school, I settled the youngest in front of Barney and said, "Honey, listen closely. Your mommy is going to crack. She's losing her marbles. She's teetering on the edge of permanent personality damage. This is happening because she has children. Are you following me so far?"

He nodded absently, while singing, "Barney is a dinosaur in our imagination...."
"Good. Now, if you want to be a good little boy, you'll sit right here and watch Barney while Mommy takes a nice, hot, quiet, peaceful, take-me-away bath. I don't want you to bother me. I want you to leave me alone. For thirty minutes, I don't want to see or hear you. Got it?"
Nod.
"Good Morning boys and girls..." I heard the purple wonder say.

I headed to the bathroom with my fingers crossed. I watched the tub fill with water. I watched the mirror and window steam up. I watched the water turn blue from my bath beads. I got in.
I heard a knock on the door.

"Mom? Are you in there Mom?"
I learned long ago that ignoring my children does not make them go away.
"Yes, I'm here. What do you want?"

There was a long pause while the child tried to decide what he wanted.
"Um...can I have a snack?"
"You just had breakfast. Can't you wait a few minutes?"
"No, I'm dying. I need a snack right now."
"Fine. You can have a box of raisins."

I heard him pad off to the kitchen, listened as he pushed chairs and stools around trying to reach the raisin shelf, felt the floor vibrate when he jumped off the counter, and heard him run back to the TV room. I sank back into the water.

Knock, knock, knock

"Mom? Mom? Are you in there, Mom?"
Sigh "Yes, I'm still in here. What do you need now?"
Pause "Um...I need to take a bath too."
Right!
"Honey, can't you wait until I'm done?"
The door opened just a crack.
"No, I really need to take a bath right now, I'm dirty."
"You're always dirty. Since when do you care?"
The door opened all the way.
"I really need to take a bath, Mom."
"No you don't. Go away."
He stood in the middle of the bathroom and started taking off his pyjamas.
"I'll just get in with you and take a bath too."
"No! You will not get in with me and take a bath! I want to take my own bath. I want you to go away and leave me alone!" I began to sound like the three-year-old with whom I was arguing. He climbed onto the edge of tub, balancing carefully and said "I'll just get in with you, Mom?"

I started to shriek, "No! That is NOT okay! I want my own bath, all by myself! I don't want to share! I want to be alone!"

He thought for a moment and said, "Okay. I'll just sit here and you can read me a book. I won't get in, Mom, until you're done." He flashed me a knockdown charming smile.

So I spent my morning "alone time" reading One Fish, Two Fish to a naked three year old who sat on the edge of the tub, with his chin resting on his knees, arms wrapped around his bent legs, slight smile on his face.

Why fight it? It won't be long before I have all the alone time I want...and then I'll probably wish I had a lot more together time.

(by Crystal Kirgiss from More Stories for the Heart)

THERE IS A TIME FOR EVERYTHING,
and a season for every activity under heaven;
a time to be born and a time to die,
a time to plant and a time to uproot,
a time to kill and a time to heal,
a time to tear down and a time to build,
a time to weep and a time to laugh,
a time to mourn and a time to dance,
a time to scatter stones and a time to gather them,
a time to embrace and a time to refrain,
a time to search and a time to give up,
a time to keep and a time to throw away,
a time to tear and a time to mend,
a time to be silent and a time to speak,
a time to love and a time to hate,
a time for war and a time for peace.
Ecclesiastes 3:1-8

So why the picture of my poor neglected mountain-bike, hanging neglected and cobwebbed in the garage? Because I find myself being a complete victim of time...I am a clock-watcher of note and would love to be able to manipulate time, well who wouldn't? When Sam is asleep, time just can't go slow enough for me...in fact when I am standing at the stove, boiling up his Nestargel (thickening agent) I get a knot in my stomach and think "Please don't let him wake up yet, just another ten minutes...just to finish his milk..." (I mean seriously though - is it just a completely impossible notion that there actually might be a baby out there who has reflux AND allergies? Well apparently it is because I've yet to find a HA and AR baby formula) And then I find myself wishing the time away, to a time when Sam is picking up weight, holding his head up, crying less! And to a time when he is settled enough for us to leave him with Brampies for just thirty minutes so that we can take a quick ride on our bikes and even eventually venture out for a quick bite to eat on our anniversary. I was complaining of this very thing yesterday morning to a friend who had come over for a cup of tea and a croissant...and muffin...and cupcake (and I wonder why, six months down the line, I haven't lost my pregnancy weight yet LOL) while we took turns to eat so that one of us could hold a moaning Sam. As she was leaving she asked me if I did have someone who would look after him, would I leave him? And I said NO!

Danila Liebenberg describes "time" to children, in her book Time For Two as follows :
"Have you ever separated the sections of a naartjie and eaten them one by one? Once you have eaten a section, it is gone. You cannot get it back. Time is like a naartjie - every day has many sections called hours. Just as the sections of a naartjie become fewer when you have eaten a section, hours also become fewer throughout the day. The hours which have been used are gone forever."

And so it made me realise that, as much as what I am always wishing us to a "better" time...so much time has already passed...and we really are already in a better place than what we were six months ago. So no more wishing away my naartjie sections...but rather taking the time to savour the flavour of each and every one, even if there is an occasional pip that needs spitting out! (Elegant, aren't I?)

Thursday, November 12, 2009

PERCEPTION

“The world can be a forbidding place for children, especially if they feel that they somehow don’t measure up. A relatively minor difficulty can easily develop into a crisis of confidence, particularly when a child must listen to constant reminders of his or her deficiencies.”

“I was sustained, though I wasn’t fully conscious of it at the time, by the faith I had developed through my parents’ teaching and example. I believed in a loving God who valued me for the person I was, who – even though I was unworthy – sent His Son to die for me.”

“If your children understand in their hearts that the Creator of the universe loves them personally and has sacrificed His own Son on their behalf, they will enjoy a much healthier self-concept and be far better equipped…”

“As your children grow, any deviation from the norm – in height, weight, hairstyle, skin colour, voice, etc – will be pointed out by their peers and used to embarrass them. Sometimes even adults, who should know better, will play this cruel game. It is your job as parents to counteract these hurtful comments with love. Encourage your children. Remind them of their strong qualities and abilities. Above all, employ Scripture passages such as Luke 16:15 to teach your kids that the misguided values of man are often the very opposite of the values of God : For what is highly esteemed among men is an abomination in the sight of God”

(extracts : James Dobson)

“God does not judge by external appearance…” (Galatians 2:6)

“You created my inmost being, you knit me together in my mother’s womb”
(Psalm 139:13)

Meghan’s Contribution :

“Now faith is being sure of what we hope for and certain of what we do not see.”(Hebrews 11:1)

Wednesday, November 11, 2009

Welcome Payton

Sam and I got together this morning with our good friends, Jacqui and Matt, and also met for the first time new RTS mommy, Tammy, whose little baby, Payton, was born almost two weeks ago. Meeting Tammy brought back many memories and emotions about those first few days after hearing Sam's diagnosis and I cannot believe that this coming Sunday is already six months since Samuel was born.

Jacqui and Matt (and a glimpse of Sam in the top-right corner)

Yeah Yeah! Pose for the camera - just give me a sec..if I turn my hand just a little to the left...it might just fit!



Such a charmer!

The first thing I remember is absolute fear - fear of an unknown syndrome, an unknown path, an unknown future...but most of all...fear of being alone in this RTS-world. Getting to know Jacqui, Lloyd and little Matt, as well as my daily text-buddy, Vickie, has been so crucial to being able to find our way. Everyone wants to....needs to belong somewhere...and having such an instantly close bond to families we basically have not known for very long, has made the transgression from the typically "normal" world we once knew to the still largely undiscovered RTS-world we've become part of, so much easier and even a little exciting. And so we warmly welcome Tammy, Tayla and Payton to our world.


It's also always such a treat to get to see Matt - who is such a precious little boy - and to hear about all the wonderful things Jacqui and Lloyd get up to with their little angel...it makes me want the next six months (or twelve...or eighteen..okay - I'll settle for six) to simply fly by...and yet I am almost scared of missing something new that Sam does or conquers or, in actual fact, any of my children. Just this last week Sam's big brother, Luke, started shaving for the first time (I threatened to post the pic on the blog, but don't want to embarass the poor kid) and I can still remember the day he was born like it was yesterday. I still remember Meghan's first day at "big school", almost two years ago...remember her crying her big blue eyes out, remember the teacher having to pry her finger-by-finger from my leg and holding her in a tight grip while I make a dash for the gate...I remember it like it was yesterday. Oh hang on - it WAS yesterday....okay, well last term at the very least..no...SERIOUSLY! Meg has had some separation issues and right up until last term we would still sometimes have tears in the morning when dropping her off at school. But the passed few weeks, she politely tells us we can go when we start walking her to her class. Let's hope that the first day of Grade 3 doesn't find us regressing.


Anyway, Sam is doing okay and has actually had quite a long nap this afternoon...YAHOOOO...hence me being able to update the blog (what washing, cleaning, cooking???) It's all about prioritising, after all! He is still very intrigued by his little hands, which regularly find their way into his mouth now - yip, even that little thumb. He also holds his rattle for a little longer, so every day there seems to be some type of progress, even though its really teeny, weeny, smidges of baby steps. He is such a character though and is extremely "verbal" and loves his new found vocabulary consisting of (time for creative spelling) goof, bffff, ggggooo(you have to "roll" the g), coo, coof and sometimes a combo, like goof-bffff (don't laugh - him and I often have like ten minute conversations in our newly-learnt Samglish). The other night, after his usual 1am feed, while I was trying to get him back to sleep he lay looking at his (unbeknown to him) sleeping dad who, at regular intervals, let out a rather loud snore. Obviously Sam thought this was an additional Samglish word, so after each snore he would promptly respond with goof, or coo, etc - you get the picture. Although it was quite funny in the beginning, after five minutes it became really old and so I had to ask Chris to please turn over so that I could get Sam to sleep. And something else that I have found absolutely FASCINATING is that Sam "talks" (Samglish of course) in his sleep. I have never heard or seen anything like it, I mean, Luke and especially Meghan talk in their sleep, but they at least waited until they had mastered their language a little more...what a precious little elf he is.


Mmmm..what shall I do today? Oh, I know - lets have a look at my hands - it just NEVER gets old!

Thursday, October 29, 2009

Now What?

First things first....Sam's visit to the ENT Specialist went better than I expected, for two reasons. One : Although he did cry a bit (Sam, not the ENT) it was nowhere close to his usual hysterical , out-of-control crying and Two : I was really worried that the ENT's first course of action would be to put Sam under aneasthetic and put in grommets but our first plan is to treat him with a cortisone nasal spray for a month to see if it doesn't decrease the amount of mucous he's producing, which is actually what is causing the fluid build up in Sam's ears. If this doesn't work and we do need to resort to the grommets and taking out his adenoids, his ENT reassured us that he works with an excellent paediatric anaesthetist and said he would first set up a consultation with her for us where we can discuss the usual problem RTS kiddies have with anaesthetic like trachea collapsing, irregular heart beats, etc. So that put us a little at ease. He also suggested that we change Sam's formula, which we've also done.


Sam's physio session on Monday also went better than usual...but thanks to Meghan I am afraid. I couldn't take him in the morning, so Meghan was already home from school when we went. Just as Sam was about to go off (after a whole fifteen seconds) Cathy asked Meghan to shake Sam's rattle to distract him and it worked like a charm...well for Sam and Cathy at least, not sure how much Meghan enjoyed it. It was the most work Cathy's managed so far with Sam and he even sat for a period of about three minutes, completely supporting himself on his two tiny little matchstick arms...and they really are like little matchsticks...he's never looked so small as at that moment, this tiny little smidge of a person doing something which, if you don't know how old he really is, looks way to "grown-up" for him.



Spot the doll!
But something has gone horribly wrong since then....our Sam is back on sleep strike during the day, but SERIOUS sleep strike. On Tuesday the longest he slept for was 20 minutes....20 MINUTES!!!! Do you know how much you can fit into 20 minutes, when you need to take a shower, wash and sterilise baby bottles, tidy the house at least somewhat, eat something yourself and when just making his formula now takes almost an hour alone with first having to prepare the gel thickener. So when I went to sleep onTuesday I hoped that he'd just had a bad day, but then Wednesday was the same...so when I went to sleep on Wed I hoped he'd just had a bad TWO days....and then would you believe he slept from 8pm on Wed night until 5am on Wed morning and then had another 3 hour and fifteen min nap on Thursday morning and I thought...YAHOOOOOOOOO...whatever the problem was it solved itself (aren't those just the best problems to have?). But by yesterday afternoon he was back on strike and did his usual three hour wake-ups last night and back to no sleeping again this morning. So now what? I cannot figure out what it is that so quickly and drastically changes his sleeping routine. Weird.

Anyhoo....Meg and I are off to the ballet tomorrow....I am not sure who is more excited :-) Can't wait!































SAM THE CONQUERED :-(

Yip, I am afraid that Sam’s previous conquests are slowly and surely becoming unconquered (is there such a word?). We seem to be back at square one over the past twenty-four hours…there’s no drinking, no sleeping, laboured breathing and no pooing happening to speak of….three and a half months to get right back to where we started on the day he came home, 15th July, (and only 700 grams heavier I might add). Although at least then he still had his feeding tube in, so any milk he wasn’t taking with the bottle was going in through the tube. Don’t have a clue what’s up. So roll on 2:30pm tomorrow afternoon for our appointment with the ENT (do you think it’s possible his constipation could somehow be connected to his ears, nose or throat? Just checking – you never know!) Okay, so maybe not ALL the issues will be sorted out tomorrow…but hopefully most of them, just in time for Weekend Syndrome….YEAH! Well, thanks to Olla-Flowa, I got my hands on a copy of “Baby Sense” and have tried some of the suggested methods this morning and after even getting a chance to do some of his physio this morning, so far he has been sleeping for just on forty minutes now, which is already an improvement to his 25 minute naps. Let’s hold thumbs! Wow, what a weird thought…..Sam literally can’t “hold thumbs” like small children tend to do when using that expression….at least he’d never have to put any effort into hitchhiking, his thumbs are automatically designed for that. Oops, better make sure he never wanders onto a road on his own, he might get picked up whether he likes it or not…LOL!

I know I promised some pictures by now but I unfortunately can’t upload any pics from the home pc because the system is just too slow – Chris has promised to do it today from work (hope you’re feeling the pressure Love!) But we do forgive him, he has managed to get hold of two tickets from work for the Nutcracker Ballet on at the Baxter Theatre next Saturday (originally meant for him and I but Sam is still not settled enough to be a candidate for babysitting) so Meg and I are going to have some “Mom-and-Daughter” time, which I presume she is extremely excited about as she left the house this morning calling out the car window “Yeah, an hour and a half of mom-and-daughter time”.

“Can a mother forget the baby at her breast and have no compassion for the child she has borne?” Isaiah 49:15

(mother) “Lord, it is so hard to balance the needs of my children with the realities of life. Help me to be the best mother I can be, grant me the wisdom to make wise choices and give me peace when I am doing all that I can. Amen.”
An extract from Dr James Dobson’s book “Night Lights for Parents”

Wednesday, October 28, 2009

AN XMAS WISH LIST OF NOTE

For a little light-hearted reading, Sam's big sister Meghan (8 years old) is an extremely creative little girl...which means very little goes to waste in our home as things like empty cereal boxes, empty (well most of the time) toilet and paper towel holders, foil, plastic muffin trays, you-name-it are immediately whisked away to be transformed into all sorts of wonderful creations. It also means that we go through paper and sticky-tape like most homes go through butter...LOL! Obviously I am always moaning at her as every afternoon the lounge gets turned into her "workshop" which takes hours and hours of asking her to tidy it up and her bedroom is an absolute trainwreck, but also because her constantly using the sticky-tape, foil, etc is becoming fairly expensive. So she decided that her next best bet was good ol' Santa Claus and she has made up the following Christmas Wish List which I thought was quite entertaining...please note that I have left all items as written in her own spelling :

PDA Glue (don't even know what that is)
glue stick
tinfoil
Bady Born food (Baby Born)
Bady Born nappies
glitter
poster paint
kard board
paper
pencil
colouer wool
modelling caly (clay)
felt-tip pens
cotin buds x 2
chalk pastel
rubers
sticky-tape (THANK GOODNESS)
pipe cleaners
googley eyes (LOL)
paint brushes (because the fifty she has isn't enough?)
pom poms
fake jewellery (doesn't aim high, my little girl)
colouer card
tissue paper
paper plats (just not sure at all - thought it might be paper plates)
colouer paper plates
torches (not sure where this fits in...and not just one torch we note)
battery x 20 (she definitely wants to be prepared for something)
masking tape
cotin wool x 2

So for the first time ever Meghan might actually get EVERYTHING she's asked Santa for this year.

Tuesday, October 27, 2009

A Baptism and AA (Angels Anonymous)

THE BAPTISM : Our little Sammy was Baptised on Sunday morning, amidst his usual breath stealing-spluttering-gagging-pig squealy-out of control screaming! Hee Hee! There’s one thing you have to say about Samuel – he truly is passionate about his cry-cum-scream. Hopefully this is a sign that he definitely sees vocal expressions as his choice of communication. I was more nervous on Sunday morning than when Chris and I got married and with excellent reason it seems, Sammy lived up to my expectations. In his defence, his paediatrician believes that Sam suffers from something called Sensatory Integration which makes him hypersensitive to…well…basically EVERYTHING! And that’s why he also seems to suffer from my own self-discovered and self-diagnosed “Weekend Syndrome” – when it’s just Sam, Brampies and I at home during the week Sam is pretty relaxed and easy-going (okay – well most of the time), but over weekends when I tend to spend more time in the rest of the house as opposed to us mainly staying in the bedroom, he becomes quite crabby and irritable. So, we’ve been advised to read a book called “Baby Sense” which my best friend, Olla-Flowa, has sent home with Chris today – I can’t wait to tuck in! At least Sam got to meet some of his cousins Jenna, Micaela, Kayla and Dewald for the first time…which was wonderful and it was a great opportunity to catch up with good friends after the service over a cup of tea and piece (or just maybe “pieces”) of cake, in between babies being fed!

Healthwise – Sam is feeding quite well at the moment and (shush-don’t tell his paed) I even gave him half a teaspoon of rice cereal this morning which he “ate” unexpectedly well and didn’t even gag once and still finished his whole bottle an hour later. His physiotherapy is still going along quite slowly due to Sam’s inevitable screaming through the entire session and, although his head control is still exceptionally poor, we have started to notice that his left foot is loosening quite well. He is also reaching out to touch objects now, although he misses most of the time, and keeps his right hand open quite often and tries desperately to suck his little thumb, but although he manages to get every other finger in this tiny mouth, that angled little thumb just makes it a mission impossible. We still need to have an x-ray of his neck done and we are seeing an ENT specialist on Friday afternoon as, even after two courses of antibiotics for ear infections, he still has fluid in his ears and his nose and throat remain extremely mucousy. Unfortunately, due to financial restraints, we’ve had to “choose” one of the above, so we are rather seeing the ENT first and will then do the x-ray next month. It’s a fairly heart-wrenching situation, no-one wants to have to select which of your baby’s medical treatments he most needs…you want to be able to attend to all his needs, immediately. And that’s why sometimes, even though I have been told so many times that God would only give a baby like Sam to special parents (and I never tire of hearing this) I do wonder though if perhaps the address on this particular stork delivery package was not maybe smudged by rain or something because, honestly, I can think of a hundred other parents who to me seem financially, emotionally and spiritually more suitable to raise a baby like Sam. Emotionally I see myself as a fairly “weak” person – I stress too quickly and quite frankly can become very neurotic at the best of times. Spiritually – I am a fairly “new” Christian as, even though I grew up going to church on Sundays and attended a convent in primary school and prayed sometimes, it all just sort of became habit and I never truly understood the meaning of what Christianity was and it was only a couple of short years ago that, with the guidance and support of my, also, life-coach Olla Flowa, that I really felt committed enough and felt a true desire to want to walk with the Lord. So, surely more “mature” and steadfast Christians would have been a better choice? And financially…oh-my-word…there are just no words to describe how dire our financial situation is at the moment. Sam’s ongoing medical costs, thanks to an exhausted medical aid, are just eating up our entire income every month, which is already compromised due to me not being able to go back to work. So surely more financially stable parents would have been a better choice, parents that could send Sam for every therapy session, x-ray, specialist appointment he needs. But, for whatever reason, God chose Chris and I to be Sam’s mom and dad and I have to trust that he believes we can do it and that he will help us provide Sam with everything he needs. And so I would pray every day that God would answer our financial needs…whether it be by winning the Lotto (just kidding)…winning a much-needed second car…striking oil in the backyard….winning a complimentary bond settlement prize…..stumbling across a bag filled with R100 000.00 in the road, but so far none of these things have happened yet (I know, it sounds a bit ambitious but you have to admit that a bond-settlement competition would be AWESOME – get on it (bank) and don’t forget where you got the idea). And then I remember a story about the guy who was trapped on the roof of his house during a terrible flood and who kept praying that God would save him and every rescuer that came his way he would refuse, saying that God was going to save him but then he drowned and when he faced the Lord in Heaven he questioned why God hadn’t saved him and the Lord stated that he had sent several to save him but the man had refused. And that brings me to….

ANGELS ANONYMOUS : A few months ago one or two people suggested to me that we put our banking details on Sam’s blog as there are perhaps those who, knowing that we are taking some strain financially, would like to make a donation. Although we dearly appreciated the thought, we just didn’t feel it was “right” and to be honest, the embarrassment and shame of admitting that we are struggling prevented us from doing it (guess I just got over that inhibition by posting it on the blog!!). But here I am wondering repeatedly what it is we are doing wrong that is preventing the Lord from answering our needs and in the process am overlooking the “rescuers” he is sending to save us. So, although we still aren't comfortable with taking money from others, we do want to say Thank You from the bottom of our hearts to all the angels we have in our lives who constantly offer their support (I don't mean financially) and prayers and confidence in our abilities…it makes what could have been a cold, dark and deserted road become a luscious green path filled with beautiful flowers, precious butterflies and heavenly-filled scents.
P.S. Chris is going to upload some pics tomorrow – don’t forget to take a look!

Monday, October 12, 2009

HOPE

For a prisoner on death row, a pardon offers hope of freedom. For the spiritual prisoner on death row because of the consequences of sin, God offers ultimate hope by forgiving our sins so that we can be with him in Heaven forever.

When life seems impossible, God brings eternal hope. Hope is essential to our perseverance, our getting through the tough times. Without hope we give up. Hope requires one thing though – a trust in the One who brings real hope.

The Lord is my inheritance; therefore I will hope in Him! Lamentations 3:24


THE VOMIT MONSTER COMETH

After a weekend filled with Sam’s worsening reflux we have decided, in keeping with Chris’ love for rugby, to rename him Sam “Puke Watson” de Beer….with quite appropriate timing as we have tentatively booked his Baptism with our Pastor for 25th October (not the vomitting of course, the re-naming...LOL). Seriously, we are exhausted…most hour long (and sometimes even longer) feeds of just 80 mls inevitably end with the entire feed being evenly distributed all over Samuel…from mouth to broad little toe..and even managing a serving in his nappy. So I have cancelled physio for today, for both mine and Cathy’s sake, and we are back to our two/two-and-a-half hour feeds until something gives. I am hoping with all my might that Sam’s complete regression where his feeding is concerned is simply a combination of the ear infection and havoc the antibiotic is wreaking on his little system.

Even more seriously, one of Sam’s best little friends, Jodie, is gravely ill in hospital with pneumonia, which she has been battling with for weeks already so we are praying for her and hoping that she makes a complete and speedy recovery so that she can go home soon. Jodie’s mommy and I have leaned immensely on each other over the past few months (although we are in two completely different cities), as we each learn to deal with our fairly recently diagnosed RTS angels and both now know the very true meaning of the saying “live one day at a time”. It has been such a blessing to have someone to share all our worries, frustrations, fears and…(although scarce at this stage)….joys with, and who is at the exact same place that we are at the moment, as we learn to say “so long” to our “normal” world for a while and start our journey into RTS-land. And still, even though some days it’s hard to remember this – there are just so many babies and children out there whose diagnosis’ and futures are so much more frightening and challenging than what we are facing and every day we have to remind ourselves that we are truly blessed!

Sunday, October 11, 2009

MISSION ABORTED

And so the "dummy hunt" was stopped dead in its tracks, much to my dismay. After another screaming consultation with our paed on Thursday (guess those first nine weeks in NICU has put Sam just a little "off" doctors....and physiotherapists...and speech therapists.....and orthopaeds....I don't know, I seem to be sensing a pattern here :-)) Anyway, our little (and I mean LITTLE as in L-I-T-T-L-E...Sam has picked up a total of ZERO GRAMS in the last eight days making him a total of (still) 3.3 kgs for his almost five months) has another ear infection, so it seems as if his immune system is just so very weak at the moment, hence the recurring thrush so the fewer "foreign" objects we stick in Sam's mouth, the better chance we have of trying to keep him germ-free. Guess I will just have to find another way to calm him down when the hysteria hits. Something oh so cute though is that Sammy has discovered his hands. Whenever I put him on the change mat for a nappy change he spends endless minutes studying them and slowly moves them closer and closer to his face, to the point where he goes completely squint. If that little thumb was not so incredibly angled, I am pretty sure it would have landed up in his mouth already. It's quite funny how, regardless of all the lovely stuffed animals and rattley toys we've bought him, the objects which arouse the most amount of fascination and "communication" from him are...the ceiling fan, the headboard, the ceiling...I know - his standards aren't terribly high for potential friends at the moment, poor kid...and now recently, his hands. This afternoon he was lying on his back, on Chris' chest...and every now and again one of his new-found friends would pop into sight..and he would smile every so sweetly (and of course go squint) at those little hands, as if to say "Oh, how wonderful to see that there's more of these friends in the lounge, as well as the bedroom!

Anyway, our evening out at the Spur on Wednesday evening went much better than I expected..Sammy basically slept through the entire evening. By the time he woke up we were already paying the bill and getting ready to leave. And of course, as usual, he caused a stir amongst the watrons with his charm and good looks...although I must admit, I think his main attraction is that unbelievable head of hair. Did I mention we've already had to give him a hair cut!!! And, horror of horrors, he is getting balder and balder by the day - but only mainly on the left side. He is sure to lose at least 5cm off his height should his little "Tintin-style kuifie" go. On Friday morning we went to visit one of Sammy's new friends, Amy Reece (LOL Siobhan)and this outing also didn't go too bad, it seems as if Sammy is slowly but surely getting more used to being out and about - although fear of those screaming hysterics is still making me a little weary. Maybe once he's completely healthy (if ever) I will feel less anxious every time we need to go somewhere.

Right now though, Sam is actually pretty sick - he is not drinking at all and the antibiotic has upset his tummy terribly, so he has the runs on top of everything else....which is going to do wonders for his weight. Not even sure we should attempt physio tomorrow. Will see how the rest of the day pans out.

Tuesday, October 6, 2009

ADVERSITY

Troubles come with a multitude of names - accidents, afflictions, bereavement, calamities, difficulties, disappointments, disasters, failures, hard times, hurts, miseries, misfortunes, ruin, sufferings, tragedies, trials, tribulations or woes. They come sometimes unexpectedly, and sometimes after repeated warnings. Adversities may be temporarily discomforting or permanently disabling...even life threatening or life taking. Some adversities are merely higher hurdles over which we can climb with a little more effort, while others permanently wound us and we must find a way to triumph despite them.

Nowhere is this concept more clearly presented than in the Bible. The one thing you can count on about adversity is that IT WILL COME! We all will have troubles, so it is not a matter of will we or won't we - the issue is what we will do with adversity when it comes.

GOD'S PROMISE
"When you go through deep waters and great trouble, I will be with you. When you go through rivers of difficulty, you will not drown." Isaiah 43:2

Kingda Ka

People often refer to challenging times as being on an emotional rollercoaster....well if challenging times were rollercoasters, we just did a couple of rounds on the Kingda Ka (one of, if not the, highest roller coaster in the world). So, it all started on the 25th September....Sam went for his Rotovirus and Infra-6 vaccinations. We were told that he would probably experience a little bit of a fever, but I was also warned that the later a Rotovirus vaccine is administered the more severe the side-affects are....so, taking into account that Sam was 20 weeks at the time when he should have had it at six weeks.....we braced ourselves. (We had to wait until his drinking improved before he could have it). Sure enough at 11pm on Friday night Sam's temp went up and he was generally crabby and miserable. The following Saturday he battled even more than usual to drink and also vomitted so we started him on some Hydrol. By Tuesday he was still not drinking and was extremely phlegmy...he was also coughing and gagging alot. So, after some advice, I changed his formula from Infacare Reflux to Nan HA but Mr de Beer did not like the taste of the Nan AT ALL....and still drank as little as possible. In the space of 24 hours, from Friday to Saturday , Samuel drank a total of 110 mls...so we decided to take him to the GP, who could not find anything wrong with him. Saturday afternoon, after throwing up again, we took him down to the ER as, thank goodness, his paediatrician was on call. After a scream-filled examination and threats of having to admit him, Sam's paed told us that Sam has a viral infection. He also felt that I changed his formula unnecessarily and thought I should change it back to the Infacare...much to poor Chris' dismay - Chris has being buying Sam's formula in bulk for the month, which he'd done on the Friday before...so when I changed it to the Nan HA off Chris went to Pick 'n Pay, boxes of formula and slip in hand to change the Infacare. Then, after Saturday, off we went again, Nan HA and slip in hand...to change back to the Infacare. We must look like a couple of first time, blundering parents I am sure...and to be honest, that's how I feel. I really thought, despite all the advice about the various challenges we were going to face, that surely after almost five months I would have felt a little more confident that, if nothing else, at least I was feeding him right. But every time we think we've found a way to overcome a problem area, our success is shortlived.

Anyway, other than that, Sam has had two physio sessions already, with yesterday's being the most recent...and he screamed blue murder throughout the ENTIRE session. But, a small victory, his therapist can already feel that the band in his left foot is a little looser, which is great as it means we might be able to avoid the plasters. But Sam still has LOADS of work to do and he is not the most willing little patient let me tell you. Although, in his defence, he is not well which might have contributed to his complete horror at having to roll on a ball (which stood up like a ten-storey building next to him), lie on his stomach (boy does he DETEST this), have his hips rolled up to his chest (no, his hips DON'T lie)...the only time he calmed down was after Cathy swung him back and forth for a while on his tummy, but even that didn't last long. So the session finally ended up with him crying so hysterically that he threw up on her. Needless to say, next Monday's looming session is already giving me anxiety attacks.

Where we are today - Sam is drinking much better - yah! Still not great, taking into account that Sam's seven-week-old friend, Janke, drinks 150 mls bottles at a time compared to his 85 mls...but maybe that's why he only weighs 3.3 kgs compared to her 4kg+...but I am so relieved when he finishes his 85 mls that he could have just polished off a whole litre of milk. He is also losing his hair - yikes! That's like his trademark and gets so much attention when we take him out anywhere. I cannot imagine what he is going to look like bald (is he too young for hair transplants?) Hopefully his new hair grows quickly - one good thing is being able to wash that baby shampoo off properly because, quite frankly, I don't think it was intended for such a thick mop of baby hair.

On Thursday we are off to his paed but before that - it is big brother Luke's birthday tomorrow and we are going to venture out for a bite to eat...should prove entertaining, if nothing else. I am just surprised that none of our neighbours have called the police or child welfare on me yet because you would think I was abusing him 99% of the time with the way he screams...but hey, at least we know his lungs are healthy :-) And then, along with Friday comes....OPERATION DUMMY!!!! Samuel refuses to suck a dummy. We have tried at least five or six different dummies, but he either spits it out or gags. I am determined to find a dummy that he will suck on this weekend, if its the last thing I do (okay - maybe not the last, but still.....). It's basically the same process we've gone through with his bottles and most recently, his formula. Never mind that by now we can open up our own secondhand baby shop with all the items we've bought that just doesn't work for him. So, stay tuned to find out how the eating out, paed's visit and dummy hunt went.

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!

Monday, August 31, 2009

Some pics in history




8 days old in dad's arms
17 days old and my eyes are open,
43 days old and sleeping on my stomach.


Friday, August 28, 2009

ASAP

Ever wonder about the abbreviation A.S.A.P.?

Generally we think of it in terms of even more hurry and stress in our lives. Maybe if we think of this abbreviation in a different manner, we will begin to find a new way to deal with those rough days along the way.

There's work to do, deadlines to meet;
You've got no time to spare,
But as you hurry and scurry-
ASAP= ALWAYS SAY A PRAYER

In the midst of family chaos,
"Quality time" is rare.
Do your best; let God do the rest-
ASAP=ALWAYS SAY A PRAYER.

It may seem like your worries
Are more than you can bear.
Slow down and take a breather-
ASAP=ALWAYS SAY A PRAYER

God knows how stressful life is;
He wants to ease our cares,
And He'll respond to all your needs
A.S.A.P.=ALWAYS SAY A PRAYER.

It's been a tough week for Sam...he's battling a terrible cold which he just can't seem to overcome and then on top of THAT, he's throat seemed to be bothering him like crazy the last couple of days so took him to the doc today..and he has severe thrush in the back of his throat. It seems like after every hurdle he makes it over, there's another two waiting in the wings and when he's managed to get through more challenging issues like breathing and feeding, it's awfully frustrating that things seemingly less "threatening" like a cold or thrush can cause him so much discomfort and misery. So, today we apply A.S.A.P. (thanks Diane) and say a prayer for Sam's health, as well as for his precious two friends...Matthew, who is also terribly ill with tonsillitis and Jodie, also battling a cold. We pray that these three little angels get well soon.

Wednesday, August 26, 2009

Conquests to date....

Sam has faced many challenges in the first twelve weeks of his life...and all of them are things we take for granted. First - he could not breathe on his own and required seven weeks on first an oscillator, then a cpap machine, then nasal cannular and finally normal oxygen. While he was struggling to learn to breathe we kept thinking and praying "Oh...if only he could learn to breathe". Then, Sam conquerored breathing - Yeah! But then Sam could not drink - he was breathing on his own but could not leave the hospital because he could not feed. So after two weeks (and nine weeks in NICU) Sam left the hospital with a feeding tube and we kept thinking and praying "Oh...if only he could learn to drink". Then, Sam conquerored drinking - Yeah! But, Sam was diagnosed with sever reflux and so was put on meds and an anti-reflux formula which made him severely constipated, so much so that he could not have a bowel movement without a suppository. And it was awful - it affected his drinking, after two days without a bowel movement he would cry bitterley with discomfort and we kept thinking and praying "Oh...if only he could poo" LOL And then, Sam conquerored pooing - Double Yeah!!! And then, we were told to expect delays with Sam's milestones because of a) his being so prem and b)the RTS. So when Sam smiled, really really smiled, it was Triple Yeah!!

Oh how we have learnt to appreciate each and every conquest and to be truly thankful....every time Sam finishes a bottle, every time he has a dirty nappy (yes, even when it's at 4am), every time he smiles is just as precious and glorious as the first time!

A sign?

On Friday, 1st May 2009, I picked up a book I had bought several weeks before by Dick Dobson. The very first story was about a thirteen year old boy, very healthy and athletic and excelling in tennis, who is diagnosed with muscular dystrophy. His dad is devastated, but the boy becomes the comforter and the one reassuring his dad with comments like "I don't need legs to serve God". The story goes on to explain how this particular boy's mission for God transcends any physical limitations he could face in a lifetime....the boy's name was Samuel. I went ice cold - were we been prepared for something?

One week later I was admitted, Samuel was still not growing and my doctor felt that keeping him in a womb that was not supplying enough oxygen and blood could be fatal. A week after that our Samuel was born.....and he was so beautiful and so small and so beautiful and so fragile...and oh, so very very beautiful. When we were told he has Rubinstein-Taybi Syndrome it was almost too difficult to believe because he was so perfect, except for his little unique thumbs and toes. But both Chris and I knew instantly that, no matter what the diagnosis, to us he is perfect and a gift from God. The Lord has entrusted him to us and I can only believe that our little Samuel has a precious purpose here on Earth and it is going to be an exciting and inspiring journey finding out bit by bit exactly what the Lord has planned for us. This tiny being is meant for something wonderful, something great and just as Hannah entrusted her Samuel to the Lord, so we place our Samuel tenderley in the Lord's hands.

A step back...where it all began

In about September 2008 Chris and I started "playing" with the idea of having a baby. After months of throwing the idea back and forth, we decided in October that I would go off the pill for three months giving my body enough time to work it out of my system and would use alternate "methods" until the end of the year. Then, if we were 100% sure, we would "try" from January to March - we gave the Lord a three month "window" :-) and decided that if it was God's will, I would fall pregnant within that time and if not, we would just carry on as normal. On the 5th October 2008 I officially stopped taking my pill.

At the end of October we decided to take a trip to Stilbaai for the weekend to visit Chris' folks and within half an hour I started feeling car sick. The nauseau continued throughout the weekend and after a sudden craving for the taste of beer (which I usually detest) we became a little suspicious. Two weeks later one Sunday morning (15 November) we lay in bed and, after yet another bout of nauseau, I looked at Chris and said "You know that I am pregnant!"


Of course, what were we thinking, giving the Lord boundaries....at 2pm after taking two pregnancy tests (uhhhmmm....we had an oopsie with the first one - it had been a while) the test came back positive...little Samuel had taken just over two weeks to enter our lives...and our hearts. Well, even before finally deciding to stop my contraception, I had told Chris that I wanted my baby boy to be called Samuel. It is such a precious name..meaning "God hears" and well, what more solid evidence could we now have than that. It was sooooo exciting talking about our plans and going "window" shopping for baby items, but somehow I knew that there was something going on. When I go through my journal, almost right from the very start I realise how frantically I prayed that my baby would be "normal", almost pleading with God. On the 15th April 2009, at my 27 week scan, my gynae confirmed that Samuel was not growing. Because his growth was so below average, he suspected that Samuel had dwarfism, but confirmed inuterine growth retardation at the very least. We made an appointment with a fetal specialist and would wait until my next scan, at 31 weeks.

Thursday, August 20, 2009

Some good news


Samuel went to the doctor today........


He has picked up 120g this week even with 2 days of not drinking well and it seems like his reflux is under control. When you are worried and stressed even the tiny snippets of good news, like this, is sometimes enough to give you renewed hope and strength to keep going. The picture of Sam was taken on the 18th August 2009 and, no, it's not Barney that's so big......

Wednesday, August 19, 2009

The journey started


It turned out that not a lot was conquered, so far, Samuel is growing, a bit at a time and trying very hard. We battled to get him to eat/dring properly, and it turned out the little man has severe reflux. Run out buy AR formula, and it works well for two weeks, until we change the formula to another brand, note to self.......... patience and more patience, dont make any sudden changes unless its life or death.


I will continue to do whatever I can to help Sam grow. I'm proud of him and even more proud of my wife Nicky, and Love her more than ever, and admire her for spending the bulk of her day, while I'm at work with Samuel.
From a Proud and Loving Father and Husband
Christiaan

Tuesday, July 14, 2009

The Conqueror's Journey Begins.....


Samuel Christian de Beer was born on the 15th May 2009 at 17h24 at Panorama Medi-Clinic - eight weeks premature and weighing in at 1.4Kg. As Rubinstein-Taybi Syndrome is a rare condition on it's own, but even more unique in South Africa, Sam's diagnosis was not confirmed until the following day. We knew within minutes of his birth that there was an "abnormality" but nobody at that stage knew what it was. He was whisked away to the Neonatal ICU, the beginning of his nine week stay (pic : Sam 4 days old)