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)

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.