Sam. Conqueror. Overcomer.

On the 15th May 2009, Samuel Christian made his way into this world...two month's premature and in severe respiratory distress. Within hours, Sam was diagnosed with Rubinstein-Taybi Syndrome - a very rare congenital disorder, of which little was known. The diagnosis together with the immediate challenges Sam faced to thrive became our core focus and it was with joy and thankfulness that we eventually brought Sam home, after nine weeks in the NICU.

As time pressed on, it became obvious that Sam's development was falling behind that of his RTS peers. Shortly before his 5th birthday Sam underwent a brain scan and it was confirmed by a paediatric neurologist that in addition to Rubinstein-Taybi Syndrome, Sam also has Cerebral Palsy related to his premature birth, as well as Autism.

This blog chronicles our journey through these challenges...
Our world has crashed, been blown apart.
This can't be happening....why us? Why now?
Your fragile life shaken before it could barely start,
How do we get through this...please, Lord, tell us how?

Drowning in our sorrow, waiting for answers that just don't come.
Our baby "special needs"? It simply can't be true!
The heartache overwhelms us, we're left feeling cold and numb.
The diagnosis tells us little - these children are so few.

But then we finallyget to touch you, to see your precious face
And all the heartache and questions fade, replaced with love and pride.
It's obvious from the very start you're showered in God's grace,
And with His love and guidance, we'll take this challenge in stride.

When once we couldn't pronounce it, Rubinstein-Taybi's become our norm.
When once the future seemed dark, we now welcome the journey as having an RTS angel brings lessons in unexpected form.

Our world has crashed, been blown apart!
This IS us.....right now!
We've been blessed with a gift, so precious from the very start. How do we get through this? Here's how.....
By believing in a God, so merciful and great,
By trusting that He's right beside us as we journey through the narrow gate.
By believing His love for us is not determined by a human frame,
By trusting that we draw Him near by merely calling His name. This precious baby we asked God for,
Prayed he'd be perfect and complete.
And, as Samuel means "God hears", He's laid His answer at our feet.

(Nicky de Beer : 27/05/2010)

Thursday, May 24, 2012

24th May 2012....a day of profound joy...

...when for the very first time my, completely non-verbal, son told me that he loves me.

And even though it was done by means of his was as sweet and as cherished as if it had been soft little smurfy words spoken from his mouth.

Sam has a Grasshopper App on his iPad called "I love Mom" and each page of the "book" features a picture of a different mom and her child in various aspects of their relationship with captions such as "When I am afraid, Mom helps me be brave" and "When I make something, Mom is proud."

One of the pictures is of a dark haired woman kneeling down in a flowery field with her pretty little blue-eyed, blonde-haired daughter leaning on her from behind and giving her a hug...and the caption is "I love Mom". Now I look nothing like this mom and Sam certainly looks nothing like the little girl but he plays this page over and over and over again to, seemingly, hear those words and/or appreciate the smile of the little girl. This afternoon Sam was iPadding next to me and as usual kept replaying the same page, I smiled at him and looked at something on the tv when he grunted really loudly to get my attention, then reached his arms out for my neck, pulled me closer to the iPad and played the page again.

Now, I have not used the "Miracles" label on my posts for some time...but this certainly is worthy of just that. Sam is an extremely affectionate little boy, regularly dishing out precious hugs and gobby, smoochy kisses...which of course I adore, but never in my most hopeful dreams would I have imagined Sam would understand the concept of relationships and emotions. Pure bliss....pure God!

Wednesday, May 23, 2012

Therapy...swinging...and Phil :)

One of Sam's birthday pressies (you know, the "just for fun"ones that have nothing to do with therapy or anything like that...ahem) was a play tunnel similar to the ones Sam's OT and ST have been trying (unsuccessfully but for one occasion) to get him to go through. We've pretty much left it open in the lounge-cum-therapy room and eventually, when enticed by Meg to follow her, Sam crawled through...and then he crawled through again...and again...and then he followed Belle through (the cat who possibly also has SPD)...until he reached the point where he was quite comfortable going through on his own...although every now and again it seems as if he has to do a little self-motivating to get there...

Boldy crawls in...

Just as boldly reverses out...

Crawls back in with a little "company" for the road...

Reverses back out to look at something on the tv...

Slowly introduces his cars to the tunnel...while still watching tv

Back in...

...and we're through...

It's always precious to see Sam making a little progress and him, quite willingly, going through the tunnel (without being lured with his iPad no less) is really quite big for Sam as a couple of months ago he would have had quite a solid freak-out!

I was a little anxious about our OT session yesterday morning - not because of the OT itself but because it was to be our very first encounter with the walker we spoke about last week. I was still very much undecided about the whole issue and really not very confident that, regardless of my own personal feelings, Sam would even go into a walker/gait trainer without a struggle...and quite possibly a little sensory regression. Well it was really kind of taken out of my hands when at first glance it was obvious that the walker was just way too big for our little smurf. The flash of relief I felt made up my mind that, at least for a little longer, I am quite happy being Sam's "human" walker, holding him around his torso as his PT instructed and spending a relative amount of time each day (albeit on my knees or bent over) allowing him to explore his world on his feet. If there is really no substantial progress with Sam's walking after his surgery in September then we can look a little more seriously at obtaining a walker for, quite possibly, both him and I by that stage :)

Sam simply loves unpacking and repacking the bookcase, according to his own specifications of course. Quite some time ago I blogged about Sam's very endearing preference of Meghan's Children's Bible as the book he would pause on and spend some time paging through....and nothing has changed in this little smurf's heart....

...for a second it looked like Billy Graham's  "Angels" might also have captured his interest...

...but only for a second :)

Sam in his sensory swing (the one that hangs in the middle of our lounge). He quite enjoys his swinging now and at least two/three times a day will "ask" to go in.

I posted this pic on my FB page on Sunday evening : Sam is a music man for sure, he adores music and rhythm, and he has quite obviously decided on who he thinks should be the next American Idol! Mommy's boy for sure xxx

Not much else is happening in Smurfville - Sam started with a really congested nose (again) a few nights ago and has had a low-grade temp over the past couple of days. At this point his little system seems to be keeping anything more serious at bay so we can only pray that health prevails.

Thursday, May 17, 2012

The Birthday Boy!

On Tuesday, 15th May, our little conqueror celebrated his third Smurfday (ala Kym-Maree - I've stolen it, but thank you xxx). As the messages streamed in from everywhere through all mediums, I realised just how many lives this little smurf has touched.

As always with Sam, celebrations are kept very low-key and while I would adore throwing Sam a lovely themed birthday party (Yes - even though it would sport way too many Lala's and Po's) it would more than likely be more for my beneift than Sam's. We'll wait it out another year and perhaps by this time next year Sam's sensory issues might have subdued a bit and a proper birthday party would be more enjoyable than stressful for Sam....those words do sound awfully familiar though. I'd like to think that, despite still been woken up at the crack of dawn for an OT session, Sam had a relatively pleasant day with visits from Aunty's Mandie and Cammy, not to mention a sweet haul of new toys. Fairly subconsciously, we've noticed that pretty much anything we buy lately in the way of a "toy" always has some or other educational/therapeutic element to it and so desperately wanted to buy something this time that was purely just for fun. The mission, however, was unsuccessful. The only thing "fun" we did give Sam was a really basic remote control train, to perhaps satisfy his OCD button-pressing fetish, but with a little boy who even jumps at the sound of velcro tearing the train just scared the living daylights out of him :)

Besides Sam turning three, not much else has changed in Smurfville. With the exception of two nights this passed week, Sam's nighttime sleeping (daytime naps aren't even worth a mention) is still largely disrupted and eratic and I don't expect it to improve anytime soon. Getting him to actually fall asleep is also still fairly challenging. When Sam was ill I couldn't resist but resort to walking him to sleep again but, when collecting another set of iBuprofen tabs (to ease the pain of shushing 13kg's to sleep), our local pharmacist subtley pushed a brochure across the counter for a local rehab clinic....making me think that perhaps it was time to rethink the whole thing...or find another pharmacy perhaps?

So, we're back to Sam going down in his cot, which is pushed flush up against our bed, while either Chris or myself lay next to him until he falls asleep....Sam that is, although sometimes Chris beats him to it. The thing is, while Chris is extremely disciplined in not interacting with Sam while they lie there, I cannot ignore him when he "talks" to me....which in turn leads to it taking sometimes 45 mins to an hour for Sam to fall asleep, especially when a little hand reaches over and tousles your hair or taps on your leg. Quite often though the tousling becomes tugging and is accompanied by a few slaps across the face or whichever other part of your body the smurf can get in contact with. This morning, after Sam slapped me a couple of times on the head, I moved my face out of his reach. Not to give up so easily (he is a conqueror of all things after all) Sam grabbed my hand and sort of threw it at my own head a couple of times, as if to say I don't mind who does the long as there's slapping going on. It's so incredibly difficult not to laugh then.

I read an article recently about how important it is for moms/primary caregivers to take really good care of themselves, especially moms/caregivers of special needs children. It is suggested that you get as much sleep/rest as possible, eat healthy, take yourself to the doctor when necessary, etc. I found it quite entertaining really because if all those things were so easily achievable, would there be such a thing as an exhausted mom? I considered sending in my own article which would state that for quite some time I've survived on an average of 2-3 hours sleep a night (and not always in one go), medicate myself on whatever I can find lying around the house when sick and over the past week or so have consumed a diet predominantly of tea and biscuits and, as far as I can tell, I am still walking around....albeit a little shakily...hehehe. I'll keep you updated on the T&B diet as it's terribly convenient especially if Brampies is around, as he makes a cup of tea literally on the hour. It's just so easy to grab a cup of tea, (almost always) stick it in the microwave, grab a biccie, dunk it and of course, share it with Sam....fuel for me and entertainment for Sam all in one go. I mean, who really needs vegetables....protein...calcium...carbs...or clothes that fit....right?

At Sam's OT session this week we discussed the options available for getting Sam to sit and walk, including the use of a walker or gait trainer (pics below) :

Up until Tuesday, I really thought I had this whole "acceptance" thing down. Now I am really not so sure. Of course I know the statistics, the very large scale of development for our RTS children and even that a number of Sam's RTS siblings make use of walkers. But yet the thought of seeing Sam in one is very literally breaking my heart and it's difficult to even type this without wanting to just burst into tears. I just took it for granted that Sam would crawl and then walk, even if it's at his own pace, but both Sam's OT and PT feel that having a transition step from the one to the other would benefit Sam. Me? I am petrified that once Sam starts using the walker, he'll never stop. And it's especially frustrating that a year ago he was pulling himself up and coasting along the furniture...and now we're having to consider this.

I know that, like everything else, I'll get my head around this...and hopefully my heart too. We did research the cost of importing a gait-trainer from overseas (apparently the ones available in SA are just not as good) but were a little shocked when the prices hovered around R4 000-00. Thankfully, the PT that works with Sam's OT has one we could "borrow" for Sam for a while so by this time next week we should know if it's an option for Sam.

We've known for some time that Sam is going to have his foot operation round about three-and-a-half years old and often spoke about how challenging it was going to be keeping Sam off his feet for the six weeks that the pin stays in....I even remember saying once or twice that maybe it would be better if Sam hasn't started walking properly by then, purely to make that part of the recovery easier.  Now I sit and wonder if perhaps I have not, yet again, invited this particular challenge in....

Wednesday, May 9, 2012

Smurf Wars

Things have been somewhat hairy in Smurfville over the last few days. Sam seemed a littly more "fragile" than usual at the beginning of last week but I put it all down to his teething...not least supported by the fact that he sports two farely red and "thoroughly gnawed" thumbs lately...because them being angulated doesn't attract enough attention? By Wednesday there was definitely something else bugging Sam when we were back to the clinginess, mostly sleepless nights and nocturnal thrashing that Sam is prone to when something is ailing him. Even if I'd had the time to blog, the posts would have looked something like this :

Wednesday, 2nd May

 Thursday, 3rd May

Friday, 4th May
H E L P !!!!

The fourth was definitely not with us on Friday <<cringe>> Sorry, couldn't resist...especially because I only found out round 6pm why everyone was "May the Fourth be with you"ing all day.

In actual fact, when Chris let me know he was on his way home on Friday evening I sent him a text saying "Are you sure you don't want to rethink that?" No point in both of us going down, right?  So run while you can my friend! By Friday evening Sam's eyes were looking really puffy and his cheeks all flushed and somewhat swollen. Mmmm...I told Chris I was quite convinced Sam had sinusitis - had a little experience with that one myself you see, so I could almost "feel" how Sam "looked". 

The weekend was pretty much more of the same so come Monday, off we headed to the paediatrician who, after a thorough examination and usual vomitting that comes with Sam being weighed, said "Mmmm....Sam has a rather nasty sinusitis!" So another ten day course of antibiotics for Sam...the only antibiotic left that we haven't exhausted during the last three months. Sam seemed to have a much more comfortable night on Monday, but last night we were back to the smurfrobatics (nighttime thrashing), now accompanied by additional coughing coming from Meghan's bedroom. Sigh!

Ironically, Sam had his best ever physio session last Wednesday...all thanks to his iPad. It had worked for his previous OT session, so I suggested to Heidi we give it a try for physio as well and, with the exception of one or two moans from Sam when Heidi tried to push him a little, Sam did really long as I kept the apps flowing. So being able to use Sam's iPad to entice/distract Sam with OT and PT respectively, has proven to be quite the added bonus. However, at this point, we are focusing predominantly on speech prompts and signing for speech therapy where bringing the iPad in would not really be beneficial. Usually this would not be a problem as Sam is quite relaxed and comfortable with speech therapy, but on Thursday Sam obviously felt he had to give us at least some therapy resistance for the week and so moaned and protested throughout the entire session. With physio having gone quite well again this morning, let's hope tomorrow's speech session is not going to follow last week's pattern.

That's roughly about where we are at the moment. Sam's Granny is coming for a visit from tomorrow until Monday, which is something to look forward to and other than having to go do a bit of a hunt for a birthday pressie for Tuesday, we have nothing else really exciting planned. Yes! Sam is three years old on Tuesday. Almost hard to is the fact that he now weighs a solid 13kg's (although I have no trouble convincing my aching arms and neck that he weighs that much). Exactly three years ago I was lying in hospital praying that I would carry Sam to 34 weeks, but that just didn't seem to be the plan for us :) 

Giving a lighthearted account of how things have been over the last week or so is quite refreshing and therapeutic...but this time last week lightheartedness was the last thing I had running through me. Disheartened would be far more accurate. We've dealt with it before and will no doubt deal with it again...aggressiveness. Just after his surgery in August, Sam became extremely aggressive and lashed out mostly at me and, with obviously feeling really crummy last week and not being able to communicate it to anyone, Sam resorted to some pretty aggressive (and mostly well-aimed) hitting and kicking. While I know not to take it as a personal attack, it doesn't always soften the blow to one's spirit. It's really only the second time we've dealt with this challenge and by Monday Sam was not only back to his usual affectionate self, but even seemed to be trying to make up for his behaviour last week by dishing out even more love and hugs than usual. When I allow my mind to delve into that dark place, I have to admit that it is something that I find quite frightening. I know, from occasional posts to the listserv or FB group, that behavioural issues as these RTS sweeties (and many special needs kids I would presume) grow older are not uncommon. Almost makes you wish there was a way to prepare yourself for it - but that would just be too easy, now wouldn't it? Still, perhaps trying on Meg's goalie kit might not be entirely unfruitful ;)