HAPPY RESURRECTION SUNDAY!

"On the evening of the first day of the week, when the disciples were together,
with the doors locked for fear of the Jews, Jesus came and stood amongst them and said,
"Peace be with you!""

A Swinging Easter

I know it's only been a few days, but I am almost certain that in six month's time I will still not be 100% used to seeing our little smurf crawling around and, even more exciting, exploring. The fact that he's crawling is pretty amazing on its own but add to it his overcoming his fears and sensitivities to his surrounding is pretty darn close to unbelievable, especially looking back at where he was a month ago. Yay for OT! Prone to beating myself with the relentless why-didn't-I/we stick eg. why didn't we do OT sooner, why did I stop the Nestargel, why did I re-start the Nestargel....ya da ya da ya da...comes one of my most crushing why-didn't-I/we's.....

Why didn't we put a swing up in the house earlier? And this is why.....

Sam is loving it and although having it in the middle of the lounge/living area is not the greatest idea, decoratively speaking, it means we can do several things while keeping him entertained and being close to the tv for Barney time isn't a bad idea either.

With all the exciting new things happening in Sam's and, therefore, our lives it would be quite easy to lose sight of what time of the year it is....mmmmmm..well with the exception of the thousands of Easter eggs which have been displayed in every shop since 26th December, that is. In keeping within our spirit from last year, we gave the kids their Easter eggs on Sunday already as, although we don't want them to have to feel "left out" when all their friends are drowning in chocolate bunnies, we don't want them to lose focus on what Easter is about and come Good Friday and Easter Sunday have them more excited about the anticipated sugar rush than the spiritual meaning of this period.

At this point a very quick side-step is required to say this : "Hi, I am Nicky and I am a chocaholic! I have been a chocaholic, probably, since the first day I was born (thanks Dad) and my addiction intensifies with age, as my family will testify." The only time I have even mildly considered cutting down on chocolate was when I was expressing breastmilk for Sam and even then had to resort to two blocks of dark chocolate as opposed to going cold turkey. The day Sam went on to AR formula I think I polished off a whole slab of chocolate and could probably count on one hand the number of days I have gone without chocolate since then. In my defense, I have to blame my Dad who is as addicited to chocolate as what I am.

Okay, you will understand the significance of this side-step soon.

At our Sunday service our minister urged us to carefully consider our lifestyles over the coming week, at least, in order to even just try and comprehend the emotional turmoil Jesus was enduring in the week leading up to his being betrayed. Now as kids growing up in the Catholic Church and having to give up something for Lent we almost always chose something we weren't that fond of anyway (I remember giving up liquorice one year but honestly don't think I'd eaten it even once in the year leading up to Lent). So Meg and I chatted about what we would like to offer up and although things like homework and vegetables came up, eventually agreed on chocolate. Yip, after just receiving this enticing collection :

Of course it doesn't help that at, what seems like, half hour intervals my dad keeps offering us chocolate (he's offered me a block while I sit typing this, can you believe it?) and kept telling Meghan last night "Just take a piece!". She has stayed strong thought but keeps insisting that the bunnys' eyes are watching her! It has been kinda fun spurring each other on, think next year we'll try the full 40 days even though we no longer belong to the Catholic church.

More seriously, we are focusing on the Bible story surrounding Easter from Meg's Bible The Children's BIBLE Story Book (Retold by Anne de Graff & beautifully illustrated by Jose Perez Montero) and in keeping with the spirit of what our minister spoke to us about on Sunday, here is an excerpt :

"Jesus was asking the Father to protect all His followers for all time. He was praying for people like you and me. When He had finished, He led them into the garden.

There, He took Peter, James and John. They went off alone together. Jesus was very upset. He said, "My soul is torn up inside, to the point of death. Stay here and keep watch." He was going to talk to His Father. Then He said, "Pray that you won't be weak tonight." Jesus went off by himself to pray.

A short distance away from the disciples He fell onto the ground. "Oh, Father!" Jesus cried out, "If it's possible, don't let Me go through this pain. My Father, isn't there any other way, must I go through this?" Jesus knew God wasn't making Him do anything. Jesus had to chose to obey. That way God could work miracles. He could offer all people for all times a chance to start again and be clean with God.

Jesus looked up at the stars. He said, "Father, I am willing to do what You want."

Jesus in the garden called Gethsemane on the Mount of Olives

He just couldn't wait, could he?

Who couldn't wait?

Why, Sam of course!

Couldn't wait to do what?

Well, this........

And this....

Being rewarded with some love from Aunty Minnie Mouse and Uncle Damien.

Aaahh...I mean, Aunty Cammy!

Sam is officially O.F.F.I.C.I.A.L.L.Y crawling! It seems almost unreal - wow! I posted last week that, after his little exploratory crawl last Tuesday, I thought he might be crawling properly by his 2nd birthday in a month's time...but even though I said it, it was more of a wistful fantasy than something which could really become a reality. So we are sooooo incredibly proud of this little boy, still managing to haul in some milestones while struggling with his SID. WELL DONE SAMMY!

Sam also now has a lovely swing hanging from our ceiling. Our house, especially the living areas, is starting to look more and more like one massive daycare centre as opposed to a lounge/sitting room, etc. We've even toyed with the idea of just going the whole hog and removing all "big person" furniture and just Sammy-fying the place :) but then again, it could be the lack of sleep talking!!!

I see you

I see you.

I see you in the same way others do…I see you in a way they don’t.
I see your physical beauty, your spiritual beauty…a spirit so pure and true.
I see YOU…some can’t….some won’t.

I see your sparkling eyes, your precious and enchanting smile.
I feel your joy, your love, your unconditional trust.
I am blessed and privileged to be the one who, for this while,
Will comfort you, believe in you and fight for what is just.

I see your strength, your passion, your infinite will to survive,
Through each and every trial, along a path that offers no rest.
Yet each new step is taken with an unremitting drive,
Determined to conquer each new struggle and every single test.

What if my earthly existence fails to conform to my plan ,
Without the time I desperately need to make sure you’ll be okay?
Although your strengths amaze us, there’s more to being Sam,
I see your vulnerability and it haunts me night and day.

I see who you are…I see who you’re not.
It’s a reality that simply cannot be forgot.
But through eyes tainted with awe, devotion and love,
Come three little words which encompass the above….

I see you,
I SEE you,
I see YOU!

Nicky de Beer:14/04/2011

IMPROVISING......

As mentioned yesterday, Sam had another OT session this morning (No, I didn't remember to ask about getting him to sleep, it completely slipped my sieve....uuuhhhmmmm, I mean MIND). I don't know about ol' Smurf, but I thoroughly enjoyed it. Sam was a little bit grumpy after having woken up that way this morning which made him a little challenging to work with, but I adore watching and learning all the different techniques and activities one can do with him. So, new activity learnt today was Sam playing in a ball "pool" which basically consists of a camping cot filled with little plastic balls you often find in kiddies' play pits. Sam did surprisingly well, although I did have to climb in with him. Luckily enough we have an entire bag filled to the brim with the same balls at home which Sam hardly plays with and we also have an unused camping cot, due to Sam's depth and colour sensitivities. Then remembered that the camping cot would not be at all practical as it is not flat on the ground, but stands on little feet which wouldn't be a problem for Sam's tiny little being but mine on the other hand??? Putting him in there on his own also isn't an option because if he was able to tolerate being in the camping cot, we wouldn't have had to go out and buy a whole new cot recently. So, on to Plan B which is clearing out one of Sam's toy boxes which is high enough to prevent him from falling over and out should he wriggle too much, but low enough for him not to feel threatened or insecure and to still see what's going on around him. Well, it turned out to be an excellent improv as he went into his new "ball pit" with surprisingly little reluctance and spent a good ten minutes in there until I started feeling guilty about leaving him on his own (meaning I was a whole arm's length away as opposed to having him attached to me) and took him out. In any case, wouldn't want to overdo it to the point where he starts developing a negative reaction to it but it was so great that he tolerated it as it helps with deep pressure input and, once he becomes more comfortable, can even become a stimulating activity by putting him in there and hiding one or two of his favourite toys and having him try to find them. Here are a few pics.....

 Snug as a bug in a rug!

 Of course there had to be knocking involved and how cool for Sam that he could knock with two hands at the same time, without having to even fully outstretch either arm!

And, talking about bugs, I put Bigley Bug into the box with Sam as BB has a little mirror on his tummy so Sam could occasionally check himself out, which he loves!

Need I report that Sam had to be walked to sleep again last night? If this was not the case I would have either had to worry about someone sneaking into the house and switching my little smurf with some strange fall-asleep-on-its-own type baby or had to doubecheck that my post actually published in the first place because when oh when has it happened that I've posted about something great happening and it actually stays that way??? But, thankfully, there was no vomitting involved which is a pretty good second prize, even though my back, shoulders and arms contort into all sorts of spasms once Sam's eventually asleep. (Mmm..perhaps that is why I seem to have lost most of the use in my left arm and hand...seriously, in a matter of five minutes this evening I dropped Sam's entire bowl of supper and then the shaker with his milk in it. On Monday night I dropped a bowl of boiling hot rice. Anyhoo....) This evening, with Sam being super exhausted after a very active day, I decided to try and persevere with just putting him in his cot and made sure that everything was as it had being on Tuesday evening...all was going well, other than an occasional whimper. HOWEVER (yes, there's a "however") while Chris and I watched from well concealed hiding places in the room to make sure Sam was okay, Chris started caving and it was a matter of minutes before he'd picked Sam up. Naturally I told him that he'd destroyed all my hard work and perseverence....all two nights of it....and that he would have to get Sam to sleep...which he promptly did - WOOOHOOO! No spasms for me tonight :)

Desperately Seeking Profound!

First, some catching up on pics.....

We didn't take many photo's while in Stilbaai last week but did manage to snap a few of the very first thing which caught Sam's attention....Ouma's piano! And of course, every time you walked past the piano or anywhere near it, that crooked little finger would gesture wildly at it.

The piano is somewhat different to Meghan's keyboard, which is what Sam is used to "playing" on, so it took a quick moment to familiarise himself with it and a little more concentration....."Mmmmm...let's see. Chopstix, okay, these two fingers go here...wait, wait...or is it.......?' 

"Aaaahhh, finally figured it out and we're into full swing Chopstix!"

One of Barney's episodes does actually feature a boy and a girl playing Chopstix together and when you tell Sam to "play Chopstix" he automatically sticks those two little fingers out and pounds away at the keys.

The normal procedure for car travelling is that Meghan has to read and knock for Sam throughout most of the trip, however, Sam decided it was time to return the favour and read a story for Meghan on the way back from SB, while she slept. 

With Sam still not doing much independant sitting and self-entertaining while we work on his SID, it has become remarkably difficult to keep him occupied during the day, not to mention trying to find even just a five/ten minute gap to make a bottle, throw some clothes in the washer, etc. So, with Sam's birthday only a month away, we opted for an early pressie which will, hopefully, provide some variety of entertainment until he's "okay" enough to be able to spend ten minutes playing while I do something. For now though, he is still quite frightened of anything remotely new or unfamiliar regardless of how many charming characters and exciting noises it makes, so he has to be re-introduced to his little Toy Story ride-on every time you put him in it...which is a little taxing, but eventually he relaxes enough to allow you to seat him on it and take him for a five minute walk around the house. We also bought him a little swing, as recommended by his OT, which we will be able to use both inside and outside of the house.

 The ride-on happens to fit perfectly under the keyboard which is a bonus and provides a charming "pitstop" for our sitting room journeys.

 Sam has, at last, had a haircut...or rather, something vaguely resembling a haircut. It had to be done in two shifts as he absolutely refuses to sit still, so the right side was done on Sunday evening and the left side on Monday evening. Yes, I know...rather weird, but it's all we can manage without making Sam upset to the point where he "v-word's". Thankfully (for once) we have what one might refer to as a low-key social life, so Sam sporting a lopsided haircut for a day was not all that distressful :)

On to the subject of sleeping. Our little man has decided to, again, combine two of his most exhausting traits together - the "v-word" and screaming himself to sleep. So, up until last night, we were back to Sam point blank refusing to go to sleep at night, regardless of how long I walked him for and sweet-talked him in an effort to try and keep him calm. The first challenge is that lately he refuses to be walked in a lying position, which means you need to hold him upright at a 45º angle to your chest with one arm, while supporting his back and neck with the other. The moment you try and edge him ever-so-slightly into a horizontal position, he starts crying. (I know what the normal first response would be - ear infection? But nope, his ears have been checked three times since he's adopted this new "sleep" position and they're perfect). Even though he only weighs 9.75kg's, this is quite a hold to maintain for whatever time period it takes for him to fall asleep, which can be anything between thirty to forty-five minutes, and is usually accompanied by him trying to push against you in an effort to avoid sleep, which then leads to me trying to shift his position, which leads to him screaming and v-wording and then screaming some more because we now have to wash him down and re-dress him, after which he will eventually cry himself to sleep.

Over the past few days though I have just placed him in his cot for his morning nap, instead of walking him and he has managed to actually fall asleep. So last night I tried the same thing with his bedtime and, although it took thirty-five minutes, he did eventually fall asleep. I thought WOOOOHOOOOO....we've overcome one major taboo in our household. But alas, come naptime this morning....he cried when I put him down in his cot, so I landed up doing the the 45º-walk-of-torture! And, if you put him in his cot and he disapproves, he simply trashes the place.......

...and finds it all too amusing!

We have OT again tomorrow morning so I will hopefully remember to mention the sleeping problem to her and ask for some advice.

I think Sam's being generally unsettled (for lack of a better word) at the moment is having a definite effect on my own emotional state of mind as I am sure it would for all moms, whether it be of typical kids or differently abled. I keep feeling like I am missing something, something of utmost importance which might have placed Sam in this sensory unstable place and might prevent him from coming back from it unless I can figure out what it is. A few days ago I took out some more books from the library written by parents of special needs kids and keep skimming the pages, desperately looking for some phrase....some profound piece of precious information....which might jump out at me and point me in the right direction of what it is I/Sam/we are lacking which could turn our lives around. It is so frustrating when I don't see that phrase, don't feel that startling jolt as something finally connects in this worn-out mind of mine and the light, at long last, goes on....and stays on!

Of course, being in South Africa, our resources here pale in comparison to our overseas RTS families and books on more common syndromes/disorders are limited and hopelessly out of date, not to even mention something as rare as RTS. So, I had to laugh at the one book I opened on Monday in which one of the first things the author warns about is relying on antiquated and obsolete books, etc and details her own frustration when purchasing a book on Cystic Fibrosis, only to find it had been published almost twenty years earlier. The very next thing I did was turn to the front of the book only to see that this very book had been published in 1990!

WAIT

But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint. Isa. 40:31


A pressing need, a burdened heart,
A longing in my soul that won’t depart-
My trouble burns as a brand upon my spiritual man,
But our all-knowing God has a plan.

I want, I pray, I beg- I plead,
My heart burdened with a Goliath need;
Our Lord knows- we surmise,
And our petitions He will not despise.


But God doesn’t answer right away,
Though with much expectation we pray.
"Wait" - our Master seems to say-
To a heart grieved day by day.


The wait is not in vain-
Giving hope amidst all our pain.
The Lord shall turn our loss into gain,
Though God’s ways we cannot explain.


~ Gene Griffin ~

Good Ol' Smurf Mentality

So, thankfully, it appears as though Sam’s blog is not somehow jinxing his health. Phew! What a relief that is. (Of course I was being serious when I said that last week…LOL). With only an extremely minor throw up on Saturday, we were all good to go for Sunday’s trip. Or so we thought. No, nothing ailed us from Sam’s side however, our usual three hour & forty-five mins trip was turned into a five hour long trip, both ways. We left at about midday on Sunday afternoon thinking that the roads would be relatively quiet as all the holiday goers would surely have left on the Friday after school and not many people choose to travel on a Sunday afternoon. Our intentions probably would have paid off except for the major roadworks taking place along the way which resulted in over an hour’s delay. Sam was beside himself and got to the point where he just couldn’t take it anymore and started biting me in the face and pulling my hair from frustration. (This has become quite a habit of his when dealing with any kind of “overload” in a situation.)


Effectively, out of the forty-eight hours we were “gone”, we spent ten hours travelling and, say, sixteen hours sleeping which left us with a measly twenty-two hours actual visiting time. Not one of our most intelligent escapades ever if you look at it from that point of view, but at least we did get some quality time in with Chris’ family and, as always, Meg and Chrisna played up a storm.

Sam only had one v-word episode while we were away and that was on Sunday night, mostly due to still being stressed about the long car trip which found us arriving just about his supper time which then, of course, sent his normal evening routine hurtling to the wind and left him completely unsettled, on top of not having much time to get used to his new surroundings before bedtime. But for once it was Chris who got v-worded on which was a small, yet much appreciated, consolation…well for me anyway.

Sam had his second OT session yesterday morning which couldn’t have come soon enough as his biting has become so out of control that he actually had me in tears on Tuesday afternoon. At first I thought it was just his version of a kiss, because he seemed to do it in an almost affectionate manner but, as his OT confirmed this morning, it is definitely related to the SID as it happens predominantly when he is in some form of sensory overload, whether it be negative or even positive, like when he laughs so much that he actually starts crying. Anyway, the session went extremely well with very little resistance from Sam. He loved all the various types of swinging and even tolerated the new types of brushing and deep pressure input. Sam was helpful enough to go into one of his biting “fits” right there in front of the OT, ripping out a large handful of my hair together with the biting, which enabled her to see exactly what I was referring to. She gave me a fairly thick piece of tubing to try and keep on me as often as possible so that when it looks like Sam’s about to bite, I can quickly place it in his mouth and get him to seek his sensory input through the tubing rather. We are still carrying on with the sensory brushing which Sam still tolerates quite well most of the time, but it’s the deep pressure exercises afterwards he resists so aggressively. I was actually pretty much convinced that I’ve been doing the deep pressure input incorrectly because Sam literally fights me on it, but when OT went through the exercise this morning he tried to fight her off as well, which did put my mind at ease….well, a little at least!

Sam’s crawling is coming along beautifully, especially over the past couple of days. Dare I say he might be crawling properly by his 2nd birthday (in just over a month’s time)? He has even ventured out onto the normal floors now, as opposed to only managing to crawl on the bed or a duvet laid out on the floor. It is sort of weird to be looking forward to crawling by the second birthday whereas usually you’re entertaining the idea of your child possibly WALKING by their FIRST birthday. I really appreciate the tact and compassion with which Sam’s OT has handled this particular subject as, when doing his assessment and coming to the developmental section, she did not feel it necessary for us to have to pinpoint exactly to what extent he is delayed. Along with the forms which she handed me to complete was the development assessment page (I didn't have to fill this in either - thank goodness) but from the information on there it would appear that Sam is only on the developmental level of a seven/eight month old baby…perhaps a nine month old at best. While I have no delusional perception about Sam’s development, somehow hearing a “professional” person spell it out for you just seems to sharpen the reality, so I am grateful for her sensitivity.

We are still doing the no-Nestargel formula but I am not sure for how long this can stay a solution as there is still definitely a degree of reflux going on, which is especially obvious at night with the OSA and stuffy/congested nose again. Wow, one just cannot seem to win! Because of Sam’s inability to co-ordinate both hands for such a long time, he was never able to hold his bottle himself, which was not necessarily a bad thing as we had to use teats which were designed for thicker liquids and which had three different flows on them, of which Sam used the smallest due to his swallowing problems. Had he actually learnt to hold his bottle himself, just one slight twist of his hand would have had him sucking on the widest flow so I was quite happy to be holding the bottle for him. Now that he is drinking normal consistency formula there is no reason why he cannot hold his bottle himself…well, other than the fact that he refuses!!! Chris tried to get him to hold it last night and although he kept his hands on the bottle while Chris in turn held Sam’s hands in place, the moment Chris removed his own hands Sam just let the bottle drop. Of course there’s no way we can blame poor little Smurf…having someone else cradle him and hold his bottle for him is how he’s been doing it for the last twenty-three months and he obviously just doesn’t see any good reason to change that….can’t say I disagree with that ol’ Smurf mentality.

P.S. This is my first official blog from my new Acer Notebook so that in future, regardless of whether we are away for a few days or Sam is in hospital or whatever, there won't be such long gaps between posts. Thanks Love - Love you xox

"V-word"

After my "Completely Unreal" post on Wednesday, Sam's throwing up really got out of control. Everything he ate/drank from about 12pm on Thursday came up, he even vomitted in his sleep on Thursday evening after I put him to sleep and again on Friday morning while I was holding him, in an upright position, after falling asleep while having a bottle. We decided to take him to see his paed, who managed to fit us in at 1pm on Friday afternoon. So Dr B thinks there are two possibilities - Sam either has a bit of a viral infection/tummy bug or Sam's sensory issues are still even more severe than we thought - or it's a combination of those two. As I posted a few days ago, I had decided to put Sam back on Nestargel, right smack bang in the middle of his SID (Sensory Integration Defensiveness) peaking. I know - you must be thinking "What on Earth could Nestargel have to do with SID?" Even when Sam's new OT mentioned on Wed that severe SID can be THAT brutal that it can effect one's gastrointestinal system, I wasn't quite certain what she possibly meant - now I do though!! But, then on the other hand, the return of Sam's snoring and stuffy nose could be related to a viral infection and not reflux at all. So Dr B suggested I stop the Nestargel again, straight away, which I did....and?? No more vomiting, other than a tiny bit this afternoon but Sam also happened to be in the throw of a particularly vigorous bout of flapping when it happened. (And of course we all know by now that, with near certainty,  Samuel will vomit within the next hour just because I have dared to blog again that he hasn't).

We can't completely rule a viral infection out but it would be quite a coincidence that most of his excessive vomitting started again when I re-introduced the Nestargel and stoppped again when I withdrew it. (As I am typing this, Samuel has just woken up and started moaning - Chris is with him now, but if he does throw up I will have to accept that somehow me posting on this blog is jinxing Sam's health and just call it quits. Please! Please! Don't throw up Sam.)

Let's do a quick change of subject - I totally expected Sam to have lost a significant amount of weight by now and, although he hasn't picked up much, he does now weigh 9.75kg which is not too bad considering the "V-word".  I have been so thrown over by the "V-word" lately that I don't know if I've mentioned Sam's crawling progress yet! Sam can crawl about five or six "steps" at a time now, albeit it only in places where he feels safe and secure, eg. on the bed and far away from any "larger" items of furniture, like tv units, cupboards, etc which play on his depth perception sensitivity. Oh..and did I mentioned that he can wave "Ta Ta"?? Again, like with the clapping, he can now follow a verbal instruction to wave as opposed to just copying someone else doing it. He understands most of what we say to him and responds by making his Sam-style grunts or hand gestures...which is most certainly not the ideal form of communication, but a form of communication nevertheless.

For me, the whole sensory thing has really knocked me into a daze of uncertainty and frustration. Sam's RTS seems to pale in light of the debilitating effect this is having on us and, more importantly, Sam. But as always we push ahead because there's little else we can do, other than shed the occasional tear of sorrow. On a more positive note - we have decided to chance the trip to Stilbaai tomorrow so here's holding thumbs for a "v-word" free drive, both tomorrow and on Tuesday. And, still on the positive, it is my birthday tomorrow and although, as with everything we do lately, it has been pretty low-key I did get some lovely gifts from Brampies, Cammy & Damien, Joe & Meg and, of course, Chris. Chris and I are contemplating going out for a quick breakie tomorrow morning before we leave for Stilbaai but will first have to assess both Sam's and Brampies' frame of mind in the morning.

In closing I have to add that I am super thrilled with Meg's report for the term, obtaining all 4's (out of a possible 1-4 grade, with 1 being the lowest) and an awesome 100% for Technology, 94% for EMS and 92% for History! Well done, Megs!!! What a huge relief after the year started off with a rather dodgy beginning :) Luke only gets his report next trimester, which only starts 11 May but, if his test/assessment results so far are anything to go by, his grades should follow the same suit.

GRACE SUFFICIENT

My grace is sufficient for thee: for my strength is made perfect in weakness. 2 Cor. 12:9

His hand is on you still,

As you seek and do His will.

Don't give in to despair,

Rest in your Father's care.

For when you think you can't take it,

He will give you grace to make it.

Gene Griffin