Tuesday, 14 July 2009

Johnny, Johnny!!

I can't possibly love one son more than the other, this much I know... But I do like different things about their personalities and I do treat each of them as an individual. Reading this blog you might think that I am focusing on John more, that somehow I might love Cody less but it is not true. It's not that Cody isn't a remarkable child or that I don't have a ton to say about him... He is and I do.. in my other blog, the family one. I created this blog for John in hopes of helping others like me by means of sharing my story, my pregnancy with the boys, the complications, the birth and the aftermath of IUGR, bad placenta and brain damage... I wanted to tell the world, that sometimes struggles don't stop with the birth of a live baby like I once thought... I honestly thought that I brought John alive into this world, things would be alright... I really equated alive with healthy and healthy with absolutely typical and normal... and I suppose many people do too... When I tell John's story and I get to the dramatic point of his birth, when his heart stopped twice during my c-section, I hear people sigh relieved when they hear John was born screaming mad and breathing... But life and struggles don't stop at birth because John's life was indeed saved by the doctor's but then a new set of specialists got involved this time to save John's *quality* of life... and our uphill road continues. It's a beautiful trek up that hill and at the top awaits a happy and productive life, college if he wants it and a wife and kids if he choses... I am not raising my boys to keep them forever... I am raising them so they can fly, on their own, on strong wings... their paths are their own to chose and I don't mind if the become doctors or taxi drivers as long as they are happy and love what they do. I am teaching John that different is ok and he should be proud of who he is. He was made the way he is for a purpose. I have become a better person because of my son. Everyone who meets John, falls in love with him, big eyes and underdeveloped body... my little bobblehead boy!! He is the apple of his brother's eye and both of them together, are my Alpha and my Omega... John and Cody will never look into my eyes and wonder, even for a second, if they were wanted and loved... something I unfortunately wondered myself when I was a child raised by a disturbed mother... All that said, John has made remarkable progress in the last 18 months. As he nears his 4th birthday in 4 months, and in the last 18 months, he has learned to talk, walk with his feet flat and his arms down, climb, run (even though he looks like a string puppet when he runs!! lol), swim, sing, give hugs and kisses... However this year of PT has done nothing for his muscle tone. He remains hypotonic and underdeveloped (due to lack of muscle tissue) and I am not at all happy about that because I do believe part of it is his therapist. Thankfully we are switching come September and I am raising money to have him do private water therapy so we will see... Here are a couple of photos and a video of John swimming (with an aide) ... he won his first medal in swimming!!! Yay!! Come to think of it... Special Olympics, here we come ;)


Wednesday, 8 July 2009

Beautiful, beautiful, beautiful, boys...

At our 12th week sonogram, we found out we were having two little boys...
My jaw dropped to the floor at the revelation... two boys!?!? I was incredulous! You could have told me that Martians do indeed exist and I would have the same reaction...
It wasn't that I didn't want two boys... it was that the thought of having two boys had never crossed my mind up until that moment. I thought, no, I was convinced I would either have two girls or a boy and a girl...

In the corner of my eye, I could see George was similarly shocked. He really had his heart set on a little girl... or two. He was positively shell shocked!
For me it didn't last long... the cold hard truth of their conception, the years of pain and anguish, the very battle with infertility, had woken me up; I was at the point that I didn't care if my baby(ies) was purple with green dots... as long as s/he was mine, and I let the world know every single time someone pulled a face whenever I announced that we were having two boys...

Our 12th week sonogram, also known as A Level Ultrasound, marked another momentous occasion; it was the first time I saw my babies and they actually looked like proper little humans, flailing arms and match thin legs. In 4D, I even saw little tiny faces and from that day onwards, I could tell which one was which by the shape of their skull (and to this day, you can still tell one from the other by the shape of their skull).

I went home clutching the folder that contained the video and the precious images of my little guys... it would be another 8 weeks of pure bliss before my world would turn upside down...

At week 20 we went in for our Level Two Ultrasound or the "Detailed Anatomy Scan". This is the BIG one... the one that will "catch" any abnormalities if they exist. In many countries, this is the only ultrasound they offer in the course of a normal, low risk pregnancy but because I was an IF patient with a history plus of course the lost triplet, and of course we have to mention the private insurance, I had gotten about 20 ultrasounds to date..

I wasn't really expecting anything to be wrong. Yes, I was counting down to 24 weeks, my big milestone, the age of viability, yes I was afraid about things like prematurity but I didn't really think there would be anything wrong with my babies... until the doctor said the words:
"We seem to have a small baby here".

I didn't know it then, because I kept smiling my stupid grin, but these words would change my life, my perspective and the future of my child forever.
I didn't know it back then, but I was the mom of a special needs child, a child whose footsteps would take me down a totally different path that the one I thought I would be on... the pain, agony, tears and panic attacks, that peppered my pregnancy, wouldn't stop with the delivery of my babies as I thought... but I didn't know it back then.
However as a precaution I was put on modified bed rest that would later change into full bed rest and I would spent the next 16 wks in agony, both physical (as I developed a severe case of SPD) and psychological over my "small baby"... but I didn't know it back then.
As we left the office after my 20 week ultrasound, all I could think of was I needed to buy cribs... and nothing could go wrong...


Thursday, 9 April 2009

41 Months Old!!!

My little guys are 41 months old (or will be next Tuesday!)
Time has flown by so fast! You know what they say; time flies when you are having fun...and what fun we have been having!! I am so in love with them, more and more and more each day!!
That's not to say it has been easy, because it hasn't been...then again I can't say it has been an uphill trek either :)
It IS 110% worth it!!

So what else is new in our house hold?
John has been doing great this year. Less sick and when he does get sick, it's mild. Not a single day spent in the hospital this year (knock on wood), not a single stitch either which means my little guy has learned how to FALL without injuring himself. lol

He is SO clever and witty and has a wicked sense of humor... he is showing clear signs of being a "genius" lol and these are not my words, but the specialists'.
I've enrolled the boys to pre-school for next Fall. I am kind of looking forward to that but it will make therapy and swim classes more difficult. I did not want to make their schedule too heavy so we will see how it goes.
Let me back up though for a minute.

John hasn't been making the progress I'd like to see when it comes to physical therapy. He kind of remained where he was while his peers plowed ahead which in turn made the gap that much more obvious, because his gait could be explained away when he was 2 but now that he is almost 3 1/2, his gait even by stretching the range of "normal" does not fall within the range. He walks (does not run) like a 2 year old. When he does run it's more like a fast walk, he does not bring his feet high off the ground or his knees high off the ground.
He has also gone back to putting his arms in the guard position which he had stopped doing but when he walks, he does have his arms down by his side.
He is very confident in walking and drags his right leg (since his right side is more affected) less and less. When he is not tired, I will go as far as say you can't even tell he has Cerebral Palsy if he is walking on even ground and slowly.

His belly muscles still have not developed and because he has grown SO tall (he is on the 75% for height!) he gets more and more leg cramps at night but so far they have been easy to handle. Massage with lavender, tension bandages and Tylenol do the trick (without the Tylenol he is in too much pain to sleep again).
Poor guy now realizes "medicine" makes him feel better and he takes it on his own!!

He is also more comfortable with his glasses and now wears them most of the day. It's nice when you don't have to fight them at every turn, yes?
Weight wise he is on a good curve (above average) but he maintains his "look"... looooong skinny legs, protruding belly, ribs that stick out and straw arms and a big head on top of a skinny neck.
His pelvis is so narrow, he still wears 18 month pants (!!) although of course these are too short for him so he wears suspenders most of the time on 3T pants.
His shoulders though are VERY wide so yeah my son is triangular ;)
Harlequin man to be!! You know, looong legs, narrow pelvis, big strong chest/arms/shoulders. Yeah... future heart breaker for sure.
HECK!! Present heart breaker!! There isn't a SINGLE person that meets John and I am talking about complete strangers, who does not fall for him. Yeah my boy can talk the beard off a saint for sure ;)
(Scorpio Charisma!!)

Behaviorally we have seen a big improvement. He still does not "listen" but he now plays with other kids, shows interest, stays in one place, does group activities... I am now more confident that he will be able to attend mainstream school with no problems and be incorporated into a classroom just like everyone else (well, not really... I bet he will be the teacher's favorite hahahahaha)

Ok so I told you how he was "stuck" in physical therapy but the Center didn't have extra hours to give us for more PT... So I enrolled the boys to swimming.
BIG success. John is more "lose" now... so lose that the neuro the other day said that John showed no signs of hypertonia (he was laying down). Of course when John got up and walked it was still there but all in all great improvement!!
He has been able to follow directions from the teachers although he was cold in the pool. It's not freezing cold in the pool but it's not a jacuzzi either. So we got him a wet suit and he's been fine ever since. He used to come out with PURPLE lips that took hours to return to normal, ashen white hands and feet and of course shaking, teeth chattering etc.

Cody on the other hand has been Mr. Attitude lately... VERY annoying and taxing and trying my patience at every turn/interaction.
I attribute it to him being 3 lol.
He HATES Speech Therapy (and I hate his therapist!) but he LOVES swimming and he made the team, he is THAT good lol :)
I think they have him in their scopes for the Water Polo team (age 6) because he is so cool in the water and SO big. He is the size of a 6 year old, on the 98% percentile on the charts :)
He is still my sweetie, hugging and kissing and still a momma's boy :)
Next Wednesday he will have surgery to remove adenoids and tonsils as we have a big problem with them so say a quick prayer for him if you will.

That's all for now... I will update more from now on :) Promise.