Monday, May 25, 2009

he is getting SO BIG!!!

Kai keeps getting bigger! He keeps growing on me and it's exciting…and bittersweet. He's outgrowing his clothes, so I'll have to update his wardrobe soon. (I'm trying to hold off though, since it'll be summer and the clothes of choice will be shorts anyways!) He's getting taller, too. But not just in his physical appearance, he's getting OLDER. His personality is starting to blossom. He is such a delight!

Just a year ago at this time, he was struggling with his speech, having trouble with respect, refusing to potty train, and generally being difficult. *sigh* It was tough!

But now….

He has just grown so much. The other day, I spied him helping out a little sister of one of his friends. She wanted to know where her brother was (she's around 2 years old), so he put his arm around her shoulders and walked her over to him! Later, I see him with her on the playground, his hand in hers, as he takes her over to the slides. How gentle and sweet! It was so nice, and quite the surprise to see! Kai can seem to be such a "bully" at times (he pushes his brother, he takes toys from his sister, growls when he doesn't get his way…) that I worry that he's respectful and nice and caring to others. What a relief!

Last week, we got three pieces of Good News about him. The first one came from his Kindergarten teacher: lately, she has been preparing the class that after this school year ends, then comes summer, then they will return and go to Grade One!!! Kai is so excited! He keeps asking if school is over yet! His teacher confirmed for us that yes, Kai is indeed ready for Grade one!!! How wonderful! I had a feeling, but it was much nicer to have someone agree with us who matters more than just a parent's hope!

The second piece of good news comes from his Cardiologist, Dr. Hosking. (I love that man!) We had another apointment with him, with his usual Echocardiogram and ECG tests. He was weighed at 15.1kg (33.5 lbs) and measured at 105cm (3' 5.5") So he's gained a kilogram in half a year! Yay! (he's still so small, LOL!) The doctor told us that according to the Biopsy (catheterization surgery in April 2008) we have no new info, but there is some type of scar tissue on his heart. Or rather, it's a type of tissue that is formed before scar tissue is made. (there is obviously a term for it, but I forgot to write it down) There are three different ways this could've come about, the first one we were able to cross of immediately, the second reason is from an inflamation that occurred in the heart muscle that had healed itself, and the third is one that is still "iffy". Hosking is convinced it's from an acute event that caused Kai's heart to enlarge, one that wasn't big enough to warrent hospitalization, so much so that we may not have realized it happened, but effected his heart, which is why it reacted the way it did.

What he sees from the tests are that there is no change in the heart muscle. The numbers are identical to what they were in September when we saw him last! That is EXCELLENT news!!! There is no active inflamation, his enzymes are normal, the pressure in his lungs are normal. Everything is looking the same. So while Kai's heart hasn't gotten smaller, it hasn't gotten bigger either! Dr. Hosking is wondering if maybe Kai's heart, the pump, and squeeze and all those other terms he likes to use that go over my head, are just the way his heart is. The medications don't seem to be doing anything to the condition, and if that is the case, then why do we continue with them? So he is going to do it the "coward's way" (his term!) and instead of weaning Kai off his three medications, he is going to keep him at the same doseages and let him outgrow them. Seems ok to me. The Best news was when he told us that he doesn't need to see Kai for another YEAR!!! To me, that spoke of confidence, and it made me feel so good.

I am so happy that his heart is doing "Well." This is such a relief for me! As I mentioned before, my biggest worry was that Kai would collapse one day during gym class, and so I asked the doctor about that, to which he said that while we can't say he will never go into Heart Failure (a terribly scary word), things are looking well. That lifted my heart as well. I guess my worry is that something could happen to him suddenly, that he would or could die in an instant. My fears are silly because I know that the children that do pass suddenly like that, the parents were unaware of any exisiting heart conditions, whereas we are prepared for that in Kai. And it likely won't happen out of the blue either. Or one could hope. *biting lip* It's hard not to worry for your child's health. You want them to live forever, to grow, to change, to live life. You don't want to see them suffer, to grow frail, to struggle, or to die prematurely.

But what does it mean to "die before their time"? or "prematurely", really? If you think about it, the statement doesn't make a lot of sense. After all, the Lord God is the author of life. He created life, He breathed life into everything, He forsees and sustains life. He calls us Home when it is Right and Of Time. Not before. Everything is done perfectly in His time. So when we say that someone died before Their Time, that isn't possible. God knows the numbers of days we will spend on earth, therefore if our numbers are a lot shorter than we'd like this side of heaven, it is Good. But oh so hard.

*sigh* "Oh death, where is your victory? Oh death, where is your sting?…. But thank God! He gives us victory over sin and death through our Lord Jesus Christ!" i Cor 15:55 & 57

The Third thing that was Good News for Kai was from his Speech Pathologist, Dara. Last week, she stated that he is doing so well that we only need to come every OTHER week now! Woohoo!!! He is speaking well and trying harder. His teacher even said that one day, he was trying real hard to speak slower and articulate better. How wonderful! He loves going to speech, which is such a good thing to see! He even sees the TA in his classroom for some speech-related games, which he really enjoys too. (nice to know that he's not old enough to find it embarrassing yet! I remember having to get extra help for some subjects in grade 5. It just further made me feel like a weirdo. I knew I needed the help, but it didn't help socially, which I was already having troubles with. *sigh* such memories) She still finds it so Off The Mark that he would have Apraxia. She says he's just a bit delayed, and she is so confident that we won't need to see her this summer at all! Woo-ee!!!

(Anna tried to get a picture of Kai when she was over last weekend. The kids confiscated my camera…I didn't mind…until I found it broken. grr!!!! the buttons don't click to stay on or off. oh well, now I definitely need a new one!!!)

Kai has already decided that when he gets older, he is going to become a Police Officer. He wants to ride a motorcycle (or as Bryn calls them "sigh-coh sigh-cohs"!) and even fly a police helicopter! Very adventureous! We'll see if this dream continues as he grows!

He also announced one day to Anna that, "when I grow up I'm going to be a police officer and I'm going to marry you!" LOL! How absolutely adorable!!! Anna was horrified though! LOL If she's not interested, then there is always her little sister, Janaya, who is two years behind Kai and such a cutie!

(Anna riding on Kai's bike while he stands behind her on the training wheels!)

Kai is so wonderful! I love him dearly! He's getting So Big!!! A part of me isn't ready for it. I'm so unprepared. He's been so YOUNG for so long…so dependant with his speech and his attitude and confidence, but now he's growing. He's getting independant and brave. (he'll actually talk to strangers now!!!! …which is a good/bad thing! it's definitely better than ignoring or growling at them!!!) But I've lived with this for so long, it's hard to imagine it all fading away into the past. I'm not prepared! But I am happy. Relieved. At peace.


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