And here we go again

This one isn't about Boeboe. Yes, I know, I should update on her again. But today, my mind is filled with my little boy. Sometimes, I marvel at the fact that I could love him SO very much, when I already loved 2 other children around the moon and back. How come a parent's heart can expand to fit in all of this love?

He's 5 now, and becoming a real little boy! (I once asked my friend, "as opposed to what, a wooden doll?" when she said this of her boy, hahahaha.) Maybe it's an age thing. But he's so much more into boy games now. One day a few weeks ago, Boeboe came running in from outside crying. Apparently, she and Monkeyman was playing, when Mr N decided to go kick a ball outside. And Monkeyman dropped his sister like a hot potato to rather kick the ball with Mr N. She felt cheated and done in. So I tried to explain to her that Monkeyman is a boy, and boys like to play boys games. She was very affronted, and told me "But mommy, we were playing a game that were for boys AND girls! We were pretending to be baby birds!!!!" She honestly couldn't grasped that that isn't the type of game boys are usually into...hahahahaha. Ah well, at least I've succeeded in not putting my kids into little gender boxes (too much)!

So ya, Monkeyman now likes boy-things. Kicking ball, playing tennis, sword-games and screaming pow pow while pointing a non-existing gun in the hand at an invisible alien. So much imagination, little boys!!

So what does my heading have to do with any of this? Well, we're on the diagnostic road again. :-( Can you believe that? Honestly, I think the doctors are going to start labelling us as munchausen-by-proxy parents! Someone who would hurt their own child to get the attention of medical professionals. Ha! Who on earth would LIKE this road? I just can't understand that. Anyhoo, that's beside the point now. We're looking for another diagnoses. This time, in Monkeyman. It's just fair you see. Mr N has the epilepsy, and had all the attention from his parents for months during that time he was diagnosed and put on medication. Then Boeboe came along and had our focus and attention for years with the tethered cord. So now it's monkeyman's turn!

:(

Seriously though, I try to see the humour, but I'm tired. I don't want to do this. I don't want to worry about another child, another diagnoses, another long road. Honestly, I don't think I'm up to it again. Sniff sniff. They say God doesn't give you anything you can't handle. How come God thinks I'm so friggen strong when I'm NOT?

Well, as you know, if you've frequented this blog (or know us) I've always complained about Monkeyman's odd tiredness. Even as a baby, he'd crawl around for a while, laughing, playing, and then suddenly, just press his face down on the carpet or his blanket or my feet, and just lay his little body down. Not sleeping, not closing his eyes, just as if his whole body was tired (not sleepy). Or the way he would, out of the blue, stopped playing as a toddler, and just go lie down on the couch. He decided on one couch, and I swear, half of his awake time in his life has been spent on that couch. :-( Of course I sometimes wondered if it was because of the tv, or laziness, or being spoilt. Countless times though, I would switch the tv off the moment he starts playing in the morning (or never put in on) and check him. Without fail, he would play about 30-60 min (age 1-3), then go lie down with his blanket. Even when he had nothing to watch, nothing to do, he would just lie down and clutch his blankie. He would play with his fingers, humm to himself, scratch his head, play with his blankie, etc. Or sometimes He'd fetch a little car and just lie on the couch pushing his little car. It sometimes really broke my heart, seeing him like that. All quiet and tired. In time (and I'm literally talking about months/years) I caved and indulged him more with tv at those times. Letting him play, then when he's bushed, let him watch a movie with the request that when the movie is done, he needs to play again. It usually worked well.

What also convinced me in those days that he wasn't faking, was that even when he missed his Boeboe all day while she's at school, he'd still only play about 30-60min with her when she gets home. Then, doesn't matter how much fun he seemed to be having, he would go lie down. Frustrating Boeboe because she wasn't done with the game. Even when other friends visited, Monkeyman would only play a while, then goes to have a lie-down. I remember him "playing" from the couch while other kids tried to entice him off it. He would lie there, laughing with them, using his arms and legs, but keeping his body horisontal. Just for a while, almost like he had batteries that needed recharging. Then he'd jump up and played again. For another hour. Sometimes like with a birthday party when it's chaos and so many visitors, he would push himself. The moment the last child is gone, he would crash. Literally. The rest of the day he would spent on that couch. Unable and unwilling to do anything more than lying down. Sometimes he would fall asleep and wake up a bit better, but since age 3 he dropped his afternoon nap and it rarely happenend thereafter again.

Writing it out like this, it makes me feel guilty, for not pushing this more. It really does sound weird for a 2 or 3-year old little boy, doesn't it? I remember speaking to other parents, who complained that their boys are just non-stop. They run and plays all day long, non-stop. They thought Monkeyman very very weird. I couldn't blame them! Mr N wasn't hyperactive or even close to it, but even he was totally the opposite to Monkeyman at that age. So yes, why didn't I do more? I don't know. Since I noticed this (around age 1 I'd guess??), I asked about it at every pead check, every GP visit, every dr I've seen with him. He wasn't ill much, so this wasn't many times. But still, I never failed to ask about this every time I saw a dr with him. Age 2.5 years, I told my husband I'm worried, so I took him with when I had to take Boeboe to the pead. She listened to his heart and gave him a thorough checkup. And sent him off for some bloodtests (glucose, thyroid, iron, whiteblood count, etc.). It all came back normal, except for low seratonin that could point to low iron, though his iron count was normal. So he got 3 months of iron supplementation. It didn't help much. Not at all for the day, and only a tiny, tiny bit maybe for his night wakings (which only stopped long after age 3).

Over the years, it has become much less noticeble, and after the pead told us they could find nothing wrong when he was almost 3, I just accepted him as being unique. It did, afterall, fit in with his whole personality. The reserved, quiet, calm, contend, sweet little thing that he is. Both his dad and his grandpa was the same. Always tired as children. So I thought ah well, must be a family thing. Strange to me, but normal to them, iykwim?

A few weeks ago though, he was sitting on the couch playing something (think it was iPad), when he stood up to look for me in the kitchen. He told me that his heart is beating really fast. I was busy and barely registered what he's saying. Just nodding my head and said Oh? So off he went, happy that mom wasn't worried. A few days later though, the same thing happened. This time, I measured his pulse. It was 98, which didn't register to me as being really high (though I had no experience or knowledge on how high it should be). But what I found strange, was that again, he wasn't doing any excerzises. And his heart was beating so rapidly, that I could feel and see it being in overdrive. His shirt was moving slightly from the beating. I was mildly concerned, but then forgot about it again. Until beginning last week, while we were all watching tv as a family one evening. He felt it again, and this time it measured 102. I told my husband about the previous 2 episodes, and he looked a bit concerned. So I told him that maybe I should just take him for a checkup at the GP (general practitioner - medical doctor).

The dr told me that he'll probably going to have to refer us to a pediatric cardiologist. For the first time, I realised that this might not be nothing. I guess I was in denial, because I really, really can't face this road again. The road of not knowing what's up with your child. The road where you know something's wrong, but you don't know what it is. How dangerous or life threatening it is. Or how long it will be until you know. What procedures your child will need to go through before you know. And what and when the end of the road will be. We've been through it twice, with both the older kids. We couldn't face it again.

So ya, I got a little scared when the dr mentioned "cardiologist". I know I know, it's way too early to stress. It's most definitely putting the cart before the horses. Just silly. But when you've been through this before, you can't help but worry. With Mr N, I thought - ag, what's the chance that it is anything really? I'm probably making a whole mountain of a tiny heap of sand. I wasn't even sure if I should take him to a dr!! And then, it turned out to be something big. With Boeboe, I thought, what makes us so special that we'd have TWO children with abnormalities. Chances are so much better that she's just fine. Nothing wrong with her. Well, look how that turned out! She was so special, she's probably the only child in our whole country (of 50+ million people) who got an occult tethered cord that couldn't even be visualised during the untethering operation.

So ya, what makes us so special that our 3rd child would also have abnormalities?!?! This is just too much.

Anyhoo, the dr measured Monkeyman's heartrate with this nifty little gadget. He clips it on the finger, and it has a little screen on which the pulserate shows digitally. It was a bit erratic though, and quite fast. It were something like 106, 98, 89, 102, 90, 99, 80, 95, 105. Etc. And it only went to 80 once. Most of the time it was in the 90's and a few over the 100's. The dr listened a long while to his chest and lungs, and could hear his heart going faster through the stetoscope. He didn't like hearing that, I could see it on his face. BUT, as awfully concerning as all of this sounds now, I didn't get the idea that the dr is really stressed out about anything. Just mildly worried, concerned. He said that something's up, and we need to go back to the pead. I guess because Monkeyman's heart was still beating rythmically, not arythmically, he changed his mind about the cardiologist. He wanted the pead to do some bloodtests to see if it could be a systemic disease that caused his heart to go faster even when the child wasn't running around. Together with his history of always being physically tired, and having legpains, the dr thought something must be up.

So off we went, back to the pead. She wasn't concerned when I started speaking, and mentioned some of it as normal (sinus arrythmia). But then she read the sealed note the GP send her (I was sooooo curious and desperately wanted to open it, but felt too guilty) and you could see her mind started ticking over. She frowned and slowly tucked the note into Monkeyman's folder, very deeply in thought. Then declared that we'd probably need to send him to a cardiologist. You can imagine how much I wish I read that letter when I had the chance!!

Anyway, so she did the physical, and said that she really can't hear any murmur or rushing sound on his heart. It all sounds normal. She asked us about family history, and then said that having heart palpitations like Monkeyman had, where you can feel your heartbeat going faster/harder that it stops you in your tracks, isn't normal and needs checking out. She mentioned that his mitral valve might not be closing properly. So yeah, this is why I said "And here we go again". Because we've now been referred onto the next specialist (pediatric cardiologist). Fortunately, we got an appointment quickly, we're going tomorrow. It sounds like it would involve a number of tests (EKG and sonar).

I'm grateful the pead doesn't believe it's his thyroid or diabetes or anything like that. But I'm scared that she thinks it might be his heart. I know, lots of children/adults have mild heart problems. But when it's your own child, and you don't know what it is yet, you can't help but worry. Especially since his grandpa was similar as a child. And then, when he was around age 30, he needed massive open heart surgery where a valve was replaced with a mechanical valve. As long as I've known PIL, my FIL had always taken medication for his heart, and it needs to be very, very carefully monitored. His bloodlevels can't be too thick or too thin, so bloodtests every couple of months year after year after year after year... He can't take any medication, not even over the counter, without asking his doctors first, because it might have an influence on his bloodlevels. He always needs to be careful, always think about his heart, and his wife is always so worried about him. The first time I met him, he told me if I could hear that tick. It was a loud, metallic clicking sound. Yes, that's the valve! I was amazed, it was louder than a watch or alarmclock.

They believe (never comfirmed) that he might've had rheumatic fever as a child, that caused the problems to the valve. But what if it isn't? What if it's genetic? Or, what if the same happened to Monkeyman when he got scarlet fever age 10 months? He was so so so ill, I thought that night that we're going to loose him. Yes, he got peniccillen, so chances of getting rheumatic fever was slim, and wouldn't I have noticed it? I watched him like a hawk, didn't I?

So ya, put that history plus Monkeyman's tiredness plus a couple of drs mildly worried together with being referred to a heart specialist, and you have one worried mommy. :-(