Just a quick update... it's school holidays as I mentioned, and we're now in our third and last week. I'm spending all my time with the children, and some on myself. Once school starts again, I'll spend more time on this blog and get into Medical Mondays and so forth.
So just quickly. The sleep study report came back. Apparently, there's some snoring, but not enough to matter. Nothing to worry about. So basically, the sleep study was normal!! Yay, yay, yay!!!!!!
I can't help having ambivalent feelings though. On the one side, I'm absolutely thrilled. Because my husband was really worried that Monkeyman would need to sleep with the same CPAP machine he has to, at night. It's a HUGE relief to him (and me!) that that's not necessary. Thank God.
On the other hand... if he had sleep apnea, it could've explained the tiredness, and I could live with that, my child having sleep apnea that needs treatment. I don't know what we will find at the end of the road, but if it's an incurable, degenarative mitochondrial disease, I'd much rather have chosen the CPAP machine. But, I'm not really going to go there yet. Or entertain the thought for more than a fleeting moment. And no, I have not yet, research mitochondrial diseases. ;-)
I'm in such a good place at the moment. I never realised how much one part of my life has dragged me down the past year. It caused me alot of pain and sadness. I only realised how much, when for the past almost 3 months I stopped my interaction with the people involved. Every time I interacted with them, I would become just a little bit more depressed about the hurt I carried with me. At some point in April this year I realised what it's doing to me, and I stepped away. It was difficult and sad. But I felt free! I missed those I loved, but I needed to be able to find myself again. Who I am, and not who I was percieved to be. In the meantime, I've become part of a smaller group now, which is turning out to be absolutely lovely and exactly what I needed to become whole again.
I'm thus really happy and doing well. :-) The first time in a whole year since Monkeyman was diagnosed with pulmonary hypertension. The holiday has, obviously, also ALOT to do with my state of mind. We're having such a wonderful, blissful time. I've bonded with the kids so much. We've all relaxed, thrown our stresses off and just had fun. We've played soooo many games with them. We talk, we laugh, we play, and we all relax together. Watching movies, playing games on the tablets, etc.
It's also going well with the kids. Boeboe has had a few ups and downs, but mostly she does really well on the higher dossage of the Risperlet. It does tire her out a little more though. Mr N seems to have reached a little more maturity after the difficult 6 months he has had. It seemed to have been a good learning school for him. Not nice for a mom (or dad!) to go through, but the end result turned out to be good. Maybe I'll get into what transpired in another post on another day. It's still an ongoing story though, so maybe I'll wait for some conclusions that will hopefully happen in the 3rd term (it's all school related).
Monkeyman is doing so well, that if I didn't know better, I would've said there's absolutely NOTHING wrong with him!! The other side of the coin of course, is that we can clearly see the way he should be, and the way he usually is. He didn't go to school for 2 weeks when he had the flu, since the dr advised us to keep him home. Then, we've now been on holiday for more almost 3 weeks. So for more than a month, he has done nothing but rest, be at home, sleep late, watched some movies and tv, play when he wants to, etc. Which left him with more energy I have ever seen in him! He looks so good. His paleness is mostly gone, the circles under his eyes, the pained, closed off, strained expression on his face, all of it is gone. He laughs and jokes and plays and jumps and is just a normal energetic 6-year old. He doesn't sigh all the time anymore, and when he speaks, he has that lilt in his voice that signals happiness!! No flat tones or audible tiredness in his voice. And all of this, without us even giving him the vitathion!! I do give him a bit of energade on most days, but even on the days I don't, he seems mostly ok. He still does have the blue vein on the side of his mouth, and it does turn darker blue at times. But mostly, it's light! We're also eating well. I prepare good meals because I have time. I also try to concentrate on adding more protein, since the dr asked me to. I don't know if this made a difference? Maybe there's a combination of things working together. We'll see. Once school starts again, I'm going to keep a VERY close eye on him, to see if he can keep this up. Fingers crossed!! Who knows, I can still hope, can't I?
With Peanut it's also going well. Very well. She's absolutely amazing in the talking department. She says 3 and even 4 word sentences!! She even says a few words and sentences in English (her 2nd language). She has an amazing understanding of what we say to her. She's a very sweet, very good-natured little girl. Though, she's also strong and knows what she likes and what not! And she'll make sure everyone knows it too, by letting out a piercing scream. Either in protest, or in glee. :-) She's really such a delight. Can't believe she's turning 2 soon!
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