Really not going well. :-(

It's now been almost 10 days since we took Monkeyman off all his meds, including the vitathion with the ATP that we have been giving him for about 8 months (I think). ATP is the energy your mitochondria manufactures. Which is one of the reasons why they believe he may have a mitochondrial disease. We usually only gave him half a sachet every week day, so that he could cope with his long school hours. Of course we knew it was working, or we wouldn't have given it to him for months and months. But we never realised how exceptionally good it was working. Until we had to take him off completely.  :-(

The first few days, last weekend, were normal. Monday and Tuesday he still went to school, since his siblings were writing exams and had to be at school. I noticed that Monkeyman was more irritated, teary and less energetic. He had a few meltdowns in the shop, which was very unlike him. But overall, it was still "ok". On Wednesday he stayed home with his siblings, and we visited his old play school for an hour or so. When we got home, it was clear. He was soooo tired, that everything just got to him. He cried at the drop of a hat. I even asked him in exasperation - why are you crying about everything? He shrugged. He was pale, the little blue vein on his chin was dark, his heart beat so hard that it felt like it's jumping out of his chest, his face was withdrawn, his eyes half hooded, his shoulders hunched, and he lost his sparkle.

On Thursday we went to a family restaurant for breakfast with friends, and all 3 his siblings were with him. Something that he usually cherishes. Ag man, I can just cry. He played with them in the play area for about 20min of the 2+ hours we were there. Then he lied down. On the floor, on the cushions they have in the playroom, and in the end, on the couch of the table behind me. He was crying, because he was sooooo tired, but couldn't sleep because of the noise. So he just laid there for almost 2 hours. Barely moving, but awake. Completely miserable. (Yes, afterwards I realised that I should've cut the outing short, but I also have 3 other kids to consider. It's almost a tradition now, and one they're really looking forward to every term. Going to Spur after exams are done.)

Later that day, Monkeyman told me: "Mommy, do you know why I think I'm crying so much? It's because I'm just so tired all the time and wants to sleep, but I can't."

How can this be normal? How can this be fair? Have my boy worsened while the vitathion masked it? Or was it always like this and we never noticed it getting/being this bad? Did the full-time school this year caught up with him, as I was afraid it would? Last year, I kept him at home 2 days of the week, apart from the weekends, and on days he was tired or seemed to crash. The teacher also told me when he had a bad day, then I would keep him home the next day. This year, there was none of that. Just a tired little boy that had to keep going like the energiser bunny, day after day, month after month. Because it's formal schooling.

I'm angry. I'm so very very angry.

I so wanted him to prove to us that it's NOT mitochondrial. I wanted him to be FINE this December. While on holiday. I wanted him to defy the odds and the tests and the doctors and their predictions and assumtions and diagnoses. I wanted him to be OK.

He's not.

And that breaks my heart. I'm not sure if I can handle this. To see your little boy lie down on a couch in a restaurant which he LOVES, it does something to a mother's heart. And it worries me. So much. All these years, he only needed a short rest when he got tired. He would lie or sit down for 10 or 30 minutes, and be fine! He would go and play again. Not this time. :-( This time, he didn't get up again. He found no joy in the restaurant. No joy in being with his (laughing, playing) siblings. No joy in being out, being treated with good food and company. He was miserable. Miserable from tiredness. How awful, for a little 6-year old boy to feel like that. Especially when this was one of his most treasured outtings in the past.

If I ever doubted this whole process, I now know we're doing the right thing. I'm just not sure if I'm strong enough to face the answers we might get. Especially if he is now worse off than what he was 1 year ago. Does that mean it's gonna be true? He's going to have a mitochondrial disease that's progressive, uncurable, and usually ends in an early death? I can't face that. But seeing him like this.... I can't stop the process. He needs help. Help I can't give him.

Today, he has a fever. :-( Sick again. I wanted to send him to school tomorrow, since Boeboe has to go, and he misses his friends. He hasn't been to school since Tuesday. But now he's ill. Again. Ai man, how is this ok???

We had Boeboe's checkup with her urologist last week. He says she's going through a bad cycle. Not necessarily because the cord is retethered. Bladders aren't static, and goes through good and bad cycles all the time. She's in a particularly bad one. Her bladder wand is all thick again. :-(  It breaks my heart, seeing her go through all of this again. Knowing that for a bladder wall to thicken, she must be going through horrendous and painful bladder contractions again. I can just scream. Scream at the powers that has done this to my baby. The powers that has allowed this. My husband told me, it feels like we've been cheated. Cheated out of a daughter who can just be a normal, happy, healthy child, and not having to deal with this. We just want her to be happy! To not having to worry about taking an extra set of clothes wherever she goes. About whether there's a bathroom closeby, or if someone's going to notice her trying to control the bladder contractions. Dehydrating herself in the hopes that she won't need a bathroom.

The dr has changed her medication, to something that will hopefully work better and longer, as well as give the bladder a better chance at healing again. After 3 months, we'll see how it goes. If necessary, we'll then book another botox session. Next week, we're having the appointment with the neurosurgeon to rule out a retethering. Accordingly to the urologist, the fact that only the bladder function has declined, is a positive sign that it might not be a retether. I'm going to hold onto that.

Another thing that feels like it just tipped my balancing act, was Friday night. We were having a good evening, with family and pizza, when Boeboe screamed in terror and pain. She pressed on the couch, and something stung her hand. Her body immediately reacted. Her palm turned dark red, blotches, swollen and really painful. There was a clear little bloodied hole in the middle of a perfectly round white circle. It looked exactly like the mark she got when a wasp stung her years ago. Except, this time, she was reacting really badly to it. I gave her a desselex (antihystamine), tried some ointments and treatments (like a cortisone cream), and kept a close eye on her. After 20 minutes, she had a red line rapidly moving upwards from her handpalm past her elbow onto the upper arm. So I took her to the all-night clinic close by, where the dr confirmed that she was having a severe allergic reaction to what he also believed, must've been a wasp. He couldn't be 100% certain, but that was his best and first guest. (We never caught or saw what it was, despite a fruitless search for it.) He gave her high doses of steroids, and it worked extremely fast. A few hours later the red line was gone, the swelling going down, the pain gone and the red colour fading a little. It's now 2 days later and it's still very noticeable, but contained to her handpalm. She's still on high doses of steroids, but we're weaning off it now. Ag man, just what I needed. To add wasps to her always changing list of allergies. :-(  On the way back home in the car, she told me: "Mommy, Monkeyman is really fortunate. That he's not allergic to anything." She sounded so sad.

Let's try and end on a happier note. Mr N got an award for maths last week! I'm so proud of him. Afterwards, we all sat around the kitchen table, and ate ice creams. To celebrate. It was so good. One moment of bliss and beautiful memories with 4 laughing, happy little faces, in between the miserableness and stress around us.