Perfect

I was worried that a month’s break would take me back to the first immediate reactions I had. The erupting volcanic stomach, the thigh pain, the big welt on my thigh, the headache… Nope!

It went perfectly. And by the time I injected myself, the numbing effects of the Emla cream had worn off, but I went ahead anyway. It was a mental block making mg me use Emla to numb my skin and I’m done with it. No more buying Emla when the tube is finished. I pierced it despite the resistance and it went perfectly!

Enbrel injection number 7, done and dusted. Now, they do say most side effects start a day later, and that did happen with me. BUT at least I didn’t get the immediate ones I had last time. I hope I feel normal tomorrow too.

Sad that ‘normal’ means, “In pain, limping, taking a whole day to cook one meal which I’m still cooking at 20:30 and that meal doesn’t even include MY substitutes for the things I can’t eat…” Normal stinks. Normal isn’t nice. But..it could be worse!

And another perfect thing is my angel.

More words. PURPOSEFUL SPEECH! We’ve searched high and low for a special centre for her but the two suitable ones don’t work. One has no space. The other wants them to wear shorts and short-sleeved T-shirts. That’s not us… And the others are too far away. The fuel would kill us. My one option is to look for a lift club for her and hope it charges less than the fuel would. It stresses her dad a lot that she can’t express her needs and wants. We both want her in a specialized centre for her own growth, but also for my sake. I can’t teach when she is pulling me around. But for my husband, he wanted to know he had tried everything he could to get her the help she needed. (On top of the therapies we will be doin.)

Can we just say how expensive these places are!? It’s like buying spectacles every month. Huge sacrifices would be needed.

Back to the perfect… She still calls her dad “Dinosaur!” She still doesn’t call me anything. But she now pulls and speaks! She tells us when she wants “some cereal” or “soya milk” or “mingo” (mango) or “some grapes.” Haha, yes, there’s a theme. But she also says “bocks!” (Wooden blocks.)

And..AND!!! When her dad was pretending to take her dried fruit roll away from her, she told him (what we always say when she wants more and more food.) “Not for you!”

Perfect context.

The funny one was the door one. She realised she was tired of being outside with her siblings and wanted to come in and find me. I always close my door when I’m lying down to rest from pain so the door had been closed…She pulled her biggest sister and told her, “Some doors!” Ie. “You’d better open the door and get me in!”

I loved her with the lack of speech. But I hated that she could not express her wants. I wanted more for her. I am relieved for her sake that she seems to be getting somewhere! May the trajectory continue🥹❤️

As for behaviors… I’m leaving this post on a light note! Let’s celebrate the speech for now. 😉