Still waiting....

So far we've had the MRI, the EEG, chromosome tests, fragile X testing and general bloods. What we know so far from those results is, Jonah has delayed mylenination in his brain and there are some parts of his brain that are enlarged. We have no other results but we should get them all back on Thursday when we see the developmental paediatrician again.

The EEG was a nightmare. As a Mother it's one of the cruelest things I have ever had to put one of my babies through. It didn't hurt but it was a psychological nightmare. Jonah had only had 40mins sleep on that day before and we didn't let him go to bed until 10.30pm that night. We woke him at 4.30am and kept him awake up until 10am when the test was due to start. Driving in to the hospital we had to keep the windows down, keep singing and playing with him, shaking his arms to stop him falling asleep.

When we got there we pretty much went in straight away. The nurse was a rather unusual character with very little people skills. She put the electrode things on Jonah's head and couldn't understand why that upset him. Forgetting that he is completely sleep deprived, she's a stranger, sticking things on his head, he has sensory issues, my guess is that was pretty pissed off about the whole deal really!

Finally I was able to give him a feed and put him to sleep. The nurse was stunned that we were still breastfeeding at 20 months, and this was a nurse from a childrens hospital for goodness sake! But the worse was yet to come. After 20 mintues of blissful deep sleep, we had to wake him up again! I had no idea this would happen but yep, we had to poke and prod him and wake him up so they could do the flashing lights in his eyes. Why why why they didn't do this at the start and then just let the poor kid sleep is completely beyond me! Finally it finished and we were able to take him home. He spent the rest of the day crying and headbanging.

Jonah is head banging a lot. His forhead is permanently bruised because he is constantly banging it on the floor tiles and the walls. He still shakes his head from side to side a lot, stimming. He has no words yet but we haven't started speech therapy yet either. We're on the bottom of some very long waiting lists.

We really are stuck in limbo. We can't access any survices until we get the definitive diagnosos and most places won't even let you get on a waiting list without that piece of paper. I am so lost, I am sick of making phone calls and getting nowhere!

I'll try to update on Thursday when we see the dev paed again.