Big bold letters

Had a busy afternoon. Turned into two simultaneous meetings with two different Occupational Therapists.

One came round to look at Zack's chair in an effort to ascertain whether it would be practical to order the same one for school. The other came round to look at what I need with regards to the adaption and hoisting.

Alongside this I had Scarlett running round thinking everyone had come to play with her and calling the first O.T nanny, despite my attempts to explain that this wasn't her name and not every lady who comes to visit is called Nanny. 

The hoist man was very helpful, sorted out what type of shower bench thingy we are going to have in Zack's new wet-room. We also tried Zack out in a hoist, well a portable hoist, kind of a big blanket that cradles him as he is lifted. He quite liked it, looked very cosy. 

I think some parents may get upset at the point whereby hoists and tracks are mounted to the ceiling. Guess it says in big bold letters your child can't and probably won't ever walk and you need this equipment in order for you to safely move him from place to place. I wasn't phased, to me it's just something extra we need in order to make our situation work. He's only little now but in a few years my back may not be saying "ohhhh go on pick him up you can take it." 

By the way did you notice I said probably never walk. Just because we have adaptions, hoists, special seating etc. doesn't mean I give up on hoping. The day I do that is the day I've given up on him and I don't know what the future will bring........

Most likely a tracking and hoist system though. 

He just sticks his tongue out

We met with a new Speech and Language therapist the other week. I shan't go into why we have left the old one but the new one wasn't for taking us on at first. By the end of the session we had agreed she would see us every couple of months, which is no more often than the last one was seeing us. She was quite happy for us to keep trying Zack with his little tasters of foods and showed us a couple of tricks to get him to shut his mouth.

For the first few months of life Zack kept his mouth firmly shut, he kept his lips in a permanent rosebud shape so when he started relaxing his mouth and we actually saw that he had a tongue we were quite excited. Now we have to lift his chin up slightly so that his mouth closes, the poor baby can't win. He isn't too bothered, if he doesn't want you to do it he just sticks his tongue out.

The Pants has been for a hearing test today. He slept through the whole thing. He needed to be awake but managed to go into coma status for the whole session. The consultant tested his ears and he still has glue ear which could be affecting his hearing but we agreed to leave any decision to operate until he was a little bigger. For now the hearing aids are doing the trick and seem to be working quite well. As soon as we got out of the room he woke up, how on earth does he do it, I mean, really, how does he know.

Tried to chase up the OT about Zack's seating arrangement to no avail. I just ended up with a phone call from another OT to tell me that they were the wrong OT and the one I want was moving boxes at the moment so here's her number. So I asked what the difference was, apparently one deals with school children the other with seating, huh! Okay, so I asked her to phone me to let me know how long her waiting list is, the lady asked me what my number was, I said the same as the one you've just called me on. Slaps hand to forehead.

In the meantime I took Zack to look at some high chairs in Mothercare. I popped him in one, assuming he would just flop forward. I am quickly learning to not assume anything with him. He sat upright and placed his hands on the table and lifted his head up. Then he checked out what was to his left and right. Ooooooh, I thought, he likes this, how much is it.....£149.00 I don't think so, get out of the chair Pants. My thinking is that I get a second-hand one which will do until he gets his special seating. That way if he hates it we haven't wasted money that could be spent on pretty shoes for mummy.

My day was finished off nicely by a call from the epilepsy nurse to tell me that the recent EEG Zack took a couple of weeks back shows no change from the original. Even though we have been seeing less seizures the hypsarrhythmia is still there and not under control. We are being advised that the next thing to do is to give Zack a two week dose of Prednisolone. Whilst he is having this he has to go in to the hospital five times to have his bloods, urine and blood pressure tested. Great. I hate the thought of new medication and not knowing what it might do to him. But if we don't treat the seizures then they could get worse and this won't help Zack. If the steroids don't work then we have to consider a different drug. I am not looking forward to the next few days, it is so unfair on Zack. I just wish sometimes he would get given a break. I remain hopeful that we will get his seizures under control I just don't know how long it will take.