Well you can tell the summer holidays are almost over, the appointments are starting up again (with a passion). September starts with appointments on 1st, 2nd, 3rd, 4th, 5th, 7th, 8th, 9th and 10th!!!!!!! Grrrr. I’m sure more will follow.
Well Jude’s tube is playing up today. The adapter keeps on coming out. I have lost count how many times it has fallen out. At the moment Nanny Trish is holding the tube (very tightly) while Jude is having his milk and even now it keeps coming out. We are hoping that the tube will be changed next week for a button. Here’s hoping.
Also we have had a few days away in Wales. We decided a little bit of family time was needed following my news of me being made redundant last week.
Pictures will follow, but I’m having a few problems with that bit at the moment and I will need Ian’s help on that one.
We had high hopes for Jude’s EEG on Friday – a course of ACTH and Prednisolone and a marked improvement in his overall wellbeing should have been accompanied by a cleaner bill of health on the EEG…….unfortunately not.
Jude has had three EEGs since May, apparently the May one was a mess (my words not their’s) and it had improved in June but the difference between this EEG and the one in June is apparently minimal. One of the doctors had a quick word with us…..and that word was “complex.” I know where ‘complex’ is leading – multiple seizure types, difficulty controlling them…..
However, none of this diminishes what we see (and hear) from the little man. He is beginning to develop much greater awareness of his hands and arms and will happily swipe away under his play gym – actions he doesn’t repeat in other settings so we’re fairly sure now that he knows that is he waves his hands around he causes something to happen. He is also happy(ish) if you put him on his tummy, something that we haven’t been able to do for a few months now either because it would send him into a tantrum or more recently because of issues around his gastrostomy.
Rachel used to call Jude my ‘babe magnet’ such was the tendency for him to draw admiring glances almost exclusively from other women…..seems Jude is turning the tables. I took him to the doctors for his blood pressure to be checked on Friday and was sitting contentedly in the waiting room when I felt a damp patch. Having a baby sitting on your lap always carries some element of risk but Jude’s gastrostomy adds to that risk somewhat. There is a small adapter that has a habit of falling off without warning which allows….leakage. Well Jude had managed to leak on my trousers…..in a very specific area of my trousers…nowhere else…just this one place…and it looked like the only thing it could bedidn’t look like Jude had leaked his last feed on me…it looked very definitely self inflicted..nobody would have thought it anything else…
So I’m sitting in the waiting room with Jude on my lap covering up the offending damp patch and the door to the nurse’s office is a good 10 metres away and I knew I was going to be called anytime soon.
And in walks two rather attractive young mothers who cast a glance over at me and my cooing Jude with his cute sticky up hair and they sit down right between me and the nurse’s office. And I’ve got a damp patch. And I am going to have to walk right past them.
So I did what any person in my situation would do, I held Jude under his arms so his body hid the offending patch and waddled into the office in a most ungainly fashion…..and did the same on the way out.
When I get back home I find that the damp patch was a little bigger than I had realised and had actually spread from the front all the way around to the back which would have been in full view of the whole waiting room as I waddled in and waddled out.
My babe is a babe magnet no more………………….
I hope this picture demonstrates the above. Jude always likes his bath, but tonight I just spoke to him and this is the look he gave me
This afternoon I checked and changed the fluid level in the balloon that holds Jude’s gastrostomy tube in place. The fact I held my breath the whole time is irrelevant. In the words of Yoda ” Happy that it is am I”
I’ve been 30 something for a while now, in fact in a matter of months it will be 40 something. Today, I felt it.
I played football (soccer for my American friends) and realised just how much my in an out of hospital lifestyle, poor diet and irregular excercise has had an effect.
Jude, on the other hand, appears to have more energy than he knows what to do with and with good reason I hope he will push on a bit over the next few months and gain some more mobility skills so he can get around more.
This football team is a collection of waifs and strays who have met virtually through the internet. In days gone by it would possibly have been a ‘geeks team’ but even ‘normal’ people interact socially on the net these days.
Having spent my whole life never (knowingly) meeting a family with a child like Jude one of my team mates has a young lad, a few months older than Jude, with a very similar diagnosis and very similar Jude. At Jude’s age they seem to have shared similar developmental milestones but now his young lad is up on his feet and crawling around. We’ve not really aspired much in that direction recently and it has given me renewed optimism for the future.
Unfortuately, such optimism is not in abundance when it comes to playing football…….the head is willing but the body is crying out in pain.
Well I think it’s safe to say that we are back home…… I was telling everyone on Wednesday early evening “Yes we are home, no more hospitals”…….. Jude I think had some withdrawal simptoms and decided he wanted to go back to Birmingham. At about 10.30pm Jude’s gastrostomy just fell out. Aunty Lian and here family were at our house when Naomi asked “Mom, is his tube meant to look like that”? When Lian and I looked at Jude we both expressed our horror at what we saw (Can’t actually say what we said:) ) Well we had to take hime back to A&E at Birmingham to have a new tube inserted.
Since then Jude has been a little up and down, sometimes happy and a bit more of the time grumpy. Tomorrow we reduce to six steroid tablets a day.
I hope this video shows everyone who see’s it, that our Jude is coming back to us, slowly but surely.