Jude’s Review

Every 3 months or so we get together with as many of Jude’s therapists/nurses to catch up on his progress. The last (first) one was quite useful, out of that meeting there was agreement that some of his medication need to be changed to alleviate his symptoms of acid reflux – since that happened Jude’s health in this regard has been so much better, few if any problems since makes for a much more content Jude.

The general consensus in the room was that Jude has improved in many areas since that first meeting. His head control is better, his IS appears to have gone (albeit replaced by myoclonic jerks), his weight has been steady and appropriate and he is beginning to make a connection between himself and his limbs. Some of the progress is small, barely noticeable until you look back on where we’ve come from, but there is progress.

Other things agreed at the last review included the various pieces of specialist equipement that have since been assessed for and we ether now have or are in the process of getting – high chair, push chair, car seat, sleep system.

As oft reported on this blog, Jude has had a succession of chest infections. About every six to eight weeks on average throughout his life. This means a week getting ill, a week ill and a week recovering – upwards of 50% of his life dealing with chest infections have no doubt compromised his development.

Although the last bout a few weeks ago was viral, there is ongoing concern that many of these infections are caused by aspirating his liquids. It has been suggested that Jude has a videofluoroscopy. This will take a good look at how Jude swallows and how often he might be aspirating – if it is too often they say we will have to consider another feeding tube – either a nasogastric tube, which he had before, or  a gastric tube so that he can be fed directly into his stomach. Neither option appeals much but I feel that if the results are conclusive and not in Jude’s favour it is probably something we are going to have to swallow (excuse the pun).

So from this review we will likely look at a referral for a videofluoroscopy and also move forward with the sleep system assessments. We also discussed his sight issues and whether we would be able to move forward on this as we are a little in the dark as to Jude’s quality of sight – at times we think he might be focussing on something, but equally that could be an absence seizure or day dreaming.

Onwards……

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On the up

Jude seems to be getting better each day.  He finished his antibiotics on Wednesday and will finish his diazepam on Wednesday next week.  That day however, his nitrazepam will increase.  So we will just have to see how things go with that.  He now seems back in his old routine of eating, oh and enjoying waking up for a hour or so in the night to have a little chat to himself.

On Wednesday 7th when he was in hospital we took delivery of his new car seat.  It is absolutely brilliant, although Ian and I are having to get used to strapping Jude in, this can sometimes take a little while but we’ll get there.  Anyway Jude is now a fully fledged traveller, car journeys are no longer a trial, they are fine actually they are great.  At the weekend Jude visited his Aunty Helen’s house for the first time.  This was an event I was very excited about as he had been unable to travel before, and I think anyone I have told about today hasn’t really realised the importance of this visit to me.  We had a lovely afternoon, so if you are reading this Helen, thank you x

2009 Version II

It could never last, a whole 6 days of 2009 passed before Jude was admitted into hospital – at least it was something different this time, bronchiolitis caused by the Human respiratory syncytial virus

I was working down in London Monday and Tuesday and when the various professions descended on Jude for their first 2009 visit on Monday Rachel knew they were concerned – it was probably that concerned look they had on their faces. Anyhow, when they came back the following morning they were still concerned and Jude was admitted back onto the ward. His oxygen levels were low, his skin mottled and his breathing laboured.

Still, 24 hours and a bit later and he’s out albeit on a new drugs regime. He now has an inhaler to assist his breathing and a new drug for his myoclonic jerks as the first one didn’t work.

So, in now particular order Jude’s drugs

The inhaler.

Epilim (Sodium Valporate) – the anti epilepsy drug that we will wean him off over the next few weeks.

Nitrazepam – the new anti-epilepsy drug that we will wean him onto over the next few weeks.

Domperidone – to stop his food coming back from where it came (made a massive difference when it was increased in the Autumn).

Diazepam – prescribed when Jude was real bad last Summer and now being reduced towards withdrawal.

Bacolfen – used to suppress the symptoms of Cerebral Palsy.

Some antibiotic – he has various ones every now and then, usually for chest infections.

Omeprazole – to reduce the acid in his tummy.

Senna – to make what goes in his mouth come out a little easier at the other end.

He also has a patch to dry up his saliva a bit to stop him dribbling too much but we came off that as it dried up other secretions too and he needs to cough them up.

10 drugs, 14 months old. He will have 8 of them in the morning – it’s almost a meal in itself.

Today is one year since my dad passed away. I was meant to be in Ireland to ‘see him’ but I couldn’t make it. Dad, if you’re reading this – I’ll be over sometime….promise.

Jude's Grandad John

Jude's Grandad John

2009

Well, we did it!  We managed to get through the year.  I know there were times when we thought we would never get through what we were facing, however we stuck together and got though it.  We ended 2008 at Pete and Su’s house, celebrated with more food and drink and party poppers.  Nathan was most excited about being able to have a glass of Bucks Fizz or as he called it alcoholic Orange juice!  Jude hadn’t been too well again so on new year’s eve morning took him back to the doctors just to check his chest.  Well he was given some more antibiotics as his chest is still not fully cleared.  But we went armed to the party with Jude’s drugs, anti biotics and good old fashioned calpol.  We all had a lovely night and didn’t leave until 1.30am!

new-yr-with-joe

Needless to say that by 1.30am, just was fast asleep snuggled up with me

christmas-081

All that i left to say is:  Happy  New Year to everyone that visits Jude’s site and a huge thank you to our friends and family for their unbelievable support in 2008 and to everyone who has visited and left comments and kind words on Jude’s blog this last year – Rachel x

Christmas Wishes……… Belated

Well Christmas was a lovely time, busy but lovely.  We had my parents over for Christmas Day and lunch went well, Ian even commented it was the most relaxed lunch preparation ever!  Jude even sat in his high chair at lunch time (Please note to all who know us – the customary jar of egg custard on the table!)

christmas-lunch

Jude hadn’t been too well before I chest infection but was starting to recover.  Much fun and food was had by all.  I retreated to the sofa for a sleep whilst Doctor Who was on and then, off we all went to Granny Elaine’s house for Christmas night.  I was so lovely to go back to Granny Elaine’s as she had been away in Ghana for two years.  Anyway as I’d been suffering from a cold (along with the rest of the country) I left by about 10.50 with Joe and Jude and finished the night having a Christmas cuddle in my bed with Nath Joe and Jude.

Our Visit to Brainwave

Well you can all tell how busy we’ve been, I am only just entering notes about our visit to Brainwave in early December.  We had a very busy full on two days in Bridgewater, but it was brilliant.  The boys enjoyed their time spent their with their baby brother as did we.  We were shown a series of excercises  to do with Jude every day.  This focused the mind so much and did us all good to go away together as a family.  Nath and Joe got really involved with the exercise routines and Joseph was even used by the physio in the pool to demonstrate how to do some on the water exercises.  Nathan has written some wonderful notes about each session, however with the madness of Christmas I put the book in a very safe place which is somewhere……. very safe.  The picture I have attached was taken on the last day right before we left.  I think it shows how tired the boys were, but it was a good tired.  We go back to Brainwave in April for our refresher day.

brainwave