Today is 26th February. A year ago today Ian and I travelled to Russells Hall Hospital to find out the results to Jude’s EEG. This is a day I will NEVER forget for as long as I live, not a good day. However, a year on so many things have happened, some good and some bad.
We are still trying to control Jude’s fits (his Nitrazepam was increased on Monday) but Jude is doing well. Dare I say no illnesses since January 6th. Jude is continuing to do his daily exercise routine and it seems to be helping. He has started to try and push himself up when lay on his front and he seems to kick alot more with his legs.
His videofluoroscopy is to be done on 13th March – Friday 13th! I am not looking forward to that day as I am dreading what this test will show, but it is a test that needs to be done. It’s Ian’s birthday tomorrow and I hope the day will be a better day than last year’s birthday.
Last year Jude had a naso-gastric tube, especially when he wasn’t well it was his main source of feeding and medication giving. As he grew he became less reliant on the tube for feeding and it was mainly used for medication but the tube kept coming out and we began to feel it was more trouble than it was worth. Added to that, this tube sticking out of his nose was a constant label reminder.
So why a gastric feeding tube? It seems that many kids with problems similar to Jude suffer from aspiration – food and drink goes into the lungs rather than the stomach due to problems with the swallowing reflex. Jude has had a number of chest infections which may (or may not) be due to aspiration – the chest infections do get in the way, poorly babies don’t progress as well and Jude needs all the available time he can get his hands on.
In a couple of weeks Jude will have a videofluoroscopy when we will get a better idea of how well, or otherwise, he swallows food and liquids. We are fairly confident he deals well with solid food – still baby food as Jude hasn’t got the hand of chewing yet. His liquids are always thickened and we are less sure about how well he deals with these. Jude does over salivate and we are fairly sure that this is causing him problems as this can collect at the back of his throat and he crackles.
If it turns out that swallowing food and liquids isn’t really a problem and it is his saliva causing the problem then a Gastric Feeding Tube will be a waste of time. He takes some drugs to control his salivation but it has made him drowsy and/or creates a very blocked up nose which makes it hard for him to breath.
I’d rather not have a GI Tube, I’d rather we maintained the oral feeding route as much as possible but I am prepared to be convinced by medical evidence….if he needs it, he needs it.
At nearly 15 months old, your baby crying really shouldn’t be something newsworthy…..but then it is Jude.
Regular readers will know that Jude once lived a life of cry, eat and sleep. The tears were always pain related and only sleep provided him (and us) any respite. Since his gut problems appear to have been sorted he hasn’t cried, at all (unless he’s been knocked or bumped and it hurt).
I think if it had been any other baby it would have been a real cause for concern but we’ve sort of got used to it, it’s how Jude is – probably the drugs, I think if I was taking what he was taking I’d have an intense Hasta Manana attitude too.
Anyhows, the regional co-ordinator from Brainwave came to see us today, to see how we were getting on with his exercises. We tend to do Jude’s exercises in small chunks rather than all in one go but she wanted to video us so we went through each one by one. After half an hour or so you could tell Jude was getting a bit agitated….and then it happened, the lip quivered and he began to whimper. Cue excited gasps and a few tears from Mom and Dad and a bemused look from the lady with the camcorder.
Crying baby is not mentioned anywhere on the various developmental charts but this little event seems as big as any of the other milestones he’s reached. And for good measure he did it again later – he was tired and wanted a bottle.
How long we will remain excited by this little turn of events is another thing.
After the last hospital admission we were back for the follow-up. Thankfully, Jude’s chest has stayed clear. The myoclonic jerks haven’t cleared though so it’s another increase in his medication. Thankfully, its the two medicines he likes the taste of.
The doc reckons it is unlikely that Jude will ever be seizure free but we should aim to get them down to a couple a day. Don’t really know what that means and don’t really want to think about it too much – what he has now doesn’t bother him too much, long may that continue.
RIP Dessie Marry (8.2.09)
Jude’s Godmother, Rachel, is running the Addidas Silverstone Half Marathon on 15th Marc 2009 in aid of Brainwave, the charity that Jude visited in December.
You can visit the sponsorship page by clicking here or on the link on the right.