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Thought it was about time I did another as some have been asking how he id doing and I hate taking over someone else's thread with it. The little dude had his 4th birthday recently which unfortunately he was sick on, but we celebrated the next weekend anyway and he had a great time. This next 12 months or so is going to be pretty hectic and some big stuff happening. After meeting with his heart surgeon we were told he wants to do his next heart op in the next 12-18 months, but he also wants the trach out before we do that. So, after talking with his other specialist Drs the timetable to get the trach out has been pushed up and we are working aggressively but safely on steps to have him ready to be without the trach. He can do at least 20 minutes with his speech valve over his trach now which is great for 2 reasons. First, it meas he is breathing in through his trach but exhaling through the mouth (as the speech valve is a one way system) and secondly I get to hear his voice so much better than when it leaks around the trach 
He is also slowly doing some food trials, and is learning to swallow some very small bits of food. This has to be taken very slowly though as he is not used to doing this and the muscles that coordinate swallowing still need some strengthening etc.
I think the best part lately though has been when he has the speech valve on and I make him laugh he comes out with the best laugh. I think it has taken 4 years for me to hear his natural laugh, but so worth it. I wish I knew how to put a vid up of him doing it.
Anyway, thanks to all those that ask about him. I appreciate it.
He is also slowly doing some food trials, and is learning to swallow some very small bits of food. This has to be taken very slowly though as he is not used to doing this and the muscles that coordinate swallowing still need some strengthening etc.
I think the best part lately though has been when he has the speech valve on and I make him laugh he comes out with the best laugh. I think it has taken 4 years for me to hear his natural laugh, but so worth it. I wish I knew how to put a vid up of him doing it.
Anyway, thanks to all those that ask about him. I appreciate it.
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Small weep here but great news, genuinely chuffed for you. Sounds like some tough hurdles to clear but he seems to be taking them with aplomb thus far, he's quite the chap.
God bless the little fella, Hank.
I wish him nothing but the very best in his future battles..
Chin up little one and keep punching and smiling..
I wish him nothing but the very best in his future battles..
Chin up little one and keep punching and smiling..
I totally forgot to add the best bit of the week ffs
Definitely sounds like I have been hearing dada this week
Definitely sounds like I have been hearing dada this week
Wonderful news that Hank Junior is doing much better, great stuff 
all the best hank, puts things into perspective, i was on the train the other day and a women walked past me holding someones hand who was trailing behind her, the girl behind kicked into my feet and carried on walking to her seat,
I looked up annoyed waiting for an apology, and I saw the side of her face, which looked a bit different, as she sat down she had the most disfigured face see, no eyes, (which explains not seeing me) squashed nose and ear that looked like they had been melted, my heart sank, the women she was with must have been her carer, whatever problems most of us there is always someone much MUCH worse off
I looked up annoyed waiting for an apology, and I saw the side of her face, which looked a bit different, as she sat down she had the most disfigured face see, no eyes, (which explains not seeing me) squashed nose and ear that looked like they had been melted, my heart sank, the women she was with must have been her carer, whatever problems most of us there is always someone much MUCH worse off
i feel daft talking about being bored with food now.
cant even imagine how tough that must be for you. sounds like torture. im glad things are improving and i hope everything goes well for you and the lad.
cant even imagine how tough that must be for you. sounds like torture. im glad things are improving and i hope everything goes well for you and the lad.
Really great to hear these positive updates, Hank. Hope to keep getting them.
It's only because I'm not a massive bénder like Ken Masters that you don't get a small weep from me too.
It's only because I'm not a massive bénder like Ken Masters that you don't get a small weep from me too.
Great to hear that he has made such terrific progress. Best of luck to the wee man Hank and my thoughts are with him.
Fantastic news mate.
I didn't really have a clue to how a trach worked until Tracey had hers put in. It's certainly not a nice thing for anyone to have to go through, especially a young lad. Watching the nurses 'cough' her was a horrible thing to have to watch. She had hers in for six weeks so I can only imagine what you've been through.
Hank Jr sounds like a proper little superstar. And to manage twenty minutes on the speech valve couldn't have been easy.
I wish you all the luck for the future dada!
I didn't really have a clue to how a trach worked until Tracey had hers put in. It's certainly not a nice thing for anyone to have to go through, especially a young lad. Watching the nurses 'cough' her was a horrible thing to have to watch. She had hers in for six weeks so I can only imagine what you've been through.
Hank Jr sounds like a proper little superstar. And to manage twenty minutes on the speech valve couldn't have been easy.
I wish you all the luck for the future dada!
casemoney. She's healthy and happy, but only time will really tell to how good her movement will ever get.
Stay strong for him Hank , he sounds like a really great lad
It must be very tough on you all at times & certainly does put more personal problems right into perspective .
The motivational speaker Napoleon Hills lad was born deaf but he never gave up believing & his positive mental attitude eventually paid off also
My best wishes to Tracey also
It must be very tough on you all at times & certainly does put more personal problems right into perspective .
The motivational speaker Napoleon Hills lad was born deaf but he never gave up believing & his positive mental attitude eventually paid off also
My best wishes to Tracey also
Cheers kenbo - all the best to you and your wife too - hope she makes as much progress as she possibly can
Best of British to your missus as well s.kenbo. Stories like yours and that of Hank junior is a reality check about what is really important in life.
Keep making jr laugh Hank. You are a great dad, we all know that and it is very humbling hearing these updates.
Top stuff Hank, hope the improvements continue. Hope he gets to see you cross the marathon finish line whenever you get the chance, 2015/2016 perhaps, would be a hell of a motivating factor. Best of luckto Kenbo's wife too. Keep the updates coming both of you.
Has to wear glasses now too - whatever the fk next? 
Lots of changes after seeing the specialists last week. The biggest news from that appointment is that in 2 months time Jr is going to be admitted to hospital where they will cap his trach - meaning that no air will come in or out of it and he will have to breathe in through his nose and mouth. Depending on how well that goes we will be on our way to having the trach come out.
Also, he has a swallow test this week to see if he is aspirating at all when he swallows. I think he is, but at least we can see the scale of it and work on feeding thick puree etc. Exciting but nerve wracking times ahead!!
Also, he has a swallow test this week to see if he is aspirating at all when he swallows. I think he is, but at least we can see the scale of it and work on feeding thick puree etc. Exciting but nerve wracking times ahead!!
Still thinking of you mate. I really hope it all goes to plan. 
Fingers crossed for the wee man Hank and of course for your missus as well s.kenbo.
Cheers slippy. I hope things are improving still on your side kenbo.
hope everything goes well Hank ,sounds good progress .
glad the little lad had a great birthday a while back
glad the little lad had a great birthday a while back
Now then Hank,
Havent been on here for a while and good to see a positive update when I sign back on.
Glad things are going well for your son and you had a good time for his birthday. He will soon be pestering you with his xmas lists !!
All the best, ken
Havent been on here for a while and good to see a positive update when I sign back on.
Glad things are going well for your son and you had a good time for his birthday. He will soon be pestering you with his xmas lists !!
All the best, ken
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