Joseph is 20 months old today

While Joseph is taking a quick nap, I thought I’d make my debut input on the blog to give you a quick update on how he’s doing.  He’s 20 months old today and just getting over a bout of some horrendous gastric bug.  Other than that, he’s in good form and his appetite is coming back as he has started making his little ‘click click’ noises with his tongue which I’ve taken to understand that he is either hungry or wants his dummy.  When he spits his dummy back out, I know then that he wants something to eat/drink.  His feeding by spoon went by the wayside with his gastric bug but usually, especially since he started the tube feeding at night, as he has more strength and tone, his chewing and swallowing have much improved.  He still can’t take very much from the spoon and all his food has to be very smooth (for fear of him choking) and any drink we give him has to be thickened, as fluid goes down too quickly for him to cope with and he could end up aspirating on that too.

Speaking of which, it was sad to read about the death of Lorenzo Odone, the subject of the film  ‘Lorenzo’s Oil’.  He died from aspiration pneumonia, which was caused by food getting stuck in his lungs.  This is a huge fear for us.  Lorenzo had Leukodystrophy too. There are 34 different types.  They all have similarities, in that they are as a result of problems with the growth or maintenance of the myelin sheath. There are many different genes responsible for this process and defects in any of these genes may lead to Leukodystrophies.  The symptoms may vary from one Leukodystrophy to another, depending on the differences in their genetic cause.

Oh, oh, I must call it a halt there – little man has just woken and is hollering. I’ll keep you posted when I can on how he’s doing. Thanks for reading.

Colette

PS: Joseph is very proud of and adores his Daddy.  He has a huge smile for him, no matter how grumpy or unwell he is.

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