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“He shouts at his big sister when she’s annoying him!”
Tristan Lee Hall, Trisomy 18, 01/23/2008, Blackpool, Lancs, England
Hello everyone, I’m Tristan’s mum, babs. I hope my journey so far can help you, as information is very limited but as the years have gone on I have found groups like this and more on facebook and the information that is available,well it does not give much hope to you nor are you given any by the doctors, it feels like doors are slamming in your face when the word t18 is said, so this is are’s so far I have updated this from 2010….I have three children, my youngest has t18 (full), I knew nothing of the syndrome, never even heard of it until Tristan was born,so it was a total shock when i was told there was a problem after he was born, I had gone with concerns over the pregnancy but was told everything was fine, they also missed things on my scan! when i came round from the emergency c section, still dazed i knew something was wrong , i just held him close, and knew he was going to be special. he was in hospital for 3 weeks, struggling to gain weight and keep warm they allowed him home and the smile on my face said it all,when he was 8 mth old he was rushed into hospital, very ill with chest and water infection,i thought i was going to lose him them, but he was being looked over and my little man recovered,he was back in a few days later with a water infection again, 3 weeks in total he was in hospital for…..not going to say that was easy either,he has been on some medicine since then. Over the past couple and half years it has been some what of a haze, time has gone so so quick,at first he was feeding from a tube,but he wanted the bottle instead!,it took a while for the solid food,many months,but with many different taste samples he finally took some, he loves custard and the jars of fruit,he also likes jelly and cream, muller yogurt, all his food has to be “lump free”,he does not like any savory, he has a sweet tooth, he has come of the infatrini and now on full cows milk, he is now 2 1/2 years old, (UPDATE he did start to vomit a lot and was changed to several different milk, like goats milk, lactose free, soya and more, he now has lactose and pediasure peptide vanilla mixed with veg or fruit pouch and sugar to boost calories as he went of all the above foods! also did try things like duo cal and pro cal to boost weight and he is now feed via a syringe as the bottle was taking to long, he does not need to be fed via tube, he only needed this for the first couple months when he was born)
He has a very cheeky character,he has a special chair to sit in and his standing frame to help with posture and he also has a p pod chair to relax in, his pram also helps his posture, and he gos all shy when his brother comes to say hello, hes not sitting without support, but he rolls himself side to side, (UPDATE he can now sit in the craw position and lift himself up with no help, can go from led down to standing with support for balance, ladybug by Lamaze helped with the crawl position, likes to say yes and no with head movement, blinks his eyes at you, copy’s sounds you make, cuddles you ) also has a favourite toy, to which i have had to tie to the cot because hes getting so “violent” with it lol,hes pulls it over onto himself and he did get his finger trapped! he also loves pulling hair! hes such an inspiration to us,and a joy, he has taught us to see what is important, some things have been very challenging,like the emotion side of things,this can be very hard to deal with sometimes, but when i get on a low, i just think to myself….don’t think of if or when…. think of now,someone here is showing me never to give up and i never will, it just makes you fight all the more, and the true champ is Tristan, hes a true little miracle x ….. HE IS NOW 6 YEARS OLD, and doing well, he loves the outdoors now, likes a lot of contact with me, he has some form of exercise everyday and he has his own sensory room at home, which was well worth doing, the bubble tube light was a good buy and the carousel bells.
Does not like the wind in his face, we hibernate in winter to keep him away from the bugs going around and people who are ill are not allowed near him, he has had lots of colds, one more chest infection, this is the only time he has needed oxygen as well, he stays in the mid 90’s, has had several u t I, c diff infection and more, he does have some damage to his kidneys, he has a small v s d with p h, along with some others things but I don’t want to dwell on this and I want my time spent with Tristan to be happy, it was a fight to get to this point and still have days where it gets to me, for any new mum who has a child with a syndrome I would say ” never give up on hope” x