Oscar's speech is somewhat of a concern to us at the moment, mostly in terms of pronunciation. I'm pretty confident that he doesn't have any issues with language as he understands what we say, he points to thinks and tries to name them and repeats what we say. The words he can say he uses in context and he signs quite proficiently to make his needs known. He has started creating his own signs which, with a lot of pointing and guesswork, we are starting to figure out. I'm not sure where he's getting them from and often can't see the link - for example, he touches his two index fingers together to sign"play dough". Just in the last few days he is starting to really try and repeat words, although none of them sound like what he is trying to say.
I'm going to use this post to detail, for my own benefit, where he is at the moment so that I can see his progress and get things in some sort of order for his 2 year review with the Health Visitor.
WORDS HE CAN SAY WELL:
Mama
Yeah
No
Owl
Papa
Nana (Jenny)
Pepper
WORDS HE CAN PARTLY PRONOUNCE
Ball, book, bin, bird, box, bath, bear, Bing, bounce, bus - he says "ba" for all of these
Banana - "nana"
Shoes - "oo"
Gone - "ga"
He's very recently started saying "mo" for moon and mouse too
WORDS HE STRUGGLES WITH (AND WHAT HE SAYS INSTEAD)
Daddy - "gaggy"
Help, please, van, car - he says "ba" for these too
Bye, done, ta - "ga"
More - "nor"
Lawnmower - "nor-no-ner"
Hedgehog - "ge-goh"
Badger - "ga-ger"
Digger - "giga"
He struggles to make vowel sounds other than "ah", "oo" and "ow". He only has "b", "g", "n" and "m" as consonants but they sometimes get mixed up too - for example, he says "ba" for everything but then says "ga" for bye which should be easy for him.
He makes a lot of animal noises and they mostly sound like what they're meant to although he does say "ba" for "quack" and "mmm" for "moo".
He also says "gmm gmm gmm ba" for Stick Man, gingerbread man, Postman Pat... sometimes with more or less "gmm" noises but always basically with his mouth closed, like he's really having trouble forming the words.
Nobody else understands much of what he says and they don't understand the signs either but he gets by. We don't leave him with anyone except nursery and occasionally Ant's parents (Jenny is quite good at understanding him). He's having a lot of tantrums and that's probably because he's frustrated that he can't say what he wants to and we often don't understand him.
He says "ba" for pretty much everything, usually accompanied by a sign or pointing so we know what he's getting at. Unless he comes on phenomenally in the next six months I'm expecting he'll need some sort of speech therapy. He comes on in fits and starts but his pronunciation doesn't improve - he said virtually nothing by 18 months except "daddy" and "owl", not even "mama", but then he had a spurt of learning lots of words. It slowed down again but he's currently trying to repeat every thing and getting a lot more communicative, however his pronunciation still hasn't improved. I'm determined to advocate for him as I genuinely believe knows the words and is of average, if not above average, intelligence so I don't want to see him struggle and give up.
I'm going to see his Key Worker at nursery about it tomorrow so will be interested to see what she says!
Mine and my husband's journey to have a child free from Huntington's disease and keep future generations safe!
Monday, 12 August 2019
Wednesday, 7 August 2019
21 months
Weight: He was weighed on 30 July and was exactly 11 kg (24 lb 4 oz). His weight was on 25th-50th centile which is the highest it's been for a while! He was 80.8 cm tall (9th centile) and head circumference was 49.5 cm (just under 98th centile) so clearly he's got my height and his daddy's head.
Health: Things have been up and down. We saw the Paediatrician on 30 July and he's not concerned about the chestiness as he thinks it's just secretions and not reflux. Given that, we are weaning off the ranitidine. He's down to just an evening dose at the moment and then once that's weaned we will try him off the Piriton and see how he goes. I'm writing this a bit late (7/8/19) as we've had a busy weekend but I think he might be coming down with something today. He's seemed alright all day but he woke up from his nap with a low-grade fever and it's come and gone all afternoon. This evening he was tired during his stories/snack and didn't even drink his milk, he didn't want a bath and he fell asleep almost as soon as his head touched the pillow, even before I'd finished his story, which is unheard of! His temperature was around 38.5 at bedtime but he seemed happy enough so I didn't give him any Calpol, just keeping a close eye on him. We are starting to question whether he may be on the autistic spectrum due to some of his behaviours and the epic tantrums/head banging he's having but I'll do a separate post about that I think as it'll take a while to explain.
Sleep: Bedtime is still pretty smooth (although last night took a long time and I had to pick him up and rock him which he's never liked before). He generally has one bottle in the night, around 3 and then wakes for the day anywhere between 4:30 and 6:30. He has been waking to ask for his bottle around half 12 but if I tell him to lie down while I go get it he's often fallen back asleep by the time I get back and then ends up actually having it around 3 so not too bad. He's randomly started wanting to get up in the night now and it can lead to some serious upset when I don't let him but it's only happened a couple of times so hopefully it's a short-lived thing. He generally naps well and has around 1.5 - 2 hours anywhere between 11 and 2:30. When he's at home it's usually asleep just after 11 but on nursery days he falls asleep en route home at around 12:30. He's also decided his little TY Peter Rabbit toy is now his comforter and he goes everywhere with him, it's very cute.
Development: He's picked up a few fears lately - one of which was the bath, but after a LOT of patience and work on water play we seem to have cracked that one. His speech isn't coming on quite as quickly as we might like but he is trying to say new words, his pronunciation is just not great. He signs really well and can get his wants/needs across. He's starting creating his own signs and we have no idea where they're coming from - we only manage to guess what they are from the context but nobody else will have a clue! He's tryingt o run and is getting better at climbing. He can blow bubbles with a bubble wand and uses a spoon and fork quite well. We are trying to work on counting and colours at the moment - it's hard work due to the lack of speech but I'm still introducing the concept.
Likes/Dislikes: He LOVES diggers at the moment and playing with "big kids", anyone 6 or older generally. He refuses to acknowledge children his own age. His favourite food is cous cous, pretty much the only thing he'll eat these days although we are working on it. He's at his happiest when he's out and about exploring - he'll walk through woods and such for well over an hour just looking around and toddling along. He loves animals although mostly from a distance. He has a bit of a TV obsession which we are working on (he had way too much TV when we were both poorly a few weeks back and it's been hard to wean down) - he loves Bing, Waffle the Wonder Dog and the Julia Donaldson TV adaptations. He still really loves books and loves pointing things out in them as I read - current favourites are Here We Are (with a big page of animals), A Busy Day for Birds and Room on the Broom.
Nursery: He doesn't eat at nursery, except for one random corned beef hash but his behaviour is apparently impeccable. I'm waiting to speak to them about his development/behaviour issues (he bit me the other day) but they're generally happy with his development and just want to work on his speech.
Me: My course is going well and I've passed my third assignment so I'm over halfway there now - I really need to get started on my fourth!
I'm struggling health wise and have been to the GP. She's requested some bloods and I'm going to be referred to the Chronic Fatigue Service as there's no local EDS specialist. I'm having a lot of pain in my hips at night and generally feeling exhausted. My hand therapist gave me a splint for my little finger (which she had to make as my fingers were too small) and I go back on 6 September to discuss it and see what issues I've been having etc. I think I have a condition, linked with EDS, called dysautomnia which explains most of my symptoms. Oddly enough I was fine while pregnant and mostly fine while breastfeeding but I assume my blood pressure is back down to being stupidly low now I'm back to "normal".
Health: Things have been up and down. We saw the Paediatrician on 30 July and he's not concerned about the chestiness as he thinks it's just secretions and not reflux. Given that, we are weaning off the ranitidine. He's down to just an evening dose at the moment and then once that's weaned we will try him off the Piriton and see how he goes. I'm writing this a bit late (7/8/19) as we've had a busy weekend but I think he might be coming down with something today. He's seemed alright all day but he woke up from his nap with a low-grade fever and it's come and gone all afternoon. This evening he was tired during his stories/snack and didn't even drink his milk, he didn't want a bath and he fell asleep almost as soon as his head touched the pillow, even before I'd finished his story, which is unheard of! His temperature was around 38.5 at bedtime but he seemed happy enough so I didn't give him any Calpol, just keeping a close eye on him. We are starting to question whether he may be on the autistic spectrum due to some of his behaviours and the epic tantrums/head banging he's having but I'll do a separate post about that I think as it'll take a while to explain.
Sleep: Bedtime is still pretty smooth (although last night took a long time and I had to pick him up and rock him which he's never liked before). He generally has one bottle in the night, around 3 and then wakes for the day anywhere between 4:30 and 6:30. He has been waking to ask for his bottle around half 12 but if I tell him to lie down while I go get it he's often fallen back asleep by the time I get back and then ends up actually having it around 3 so not too bad. He's randomly started wanting to get up in the night now and it can lead to some serious upset when I don't let him but it's only happened a couple of times so hopefully it's a short-lived thing. He generally naps well and has around 1.5 - 2 hours anywhere between 11 and 2:30. When he's at home it's usually asleep just after 11 but on nursery days he falls asleep en route home at around 12:30. He's also decided his little TY Peter Rabbit toy is now his comforter and he goes everywhere with him, it's very cute.
Development: He's picked up a few fears lately - one of which was the bath, but after a LOT of patience and work on water play we seem to have cracked that one. His speech isn't coming on quite as quickly as we might like but he is trying to say new words, his pronunciation is just not great. He signs really well and can get his wants/needs across. He's starting creating his own signs and we have no idea where they're coming from - we only manage to guess what they are from the context but nobody else will have a clue! He's tryingt o run and is getting better at climbing. He can blow bubbles with a bubble wand and uses a spoon and fork quite well. We are trying to work on counting and colours at the moment - it's hard work due to the lack of speech but I'm still introducing the concept.
Likes/Dislikes: He LOVES diggers at the moment and playing with "big kids", anyone 6 or older generally. He refuses to acknowledge children his own age. His favourite food is cous cous, pretty much the only thing he'll eat these days although we are working on it. He's at his happiest when he's out and about exploring - he'll walk through woods and such for well over an hour just looking around and toddling along. He loves animals although mostly from a distance. He has a bit of a TV obsession which we are working on (he had way too much TV when we were both poorly a few weeks back and it's been hard to wean down) - he loves Bing, Waffle the Wonder Dog and the Julia Donaldson TV adaptations. He still really loves books and loves pointing things out in them as I read - current favourites are Here We Are (with a big page of animals), A Busy Day for Birds and Room on the Broom.
Nursery: He doesn't eat at nursery, except for one random corned beef hash but his behaviour is apparently impeccable. I'm waiting to speak to them about his development/behaviour issues (he bit me the other day) but they're generally happy with his development and just want to work on his speech.
Me: My course is going well and I've passed my third assignment so I'm over halfway there now - I really need to get started on my fourth!
I'm struggling health wise and have been to the GP. She's requested some bloods and I'm going to be referred to the Chronic Fatigue Service as there's no local EDS specialist. I'm having a lot of pain in my hips at night and generally feeling exhausted. My hand therapist gave me a splint for my little finger (which she had to make as my fingers were too small) and I go back on 6 September to discuss it and see what issues I've been having etc. I think I have a condition, linked with EDS, called dysautomnia which explains most of my symptoms. Oddly enough I was fine while pregnant and mostly fine while breastfeeding but I assume my blood pressure is back down to being stupidly low now I'm back to "normal".
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