Andrew - born at 29 weeks!

[Dona]

Just popped in to say hello! Can't believe Andrew is 2 yrs old, only seams like yesterday since I first read your posts about him. I'm not on B&B much now but always like to read about how Andrew is getting on. Give him a big hug from Archie xx

Ps his picture is stunning xx

 

[Marleysgirl]

Hiya Dona, I hope that you are too busy with real life to be on B&B and it's not anything anyone has said - you could always wander into the Toddler forums occasionally Andrew's not much into kissing boys, can he hug Archie instead?

Well, we made it through the first night with no stress. He did climb out of bed after I put him in (I could tell because something in the room had moved), but he then climbed back onto the bed to fall asleep - across the width!!! I moved him back lengthways when I went to bed and covered him with the duvet, and he stayed there all night. When I heard him this morning and went through, he was sat cross-legged on the bed playing with a toy.

So grown up. Well, physically anyway ... still waiting for his brain to catch up !!!

 

[24/7]

Well done Andrew. xx

 

[AP]

How did his night in his big boy bed go???! Xx

 

[Marleysgirl]

How did his night in his big boy bed go???! Xx

I posted at 8:06 (before you did) with what happened No problems.

 

[Foogirl]

Well, we made it through the first night with no stress. He did climb out of bed after I put him in (I could tell because something in the room had moved), but he then climbed back onto the bed to fall asleep - across the width!!! I moved him back lengthways when I went to bed and covered him with the duvet, and he stayed there all night. When I heard him this morning and went through, he was sat cross-legged on the bed playing with a toy.

So grown up. Well, physically anyway ... still waiting for his brain to catch up !!!

I love this. Getting out of bed to move something must have felt really exciting for him!

 

[AP]

mornings aren't my best time! He did fab!!!!

 

[Marleysgirl]

He's just spent 30 minutes playing in his bedroom, the first time we've really left him in there if he's not been in the cot. (There's a stairgate on the doorway). We could hear him playing with toys - hint: if you want to know what your toddler is doing, give them noisy toys! - but he didn't stand at the gate and shout to be set free.

I slept better not worrying about him climbing out of the cot and free-falling onto the floor (well, onto the spare mattress).

 

[Marleysgirl]

I know it's bad to keep bumping my own thread, but I wanted to write about today (which was a GOOD day)

Background: I started weaning Andrew at 5-6m actual, at that time he was being fed puree'd fruit and veg that I made at home. Weaning stalled when he had epilepsy, all he wanted was milk. After that (and especially once I started work), he went onto jars & pouches of Stage 1 food. Due to a strong gag reflex, we only moved onto Stage 2 food a couple of months ago, and he will only eat two flavours. He won't finger feed at all. He still has the majority of his calories from milk, which he takes from a bottle. He refuses all other liquids, and refuses various different cups.

Today we had a visit from the Community Dietitian, who has reassured us that none of this is our fault. (We knew that but it's always good to hear!) Because of his epilepsy, his gag reflex and his developmental delay, Andrew didn't get to taste a wide variety of different foods and to experience finger foods before the neophobic stage set in. Toddlers apparently go through this stage where they have learnt that some things can harm, so they protect themselves by refusing anything new - in Andrew's case, he is frightened of any new taste and any new sensation in his mouth.

So, we have to roll with it. We are to try him with new flavours, but always have his favourites on stand-by to ensure that he gets proper meals. She is switching him from Infatrini onto Fortini, which is apparently even higher calorie (!) and sweeter. We are to try to get him to take his midday milk from a cup, but not the point of starving him; she still expects him to take bottles early morning and before bed. She said he might succumb to peer pressure when he joins nursery next year and the other kids are using cups

And apparently no child ever gets to eleven still eating baby food.

Tonight, Andrew let me clean his teeth without clamping his mouth shut. Proud mum moment.

 

[25weeker]

Glad your dietician reassured you.

Holly was supposed to be moving on to fortini now she is 8 kilos but I had a voicemail from the dietician telling me she is going to put her on paediasure plus instead. No idea why though!

 

[AP]

Ah! That's Interesting on the food front! And reassuring too - you're doing all you can! Hope that he learns quickly though, I bet it won't be long!

 

[sleeping bubs]

oh thats good with dietition hope he picks up trying new things soon. Mckenzie is on paediasure now been on it for 3months good comes in 4 flavours! But now down to 1 1/2 bottles a day though!

 

[Marleysgirl]

Apparently Fortini comes in flavours, but she's ordering the unflavoured version for us ... wonder why she's chosen Fortini, when others are on Pediasure? I'll have to google and play "spot the difference"

Not so good a day today at the Audiologist. We showed her videos of (we consider) Andrew responding to toys that play just noise. We played his favourite advert, and he paid attention for the duration and then returned to banging the table afterwards. But she insists that she cannot even consider that he may have some hearing until she can see a "consistent" response to particular sounds. We are beginning to think she won't believe it until Andrew actually turns around to her and says "I can hear that". Flippin' frustrating. She's turned his hearing aids up again - at least he no longer pulls them out, so doesn't have to wear a bonnet to keep them in. That might be because they're having an effect, but possibly just because he's getting older (c.f. the recent toothbrush acceptance).

Oh well. Some you win, some you don't.

 

[Foogirl]

I hate it when they make you out to be lying or fooling yourself. You know your boy best.

Can I just say, "Fortini" sounds like a cocktail!

 

[sleeping bubs]

don't u wish med people would believe u. The doc prescribed the vanilla first but mckenzie hated it so now he has chocolate strawberry and banana which he loves and as started drinking it out of the bottle it comes with with the straw which is an improvementx!

 

[Marleysgirl]

[This is a duplicate of a post over on the thread about Auditory Neuropathy. I posted it there primarily because the two other posters would be particularly interested in today's progress ... But I know a number of you watch this thread for news too!]



We had an Audiology Review meeting today (as opposed to his regular testing). One of our frustrations has been the Audiologist treating Andrew as if he is totally deaf, because he refuses to co-operate in behavioural testing. We had told her that we think he can hear, but she's never really believed and has come up with other thoughts e.g. vibrations

Until today. We compiled some home video that shows him choosing to play with noisy toys (no lights or vibration) and he controls the sounds, it's not random hitting but a most definite press of the button to repeat a tune. We also had footage of him responding to claps & high-pitched voice, and of course we had to show him responding to his favourite Underdog television advert. The Audiologist was completely taken aback by the video.

She now believes us, and wants to work with us to determine what frequencies he can hear, and to help encourage his "listening" ability (which is linked to his attention issues). No more talk of increasing the volume level on his aids, no mention of cochlear implants. We have come out of the meeting with a referral to a specialist Speech & Language Therapist who works with deaf children, and a potential referral to an Auditory Verbal therapist.

Progress!!!

 

[Foogirl]

Woohoo! I love it when they finally listen!

The videos make it perfectly obvious he is hearing stuff - even to someone who doesn't know him. It is so irritating they refuse to accept sometimes parents know what they are talking about!

 

[25weeker]

Brilliant they are finally taking notice of what you are saying.

Mum knows best

 

[Marleysgirl]

Time for an update, I think!

Eating - Andrew's still being spoonfed, showing no signs of either grabbing the spoon himself or hand-feeding any other food. We are now up to three solid meals a day, he's on a variety of stage 2 & 3 meals at lunchtime as he continues to be relatively choosy about flavours. He still has 3 bottles of milk a day too. He has no interest at all in what we are eating, and if you hand him food, he drops it and then mouths a toy.

Development - significant developments this month include putting one toy inside another to increase the noise when he then hits the outer toy; and bringing a ball or toy train to us to roll across the floor so that he can chase it. This latter action is really good progress, as it means he is beginning to interact with us and understand that he can get our help/cooperation with things.

Speech - nothing, nada, zilch. Very tuneful with the vocalising and we get an occasional 'b' sound but nothing more. Now that his behaviour is changing, it's probably time to start again with trying to teach him signs.

Hearing - this has been the biggest change. As his behaviour has become more focused, last week he finally started to understand what was needed in the audiometry tests. He remains completely disinterested in the hidden/revealed puppets; but he loves the rotating and flashing amber light (think 'top of AA van'). He's associated hearing a sound in the test with someone switching on the light briefly - he hears the sound, turns his head, waits a second, and the light is activated as reward. Last week we got some test results from his left ear, today we got results from his right. And he does have hearing!!! He's got a mild to moderate loss in the lower frequencies, and a severe to profound loss in the higher frequencies. We return again next week to fill in the gaps on the audiogram (chart), and then they will tune his hearing aids to augment the higher frequencies more than the lower ones. We hope that once his aids are better tuned to his needs, that he'll start learning to listen to things around him and tuning into the world.

Size - I wish he'd put on some weight around his middle! He's growing consistently, still below 0.4th percentile. But he's such a skinny minny, if we get trousers of the correct length, they fall down from his middle! Roll on summer and wearing shorts.

Pre-School - our pre-schools advisor has said that she doesn't think he'd cope with mainstream pre-school from September, even with large amounts of support (though this was said before his recent improvements in development, and getting better hearing aids could also assist!) Andrew is 'on the list for discussion' to try and get him an assessment placement at a Special Needs nursery instead. We wait to hear about this, being in a social setting would definitely encourage him. I can't believe that a year ago I was worried about him going to nursery and now I'm keen for him to do so, I can see how it'd benefit him.

Think that's enough for now

 

[sleeping bubs]

hey marleys girl sounds promising he is developing in his own way Thats good about Andrews hearing hopefully it won't take long to sort out his hearing aids so he can interact better

And like you I was worried at sending Mckenzie to nursery, as he is small compared to his friends thought he would be pushed into the background but from seeing him today at a toddler group- some girls wouldn't let him play in the house and kept pushing him away and shouted at him he stood his ground and kept getting up when they pushed him over and scratched his face and went into the house and by that time the girls where taken away and told off they were 3-4yr olds though, I Felt really sorry for him but he doesn't seem bothered by it.