Huggies Forum

All mummies and daddies with beautiful cleft palate babies - c'mon in! Rss

Hey Karen! Thanks for dropping in! Seeings you have done the whole kit and kaboodle can you tell me... The Jaw distraction surgery - is it necessary for speech or dentistry or what - I am not sure what issues we have yet to face!

I just did 'mother's help' at kindy and realised DS has shocking hearing deficit compared to the other kids - would you say that is realated to the PRS too? I have ENT next week so I will ask them about it too

Anyway

Thanks for saying Hi! I am bowing down to the wisdom of the 'been there done that' parent LOL!

Victoria xx

Hi Victoria

Goodmorning all, the jaw surgery has been put off until now because the doctor wanted to wait until she stopped growing. The main reason for it is because of her teeth, the jaw around the chin area as you know is quite small and the teeth dont sit straight, some are behind the front ones. We do have an option of having those teeth out but it could lead to a receeding gum line.
With your DS hearing, it can and mostly is due to the PRS. The ENT will probly recommend grometts to be put into his ears to drain the fluid. My DD has had them twice and doesnt have any hearing probs and she is quite well spoken. All kids are different and some are more severe than others.
Does your DS have hearing test every now again? because he should be.
Hope you have a great weekend and look forward to talking to you again soon. Karen

That is very interesting Karen - thanks for letting me know! We have a card from the government that gives us 80% discount on all dental treatment because DS has PRS - did you get that too? We have had one set of grommets - one has dislodged recently and the other is in so I guess the ear with the dislodged grommet maybe is gunked up again. We have had a lot of hearing tests, but never a full one because DS is petrified of them. He reaches hysteria every time we go and we have one on wednesday so I am not looking forward to it. Hearing test trauma at 11.45 followed by ENT trauma at 2.00 - another appointment he is petrified of, We are going to have a really cr@ppy day on wednesday! Poor DD (4 months) will have to be carted round the hossy all day too. DH is away interstate so it will just be me and the kiddywinks.... can you tell I am filled with enthusiasm? LOL! Definately Pizza for tea on wednesday night! Heck Maccas for lunch probably too - the choice is pretty good in the children's hossy cafe though, so I might be able to do that instead.

We have some teeth for DS that haven't appeared and the dentist warned us that 3 lots of one tooth might all come through in the one place - has this happened for you? She will do x-rays in 3 years time to check it all out and see what the situation really is.

Have a good weekend too Karen - Easter soon, although your elder children are probably not looking to be entertained through the easter holls eh? I am doing a egg hunt in the back garden, and I painted two eggshells to hide a small gift in - I made a playdough nest which is baking in the sun at the moment, to put my eggshells in. I thought it would be fun to smash the eggs and find the little gift in there - don't know what though - only so many things will fit! Maybe a roll of stickers or something!

Victoria xx

Hi, just quickly popped back in, its funny cause things I have forgotten about, you have brought up. Like the teeth for instance DD had a tooth down the bottom that was actually two teeth fused together, so it was like one big tooth with a groove down the middle.
Call me sentimental, but I still have it. lol.
Also on the money side of things, I did get the 80% and my othodontist was really great as I had talked to him about having my teeth done and he said if I wanted to he would do it at the same time and would give me a family discount. My older DD had already been to him for braces so now my younger DD and I had braces on together. Strange but true. He was so wonderfull.
I thought I should tell you that the 80% only last until they are 25 but I think that is changing soon to 22.
All her surgeries for her jaw will be all public so no paying for that. I was going to go private but very expensive and you dont get much back from Medicare.
Anyway I will be thinking of you on Wednesday and I hope all goes well, its going to be a long day for you and the kids, but maccas and pizza sound great.
Take care and let us know how you go. Karen

I was reading back about the arm braces - gee we hated those braces but I can't bring myself to throw them away!! DS would try soooo hard to suck his thumb with them on - it nearly broke my heart every time! THey told me it would break his habit - nope, still got a thumbsucker!
we just got back! I prepared DS yesterday with an online book, a discussion about what would happen with the wording the audiologist gave me, and of course we mentioned the bribe.

So I took him today - he double checked that he was getting a toy and seemed happy enough. The audiologist was really good and treated him very carefully, lots of clapping and praise and playacting to get him on board. Unfortunately as soon as anything went near his ear he reacted really badly (but hooray - no vomit~!) so unfortunately I had to hold him down to get the testing done and again hold him down for the ENT to check his ears. THe parents in the waiting room heard him screaming from within the 'soundproof' room(!) - It was horrible for him and upsetting for me, but we got through it, and no we have 4 weeks to prepare for the next one! So we did take him for ice cream, babycino, a play in the park before we went home. End the day on a good note.
Hi Victoria

Popped back in to see how things went, I see it went "as well as it could" sounds like he's slightly getting used to things, have you thought about play acting with him and maybe using a teddy bear pretending he has an earache or something. You know play doctors.
Though you sound like the type of mum who has tried everything.
Pop back in soon. Karen

Hi Karen - sorry I took a while to respond - I have been having a little 'offline' time to sort my own head out, as I have been feeling a little low lately. We have follow up appointment on friday, so DS and I are doing all the preparation again at the moment. I wonder if sesame street do a DVD of viciting the doctor - we have their potty training one and it is done really well, and I know they have other 'life situation' dvd's. I will have to look into it.

On another note, how do you describe your DD's PRS to people? DO you say she had a disability or a birth abnormality? It sounds really silly but I have been struggling with how to describe it to people who ask. I said birth abnormality when it was diagnosed but my dad got all upset about that term as he felt it was wrong to describe a child as 'abnormal' - I get his point! I have said disability before now, as being unable to breath properly or eat without a NGT seems a little disabling to me, but I just don't know if it is an official 'disability'!

Anyway

Hope everyone is doing well with their beautiful children - all of them!

Victoria xx
Hi Victoria,

Sorry to hear that you've been a bit down of late, hopefully soon you'll be back up there. I know it can be quite frustrating and sometimes you feel as if you've taken two steps forward then one step back..

I'm sorry I didnt realise your DS had a NGT, he must be a little bit more severe (thats the only word I can come up with) than my DD. When people asked me what was the problem with her, I just told them she was born with a cleft palate and that was it, I did say that she had a few other problems associated with it but thats all. People seem to know or of heard of a C/P than PRS.
If you say PRS it takes all day to explain it to them, thats why I say C/P most people have heard of that. It also just depends on where you are, if people come up to you in the shopping centre and ask whats wrong just say he has a C/P thats a little bit more severe than others. I hope what I've said makes sense, it depends on who you mean asks you what's wrong with him.
I'm usually on sometimes during the day and if you want to chat more or ask me anything I'm here. I really hope things pick up for you soon.
Hello to all the other mummies out there as well, maybe they can offer a bit of advice. Buy for now and take care. Karen

Hey Karen - I might have accidentally led you astray he had his NGT when he was a bub, but not anymore. They did the training thing to let us take him home with his NGT as he 'lived' in the hossy for a while after he was born, and naughty, naughty me I accidentally pulled the srynge bit back up a bit once after the milk had gone down! Ohhh I still feel a bit guilty about that LOL! I blame it on tiredness! I got a bit confused with the test that you do to see that the NGT is in place!

I am OK - just feeling so homesick ATM. Home life feels a little bit unstable - Reno's in progress here(!) and DH keeps telling me that he wants to move to Indonesia or Botswana or somewhere equally silly when you spend so much time in the health system - honestly I really trust DS's medical team here and don't want to go somewhere where I am scared of how 'safe' the hossys are (high % of AIDS sufferers + syringes.... nope, not happy about that idea!!) There are other issues too, but I bet you really understand the medical worries hey!?
Victoria xx



Whinge alert - sorry guys!!

Yesterday I had a chat to the teacher about DS's group participation - I had noticed on the times I had helped that he turns himself away from the group and doesn't join in. I thought maybe it was because I was there, but apparently he does it all the time. The teacher says he does it to isolate himself, and recommended that we take him to more group things so I think I will join a formal playgroup for the two children on a Tuesday. I had been invited to join one anyway, and two of DS's kindy friends go there so that will make it easier for him to ease in. She had done an assessment on him yesterday too, and was worried about his speech - so we had a chat about that, and she asked me to bring in some info about PRS which I will do, and I will write up what I have been doing with him for his speech development so she can work with me. What she did say was that his colours and numbers and things were very advanced, it was just his speech that was behind. To be honest I agree with her. There is an assessment that they do officially on speech where a 2 year old child has to be able to say x amount of words, and 2y 6m says x number of words, and he can fulfil those requirements which gets him off the list for speech difficulties that the state are interested in, but when you put him with his peers, his speech capabilities is markedly different. I know the reasons why, and I think he has done remarkably well in the time that we have been working on it, and also (what the kindy teacher has no real experience with) is that he is very advanced for a PRS child of his age, but he does find it a bit frustrating that he can't communicate with other children at the level that they expect, and I think that leads to him withdrawing from the group. Working on his speech, however is a very slow process and as he progresses, so do they, which means he is always behind! I have noticed he is far happier doing things at home than around the other children. Here he will practice new crafts with me, talk to me and DD, read DD stories and chatter non stop, but at kindy he goes off and plays away from where the other children are (perhaps) so he doesn't have to talk to them.

So then we got back and went straight out again to the Children's. DH came this time and held DS so the ENT was able to do a bit more than when I am holding him. DS was terrified as usual and screamed so loud he made his nose bleed. The ENT has given us hydrogen peroxide which will be SO much fun. Apparently it fizzes and bubbles and gets quite warm inside the ear which means DH will have to hold him down to apply it twice a day for 5 days. JOY! And we have to be super careful not to get it in the eye - ouch! Wish me luck!!

whinge over, carry on...!

Victoria xx
Hi girls,

Sorry for crashing your thread but I was reading it due to when I was preggers with Moo they said she had a cleft palate on the ultrasound and was so uninformed and uneducated about the topic and no matter how much reading I did I couldnt get my head around anything. We were actually told incorrectly and Moo did not have a cleft palate but I wish I had found a thread like this when pregnant to help me understand.

Good luck to you all and your beautiful children

Love Nikki
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