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Thread: Cleft Lip and/or Palette

  1. #145

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    Too Funny Toni - Yay Liam. Alex has learnt to blow his nose .... sounds daft but I was VErY excited LOL. He also has learnt to climb ( a few weeks ago) but is quite happy not to walk on a regular basis ... just when he feels like showing off to get that applaud .... then (instead of clapping) he does a little dance
    As for the travel and then the wait for the 5 min appointment ...... have to admit we haven't waited too much (although we have cleft clinic when we go away next and last time that was a 2 hour wait ... thankgoodness we don't have to do it too often) but we do a 1 hour drive to the airport and then a 2.5 hour flight ..... and of course we ALWAYS get to land just as peak hour traffic into the city starts .....looking forward to it again next week ... NOT. Seriously though - have wondered myself why there are not more people capable of doing at least check ups etc seeing as so many kids are born with some type of cleft??!!


  2. #146

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    it's so nice to hear that everyone was doing well, specially your babies...

  3. #147

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    Hi girls!!

    Glad to hear everyone is well and great to hear Liam is doing fantastically!! They are so resiliant aren't they???
    I contacted Cleft Pals and became a support parent so if anyone needs someone to talk to I am there to lend an ear or some advice!! Especially in my area there isn't very much considering it is such a big town and I have now come across quite a few cleft kids in the past 12 months!!

    Can't believe it has been 5 months since Taj's operation already!!!! He is becoming a real little boy now...my baby has gone!!!!

    I can't get Taj to drink from any other teat other than his haberman teat which is frustrating cos they are so damn expensive!!! I thought after his lip repair he would just use another teat!! Just wondering if anyone else has had the same problem? I guess it's what he is used to!!

  4. #148

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    Leesha - we're still giving Liam his habermann's. Only because we have 8 of them and be buggered if I'm buying new bottles! I don't quite know how to teach him to 'suck' though.. I'm sure he's not really using the 'sippy cups' properly. He just gets the drips...

    Oh - and welcome Gabrielslife!!! Have you posted before? I'm a bit forgetful sometimes, so please forgive me if I've forgotten! If you haven't - please tell us your story!
    Last edited by Nettie; May 10th, 2009 at 12:43 AM. Reason: meant to welcome Gabrielslife

  5. #149

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    HI Guys

    Not sure if this helps you but after Alex had his palate op we used the cleftpals squeeze bottle and NUK top. I am not certain but I think the bottle is a qld thing??!!?? so if your branch of cleftpals don't sell them qld definately do. (NUK spout is like a sippy cup spout but there are two sorts - a slow flow with holes and a quicker flow with a slit). I found that after only a few feeds where I squeezed, he just naturally began to suck. The set is about half the price of the Haberman (which we used up until the palate op) - only prob is they melt easily so just sterilize in boiled water. I found them really useful. Alex now uses run of the mill sippy cups (Nuby type is his favourite - also good for learning to suck I found) for water but prefers the quick flow NUK for milk still - guess it is just a comfort thing. Hope this is of some help.

    Glad to hear all bubs are doing well. We are off to Brissy tomorrow ... first speech therapy assesment, hearing test and ENT check to see how the grommits are going.

    Cheers

    Del

  6. #150
    BabySummer Guest

    Smile Pierre Robin Sequence

    Hi Ladies,


    My name is Nicole and I just found this site and love this blog. I have a 11 week old baby girl who was born on 19th March 2009 with Pierre Robin Sequence (cleft palate and small jaw). We spent almost 2 months at RCH but are now home and happy. Her only issue now is feeding. She has a NG tube and has been struggling with the Haberman. She has about 50ml once a day if lucky(total feed is 150mlx5). Yesterday we had a check-up at RCH and speech dept gave me the chu chu cross cut to try. She likes the teat better but is not getting a lot of milk out of it. I was thinking of getting a squeeze bottle or the trying the pigeon teat. There is also a chu chu easy feed teat which I may try.

    I really want the NG tube out and would love any advise or to speak with other mums of PRS

    Regards,
    Nicole

  7. #151

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    Hi Nicole,

    My daughter has just turned one and has Pierre Robin Sequence, she also has a chromosome deletion, she was in the RCH for 3 months and had jaw destraction surgary performed at 9 weeks. She is still, unfortunatly, being fed via NGT, it is very frustrating. We went through a stage at about 4 months were she was feeding really well on the habermann and she went 2 and a half days on oral feeds only, she then became sick and went backwards, now I am lucky to get 20mls a day into her. She is starting to eat solids though and we are working with speech and dieticans at the childrens to try and get rid of this tube. Matilda is currently on 3 milk feeds a day and our next plan is to cut out her lunch time milk and hope that she will get hungry and eat (I know it sounds mean, and I hate the thought), once she is eating solids properly they seem to think the drinking will follow, as with us it has not stepped to the next level.

    My dinner is ready so I have to go for now but if you would like to talk more feel free to email me: [email protected] hotmail dot com
    I am happy to talk on the phone also but I do not want to put my number in here so email me if you like .

    I am in the RCH fortnightly for physio and speech, we have proberly crosses paths!

    Best of luck.
    Deanne.
    Last edited by DaintreeDream; June 4th, 2009 at 06:47 PM.

  8. #152
    BabySummer Guest

    Default PRS

    Thanks Deanne,

    I would love to talk more and have emailed you. If you don't get it let me know because it said invalid address. Sent it to [email protected] hotmail.com

    I did forget to say in my email to not feel bad about letting Matilda go hungry. I often wanted to let Summer demand feed in hospital but they said no. To me it seemed she was never hungry enough to feed via a bottle. You need to do what you need to do and if she was really hungry she would let you know.

    Regards,
    Nicole

  9. #153

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    Hi Nicole and Welcome!!

    My son Liam was born 17 April 2009 with a cleft of the hard & soft palate due to PRS. His lip and gum are unaffected and it appears his teeth are unaffected (he's now got 6).

    Liam fed via tube for the first 3 days, while we were teaching him to use the habermann. Once he was using the habermann completely (I made sure I did every feed in hospital so that I didn't use the tube but persisted with the bottle) - we removed the tube which was on about day 3. We were allowed to leave the hospital on day 5 after his weight increased.

    So we haven't had too many issues and he has had his repair surgery which went very well - so now he's pretty much a normal kid.

    I hope we can all be of some assistance to you - and as you can tell, we've all got a different story to tell! Did you know about the cleft before Summer was born? I didn't with Liam and it came as quite a shock. Luckily we have a good friend who has a cleft (lip, gum and palate) who was pretty much a pioneer baby with reconstructive surgery in the 70's... Because of this we weren't completely unfamiliar with the condition and he is a very special 'Uncle' to Liam!

    Regarding your current problem of feeding - the squeeze bottle sounds like a good option. Liam learnt to use the habermann through us squeezing it - until he learnt how to do it himself...

    All the best of luck and feel free to come in here and rant or unload if you're feeling overwhelmed - 'cause, you know what? We all went there... and will probably know how you feel.

  10. #154

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    Hi Nicole and a big warm welcome!!

    I don't have any experience or advice about PRS but I am always here for support or an ear that listens quite well!!!!

    Taj was born with a bilateral cleft lip and gum but no palate! He has had his surgery and is looking fantastic!!

    We use the Haberman bottle which we started to squeeze but he just started sucking all by himself. He is still using the haberman teet to this day and he now chews holes in them...not happy jan..lol!!

    Anyhoo feel free to chew our ears off and I'm sure the girls will have loads of advice for you!!!

    Can you all believe Taj is One next thursday???? My baby is all grown up.....You have all been a fantastic support throughout this journey!! Kisses to all!!!

  11. #155

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    Hey nettie I think you mean liam was born in 2008!!!

    LMAO at six teeth and he is 2 months old.......hehehehehehehehehehehehe

  12. #156

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    whoops! Thanks Leesha!

    Yes, he's 13.5 months old now - so that would be 2008!

  13. #157
    BabySummer Guest

    Unhappy Bad Day

    Hi ladies,

    It was nice to read your messages today. I am having a bad day. Don't have them very often, maybe once every couple of weeks. Summer had a couple of large vomits last night at the end of her feed and her tube came out. Stupid me tried to run her feed a fraction quicker to see how she went. I got my answer.
    Anyway I just left it out for the night because she is a good sleeper. In the morning I thought I would try and bottle feed her a little before I put the tube back in. She didn't want to suck much. Then this morning it took a few goes to get the tube back in. She was soooo upset. Then I get upset. Its back in and she is fast asleep but today I am just sick of her PRS. I think it would be so nice just for one day to have a positive bottle feed experience and see her with no tube

    Today I am in tears but tomorrow I will be ok.

    Nette I can't believe Liam only had a tube for 3 days. Sometimes I wonder if we gave Summer more of a chance to bottle feed she wouldn't be so dependent on the tube. Anyway congratulations. Did he have a small chin which comes with PRS? Our problem was more her breathing than the cleft.

    I had no issues with my pregnancy and didn't have any idea. They told me at birth Summer had PRS. I had never heard of PRS or clefts.

  14. #158

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    Wow it seems like our little cleft babies are all growing up so fast. Matilda turned one last Thursday.

    Nicole, I am sorry you have been having a bad day, it is very frustrating and sad when they vomit and in turn throw up their tube. I too had to put a new tube in last night, Matilda has got to the age where she tugs at it and the tape somes lose or sometimes she hurts her poor little face, she looked so lovely without the tube, I didn't want to put it back in either.
    Matilda is pretty good with getting the tube down these days though, no tears anymore, however she has learnt to block my path with her tounge and the tube ends up poking out of her mouth, so I have to distract her with a dummy.
    Things do get easier, even if she is still on the tube, as much as I would love the tube gone, it is easier now that she is a little older and we have got used to the whole thing.
    Big , as you said there are good days and bad, I hope tomorrow is a good one for you.

  15. #159

    Smile

    Hi Nicole (welcome) and HI to all you other lovely ladies

    It has been a while since I was on here so just htought I woudl see what you have all been up to. We have just been back to Brissy for Alex's second set of gromits. We have another hearing test scheduled in a few weeks which will hopefully now give a much better result than the last (with the old gromits). How are all your brave boys and girls going??

    Nicole, I do not have any experience with PRS - Alex was born with a complete unilateral cleft lip and palate (he actually had next to no soft palate). We also had breathing issues at first but they thankfully sorted themselves out quickly. We did use the squeeze bottles for a while. Alex was a habermann baby until after his first op and then we had to use a hard spout. As he had no palate (and now no plate) he couldn't suck so we had to combine this with the squeeze bottle. It took probably a good week to get him used to just swallowing the amount squeezed in. It took practice for both of us (and was quite messy and very frustrating at times - I think I woudl waste twice as much as he took at first) but we got there in the end. I guess all I can say is stick with it chick - you're doing a great job and it is totally normal to feel the way you are feeling sometimes- I think it would be fair to say we have probably all had our moments. Hope it helps a bit to have these sorts of forums available to chat.

  16. #160

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    Hi Girls!!!!

    Been awhile since I've had a look see in here and it's been pretty quiet!!!
    I have a question I hope someone can answer for me!!
    I can't seem to get a consistant answer out of anyone.....

    What are your chances of having another cleft lip and or palate child?

    There is no family history of it on either side and all taj's chromosome count was normal (had an amnio) We didn't have genetic counselling as we didn't think we needed to and they even said if there is no family history then they can't really give us a correct answer and there isn't a test you can do to test for it!!

    I hear it's around 4% is this correct???

    Can anyone give me some of there own advice or info??

    Hope you are all well!! Because it's so quiet i'm guessing you are!!

    Cheers!!!
    xoxoxoxo

  17. #161

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    sorry Leesha - I don't know.

    We've been offered a genetic test to determine this, but we're thinking we won't bother. I mean, it's not going to influence our choice of having further children, so why bother? We'll accept whatever comes...

    I hope someone else can help you!

  18. #162

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    Hi Leesha

    We didn't do genetic testing and as far as we know there is no history on either side for us. Not sure how accurate this is but we were told by specialiasts at cleft clinic in Brissy that it is 1 in 8 the first time and then it doubles every time after that so next time around is 1 in 4. Having said that we have met lots of people who have only one clefty in the family - stats are only a guide.

    Hope that helps a bit

    Cheers

    Del

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