My daughter Mia had her cleft repair on the 14th December 2009. It has been a complete success and we were extremely lucky to have such a brilliant surgeon at PHM hospital. Our only hurdle is to get Mia to suck normally again as the spoon feeder has taken that ability away. 2 steps forward......one step back! One this PRS has given me alot more of is patience and persistence!
Hi Mel Glad Mia is doing well. Ethan is doing really well too (for those who dont know, Ethan had his cleft repaired at PMH on 15 December 2009). He was not babbling at all before and is now saying ma ma mum, so really happy with that. He is still stubborn and doesnt like taking any food from a spoon (whether puree or even thicker foods)and likes to feed himself, so is having sandwiches without crust, potato rice sticks etc, but as long as he is eating, i am not too worried about that side of things. He seems to have developed so much since his surgery, its amazing (although the 3 weeks post surgery when he had the splints on were very testing as he was very clingy and wanted to be held all the time and would be grumpy. Most nights we would have to hold him and pat him to sleep (sometimes while he was screaming the house down) and then transfer him into his cot. Much much happier now though. I think it was the frustration of the splints because he would stop crying when you picked him up and was was happy when the splints were off. Now got the issue of trying to get him to suck from a sippy cup or bottle. We are still having to use the haeberman and giving water from a tommie tippee bottle where you can press down with your gums and some liquid comes out. A whole new learing process again, but so glad the surgery is behind us and he is doing well. Hope you had a great Christmas and all the best wishes to you and the family xx
Great to hear Mia's surgery went well and that you have that all behind you now. I don't know about you but it was a terribly stressful time for us.
In relation to getting your Mia to suck her bottle we have now successfully gotten our Mia doing it by having her suck initially and then help by squeezing the bottle towards the end of her feed and then gradually allow her more time to suck and less squeezing until eventually she is sucking it all herself. This has been a success with our Mia and she now sucks down a whole bottle in under 10 mins.
Anyway, good luck with it all, it really is one step forward and two steps back but in time I believe our special little bubs will get there in the end.
Great to hear from you. Wow Ethan has come a long way. Don't worry about the feeding. Mia doesn't eat much puree food either. she is on the finger stuff too. Just didn't like the feel in her mouth after the op. I gave up with trying to feed her through a bottle. The sucking action was just not there. She is more that happy to be a big girl and drink from a cup (without spout!!). Bit messy at times but it works! I just still use the spoon feeder for the milk. When she is a little bit more of a pro with the cup I will just use that for her milk too. I think I have come to grips with you do what works best for you! Mia started daycare this week (1day)and how excited was she to be with other babies. I can't believe how much she loves it. She also says the mum ma word now. Rose from speech bumped into us the other day when we had the ENT followup. Looks like we will be starting that journey soon too! Mia just got her 1st tooth over xmas too. You can really notice how far her jaw sits back now. Makes me wonder how she will be able to eat properly. I'm so happy that Ethan is starting to come along.....keep in touch.
Hi Mel Great to hear that Mia is doing well without the bottle. Ethan still uses the haeberman but because the teat has been washed and used so much, the split is so big so i am not sure if he is sucking as much as what he is chomping down. It is working at he moment though which is more then he could do before surgery. One of our neighbours had feeding difficulties with their son and has given me a bottle/sippy cup made by "Mag Mag" it has a longer teat so is more like the haeberman. I have tried Ethan on it a few times but its usually when he is hungry and doesnt have the patience to try something new. I will need to try him in between feeds. Daycare is great (i know some people dont agree) Ethan goes 2 days a week - 1 day when I am at work, and the other day i run around and do shopping/go to appts etc without dragging the boys with me. I cant believe Ethan will be 1yo in 2 days time!!! For the first 6 months when we had the feeding tube and 3 x week visits to PMH you wish their first year away, and now the last few months seem to have flown by!! We have our first speech appt at PMH early March. I will see how we go and have fingers crossed but am mindful that they have so many people to treat and that things up there can take so long (not to mention its a pain in the butt to get there!) so may double up and try a private speech therapise too and see if there is any benefit. How is your studying going? If you get a bit of a break perhaps we could organise to catch up for morning tea and play? take care, Ann :)
Hi Mel, Ethan is doing really well thanks. How is Mia going? We are seeing a private speech therapist now (i think it might be the same one Sam is seeing - Sam, do you see Stacy? I recognise your name and didnt think there would be too many of us PRS's out there). Developmentally he is doing really well but still isnt saying or babbling much. He says "mamma" and babbles a bit but not that much. I saw the speech therapist again on Tuesday and we are starting to use some Makaton sign language to try to bridge the gap until he does talk as he is getting frustrated cause he knows what he wants but cant say it. We had a follow up physio appt at Southwell cause we hadnt seen the physio at PMH since before his surgery and we are just doing some exercises to stop him sitting in a "W" position and tone his lower body and core (sounds like a body pump class i know!). How is Mia going? I found Ethan has come ahead in leaps and bounds since his surgery. He still isnt keen on much food so snacks a lot but I think his reflux had a lot to do with that. How is uni going? How much longer have you got left? If you are keen, maybe we could catch up on your next break and see if Sam wanted to catch up too? Hope you are all well. Take care, Ann :) xx
Hi Ann, glad to hear Ethan is doing well, perhaps we should go to a Physio as Mia also sits in the 'W' shape and has prominent in-toeing (pigeon toes). Where did you go to get a referral for physio, we have seen the orthopeadic surgeon at PMH who didn't think her in-toeing and the way she sits is a problem but I think it may be? Yes I do see Stacey every second Tuesday for speech therapy with Mia, she too is learning Makaton which has been a great help in communication. Mia is starting to say a few new words but they aren't perfect so it is a bit of a worry. We have also seen Narelle Pearce at PMH Speech Therapy to discuss whether we think her palate is working properly...she now has to see Narelle more often to assess such. Anyway if you and Mel are keen for a catch up please let me know and I would love to come along. Hope all continues to be well for you and your little man, take care. Sam
Hi Sam, sorry for the late reply, I have only just seen your post. I am keen for a catch up if you and Mel are free, my email address is ann.elansary@gmail.com if you want to contact me. We got referred to the physio through the early development team at PMH when they were worried that his motor skills (transfering from hand to hand etc) were behind. We saw the physio at PMH for a while and then i asked if we could be referred to southwell cause it was so hard dropping my eldest off somewhere and then going to take Ethan up there, then heading back to pick up my eldest son again. We got accepted for physio at Southwell but it took about 6 months before we actually got an appointment. I took Ethan to see the podiatrist I see for his feet, as one side seems to be turning inwards. He looked at Ethans movement from his hips, knees etc and seems to think it is just a tight tendon on the inside of his foot which is pulling the foot inwards, so we massage the inside of his foot which should loosen the tendon - fingers crossed! Ethan isnt saying much but is making more noises then he was before which is good. the Makaton is starting to help with food/drink which is great. Always hoping for more noises/words though. Anyways, hope you are well and let me know when you are free to catch up :) Ann
