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GuestGuest
| Subject: Happy News XD Thu Nov 04, 2010 7:43 am | |
| sooooo.... after yet another appointment with ben,this one being his consultant and geneticist, the bottom line is
they will not be running his bloods to find the gene for noonans as they are sure-ish that it mibi just how he looked when he was born. some of the feature related markers that concerned them, he has "grew into" so unless something shows its self as he gets older, aspergers/autism/adhd then they will leave it till then.
They are having a get together to decide the best course of action to deal with his wee head. one consultant wants to leave it till he is 24 months (not happy about that!) Another wants to fix asap as there has been a family history of it ( craniosynostosis ) Another agrees but disagrees with using MRI and wants to do an XRay.,,
so they will let me know soon as what desicion they come to.
the physio is still working with us, well me, on his motor skills but the consultant today thinks most of it is due to low muscle tone (noonans marker) OR being 4 weeks early. he is still really floppy and he has no hip controll, he also only holds his head to the right and fights to get it back when placed on his left. he goes nuts! he has slower eye controll, prefers to look up than actually look at u, he has trouble tracking things... tbh he actually doew well, when it suits him haha so he is also being sent for an eye test, which i thought they had already decided on!!
all in. im happy with todays appointment. he will still have development reviews every 4-6 weeks
I feel soo much lighter today x! |
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*Meg*
Age : 46 Join date : 2010-08-19 Location : South Wales Posts : 5152
About Me! My Name: Leah Status: Mummy Number of Children: 1
| Subject: Re: Happy News XD Thu Nov 04, 2010 7:45 am | |
| awww fantastic !!!! bet thats a huge weight of your shoulders xx |
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pinkyd
Join date : 2010-08-16 Location : durham Posts : 3931
| Subject: Re: Happy News XD Thu Nov 04, 2010 7:45 am | |
| so glad things are going in the right direction x |
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Suse
Age : 42 Join date : 2010-08-19 Location : England Posts : 3128
About Me! My Name: Suse Status: Mummy Number of Children: 2
| Subject: Re: Happy News XD Thu Nov 04, 2010 7:51 am | |
| YAY!!! Thats brilliant news hun xxx |
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Mario
Join date : 2010-08-16 Posts : 6252
| Subject: Re: Happy News XD Thu Nov 04, 2010 7:51 am | |
| Sounds good but does that mean they dont think he has noonans? And is the other stuff cos of the craniosyntosis then? That would be fab if they can do the op sooner rather n later and help the wee chap pick up his development and stop all this worry his poor momma has had to go through Im glad you are feeling more happy about everything |
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kenty
Age : 39 Join date : 2010-08-24 Location : Leeds Posts : 2260
| Subject: Re: Happy News XD Thu Nov 04, 2010 7:52 am | |
| so glad it's good news hun!!! |
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GraceBean&Pip
Join date : 2010-08-20 Location : Posts : 1566
| Subject: Re: Happy News XD Thu Nov 04, 2010 7:53 am | |
| So glad you feel lighter Good to hear and sounds positive xx |
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olliesmammy
Age : 34 Join date : 2010-09-13 Location : Wales Posts : 4970
| Subject: Re: Happy News XD Thu Nov 04, 2010 7:53 am | |
| So does tis man he doesn't have noonans? x |
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GuestGuest
| Subject: Re: Happy News XD Thu Nov 04, 2010 7:57 am | |
| Laura, I'm very pleased for you x |
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DonnaAdmin
Age : 46 Join date : 2010-08-17 Location : Wakefield Posts : 3100
About Me! My Name: Donna Status: Mummy Number of Children: 0
| Subject: Re: Happy News XD Thu Nov 04, 2010 7:59 am | |
| Ahhhh Laura thats much better news xxx |
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GuestGuest
| Subject: Re: Happy News XD Thu Nov 04, 2010 8:00 am | |
| mario. it could be either or at this stage i asked the same question today and got a mixed answer. its basically a wait and see game. If he deffo has noonans then he is very very lucky and his is a very mild form. From all the noonie mums iv spoke to, no one has a mild noonie the low muscle tone isnt an issue yet. his weight gain is. noonies are known for being shirties and have failure to thrive problems. ben has started to drop the centiles and isnt gaining weight as he should, BUT he is the right weight for his size. TBH i dunno wtf they are moaning about, i think he is a chunker.... he is 20 weeks old, 14lb 4oz, 62cm long and from googling, thats pretty spot on for his age, concidering he was early by 4 weeks???!!! |
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Mario
Join date : 2010-08-16 Posts : 6252
| Subject: Re: Happy News XD Thu Nov 04, 2010 8:05 am | |
| That seems pretty good to me hon. C was 13-10 at 21 weeks by her red book so fairly well within normal limits. I hope the wait and see works out to wait for good news xxx |
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olliesmammy
Age : 34 Join date : 2010-09-13 Location : Wales Posts : 4970
| Subject: Re: Happy News XD Thu Nov 04, 2010 8:08 am | |
| Sounds positive, I'm very happy for you hun x |
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tigger
Age : 46 Join date : 2010-08-16 Location : UK Posts : 1122
| Subject: Re: Happy News XD Thu Nov 04, 2010 8:22 am | |
| Aww Laura so pleased it was good news hun, have been thinking about you the last few days how you feeling? |
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GuestGuest
| Subject: Re: Happy News XD Thu Nov 04, 2010 8:40 am | |
| fully loaded with the cold but gettin there x! |
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xemplus2x
Age : 39 Join date : 2010-08-31 Location : wales Posts : 1731
About Me! My Name: Emma Status: Mummy Number of Children: 2
| Subject: Re: Happy News XD Thu Nov 04, 2010 9:28 am | |
| Glad it's good news Hun!! X x |
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jenshayne
Age : 54 Join date : 2010-08-17 Location : Canuckville Posts : 3290
| Subject: Re: Happy News XD Thu Nov 04, 2010 9:50 am | |
| Thats great news hun..not the cold part but his diagnosis/prognosis sounds more promising. So happy for you! xxx |
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Vicki
Age : 39 Join date : 2010-08-19 Location : Stroud, Gloucestershire Posts : 1473
About Me! My Name: Vicki Status: Mummy Number of Children: 1
| Subject: Re: Happy News XD Thu Nov 04, 2010 7:28 pm | |
| awww laura im so happy to hear you have so clarification and a course of action!! really hope it all goes well, lots of hugs to scrummy ben xxxx |
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GuestGuest
| Subject: Re: Happy News XD Thu Nov 04, 2010 9:05 pm | |
| thanks every one. especially for puttin up with my FB moans lol!! still a wee road to travel yet but the end does look brighter. im not in so much of a dark place with this any more |
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Amy
Age : 37 Join date : 2010-09-05 Location : Sunderland Posts : 2579
About Me! My Name: Amy Status: Mummy Number of Children: 1
| Subject: Re: Happy News XD Thu Nov 04, 2010 10:45 pm | |
| laura im so happy for u. x |
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CarlaAndCallum
Age : 37 Join date : 2010-08-17 Location : Essex Posts : 4673
About Me! My Name: Carla Status: Mummy Number of Children: 1
| Subject: Re: Happy News XD Thu Nov 04, 2010 11:17 pm | |
| aww laura just seen this x So glad it goos news news xx |
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~ Katie ~
Age : 36 Join date : 2010-08-17 Location : Manchester Posts : 1124
About Me! My Name: Katie Status: Mummy Number of Children: 3
| Subject: Re: Happy News XD Fri Nov 05, 2010 12:34 am | |
| so pleased that you feel a little more relieved xx |
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snoopy21
Join date : 2010-08-20 Posts : 5101
About Me! My Name: Status: Mummy Number of Children: 1
| Subject: Re: Happy News XD Fri Nov 05, 2010 9:44 am | |
| Just saw this laura, thats fantastic news! Glad things are looking up for you hun. I love your FB updates- they are either hilarious (action men getting it on was a personal fave ) or very real/honest and reminds us all that we are human and everyone has ups and downs. Its nice to see people on FB that dont portray a 100% happy life for the sake of others. So happy about lil Ben. x |
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