Jess - Vent away, this a reason for me starting this thread, I have been stuffed around alot by doctors so I know how you feel and it seems that nobody seems to realise it affects the children.
I just remembered I was meant to have follow up appointments for Matildas kidneys (she has a horseshoe kidney and kidney reflux) and the hospital hasn't arranged the appointments (that were due a couple of months ago) so now I have to drive down (a 4 hour round trip) with the girls for the ultrasound and specialist, it is such a long day for the girls.
I hope you get a all of the appointments booked and the MRI gives you some much needed answers .
Louise - Your little girl has been through alot, some of what your little girl has gone through mine have to so I can understand some of what you have been through. I asked what has caused my girls to have the conditions they have and we pretty much have the same reason 'Sh*t Luck' as it is odd that we have 2 children with completely different defects but no reason for them. Matilda has severe obstructive sleep apnea and they would like her to use C-PAP but she just gets hysterical when the air is turned on, her airway was maintained with a nasopharygeal (sp?) when she was younger but obviously that isn't an option anymore, one of her major problems is breathing difficulties and although we can maintain it well it is preventing her to move forward and so we are stuck with her feeding issues. I look forward to getting to know you and Ella.
Bridg - It is amazing what the specialists can do. I started taking Matilda to physio/ot at about 7 months as she could roll from back to belly but other than that she would just lay on her back, she hated tummy time, couldn't sit or roll from tummy to back, by 10 months she was sitting and then she just took off, it was slow but I could see that it was the physio that was really helping her to progress, her gross motor has been our main focus until now but now that she is walking it is time to shift the focus.
Sally - I am glad to hear the Brendan has improved his speech with the help of speech pathologists, this is our next step. Matilda has hearing loss and wears a conductive hearing aid, she is 22 months and doesn't say much, she says 'Mum', 'Dad', 'more' and 'car' however she does not say them on a regular basis. She does sign some words like 'poo', 'dummy' and 'food' as a way to communicate, however I can tell that she is starting to get frustrated that she cannot communicate as she would like to.
Hi all
thankyou all for your warm welcome and letting me vent. we had another hiccup yesterday with the accomodation, they rebooked our family room, and for some reason had only booked it for one night, then they over charged DH for 3 nights. so he is not happy. But little Jethro is king of the ward at the hospital, everyone knows who he is and he inpressed his doctor by walking, he was relieved that it wasnt as bad as he first thought. He agreed with DH that it is CP but he said that CP is just a label and doctors generally say that when they cant find a cause, so that is what he is looking for now, but my little man is king of the ward, he is a case study for all of the students and he loves all of the doctors and nurses (which is good for him usually he hates them) so besides the tiny accommodation rooms and everything being communal (yuk!) all is going well at this stage. tomorrow is the big day, MRI we should have the results straight away as his doctor will be sitting in on it so we will know very quickly whats going on, so everything is looking up at the moment.
thankyou all for your kind words and support, it really helps.
chat to you all when i know some more
have a great day
Jess
DD - haha isn't it just lovely having a diagnosis of 'sh*t luck', really clears things up!! I know what you mean about the cpap, they tried that in hossy with ella, and the plan was to go home on it.....she went absoulety nuts and was holding her breath, and got so distressed they have never tried it again! nasal prongs do the trick though.It is such a tricky area heart/lung/throat, i had no idea how much everyday activites could be affected, even if the issue seems unrelated. Having Ella has certainly opened my eyes to a lot of things, and made us appreciate everything a lot more.
DD and Sally - defs hear you with the frustration in regards to verbal communication (well lack of a lot of other things too ). We attended a 'Hanen' and 'Makaton; workshop, have you heard of or been to either of those? I found it did help, as Ella was non verbal and couldn't sign until about 2 and a half yrs or so. Even now she says mum, dad, oma, opa, and up. and wont sign anything except for food.
TieTanyan - we are waiting for an MRI, as I think Ella show soooo many signs of CP. She had 2 brain bleeds at 6 days old, grade 3 on one side and grade 2 on the other. She used to have seizures from this, but doesn't anymore and is not on any meds, although still has the 'epilepsy' title as you never really get 'rid' of it. She has right side weakness down her whole body, drools quite a lot for someone with all their teeth, and had/has a lot of feeding and swallowing issues. All of these things of course can be explained by things that have happened to her along the way, but I would just love an official 'diagnosis' I suppose. That really sucks about how much you have been stuffed around with accomodation, you really don't need anything stressing you out, on top of the hospital stay and waiting on results! I hope you get some answers from the MRI
hi all
well diagnosis is in, jethro has a lesion on the right side of his brain, not sure what caused it but he was born with it, thats all they could tell us, he is now walking (YIPPPPPEEEE) so that is one hurdle over with, yes it is CP which we already Knew just nice having something. hope everyone is well and enjoying their long weekend, off to work, chat soon
Jess
Welcome Jess and Louise.
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so we will know very quickly whats going on, so everything is looking up at the moment. 
). We attended a 'Hanen' and 'Makaton; workshop, have you heard of or been to either of those? I found it did help, as Ella was non verbal and couldn't sign until about 2 and a half yrs or so. Even now she says mum, dad, oma, opa, and up. and wont sign anything except for food.
That's good news 
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