hi all
i love reading your posts, it makes me feel im not the only one!! Dont get me wrong, i do feel for all of you im not coping with half of what you lovely mums and dads do on a day to day basis. Anyway the reason for my post this morning (besides putting off doing the house work and waiting for my husband to get up) i managed to get hold of canberra hospital on wednesday to find out where we had to go etc, of course no one knew anything (wonderful i thought), so i managed to leave a message with Jethros doctor, he rang back on friday, ( i was shopping with the kids) my husband answered the phone, the doctor knew nothing, i was originally told that his MRI and X-ray could not be pre-booked, which i thought was odd, so we have all of these things we have to try to managed to do in 4 days and no-one knows anything about it. ahhh sorry i just had to vent, i dont like doctors at the best of times but this just tops it, but when it comes to your children you dont want them to stuff you around.
thanks for listening, sorry if i have ruined your weekend, just need to get that out!!
chat soon
Jess
Jess- Hello. Go ahead and vent if you need to. I totally understand how frustrating it is when you get stuffed around by doctors, especially when it comes to kids.
Sally- Glad to hear the therapy is making some improvement. Logan lacks in his fine motor skills, but gross he is fine.
DD- Enjoy the packing. That's one of the things I hate about moving. It's good that you can finally move to the country and that DD's appointments are getting further in between.
Louise- Hello and welcome. Sounds like you too, have a little fighter! It's awesome to see all these strong kids.
Jess, That sucks! I'm sorry you've been stuffed around xx
DD, enjoy the move! I hope it all goes well xx
Louise, hello and welcome
Bridg, from what I understand fine motor skills go with the speech/language thing so if they are delayed in one chances are they are delayed in the other too. Well that's what I've been told. lol
Having a rough few days here, had a death in the family and trying to sort some things out.
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
I'm glad we are all able to share our journey's together xx
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Welcome Jess and Louise.
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