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Community Paed appointment tomorrow.

(15 Posts)
Galena Mon 06-Jun-11 22:12:35

Orthotics at 9:15 to get DD's insoles then Paediatrics at 9:30. I don't know whether we will get a definite diagnosis of Cerebral Palsy for her, or whether they will be more of the 'watch and wait' mindset.

It's all really odd. She is 2.1yo and has very flexible hips and ankles so she is very unstable, although she has, in the last 2 weeks, started standing herself up and also started walking a few steps unaided (has been cruising since August last year). However, her legs cross a lot as she walks forward when holding my finger, and she can stand herself against something seemingly without realising that one of her feet is pointing nearly backwards!

The physio thinks she has mild CP (diplegia) and is very experienced, so in a way I assume the appointment tomorrow will be simply confirmation, although another physio still thinks most of the problems stem from her mobile hips.

I have no idea of what will happen tomorrow or where we go from here. Sorry this is muddled. Just trying to get my head round things.

Just send lots of positive thoughts our way tomorrow please!!

TheNinjaGooseIsOnAMission Mon 06-Jun-11 22:22:24

positive vibes coming your way smile

yay for walking, that's fab! Just don't be afraid to ask what the benefits will be for your dd to 'watch and wait' again as you'll be having to look into support for nursery so you'd like to get a move on so as to have everything in place for when she starts, these things take time.

EllenJaneisnotmyname Mon 06-Jun-11 22:28:17

Good luck for tomorrow. smile

direlahere Mon 06-Jun-11 22:28:33

Galena good luck for your appointment tommorrow, my little boy has cp but has made huge progress with his mobility since he was two, far more than we could have hoped.

Of all the professionals we have met our community paediatrician has been one of the mose honest and straightforward we have met, he says it how it is and that suits me well, I hope your experience will be as positive, sending you bags full of positive vibes.

direlahere Mon 06-Jun-11 22:29:17

that should say most honest not mose honest!

Galena Mon 06-Jun-11 22:47:27

Thanks for the good wishes. Part of me wants a diagnosis so we can move on and know what we're dealing with. Another part of me wants to be told it definitely isn't. What I really don't want is to be left in limbo.

Well, whatever is said, we'll cope. I'll let you all know.

direlahere Mon 06-Jun-11 22:55:09


I can't rate the progress our child made following riding lessons, I really feel these helped with his balance, thinking about both sides of his body and his posture. He has been riding since age 2 with riding for the disabled, just thought I wouold mention this incase you wanted to talk to your paed or physio about whether it could help your child. We only found out he loved riding by chance on holiday - we aren't a horsey family but he loves it.

direlahere Mon 06-Jun-11 22:56:23

Blooming hell what am I like today, that should say I can't rate highly enough the progress our child has made!

Galena Mon 06-Jun-11 22:58:36

That's really helpful, thanks!

starfishmummy Tue 07-Jun-11 08:15:49

Good luck today Galena

TheNinjaGooseIsOnAMission Tue 07-Jun-11 15:58:54

how'd it go galena?

Galena Tue 07-Jun-11 16:45:34

Thanks for asking. Yes, they have diagnosed her with CP - definitely both legs affected, and possibly one arm. They haven't said it's mild, but I think it is...

Was a fantastic appointment though - nearly an hour and at no point did I feel they were rushing me or clockwatching. Very reassuring, and lots of things going to be put in place in the next few weeks. Physio was there too so I felt very much like it was a team affair, IYSWIM. She was delighted with DD's progress in the last couple of weeks.

I feel partly relieved that we have the diagnosis and things can move forward from here, and partly very sad that it's 'for life', but I know we'll get through it and that she (and we) will get all the support needed.

EllenJaneisnotmyname Tue 07-Jun-11 17:01:50

((((((hugs)))))) Galena. No matter how much you feel you're prepared for a DX it still comes as a shock and it takes time to get your head around it. Allow yourself time to be upset. Remember that the DX hasn't changed her, she's still your lovely little girl, and she sounds like she's a really determined little one. smile As you say, this has given you the power to move forward and make decisions based on knowledge.

Maybe wine and chocolate tonight, though?

direlahere Tue 07-Jun-11 18:36:52

Galena, I would echo what EllenJane says, my little boy has three limbs which need treatment too although one limb is damaged due to muscle tissue loss unrelated to cp.

He is doing so well now, he's a happy adorable little fellow and your daughter sounds delightful too.

take care, it sounds like you have supportive people around you

TheNinjaGooseIsOnAMission Tue 07-Jun-11 18:54:31

pleased the appointment went well galena smile As ellen said, she's still your gorgeous little dd, nothings going to change that and it's also perfectly fine to be sad too, however much you saw the dx coming.

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