Quick Cerys update

[ELLA22]

Hi all
Quick update: Cerys started playgroup last week. She was supposed to go on Wed and Thur but enjoyed it so much that she went on Fri too. Her teacher of the deaf has been in already so that has put everybodys mind at rest!
On the down side, she has been in a lot of pain especially at night. I had to lie with her one night for 2 hours while she was just crying and saying back hurting. We have had to resort to giving her a medicine which has paracetamol and something which helps her sleep at night. I don't like her having this but its better than her being in pain and getting no sleep. I'm wondering if shes having a growth spurt and everything is moving a bit. Our gp said her swallowing problem is related to her spine so am trying to get in touch with QMC to let them know about the swallowing and the pain.
We have an appt with the geneticist tommorrow as she discharged us before we knew about her spinal problems so will see what she says as Cerys has some fusion in the cervical area which is common with some genetic syndromes.
Better go and get the madam ready for playschool.
Will update when I know more.
Love Ella

[andrea]

Hi Ella

Thanks for the update and it's good to hear Cerys is settling in well at playchool. I'm really sorry to read that she's in pain. Do you think this is related to being more active at playschool, or is it just coincidence that it's got worse now? I know what you mean about not wanting to give them medicine though. Erin was on daily antibiotics for years because of kidney reflux, and i hated it when she got ill and had to be on other stuff too. Thankfully (sort of) she won't touch any medicine now, although that has its downsides too. Fingers crossed the pain doesn't last.

Good luck with the geneticist - let us know how it goes.

Take care
Andrea

[GillyG]

Glad to hear she's having fun at playschool, but how sad that the little mite is in such pain at night. I hope you can get her an appointment at QMC soon. Give her a hug from me for being so brave!

:squeeze: :kiss: :squeeze:

Gilly xx

[ELLA22]

Hi
Just to let you know that I spoke to a nurse at QMC and we have been squeezed into the clinic on Monday so we can see what is going on. Hopefully we can stop her pain a bit. Her geneticist wants blood taking while we are there though so should be fun- bless her she just gets on with it. Will give her that big hug Gilly thanks!
Love Ella

[titch]

Hope all goes well on Monday and you can get some more sense out of them! I'm next at QMC on 30th May, trying to figure out whether my husband can get leave to take me (it's such a pain not being able to drive - that said I'm not sure I'd be up to coping with that kind of trip on my own with littleun yet anyway) or if we need to get parents to come and do the honours.

Anyway, hope they can at least offer some information and suggestions regarding the pain. *gentle hugs* to Cerys.

[ELLA22]

Hi Titch
Congratulations :squeeze: How is your little bundle of joy? Give him a cuddle from me. He is gorgeous!!
The nurse I got through to (eventually) was great and just said she didn't want her in pain and squeezed us straight into the clinic. I don't drive either so know what you mean but our journey is only about 40 mins away so not too bad. My lovley dad is taking me on Monday and he hates hospitals so that should be fun. It will be good for him to see her x-rays though.
Just hoping to get her out of pain poor little love.
Anyway she's tryng to turn her brother into a frog with her magic wand and he's not happy! better go and referee.
Will update on Monday
Love Ella