Don't even know if I should be posting here.

[misdee]

Friday before 9.10am was normal.

Then we saw the GP about an ongoing issue (baby's face drops on one side at times). First time we had seen the GP as the HV had said not to worry as both sides of the face moves when she smiles. But I was worried so I booked to the see the GP.
Ended up with an urgent appointment at paediatrics at the local hospital.
Baby has facial nerve palsy of unknown cause. They are booking an MRI and neurology. Because she can move her forehead and eyes, it's unlikely to be Bell's palsy. They are looking for an upper motor neurone lesion. (It's amazing how much they put in notes these days to hand to parents).

So yeah, I don't know what's happening with my baby girl. She is 9 months, developing slower than her 6 siblings, but getting there. Been trying to get a SALT appointment sorted as she chokes on food and drink most days, but seems that the local website that's says HV can refer is wrong and I need to go back to the GP.

Just got to keep going until we see neuro I guess. Maybe some answers soon.

Booked for a first aid course in March

2 scoops this morning and no coughing or choking. She isn't best pleased at having to wait for it to thicken though

Misdee just wanted to let you know, in case you haven't seen it - there's a thread in chat about memorable MN moments and you and Peter are mentioned quite a few times can't link as I'm on the app though sorry

Thank you, will have a look

Can I scream yet? She has cellulitis on her ankle. Now on erythromycin and fucidin

Oh god! How did she get that? Poor little thing. Go ahead and scream

There's a small cut on her ankle, and that seems to be the starting point. It hasn't spread since yesterday, (drew round it with a pen) and her temperature is down today, so she seems happier.

Next week is facial palsy awareness week. I keep debating sending facial palsy UK our story so far.

Sorry to hear you're still going through the wars.

Pleased that the important tests are done though- and well done for getting the thick fluids sorted- fingers crossed this will make a big difference.

Saw HV today for development health check.

Referrals being done for physio and eye clinic.

I have to sort hearing test with GP Just to check no issues there.

Referral to cdc will be done as well after neuro appointment.

All those appointments- gah- probably sensible & nevessary, but tiring, worrying, and a big practical hassle.

Wouldn't it be nice if they just gathered all the relevant people in a childrens centre or a paediatric outpatient unit for the day (or maybe two). They could batch up a set of dc needing evaluation along similar lines, and you could do hearing/eye/physio/OT/SLT/dietician/paediatrician/neurologist/blood tests/advice worker all in one go.

With a high-up admin person there to make sure fancier tests like MRI/EEG got booked in at a convenient time. Job done- everyone sorted.

Like a conveyer belt of specialist doctors

Is it always like this with special needs? Picking up one issue which then leads to other issues being pick up?

Or like Yo Sushi. "I'll help myself to the Dr on the blue plate and the therapist on the red one, we might try a yellow plate nurse for pudding"

One special need often gets you checked for others, cos there's a lot of 'buy one get one free' offers

This happened. She is so wobbly though and locks her legs so tight when she does it. But still so happy

Awwww! Those little feet - so scrumptious!

Those little feet are causing massive problems as nothing fits on her feet easily due to high instep. But they are scrumptious

This week has been rather screamy and chokey for dd6. Also lots of poop. We are exhausted as she screams a lot in the day. But she doesn't want to be held. Or put down. Or fed. Or drink. No obvious signs of illness or chest infection brewing. Just bumbling along.

She made the signs for milk and drink yesterday clever girl

No wonder she's screaming a lot.
She now has mobility AND language
She must be knackered!

Think I should put more emphasis on signing 'mum' now.

Sorry this dropped off the end of the page of threads I'm on! (Have name changed as precious name referenced my hair which is currently falling out and pissing me off).

She really is gorgeous. I found once they picked up a sign or two and realised they "worked" it came on really quickly after that, so no doubt "mum" will be there soon. And "more"'if my lot are anything to go by!

Keep making the poor girl jump. Her startle reflex is still strong. Drifting off to sleep mainly takes about an hour as she jolts herself awake all the time. Can't recall if that's normal. Which means naps in the day are very short.
When awake, just walking past her will make her jump. Am certainly not sneaking up on her.

Physio has been moved to this Friday. Any idea what they do? It's her first appointment.

Talk to you and play with examine her.

And decide if there's anything that they need to keep an eye on or offer treatment for. Which they might now be able to make up their minds on after one appointment so don't be surprised if you're asked to come again

Did you see the SLT about choking yet? If not, tell the physio, she probably shares an office with them...

Thank you. I assumed they would do a full examination of her. Yes she has been seen about the choking. She has dyaphagia. We now thicken liquids for her and have fortnightly appointments or telephone appointments if all is OK.