Thursday, 19 March 2009

The rest of the day

I left us not late for our next appointment.

Little Fish had her appointment -
me - "Did Kate come to see you at preschool today?"
LF - "No".
me - "So what did you do at preschool today?"
LF - "Kate came to see me".
me - "Oh".

But our God is good. Little Fish's kidneys and bladder are working well; she may still need one op but she won't need the big op. And as we were waiting for the ultrasound (fume hiss) we saw the specialist Speech and Language Therapist (SLT) who reminded us she was coming with LF's own SLT to assess her feeding later today. An appointment which had disappeared from my diary.

We did get back in time for our next appointment, and I have a slightly different route to try myself next time.

Once Little Fish had met up with her 1:1. I got home, and had time for lunch before Mog's bed man came back to perfect her bed. And he managed, and her bed now goes up and down at both ends as well as tilting and profiling. I can't speak highly enough of this bed - with one bowels-related exception last night; Mog has slept every single night since we had it with no sedation. This is huge - she's been sleeping in an armchair or dozing in her wheelchair or bed-surfing (starting the night in one and ending in another) for weeks. And now we put her into bed, we put her music on, she falls asleep and does not wake when the music ends. And in the morning, she wakes up, has her morning seizure, and then waits to start the day. Fabulous.

And since the bed man was here, I thought probably lying on the settee with my feet on the windowsill was possibly not the most impressive use of my time, so I cleared another surface in the kitchen. At the moment we're averaging one surface per 2 hour slot, and one binbag per surface cleared. I'm not sure whether to be impressed or appalled, but it's satisfying either way!

And he went, and I collected Little Fish from preschool, and she played outside until Mog's bus came. And then our own bus was returned from the garage together with a large bill for necessary MOT work. But even here, this was good - I'd rather know about splitting brake cables and steering cables before they become snapped brake and steering cables.

And then the SLTs arrived, and Little Fish showed them how she can waggle her tongue from side to side. And up and down. And in and out of her mouth. And she showed them how she can control her own dribble now and not let it drip onto her tshirt, and how she can say "yes please" with two SSS sounds (although no L yes but never mind!). And so we fed her a cheese sandwich and a chocolate biscuit, and they watched her eat. And she PASSED! No head tipping to use gravity to move the food to the back of her throat. No choking. No food pouching in her cheeks or falling out of her mouth. Just some really nice chewing and mashing and swallowing.

It's not perfect yet. She's still got a lot of catching up to do, we still need to work with her chewers and her oral skills, and she's not ready to chomp her way through a plate of steak this week. But she passed the cheese sandwich test! And can have brown bread grated cheese sandwiches to take to preschool instead of a flask of babyslime. She can have bread and paté, she can have peanut butter sandwiches, and she can even start trying a spot of toast (which means I'm going to have to buy a toaster; my waistband will not thank her for this). We're off to Switzerland in a fortnight - this means Little Fish will be able to share most of the meals we find rather than needing to live off cupasoups and instant mash for two weeks. Fantastic! She drank well for them too, but I'm not sure what the decision on that was, so we'll stick with the tube for most of her fluids for now.

And whilst they were here, Mog did her "I'm drowning I'm drowning HELP" choke. And LF's SLT moved to avoid the line of fire (wise woman!), and the specialist SLT asked after her swallow, so we told her how she'd lost it in her illness back in the Autumn. And we talked about secretions and saliva management, and ENT referrals and breathing referrals, and positioning and all the things we've tried and all the things we're waiting for. And she offered to do some "Thermal Stimulation" (which seems to involve wiping the inside of the mouth with frozen cotton buds to wake up the senses again), and will try this next week when we go in for a sleep study! No one has suggested this before - LF's SW had never heard of it, and I assume Mog's SLT is the same - it's a feeding thing rather than a language thing so not necessarily their speciality. And there are no guarantees that it'll help, and her bite reflex may get in the way of success. But it's a non-invasive, non surgical, not painful thing we can try. And that's exciting.

God is good.
Tia

4 comments:

Tina said...

Lots of things to celebrate in there....so so pleased for LF though she is going to be one happy girl at meal times!
Hope Mogs swallow can help avoid the drownnig if nothing else.
hugs

sarah bess said...

Wish I had someone on my team with the level of knowledge of your SLT. Or you, by this point.

Trina said...

Good news all around! Yay! Oh and the thermal stim....Jophies feeding therapists used those techniques as most of Jophies and Jamies therapies. I'm thinking she called it something else and we used Popscicles, ice cubes or anything frozen and flavored seemed to be his frozen confections of choice! haha....She also used thermal in the opposite direction just as much .... Hot sauces, spicey sauces ect AND in a whole nother realm she used lemon juice/pickle juice ALOT....We still have lemon glycerin swaps we used to swab the inside of the mouth. Something else she used was frozen washcloths for him to chew on...She incorported chewing and then the oral stim all together as one session rarely using one or the other but rather both.....

Again GREAT news! I'm soooo glad little bit gets to EAT! YAY!!

Talk to you later..

Trina and Jophie

Anonymous said...

Wow--sounds like quite a bit of good news where LF is concerned--Great to hear how she is coming along --How wonderful
Debra

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