Tuesday, 26 June 2012

So flipping excited!!!

Well I thought it was time I let you all into a little secret about Sophie.

We visited her feeding psychologist last week and her lack of recent progress with taking anything orally was discussed. She has made huge progress over the last 4 and a half years but more recently things have hit a brick wall and we weren't moving anywhere.

Sophs psychologist told us that really we needed to get Sophie taking things orally (whether that be food or supplements) within the next year and a half otherwise the likelihood would be we would never wean her off her tube. This is due to physical dependence of the tube and her psychological development.

So we decided to do an experiment.

The plan was to give Sophie 5ml of supplement everyday, no question, she had to have it.

So knowing time was running out we decided to give it a go.

The first couple of days were a small struggle as the taste of the supplement made her gag and retch as her taste buds aren't developed like you or I and she is incredibly hypersensitive to anything in her mouth. This includes anything with any flavour or texture so we are pretty screwed trying to find anything that doesn't cause her to retch or freak out.

We decided to just persevere as we had no other option.

Last Friday Sophie told us she didn't want her milk (tube feed) and Ian and I explained that she didn't have to have it providing she drank her whole bottle of PaediaSure plus (supplement 200ml).
Sophie being stubborn said okay but couldn't cope with drinking it out of a cup so Ian sat and fed her teaspoon after teaspoon. About an hour later she had managed 180mls which is absolutely HUGE!

Obviously we knew that the following days could be very different and it may have been a fluke.

By Sunday, Ian suggested Sophie try using the straw so she could sip it at her own pace. She has never mastered how to use a straw and if she has, she normally sucks it up too quickly and ends up with too much in her mouth causing her to gag.
After a quick lesson in 'suck a little bit into your mouth and then remove the straw, swallow and repeat' she grasped it and drank the WHOLE bottle herself. So her due tube feed was thrown away which Sophie was extremely proud of.

Well Monday she drank a whole 200mls again plus some extra from another bottle.

And today, just picked her up from school and she is over 3/4 of the way down her bottle already.
I know we still have a long way to go but each day she is getting a little bit quicker and the most important thing is she isn't gagging or retching at all, just drinking like any other child!

So exciting and a day we feared we would never see. If we can replace all of her tube feeds with oral drinks of PaediaSure then there is a possibility of taking her Mic-key button out permanently.

Sophie hasn't been tube free since she was 4 months old, she is now 5.

Getting her to 'eat' proper food would slowly follow afterwards but wouldn't be as challenging as getting her to do what she is now.

So I thought I would share our fantastic news and to give hope to other parents who have a child with an oral aversion (phobia). Sophie was off the richter scale with the severity of hers so if she can get there, I think most kids without other learning/behavioural issues can too.

Watch this space...

Sophie explaining that this bottle will fill her up so I wont need to give her any milk via button.

Priceless photo :)

Take care all!


Friday, 22 June 2012

The sea is the key!

Well hello there!

Okay so very bad blogger and I apologise for our lack of updates.
We are back though and in full blogger mode.

So where have we been???

We've had a holiday down in Cornwall!.
Prior to the trip, we had Sophs clinic review and still no MRSA has grown just her usual Mr P (pseudomonas) which is good news although we would prefer if Mr P would just leave the party for good. Wishful thinking I reckon!

However all in all everything is looking good. We also got her CT results...

Hmm not quite what we were expecting.

Plug in left lobe causing collapse in the upper lobe, lower left lobe consolidation and lots of inflammation widespread throughout the right lung.

On the plus side there is no evidence of bronchiectasis.

We weren't taking the results too seriously due to Soph being so well and the radiographer had posted a little message on the bottom of the report.

If these results are to be used to determine treatment then I suggest re doing the CT scan.

Basically the scan was a bit rubbish and was difficult to read due to some unknown movement during the scan. So although it reads horrible, it's not as bad as the report says.

However I am beginning to doubt that theory, as while on holiday Sophie began her usual coughing explosion as we were right near the sea the whole time. One evening she coughed up a huge ball of sticky, hard mucus covered in blood. Following this it was literally like someone had pulled the plug out as she just coughed up buckets and buckets of mucus.

So the mucus plug seen on scan was evidently there along with the lower lobe consolidation, as we saw the amount of crap she had stuck down in her lungs come out. It was a relief as well as being horrifying at the same time. I will be discussing this next clinic.

Fortunately after the clear out Soph just went back to her usual baseline cough and we weren't left with her having a full blown exacerbation and being poorly.
Sea air has such a positive effect on her lungs I am going to discuss trialling hypertonic saline again with her team. Watch this space.

I have quite a few blogs lined up which will follow at the very least weekly you will be pleased to know ;)

For now I will leave you with a few pictures of stink ball :D

Nebbing in the caravan. Pleased to say not a single treatment was missed while on holiday!

Sophs favourite place, DairyLand farm.

Having fun while having some physio :D

Even though she loves pink now, she still has her tomboy traits :)

Daddies girl <3

I have exciting news to follow in the next blog about Sophie and an alarming event that happened while on holiday! So keep an eye out!

Take care xxx
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