As most of you are aware, Sophie doesn't just deal with one condition, no that just isn't enough is it? She has battled with two very different conditions every day since she was born.
The focus of the blog usually revolves around her day to day life and CF rearing its head every now and again currently. I do find I touch on her TOF/OA issues but it just never seems to be in the spot light often.
I'm hoping this will change in the future but in a positive light.
We met with Sophie's psychologist and dietician who deal with her oral aversion (eating phobia) last week. We had a long discussion about where we felt Sophie was at now in regards learning to eat. She has made some small advances but I often feel like I over ooze positivity in how well she is actually doing or I don't mention it at all.
Mostly the reason for me not discussing it is basically down to emotional wear and tear, period.
I can honestly say that dealing everyday with a child who just wont eat is draining. Physically and mentally, and it is one of the hardest things Ian and I have had to deal with, with Sophie.
I'm not talking fussy eating here, that's something completely different. I'm talking nothing going into the mouth and if it makes it in there by some miracle, it's spat out or retched out before given the opportunity to be chewed, sucked or swallowed.
The endless tube feeds and living life around a schedule because we have to give our four and a half year old milk throughout the day so she doesn't starve. Mixing up prescription formula into baby bottles so it's easy to measure out each individual feed.
We have been doing this everyday since she was born.
It's only when I really think about it I realise how draining the whole thing is. It was hard in the early days because all anyone wanted to do was ask how she was getting on with her eating. Ian and I found ourselves constantly repeating ourselves which in turn brought out all our anxieties and emotions about the whole situation. It felt like a constant reminder. In the end Ian just told everyone that "when she eats something we will tell you, we'll let you know if there is any change at all".
Currently the maximum Sophie will try and eat is about 3-4 teaspoons of either yogurt or ice cream that's it. She will lick and suck other things but doesn't really eat them.
You remember the failed tube wean we tried last year? She wasn't ready to take the next step then but we all feel she is now.
Last year I was very apprehensive about it, it was uncharted territory and I had no idea how she would react. This time feels very different, I'm much more relaxed about the whole thing and I know now that if it doesn't work it's fine. We can try again in the future if need be.
So we are already over a week in and this time we are doing things very slowly with milk reduction. Sophie seems to understand what we are doing and is trying her hardest to eat.
For the first time ever, Sophie ate a whole pot of yogurt. Every. Last. Morsel. And, I just sat there with my jaw on the ground in disbelief as she asked for another, which for the record she ate half of!
Tiny steps but HUGE leaps.
I'm not sure how this will play out in the long run but I feel very different this time. Is this actually the window of opportunity and last time was a warm up to the main event?
I guess only time will tell right?
I hope you will all stick with us on this journey once more as I know there may be times we need a huge pick me up!
Will leave you with a few recent pics of Soph...
She's ready to start the journey now :) Ian has started to use his bike again as rehab for his knee and Soph still isn't quite able enough to ride her bike with him. She'd never keep up so he bought this trailer for her which attaches onto his bike and she absolutely loves it. She has to wear her bike helmet for real journeys but this was just a try it out adventure. She squeals with so much excitement when out and about in it that she has cleared her own chest several times!!
"Mummy I really want one of these bags"- Sophie aged 4 clutching Mummy's Louis Vuitton!
Who knew reading was so tiring?
She wore herself out after a shopping trip and had also had her port flushed earlier on in the day.
Take care all xx