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- Sep 11, 2011
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Apologies I've not been on much the last few weeks here not sure what I've written in previous posts so thought I'd update fully all that's gone on recently..... Jess had more surgery on thursday this was yet another stretch of her oesophagus ahes been having these every 2 weeks since christmas. I've finally booked an intense week long driving course to get myself driving as I need to now. I've left work recently to look after Jessica when she's finally home.
The government here in the UK are funding some care for Jessica so we're hopefully getting 4 nights a week respite so I can sleep as she is pretty full on 24/7.
She is fed via a pump by a gastrostomy tube in her tummy. She has 6 hourly nebulisers (currently sometimes more often if she's unwell). She then needs her Tracheostomy suctioning when it gets clogged with secretions...... in the mean time my 2 year old boy is a typical little boy he's into climbing everything and I mean everything, playing with cars and trains and because of those Loves anything to do with Thomas the tank engine (assuming you guys know who he is? and he's not a completely British programme like it was when I was a child) he talks non stop now... he can do at least 3 word sentences and always says Please and Thank You's. Bless him he's so good. He can also count to 15 without any prompting at all.
What else ohhh yes because we need night carers they want Jess to have her own room. Now we thought she could share with Jack before all this so now our local council housing association are trying to find us an affordable 3 bed property. Which is good but a long process and part of the reason we can't bring her home.
So all in all busy life and a stressful time but we'll worth it once we're finally home with her.
Being a TOF mum is hard and I hope anyone else who does come on here for support will find some of this helpful xxx
The government here in the UK are funding some care for Jessica so we're hopefully getting 4 nights a week respite so I can sleep as she is pretty full on 24/7.
She is fed via a pump by a gastrostomy tube in her tummy. She has 6 hourly nebulisers (currently sometimes more often if she's unwell). She then needs her Tracheostomy suctioning when it gets clogged with secretions...... in the mean time my 2 year old boy is a typical little boy he's into climbing everything and I mean everything, playing with cars and trains and because of those Loves anything to do with Thomas the tank engine (assuming you guys know who he is? and he's not a completely British programme like it was when I was a child) he talks non stop now... he can do at least 3 word sentences and always says Please and Thank You's. Bless him he's so good. He can also count to 15 without any prompting at all.
What else ohhh yes because we need night carers they want Jess to have her own room. Now we thought she could share with Jack before all this so now our local council housing association are trying to find us an affordable 3 bed property. Which is good but a long process and part of the reason we can't bring her home.
So all in all busy life and a stressful time but we'll worth it once we're finally home with her.
Being a TOF mum is hard and I hope anyone else who does come on here for support will find some of this helpful xxx