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Old Jan 19th, 2017, 20:33 PM   131
Mum (Mom)
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Congratulations on bringing her home finally. You An your family really deserve it, after such a long, difficult journey I pray things go much much smoother for you all x

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Old Jan 25th, 2017, 18:00 PM   132
Mum (Mom)
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I am sooo happy to hear that she is finally home! congratulations, she is such a strong girl and you are such a strong mommy I think about you guys a lot even though I don't login much anymore

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Old Jan 30th, 2017, 09:33 AM   133
Mum (Mom)
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Location: Hampshire, UK
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I just read your whole story and wow I am so pleased she is home now and you can all be a family together you are such a great & strong mummy

sending your beautiful girl all of my best wishes for the future

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Old Feb 5th, 2017, 04:11 AM   134
Mum (Mom)
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hey hun its been so long since i was on here.
I am so so happy to see that you have finally got to bring her home! Im so sorry shes had to have the tube put back down again but hopefully it wont be for too long.

how are you all doing? I really hope your all keeping ok xxx

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Old Mar 12th, 2017, 17:06 PM   135
Mum (Mom)
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Hi everyone...... thank you all for your kind words itd been hectic since january. So update:

Her tube is still in place. She's now having steroid injections into her Oesphagus to help strengthen it. We prat that works or we may have to figure out a new plan. She's generally on oxygen 24/7 now which is frustrating we can't seem to wean her down but she's coping well on it. She is finally tasting bits of puree (at almost 18 months old) 😂

Jack is amazing he's learnt to help me look after her and at two and half years old can out the attachments on her Tracheostomy when she pulls them off. He helps me suction her Trachey tube out when she needs it (under supervision of course) he can count to 25 with no help.... can sing the ABC song.... recognises colours and shapes easily and we're practicing writing already with wipe able books.... he also non stop talks in full sentences now he's amazing even with all this stress he's ahead of where he should be at his age.

As for Jessica she's now crawling and can stand aided being at home is bringing her on developmentally and she is starting to learn makaton sign language with us so she can communicate as she hates the speaking valve in her Trachey and won't tolerate it.

Hopefully I'm not making this complicated cos I know what all the kit and stuff we do with her means 😂

We're still off for surgery every 3 weeks at her major hospital including an over night stay which is a bit of a pain but this is ongoing for the future as far as we can tell at the moment. Oooh and the poor mite is just getting over chicken pox 😣

That's all I can think if at the moment but I'll try and update again soon

Thank you all again xx

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baby , tof

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