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had a day at the farm with Emil 😊




Amazing kids

Been crazy crazy! Emmy finally went on the school residential but not without numerous meetings, Emmy saw her immunologist who hand wrote a letter to school to make them feel more at ease! The whole holiday went without a hitch! All that fuss for nothing!
Emil has had a LRTI during this the resp also found a new heart murmur so we are having an echo for that on 24th June. Genetics have called us back yet again on the 26th June, wonder what weird and wonderful thing they have found this time!
Had Emils statement review and he is doing very well, he met quite a few of his targets so has some new ones added now, my clever boy! One is to pull his own trousers down at nappy time!
Both Niamh and Emmy are very delayed with their dental development, had X-rays they go back next week to see what the plan is.
Had a call from ENT to say that on Niamh’s brain MRI they have picked up the cholesteatoma yet again, third time it’s grown bless poor Niamh.

Oh yes, Bethany ran in the British tumbling finals in stoke last weekend and she is ranked 10 in the whole of GB how cool is that!



welcome to my crazy life

crazy days yet again, last week saw ENT for Niamh, the hearing she has can not be made any better, she is really struggling now and has the best implant and surgeons you could imagine, she has two ENT surgeons and between them they have done a marvellous job with her but it has cost her her hearing and now she is struggling. School have put it in more support from the hearing impaired team and given Niamh a mentor so we will see how she progresses now.
We had our new patient checks at the new GP, they were really nice, Niamh had her final cervical cancer jab much against her will and emil had his pre school boosters, everyone is up to date with their jabs until Emmy goes in to year 8 now! All medication done not a problem for all the children the GP even rang me after she has received Emil’s files to see how he was going and to offer any support, I’m so glad I finally changed!
Emmys immunologist rang school and they are now happy to take her on the residential at last!
Emil’s statement review is due, I can’t believe it’s been 6 months already! Medically we haven’t really progressed with Emil much over the last two years, I guess we are in for the long haul, no one can give a prognosis and this is frustrating. He had an overnight trace which wasn’t brilliant but wasn’t one of his worst. He has all sorts of learning plans on place from hearing, speech, Physio etc so in these things he is progressing. We have had Physio speech educational psychology and hearing impaired visits this week!
Emil had some very kind Christian’s come and pray over him and lay their hands on him while they prayed to try and help him, i really hope these prayers are answered.
Only 3 weeks now till the GB tumbling finals for Bethany, it’s both exiting and nerve wracking!
Jodie is preparing for her end of year college showcase can’t believe she is almost at the end of her first year!

Emil all settled after prayers


and her care plan

care plan 1 and care plan 2! There is a full written care plan but here is the plan of action page and then the difference with the one Sheffield did!



Emmys statement

To get a picture if a statement here is Emmys first page


Emmys lung function test

Emmy had a lung function test in the action lab as the immunologist wondered if she had asthma, to say how long she was ventilated for and on oxygen her LF is outstanding!
All the breathlessness and chest tightness, lump in throat etc has been put down to this angiodema.


uuuuu reds

amazing day on Saturday a day I will never ever forget. Every emotion was felt throught the stadium, 2 teams with a winner takes all, the loosing team was to be relegated. Barnsley were in front, then square with Huddersfield then barnsley were in front then Huddersfield. 2-2 at 92 minutes ment Huddersfield stayed up and barnsley went down as Peterborough were drawing with palace, but with 1 minute to play crystal palace scored their winner! so the super reds and town both stayed up!!




uuu reddssssss barnsley fc WILL be playing championship football next season!!!

a day I will never forget that game and atmosphere was awesome!!