had a day at the farm with Emil 😊
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!
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
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!
To get a picture if a statement here is Emmys first page
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.
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!!
Friday saw two appointments, Niamh with the community pead and neuro and Emmy with the immunologist.
So Niamh’s appointment, they discussed the PVL again, they looked through her notes to look at her neonatal head scans. They wondered why it had taken 13 years to learn the extent of Niamh’s damage and to get an MRI. Niamh’s neonatal discharge summery clearly states ‘cranial ultrasound normal’ they both said it is impossible, they found an old report that stated, ‘small insignificant bleed’ also impossible. They also noticed that there is a large chunk of Niamh’s notes missing! There is now to be a trust meeting. Her medication has not been changed but they feel she is ready for Botox again.
Then it was through to the children’s for Emmy to see the immunologist. Emil was poorly so had to come with us, now that was hard work, having a learning difficulty, been hearing impaired, having global developmental delay and everything else is just a no been sat in hospital for 2 hours in the morning and then 4 hours in the afternoon!
Emmy’s drugs have been changed and her emergency care plan has been changed, the immunologist also have the all clear for Emmy to go on the school residential!
The care plan now states that Emmy has anaphylaxis of unknown origin as the dr is stumped as to why this is happening!
here are some pictures of when Emmy has the urticaria, she also has dermagraghism you can see this in the bottom picture.
maybe this is the reason Emil’s behaviour is not good, his readings off his ventilator! He is throwing central and obstructive Apneas as well as having snores, pressure increase maybe?
Shocking behaviour off emil today, SALT was going well until she didn’t know what emil wanted the the frustration started, throwing kicking biting etc. His behaviour is getting worse! Roll on respite tomorrow!
Had Niamh’s hydro today too, she’s ready for Botox again. She did well today but is having increased pain and neither her baclofen or her diazepam has room for increase.
Me and Jodie had our new patient checks at the new GP surgery, something I didn’t want to do but had to, battling for the children’s medication every month is getting too much, wanting a fax every month to say they still need the drugs even though they get letters from the Children’s hospital all the time, then the GP challenging me about the hospital consultants, it went too far when the said GP wouldn’t let Emmy have the epipen for school and I had to ask the children’s for another prescription!
Its medic free Wednesday tomorrow, they do try every week for me to have one day where no one contacts me and I have no appointments, I haven’t actually had this for 9 weeks so I am looking forward to a day In Leeds with Jodie and my friend.
4 more appointments to go though Thursday and Friday!
Thursday we have Emil’s IEP review and hearing impaired team visit, Friday we have Niamh at the community pead and then through to the children’s hospital for Emmy to see the immunologist.
Saturday is the final game of the season and a must win!
uuuuuuuu rreedssssssssss!!!
My crazy life 