Since my last update we have had a lot of up and down moments with Mireya. Mireya has had a few hospital admissions, Sepsis, Therapies and lots of appointments.
In October we had a day visit to Sheffield Children's hospital for Allergy testing as every time Mireya has had antibiotics with Penicillin in she has had a reaction. She they did a trail on her with Amoxicillin and she passed this test so now she is can have amoxicillin as a antibiotic. there is still a lot more trails she needs but these can only be done once every 6/12 months so she still can't have any other penicillin based antibiotics.
On 19th November, Mireya woke up with a really nasty nappy rash overnight it appeared and was scabby red raw rash. We noticed the night before that her breathing was heavier than normal so i emailed Mireya's consultant who instantly rang me and told me to take her to the ward and he would meet us there.
While we was waiting for Dr Pramod to come another Dr come and reviewed Mireya and said it was just a rash and nothing to worry about, we said we would still wait for Dr Pramod to have a look as he is on his way from another hospital to see Mireya. 30 minutes later Dr Pramod come in and took one look at Mireya and said she is very poorly little girl we need to do bloods, blood culture and a chest x-ray. Mireya's heart started racing and panic kicked in what could this amazing DR see, Braiden asked him what he thought as he started to check Mireya and he said I'm not 100% yet but she is very poorly and needs IV antibiotics. Once he seen Mireya's nappy rash he said he thinks its Sepsis but we have to wait 24 hours for the blood culture to come back within a hour mireya was on 2 different IV antibiotics every 3/4 hours.
as the day went on the more the rash spread to her legs and hands and around her mouth the rash was speeding like Hand, Foot and Mouth.
The next day the results came back as sepsis and her infection levels was 132 a normal level is below 10 so this was very high.
After 6 days mireya's infection levels come down to 26 so we was able to bring her home and take her back 72 hours later for another test to make sure the infection levels was staying down with oral antibiotics.
when we took her back the levels came back as 8 so we knew that once again our little fighter had smashed another obstacle.
Again my mam and Jaime came to the rescue and Vienna went on holidays to Auntie Jaime's which she loves to go play with her big cousins and my mam was there again been our ROCK. What would we do without her i don't know cause she drops everything and stays with us.
The next couple months are gonna be full on as we have lot more appointments and therapy’s.
We start this week 3rd February with another trip to London to have special tiny hearing aids thats been made specially for Mireya as she is so small and the ones the NHS provided for her was to big and not the correct ones for her.
Mireya has permanent loss of hearing in her left ear and has moderate hearing loss in her right ear. So once she gets the special hearing aids this will help her a lot more.
This week coming we have 14 appointments in 5 days with check up's on Mireya's heart, Kidneys, Speech therapy, Physio therapy, development assessment, Eye Clinic and many consultations and scans.
The Showman's Children's Charity are supporting Mireya with her weekly Speech Therapy and her Hearing Aids and once again we would like to thank all the trustees and everyone that donates to this amazing charity. Not only is it helping Mireya it has helped/is helping 11 other Showman's Children.
Mireya Fest which is going to be held on Tuesday 9th June 2020 is in aid of The Showman's Children's Charity and 100% of proceeds are going to the charity.
In October we had a day visit to Sheffield Children's hospital for Allergy testing as every time Mireya has had antibiotics with Penicillin in she has had a reaction. She they did a trail on her with Amoxicillin and she passed this test so now she is can have amoxicillin as a antibiotic. there is still a lot more trails she needs but these can only be done once every 6/12 months so she still can't have any other penicillin based antibiotics.
On 19th November, Mireya woke up with a really nasty nappy rash overnight it appeared and was scabby red raw rash. We noticed the night before that her breathing was heavier than normal so i emailed Mireya's consultant who instantly rang me and told me to take her to the ward and he would meet us there.
While we was waiting for Dr Pramod to come another Dr come and reviewed Mireya and said it was just a rash and nothing to worry about, we said we would still wait for Dr Pramod to have a look as he is on his way from another hospital to see Mireya. 30 minutes later Dr Pramod come in and took one look at Mireya and said she is very poorly little girl we need to do bloods, blood culture and a chest x-ray. Mireya's heart started racing and panic kicked in what could this amazing DR see, Braiden asked him what he thought as he started to check Mireya and he said I'm not 100% yet but she is very poorly and needs IV antibiotics. Once he seen Mireya's nappy rash he said he thinks its Sepsis but we have to wait 24 hours for the blood culture to come back within a hour mireya was on 2 different IV antibiotics every 3/4 hours.
as the day went on the more the rash spread to her legs and hands and around her mouth the rash was speeding like Hand, Foot and Mouth.
The next day the results came back as sepsis and her infection levels was 132 a normal level is below 10 so this was very high.
After 6 days mireya's infection levels come down to 26 so we was able to bring her home and take her back 72 hours later for another test to make sure the infection levels was staying down with oral antibiotics.
when we took her back the levels came back as 8 so we knew that once again our little fighter had smashed another obstacle.
Again my mam and Jaime came to the rescue and Vienna went on holidays to Auntie Jaime's which she loves to go play with her big cousins and my mam was there again been our ROCK. What would we do without her i don't know cause she drops everything and stays with us.
The next couple months are gonna be full on as we have lot more appointments and therapy’s.
We start this week 3rd February with another trip to London to have special tiny hearing aids thats been made specially for Mireya as she is so small and the ones the NHS provided for her was to big and not the correct ones for her.
Mireya has permanent loss of hearing in her left ear and has moderate hearing loss in her right ear. So once she gets the special hearing aids this will help her a lot more.
This week coming we have 14 appointments in 5 days with check up's on Mireya's heart, Kidneys, Speech therapy, Physio therapy, development assessment, Eye Clinic and many consultations and scans.
The Showman's Children's Charity are supporting Mireya with her weekly Speech Therapy and her Hearing Aids and once again we would like to thank all the trustees and everyone that donates to this amazing charity. Not only is it helping Mireya it has helped/is helping 11 other Showman's Children.
Mireya Fest which is going to be held on Tuesday 9th June 2020 is in aid of The Showman's Children's Charity and 100% of proceeds are going to the charity.
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