Hello again 👋🏻
Everything with Piper had been going really smooth sailing hence the huge gap between updates but then in the last 6 months there’s been a lot of changes.
I’ll start with the rubbish then go from there
Pipers health
In February Piper was booked into GOSH for 24 hour blood profiling as she had been having a couple of tired “floppy” episodes around the same time each day in school.
For the first time ever Stevie took her for an overnight stay.
She was super upset getting her cannula put in and kept trying to take it off or getting Stevies hand and putting it over her bandages signalling for him to get it off, in the end she cried herself to sleep then after a short nap was up and her usual happy self again.
Remember here I’ve just told you she had a short nap after being stressed, I’ll get back to it soon.
They had the BEST time! After having her lunch he took her to the park over the road – it’s a really lovely park and Piper enjoyed every part of it
look how strong she is at holding on here…..
Due to Pipers lack of danger awareness and her incredible ability to climb she is unable to go in a normal bed and she can’t go in the hospital cots anymore as she can climb them, so they arranged for her to have a box bed.
I’ve never seen one before but it was fantastic, it has all clear perspex surrounds so you can see her in there the whole time and it meant they had their own room on the ward.
A play therapist came round with some toys and gave her a mobile sensory unit for their room.
It was probably her best stay at gosh and I think if she could choose she would opt for Stevie to take her every time 🤣
In March I got a phone call from Pipers endocrine nurse to say her low cortisol was now too low and she has to start daily steroids.
Remember right in the beginning when I told you the one dangerous aspect of her condition that I couldn’t even think about without going into a black hole (mentally)- adrenal insufficiency…. We’re now facing that.
Piper is adrenal insufficient and it’s scary.
We were booked in 4 days later for emergency training at GOSH with one of Pipers endocrine nurses
An ambulance priority line was put in place on our home address and Pipers school so if she needed an ambulance her name flags up and an ambulance would be sent as a priority.
She now has open access to our local hospital, so if we take her she is put in an isolated room and seen straight away.
Due to the steroids her immune system is affected so she’s more vulnerable to all illnesses now so she can’t wait in hospital waiting rooms.
How do we feel…. It’s really weird, we knew one day this would happen so we’ve had 5 years of preparing for it, yet it hit us like a tonne of bricks.
Talking to Abi on the phone I was absolutely fine, didn’t have any feelings or upset inside, then I spoke to some of my friends and family about it- was definitely more upset. Then I spoke to Stevie (he had been in a meeting so I couldn’t call him) and it all came out.
I went into a foggy hole and could barely muster any form of conversation.
The next day I felt absolutely fine and continued to do so until the day before the training, then I started having panic attacks which still haven’t subsided, I’m just patiently waiting for it to all ease off.
At the training we went through her normal daily dose of hydrocortisone, which has to be given strictly at 6am, 2pm and 10pm.
What to do if she’s unwell or hurts herself (doubling those doses for 24-48 hours or until she’s better) and then the emergency injection training for when she isn’t tolerating her doses – for example diarrhoea or vomiting within the hour of giving her her oral dose or if she’s showing symptoms of hypoglycaemia or an adrenal crisis.
In October Piper had a horrendous accident in school which resulted in the worse black eye I’ve ever seen, we had to take her straight to hospital, she was quickly discharged from that one and we had to take her to a&e because they thought she’d shattered her eye socket.
She was so so so upset when I picked her up from school, luckily I’d just arrived when it happened so they whisked her out to me!
She was still upset when we was at the minors hospital then on the way to the bigger hospital she fell asleep.
When I spoke to the nurse about this during our training, she said she thinks Piper was probably going into a crisis and the stress and lack of cortisol made her fall asleep. The same as the stress caused by having a cannula in her arm like I said earlier – she fell asleep.
In any instance where Piper body is under stress we will need to double dose her or give her the emergency injection.
Some information we was given for Piper on having low cortisol –
Cortisol is one of the important hormones in the body. It is essential for maintaining blood pressure, blood sugar levels and enabling the body to cope with illness, serious injury or general anaesthetic. Piper receives a synthetic version of cortisol (hydrocortisone, as tablets) three times a day and when she is well this is sufficient medication for her daily needs.
During illness or surgery, increased amounts of hydrocortisone need to be given. Therefore, when Piper is unwell with a temperature, moderate cough or cold, viral or normal childhood illness, she requires increased amounts of hydrocortisone which is done by doubling her usual daily doses. If however, Piper was involved in an accident or became unwell with vomiting and diarrhea, and was therefore unable to take hydrocortisone orally, hydrocortisone will need to be given as an intramuscular injection (50mg) into her upper thigh.
An ambulance should be called for as soon as possible if there are concerns that Piper is seriously ill, drowsy or unresponsive, so that she can be taken to the nearest accident and emergency (A&E) department and assessed by medical staff and the hydrocortisone injection given if required.
It’s a lot isn’t it.
We now have to carry an emergency hydrocortisone kit with us wherever she goes and she has one which stays at home and one which stays at school.
She also has to wear a medical alert bracelet which tells paramedics/doctors etc that she’s at risk of an adrenal crisis and she will have the 24 hour blood profiling done again in a few months to see if her dose is enough or if it needs changing.
In addition to this we have also applied for a medical alert dog who would be able to pick up if Piper is going into an adrenal crisis.
We don’t know whether she will be accepted due to her age/developmental delays but we really really hope she is. It would just offer so much more peace of mind during the night when we can’t watch her every minute ourselves.
The day after training we had a meeting at Pipers school to show them how to give her medicine and how to use the emergency injection. GOSH will also set up virtual training with them but that isn’t instant so for the time being they just needed to know the basics while she’s in school.
Aside from that slap in the face everything else has been great!
Pipers School
After a long battle over Pipers school placement Piper was offered a place at a brilliant SEN school near us and she is due to start in September.
This is wholly thanks to Stevie reading a 300 page document in the middle of the night, highlighting every aspect of why her current placement isn’t suitable and fighting for a suitable provision.
It took a lot of time, endless paperwork, recommendations from the people who work with Piper day to day – the neuro developmental team at GOSH, Kayley Shirmer (Pipers QTVI and actual angel on earth), speech and language, Mo James from our local SENDIASS team, Lesley Love from LOVEABA, Miss Gilbert (Pipers 1:1) ridiculous amounts of meetings and phone calls and a tribunal case, but we got there in the end.
Piper was offered her current school because our local council went to panel with an old Educational health care plan which didn’t include her autism diagnosis or severe developmental delays.
It was a huge mess up on their side and they held their hands up to it which was great, but it didn’t give her a place where she needed one.
To remedy their blunder they paid for Piper to have an ABA therapist at her current school who would teach her the same way the SEN school teaches until she had a place at the SEN school.
Q: What is ABA therapy?
ABA is a therapy based on the science of learning and behavior. It is typically used to help people with autism and other developmental disorders learn behaviors that help them live safer and more fulfilling lives.
ABA focuses on teaching necessary skills and stopping dangerous behaviors rather than preventing harmless self-stimulatory behavior (stims). Therapists work with autistic people to improve skills like:
• Communication and language abilities
• Social skills
• Self-care and hygiene routines
• Play and leisure skills
• Motor abilities
The goal is not for someone to appear neurotypical. The goal is for their life to be improved in a way that is meaningful to them.
We met Lesley Love (owner of LOVE ABA) who has an abundance of knowledge and experience in ABA therapy and she matched Piper with two ABA therapists – Mayowa and Toni, who would split the week with Piper in school.
They are both absolutely fantastic, Mayowa has loads of experience as her own sibling has ABA therapy and Toni has done this for years, she’s so full of energy and love and that’s just what Piper needs!
They are teaching her new ways to communicate as she is non verbal and she can now sign when she wants a drink, biscuit, to spin and bubbles ❤️
They are working on even more commands and slowly teaching her to use the toilet.
Pipers sleep
Can you believe it, Pipers sleep has actually been better! We still have nights of no sleep but she has definitely improved.
She’s moved into a big girl bed as she kept climbing over the sides of her cot and so far she’s done really well with it, a few nights we’ve woke up to her snuggled inbetween us but for the most part she stays in her bed.
One of the side effects of the hydrocortisone is that it can mess with sleep which is just TYPICAL and we’ve already noticed her sleep is getting worse but we’re keeping everything crossed it doesn’t completely revert back to her old routine (or lack of)
Communication and Development
We have noticed small but great improvements with Pipers ability to communicate her needs with us.
She pulls us and puts her arms up if she wants a cuddle, if we ask her for a kiss she gives us her forehead to kiss, if she wants her arm tickled she pushes her elbow towards us, if she wants her shoes off she takes our hand and places it on her feet, when we’re dressing her we put her trousers on midway and she will pull them up the rest of the way, she understands if we say “let’s put on your socks” and she will lift a foot.
If we say “let’s change your nappy” she will lay on the floor, she knows if we say “let’s have a bath” to go upstairs to the bathroom.
She also knows what’s coming when we say “let’s brush your hair” as she gets angry and counts to 10 or sings a nursery rhyme angrily. (We count to 10 when we’re nearly done brushing it so she knows it’s nearly over)
There’s more little bits like that but the are just GREAT, it shows she’s making little connections to every day words and actions.
She is such a happy, crazy little thing, her favourite things are still the wiggles and dancing, she loves being thrown around by Alfie, Bella and Mason, she lovesssssss facials, being tickled, massages, basically anything hands on or fun and she’s in her element.
She’s still practising using her cane with her habilitation teacher Lisa but she’s still not overly fussed by it and she gets round pretty well without it.
Piper is nearly SIX!?!
How?
This year we’re going to be on holiday for her birthday, it involves a lot more planning due to her medications, we have to declare each medicine through customs, GOSH will be translating her emergency care plan to Turkish so there’s no confusion should she need medical help, we have to know where the nearest emergency hospital is there but asides from that. We can’t wait!!!
In the meantime Stevie has decided to spend his 30th birthday year doing 30 things to raise money for the charities closest to his heart. One of them obviously being GOSH.
Here’s a little video of why he has chosen GOSH and the link if you’d like to donate, it all officially kicks off in May
I think that’s mostly everything, and I hope there’s no need for another update soon. It means everything’s running smoothly ❤️
Through Piper’s Eyes 
I think Piper is just a remarkable little lady & you & Steve are the most incredible Parents. I cannot imagine how heartbreaking it is to receive news like this & the worry that comes with it. Just know that you are all loved so much & we are all behind you xxxx
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Great read she doing everythink with joy and laughter and jade and stevie are the best mum and dad she counld have best of luck my cheeky pipper xxxxx
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