It has been wayyyyy too long since the last post, I apologise!
So, going back since the last one….
Piper got her piedro boots not long after the last blog. They worked really well for her bendy ankles, and she couldn’t get them off which was an added bonus (no more losing shoes – yay!). They only fit her for a few months (go growth hormone 🙌🏻) but her ankles are so much stronger now and she walks just fine with normal shoes….
Yes I did say “walks”!!!
Piper is FINALLY walking all by herself!!! She just decided to up and go one day, we couldn’t believe it! Then a few days later she also decided to climb the stairs herself! Whaaaaat!
Her growth hormone has been increased twice since the last blog so maybe that’s helped with her strength and sudden walking abilities.
She also got her compression belt before she started walking, we did use it a bit but in all honesty not as much as maybe we should have, it was quite restrictive and it annoyed her.
The interview we did for the GOSH charity was finally published! Here’s the link if you want to read it 🙂
https://www.gosh.nhs.uk/news/through-pipers-eyes
Also Pipers little clip on the BBC tiny happy people – SEN section is out now too, you can watch that here…..
https://www.bbc.co.uk/tiny-happy-people/meet-jade-stevie-piper/zfkkvwx
Well, what strange times we’ve been living in. Due to Pipers condition she was deemed “extremely clinically vulnerable” so since March 17th we have been isolating, we took Alfie, Bella and Mason out of school early – much to the support of their fantastic headmaster and we’ve basically been home since!
Pipers had so so many appointments cancelled, two we managed to have as a FaceTime instead, one with her endocrinologist and nurse and another with the child psychiatrist who oversees all her development. Both went really well, it was good for the child psychiatrist to see her in her home environment as usually for these appointments Piper falls asleep in the car on the way there and then refuses to do anything in the appointment because she’s so moody/sleepy so they can’t assess her.
Piper even sang her a little song haha!
We did have to go to one appointment during lockdown, to the fantastic new centre for rare diseases @ GOSH for bloods.
We all know what a terrible bleeder Piper is, but I looked up tips beforehand and spoke to Sally her nurse for ways to make it easier, I kept her really hydrated in the couple of days before and dressed her really warm and they managed to get it all first time! Woohooooo!!!
Now Piper is at preschool age, we have applied for her to go to one nearby which has a visual impairment base. How lucky are we that that’s on our doorstep 🙂
She’s got her place and we have a virtual transition meeting on the 7th, but in all honesty, we won’t be sending her in for quite some time. It’s just not worth the risk it poses to her, especially at that age where children are always full of snot and bugs (great for a normal child’s immune system btw) but with COVID it’ll just be too worrying knowing what’s what, so we’re gonna be delaying that.
We’ve also been considering delaying Piper starting school for a year, we want to give her the best chance of succeeding in school and at the moment she would just be so far behind her peers it wouldn’t be fair on her, but, she’s not due to start for another year so she could suddenly catch up in that time, we’ll see!
Last month Pipers visual impairment teacher – Helen, called us to see how Pipers doing, we had a long chat and then she told us she’s retiring! NOOO!!!!!!!!
I Honestly cried my eyes out the second I got off of the phone. She’s just been so amazing the last couple of years, she’s accompanied us to GOSH for Pipers developmental appointments, she’s referred her to any and everyone to get the extra help she needs and most of all she has supported us in so many ways! The days when Piper would sleep through her sessions, she didn’t leave, she stayed with us and just spoke to us, we don’t see her as just a professional, we love her and we are truly gutted Piper won’t see her anymore.
She ended up coming over the following week and sat in the garden so we could at least say goodbye face to face rather than on the phone. She wrote us such a touching letter that I will always treasure.
Ugh, just gutted!
A month ago Piper had her last breastfeed!
I’d managed to break a rib and needed stronger painkillers than paracetamol, which wasn’t possible while breastfeeding, so I went without them for 4 painful days (just to emotionally prepare myself to stop) then I just stopped. It was EASY! Literally can’t believe how easy it was to stop! Every time she cried Stevie picked her up and got her some food, she only asked for it twice in the first couple of weeks and not at all since!
It’s definitely more of a struggle getting her to sleep since stopping, she just goes and goes and goes then crashes, but it’s actually having a positive impact on her sleep too. She’s managing to stay awake for 9-12 hours and sleeps roughly for 5-7.
It’s still always at the wrong times (waaaaa) but it’s still an improvement!
Now we’ve just gotta somehow try to get her to stay awake for longer and sleep for longer to work on getting her on a 24 hour cycle, which includes her sleeping in the night instead of the day. I’m not expecting miracles, I’ve accepted the fact I probably won’t ever get a full nights sleep again.
So Piper is doing amazing physically, she’s always on her feet, dancing, trying to run, climbing etc, but her language is still very very delayed, she’s saying a couple of things now with meaning…. “open the door” when she wants to go in the garden, “numnum” “cake” or “biscuit” when she wants food, “stop it” (this was new today, stevie picked her up while she was playing and she said “stop it” haha)
She understands things we say too, like “change your bum” she will lay down ready for it, if we tell her it’s bath time she will walk to the bathroom, if we tell her it’s time to get in her bed, she clings on to us and moans lol. She’s managed to learn that certain words are grouped together, for example if I say “red” she will carry on saying all the other colours, she definitely doesn’t know what the are or what they mean but she knows there’s a link with them all.
She can’t ask for water still, which we think it’s a pretty important one, but we’re working on that.
She’s doing so much better with handling food, still not anything cold or squishy, but she happily holds toast, pizza, biscuits, cake, crisps, sandwiches etc. Basically anything dry.
Her fave things at the minute are “the wiggles” – she’s learnt most of their songs, so have we 🙄, still Peppa pig – she actually recognised a peppa pig pillow she got for her bday a couple of months ago! Thanks Ka & Al!
I passed it to her, baring in mind she had never seen it before, and she said “Peppa Pig” how amazing is that!!!! It’s the first thing she’s ever recognised herself 💗
And the garden, she is desperate to go out there every time the door opens, rain or shine she wants to be out there. Remember just a few months ago she wouldn’t even touch the grass!?
Such progress!!
We got a rescue dog in April, he’s so adorable, his name is Arlo and he’s 3, the kids all adore him, we was really interested to see how Piper would be with him but honestly she literally doesn’t pay him the slightest bit of attention and neither does he with her haha.
Piper turned three in June!! THREE!! crazy eh?!
We had a lovely day just the 6 of us, it was bit different to last year when we went away with most of the family, but at least this year she didn’t sleep through her birthday which was nice haha!
Also during lockdown our amazing Nay-Nay decided she was going to raise more money for Pip, for those who don’t know my lovely cousin Denay has had ridiculous amounts of problems and surgery on her back, the last surgery being just a year ago and she decided to challenge herself to walk 3k a day for a month with Piper being her motivation 😢
She did soooo amazingly and raised so much money again.
It was so emotional seeing her do her final walk and cross the finish line.
I love you so much Denay! You have the purest heart in the world!!
Anyway I think that’s about all we’ve been up to, I can’t update a lot of her medical progress because we’ve been unable to go to her appointments but once that’s all back in action again I’ll be sure to let you know, I’m gonna finish it on one of my fave things about Piper, her singing!!!
Through Piper’s Eyes 
My all time favourite video clip. I love her singing along with the keyboard.
Piper you are doing great xx
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