Pipers had lots going on with physio lately. We saw Sarah, her physio, a couple of months ago.
At the time Piper was still just crawling and not doing much in terms of walking, so we discussed getting a proper walker for her, a metal framed one – not the cute little wooden one she’s been reluctantly using)
We also spoke about how hyper-mobile she is and how we can’t get supportive boots on her feet because her ankles don’t have enough strength to push them in, so Sarah referred her to be fitted with some Piedro boots.
She also measured her up for a compression waist band that she will wear as much as possible to hold her hips in tighter, with the hope it’ll help with her walking.
We had a couple of appointments following this with Piper trying out different walkers but it was completely unsuccessful. Pipers sleep at night is non existent at the moment, so every appointment we have lately we’re having to try to wake her up for an hour beforehand, she’s in a foul mood and we don’t get anything done.
It was left there, then a couple of weeks ago she was fitted for her boots.
By chance we saw Sarah at the hospital, so she quickly took us into a room to show us the walker they’d got in for Piper.
A few weeks before, Piper suddenly decided to start walking (holding our hands) and pushing herself up with little support.
Sarah couldn’t believe the progress in such a short time.
Pipers growth hormone was increased in this time so maybe that’s why she’s suddenly got more strength?
Piper point blank refused to even touch the walker (which we kinda knew she would hate anyway!) so as she’s now up on her feet, we’re ditching the idea of a walker and she’s been booked in for rebound classes.
These are classes on a trampoline to try to help with her balance and get her working out her muscles and her names also down for sessions on a mechanical horse.
So that’s where we’re at with physio.
Pipers doing amazingly at walking holding our hands, it’s all she wants to do at the moment and it’s something Stevie has really been longing for. He’s been waiting to be able to walk around the school holding her hand for such a long time. And now he can 💙
Her feet often drag behind, but her boots should be made this week or next, so fingers crossed that solves that problem!
Piper and Sarah
Our latest appointment at Moorfields showed no change in Pipers eyes, her glasses prescription is still the same and she doesn’t mind wearing them anymore which is great!
We still can’t tell if they help at all but they’re worth a shot!
We had Pipers second appointment with the neurodisability sleep doctor last week.
The last time we saw him, she was prescribed a SAD lamp, and while it’s definitely helped with cutting down her naps, it’s done nothing with helping her sleep at night, So she’s being put back on melatonin (despite it not working previously.)
Last time she started on 3mg, this time she’s starting on 1mg and working her way up to 6mg. It’s the only option we have at the moment to try to help with it. I’m not optimistic but we’re willing to give it another go!
Last week we had Pipers 6 monthly check with the neurodisability team – a child psychologist, a registrar and a consultant paediatrician.
Again, Piper had been up ALL night, finally falling asleep on the way to GOSH at 8:30, only for us to have to wake her up at 10:30 ready for her 11:15 appointment.
She was miserable, I ended up having to hide because all she wanted to do was sit on my lap and sleep. Two hours later and we all decided enough was enough and we went home.
They we’re completely unable to do any of the checks they’re supposed to do, so she couldn’t be scored developmentally wise.
Despite all that, they still offered us some great advice for her sleeping, and with stopping Piper breastfeeding, and they’re going to do all the checks again in 6 months time.
In October we went away with the Guide Dogs to Windermere in the Lake District.
It was the nicest weekend away ever!
We stayed in a lovely hotel which fully caters for people with visual impairments and guide dogs, there was Braille everywhere ☺️ and it was set in the most beautiful location! If you haven’t been to the Lake District yet, go! It’s stunning!
They held workshops throughout the 3 days, not only for Piper, but also support groups for us parents too, activities for all the other children and we left with lots of info for when it comes to the time we think about schools for Piper. (Nope, can’t deal with this thought)
All the children thoroughly enjoyed their time there, the Beatrix potter museum was also down the road so we checked that out on our way home.
(Bit creepy 🤣)
It was really enlightening being around so many children with visual impairments, especially seeing the older ones and how they manage day to day life.
Our friend Kazmin also came with her children and her sister Carly. It was just a lovely experience! None of us wanted to leave.
We can’t wait to go back again!
Also just to add, if anyone is struggling in any way with a visual impairment, whether it’s yourself, or someone you know, mentally or physically, or if you’re struggling coming to terms with a diagnosis call the guide dogs! They offer so much emotional support.
Our children always make us proud but our little Pea outdone herself recently.
Months and months ago Bella started ‘Braille club’ with a few of her friends during lunch time at school, then randomly a few weeks ago, she asked me if I think she would be allowed to teach her whole class Braille.
So that morning I went to her teacher, Miss Lauricourt, and explained what Bella wanted to do and why, and she said absolutely yes!
So that night we made everything ready for her ‘lesson’.
Pipers habilitation teacher, Lisa, gave Bella a few ‘crack the code’ Braille books and embossed loads of sheets of paper in Braille for the class to try to work out.
We found medication boxes with Braille on and stuck them to sheets of paper so her friends could feel them and made a large tactile Braille alphabet.
The next morning I emailed the headteacher to compliment Bellas teacher for allowing her to do this and he emailed back saying he had just taken her out of class, where Bella taught him and 5 more of the senior staff Braille, what a credit she is to us and that she would be teaching her class shortly.
We are so proud we could burst!
We also had an exciting visit from the BBC not long ago. They came over and filmed us for their new online educational videos – ‘BBC’s tiny, happy people’
Pipers videos, focussing on activities for VI/SEN children should be out in the new year.
I’m so excited to see them and will share them as soon as they’re available!
Our little superstar!
In a minute I also want to share this email I received.
I started writing and sharing my blog for three reasons.
1. My doctor advised me to write down everything we’re going through as a type of therapy. So we can always look back and see how far we’ve come – it works btw! I often read back on the first few months to remind myself of this. Especially on bad days!
2. To update everyone all at once on how Piper is doing, because it was too painful in the beginning to keep repeating myself,
And 3. To help anyone who might be going through similar.
My brother in law, Alex, told me after sharing it with the family that I should share this publicly for this reason. Thanks Alex, I’m glad I listened ☺️
We didn’t have anyone to turn to in the early days who completely understood what we was going through, so I shared this in the hopes it would reach someone just beginning their journey, who like us, felt lost.
Receiving it meant so much more than just the lovely words written. 💜
Last week I also had the exciting task of shaving my friend Kazmins hair off to raise money for The Great Ormond Street Charity!
Kazmins daughter, Gracie, also has SOD and is under GOSH.
So brave and she raised so much money for them 💜
She still looks beautiful!!
In the last blog I spoke about the article the GOSH charity have done on Piper, it still isn’t out yet, but I’ve been told it’s because they’re asking for extra funding to put behind it and they’re lining it up with a milestone in the new sight and sound department being built on Great Ormond Street.
I’ve had a read of the article that’s waiting to go to publish and it’s great. Hopefully soon it’ll be out for you all to see!
Little snippet of one of the pics in the article.
Pipers doing really well at the moment (apart from sleep obvs).
She’s copying so many words, a couple she even says with meaning, she’s getting more and more mobile, shes eating almost a good amount and she’s using her vision pretty well.
For the first time ever she actually seemed to be studying my face 😭
I can’t even describe how this felt.
She’s also under another new team – Portage, they will come round once a week to develop Pipers play skills and work on specific things we think Piper needs help with.
But most importantly, she’s happy!
Helen, her visual impairment teacher said she may have spotted something from a metre off recently….How amazing?!
And Lisa, her habilitation teacher managed to get Piper to voluntarily touch a variety of objects she would usually turn her nose up to!
(Piper and Lisa)
She’s still loving her sessions with Laurence, her musical therapist too. We’re due to see him tomorrow again 🙂
I know I usually end it there but I’m ending it with something so special.
We’ve had a few people lately who have wanted to do something to help with Pipers GoFundMe.
Earlier this year my sister Jo’s good friends got married – Lou and Elliot.
Instead of asking for gifts for their wedding they decided to ask for donations towards Pipers GoFundMe.
We would like to say the biggest congratulations and biggest thanks ever for the kindest most selfless act!
They raised over a massive £5,000
We are truly humbled and so emotional at their generosity, their kindness and their big hearts.
Karlee, my surrogate sister, has a little boy – Freddie, who is turning one this month. Instead of making party bags for his birthday party, Karlee, Ben and Freddie have decided to ditch the plastic and they’re donating to Pipers page instead!
And another one of my sisters (Angies) friends messaged me the other day after Kazmins head shave for GOSH, saying she too wants to shave off her hair and raise money for Pipers GoFundMe!!
I just cannot believe the bravery, thought and compassion you have all shown for Piper.
We could never thank you enough!
You’re all such special people!
Wishing you all a Merry Christmas and a healthy and happy new year 💗