Hospital waiting rooms - a good source of books
I didn’t sleep last night.
I was too busy tossing and turning in bed, mulling over the various different things that could mean my toddler isn’t toddling. Why is it that things always seem so much worse in the dark?
Today’s hospital appointment – both dreaded and anticipated – wasn’t particularly pleasant. The X-ray which I was hoping to avoid did actually happen. The consultant examined Frog’s gorgeous hips and sent us straight to the room with the “special camera”.
It turns out, as much as Frog loves having her picture taken, she’s not so keen on the “special camera”.
In fact, she rather loathes it. As the light turned on she screamed “HOT HOT HOT” as her father and I pinned her to the bed, desperately singing The Wheels on the Bus in an attempt to stop her escaping the X-ray Monster. Pleasant is not a word I’d use to describe those 5 minutes.
But, once some raisins had been retrieved from the bottom of my bag, and Frog was safely out of sight from the “special camera” our spirits started to lift.
The consultant examined the X-ray and uttered the words I’d been hoping to hear for the last four months: There’s no serious issue with her hips. They’re not dislocated.
I could have cried with relief right there – black mascara running down my face – but I was too busy listening to the next bit.
But there is a problem. She will need treatment.
It turns out Frog is exceptionally gifted in the flexibility stakes. She could put any ballerina or gymnast to shame, apparently. The thing is, Frog’s flexibility is what is causing the mobility issues. In short, she’s too flexible to walk.
An examination from the doctor showed her feet turn almost all the way around, so that she could be facing forwards while her feet face backwards. Not something you need when you’re trying to negotiate the simple act of standing up without holding your mum’s hand.
Frog also has a clicky hip, caused by a dogdy ligament, caused by the flexibility issue. Her knees swivel around like some kind of fancy chair featured on the latest BBC talent show The Voice. Her body is a bit like a pipe cleaner, with no locking system to keep every joint in place, where it needs to be.
So, the bottom line is, although she’s approaching 2 years old, Frog is unlikely to walk any time soon. She needs special shoes with more support around the ankles (although where I get these is anyone’s guess) and she needs lots of physio treatment.
She also needs to go back to see the lovely consultant after her 2nd birthday to double-check there’s nothing more sinister behind her refusal to walk.
There are three months sitting between us and that first physio appointment.
I’m going to use that time wisely, to search for a special pair of shoes and a large supply of patience.
Thinking of you and your gorgeous girl, hoping you’ll get through this with mostly smiles. Sometimes when I’m early into something I know is going to try me, I remind myself that it’s something that will someday be just a memory.
What a lovely comment, thank you.
Hi there your story has been reassuring to me, a mum of a 22 month non toddler, hyper mobile too and born with one crocked foot x. I would love to hear how thing are going with frog now, my pickle sounds very similar. We are at the bum shuffle stage now, never tolerated tummy time, won’t crawl, won’t kneel, and irritated as she desperately would like to pull herself up, but isn’t strong enough in the arms to do it from her bum position, as she certainly isn’t going to use her knees. Therefore she would rather scream then do it.
You have given me hope, no one seems to understand the amount of pressure this condition places on you as a mum and your relationship.
Your response would be greatly received.
All the very best for the future,
Gina x
Hi Gina, there IS light at the end of the tunnel. I’ve just written an update on my daughter’s progress here which you might be interested in. She’s doing really well now. Stay strong – it does get easier!
Glad to hear it’s something that ‘they’ can help with – although daft you don’t get given all the info you need at diagnosis (familiar story though). good luck with getting the shoes sorted, and I’m sure you’ll treasure every hop (Frog, geddit?!
) and step she takes over the next few years x
Ha, great pun! x
Lots of hugs x It is so nice having some answers. Bless her x
I’m glad you are finally able to understand what is going on, and with that information you can make a plan. Best of luck with it all x
so pleased that you got some answers and I’m sure now the support.. in both shoes and doctors is going to be there, she’ll come on in leaps and bounds… it may be difficult ahead, but im certain you’ll get through it just fine
Ah, thank you Sarah. x
I’m glad that you’ve got an answer and that it wasn’t your worst fear. It does sound a difficult road ahead all the same. I echo Squeakymom though. Flexibility gives you great party tricks.
Here’s hoping. She can’t do the party tricks until she gets the walking sorted though!
still my beautiful frog x
Always x
An answer is something to work with. And being bendy is great fun, especially when it comes to grossing out boys! (most of my drunken party tricks involve being bendier than average, though as someone said above, it does make high heels tricky)
This is true!
I bet you are so relieved. I am so glad you got answers and a possible solution.
Bless her tho. Missy had an X ray at 3 when she broke her arm. She cried because she was in pain but she was older and able to understand she needed to be good to see it through and got stickers for her trouble but every time she moved it, it damned well hurt.
Hugs to you all.
Thanks Kate. All the messages and lovely tweets have meant so much today. x
I’m so pleased you now have some answers and I hope you find some perfect shoes. Hopefully good old Google will throw up some helpful suggestions
xx
I’ve had so much advice from Twitter, it’s unbelievable!
Yay for being able to give it a name! Glad you’ve got some helpful info now and can take some concrete steps forward (no pun intended).
I think it’s prob really good that this has been discovered & can be helped now. I went through a couple of years at uni of incredibly painful knees and random falling over in the street (not just when drunk…) and eventually found out that it was previously undiagnosed hyper mobility. Six months or so of physio got it sorted out with no problems since, so I hope F’s treatment is just as fast and easy.
Pour yourself a nice wee glass of wine tonight missus, bet it was not an easy day xxx
Hoorah for a glass of wine. Not an easy day at all. Roll on the Easter bank hols! x
Ahh kisses to the brave little frog! Xxx
Thanks Soph, will pass them on in the morning!
Glad you got answers Molly! My friends little boy has the same, wears pietro (?) boots that look exactly like normal shoes but are built up inside. However, her hospital refer her, she doesn’t have to pay for them????
Love S.A.M xx
This is what I’m hearing. Think I’ll have to make another trip to see GP. Thank you! x
at least you now have a plan of action, I do have some experience too with my first child. I also went to the doc’s about my 2nd child @ 18 months and the doc laughed his socks off without even seeing her saying she will walk! Well she did the very next month but I do wonder about these docs not advising sooner. You’ll find patience in abundance, comes with the territory xx
I guess it’s hard for doctors, as they have to distinguish between paranoid parents and the ones where there really is a problem. I can’t help but kick myself, as maybe if I’d been more pushy and she’d have been referred sooner, would have been spotted sooner. Mums can’t win!
Hey Molly, I’m glad you’ve got some answers at last. It’s quite sobering because I tend to be rather flip with my usualy advice that, ‘she/he will walk in his own time so stop worrying’. It goes to show that just sometimes there can be a problem. It sounds like you are all in good hands. H xxx
I’m glad you have some answers now Molly, and its not what you were dreading. Hugs xxx
Well, its good news of some sorts. Hypermobility support group will have some information I spoke to them yesterday as it looks like Erin is a bit bendy too. Yes ask for orthotics referral for shoes. Gotta dash but wanted to say something now, will be back later.
Glad that there were at least some things that you know now for definite. Bless her little flexible self X
Bless her, I guess this is sort of reassuring there’s a reason. You said yourself you could tell she was really trying to walk and wasn’t just lazy with it. At least there’s a course of treatment she can have and with fabulous parents like you she’ll get all the support she needs to get there x
The best thing is that now she will get that help and you can come to terms with the diagnosis. At least they are already talking about a positive plan, that’s a good albeit scary thing.
What about some kind of walking shoe/boot? We had some Timberland boots for my son at the same sort of age and they were very supportive. Not pretty but very cool.
The shoes you are looking for are pedro boots you want to go to your doctor and ask for a referral to Othotics where you get the pedro boots from. They do help my oldest son had feet that you could turn the other way 6 months of him wearing pedro boots and special insoles he started walking.
My 2 year old is disabled and they thought he would never walk, he has just taken his first steps. With a bit of help and letting them do things in their time they get there .
You just need time now to get your head around the latest news good luck xx
Ah, Pedro boots. Thank you! Off to look them up now. x
They are actually called piedro boots. My eldest son has mild cp and wore them when he was little until he was about seven. He didn’t walk properly until he was just about three. They were given to us on an ‘as & when ‘ basis via the physio. They are actually beautifully made, leather lined inside. Now he’s grown up (22) he still favours trainers/shoes that give him the extra ankle support – especially when he plays American Football
I’m sure this isn’t the news you wanted but like the others say, now u can start to deal with things better. Big hugs to you all XxX
aww bless her…..and you. At least you know now & I’m sure you will manage to root out the prettiest & best supportive shoes around
x
Ha – it’s all about the syle!
Glad you’ve got some answers, although I am sure that you will have a whole lot of new questions now. I’ve developed a mild form of hyper-flexibility in my right foot after numerous accidents and I promise you, you can live with it without too many restrictions – it’s just no heels for me
Blimey. No heels? How do you cope in a posh frock?! Seriously though, thank you. It’s good to hear from people with some experience of it.
I hope everything goes well as you find some perfect shoes for her xx
Me too – she’s a bit obsessed with shoes. I’m sure she’ll be pleased to get some new ones!
Aw honey I’m so glad you’ve at least got some answers. Bet there’s a raft of advice online now you know what you’re dealing with. xx
Wading through it all now! x