Monday, 24 October 2016

10 things I’ve learnt since having a child with hip dysplasia

When Paige was diagnosed with hip dysplasia I could have never imagined the journey we were about to embark on.  It was so much harder than I could have ever thought and it has definitely been the biggest challenge in my life to date.  I have learnt so many things from this chapter of our lives.

Me and my cheeky monkey :)

1 - I’ve learnt that I am stronger than I think
There’s nothing like your child having a health condition to make you step up to the plate!  As parents we always have to be strong for our kids, and I had to be Paige’s rock when she was dealt this card dealing with hip dysplasia.  I made sure to constantly reassure her that she was going to be ok, that I would be by her side through it all and she would never have to be on her own.  Caring for a child in a hip spica cast is so incredibly exhausting but I just took it a day at a time and took help anytime it was offered.


2 - I’ve learnt that I can cope with sleep deprivation on an entirely new level
I’m no stranger to sleep deprivation, Jalen was a horrible sleeper as a baby and never slept through the night until he was 18 months old. (I’ve written about Jalen's sleep problems here as well as what we learnt at sleep school).  But sleep deprivation whist looking after a handicapped child and an active toddler was next level!  Whilst Paige was in her cast she would only sleep for 2-3 hours at a time before waking up being inconsolable.  The poor thing just couldn’t get comfortable, it must have been horrible being stuck in that damn thing for 7 weeks.  So she slept in our bed most of the time as she slept better knowing I was next to her whenever she woke up, and her comfort thing was having her foot rubbed, so by having her sleep in our bed I could rub her foot whilst being half asleep myself!  After a while I realised I couldn't sleep like that long term, so Brad and I took it in turns sleeping in our bed next to Paige and the other would sleep in Paige’s room so at least one of us could get some rest and be able to function each day!


3 - I’ve learnt that my marriage is stronger than ever
Having us all go through this journey had put so much strain on our marriage - functioning on little sleep, seeing Paige go through surgeries (not to mention the pain and confusion she had from everything), the challenges of caring for a child in a cast as well as a toddler, being home all day every day - it was a very stressful time that demanded so much from both Brad and I.  Things got very hectic for a while there but we chatted a lot and worked through how we were feeling and how we could help each other out so in turn we could be in the best position to be able to support Paige.  I know for sure that I could not have done this without Brad, without him I would be completely broken, hip dysplasia has taught me that we can get through anything together.


4 - I’ve learnt that there are so many kind people in this world
After Paige’s surgery when she was in the hip spica cast so many of our friends and family reached out to us, cooked us meals and sent care packages for Paige to keep her occupied.  She was spoilt rotten with lots of crafts, toys and activities to keep her busy whilst in her cast.  It was overwhelming just how many people thought of us and wanted to help in any way possible and I am so thankful for that.  Going through hip dysplasia (something we’d never heard of before Paige was diagnosed) was at times very isolating as no one else could really understand what we were going through, so all those acts of kindness meant so much to us.  And Paige thought it was the best thing ever receiving all these gifts when it wasn't even her birthday!


5 - I’ve learnt there is lots of support online
When we first found out Paige had hip dysplasia, our surgeon told us of some websites and Facebook groups, so I checked them out and joined the online groups.  The support the parents in these groups has given me was a massive help, it was so comforting to talk to other parents who were going through similar situations to us.  I got loads of advice and tips on how to prepare for surgery, recovery etc, and it was really nice to see photos of other kids with massive smiles on their faces as they went through treatment for hip dysplasia, it didn’t seem to bother them too much!  And it was also super comforting to see kids come out the other side of their treatment - walking, climbing, running and playing like normal kids, it was nice to know that there was an end in sight at a time when things seemed never ending.  If you ever find yourself in a position where you or someone you know has a seemingly rare health condition I’d encourage you to look online at the Facebook groups as I’m sure there would be a support group out there for you.  It’s a life saver to be able to talk to people that know just what you’re going through.


6 - I’ve learnt that kids are so resilient
I cannot believe how well Paige handled her treatment for hip dysplasia, she is so incredibly tough and took everything in her stride.  She survived 7 weeks in a hip spica cast and 12 weeks in a rhino brace, she was unable to walk and was forced to sit still almost that entire time.  She developed a good attention span during that time, and her favourite activities were playing shopkins, painting, colouring in, crafts, watching movies and playing the iPad.  She was happy as long as she had an activity to do and I made sure I mixed things up a bit for her so she didn't get bored too easily.


7 - I’ve learnt Paige and Jalen’s bond is a strong one
At first it was a bit of a shock for Jalen seeing Paige in her cast but he soon adapted to the idea of her not being able to walk around and play with him like she used to.  He became a great helper for Paige, if she dropped a toy and couldn't reach it he would pick it up for her and say “here you go Paigey”, and she’d say “thanks mate”.  If she needed a drink he would get it from the kitchen for her, if she was upset he would ask her if she was ok, he would help her in any way he could and it was so nice as a parent to see my kids getting along like that.


8 - I’ve learnt anxiety is a horrible thing to go through 
During Paige’s hip dysplasia I got into a real bad rut and developed horrible anxiety.  I barely left the house (not even to get groceries - thank gosh for click and collect!) and when I did go out I couldn’t concentrate and just wanted to be back in the comfort of my own home.  I felt nervous and jittery, with no real reason why.  I would take Jalen out on my own to give us both some time away from home but then felt this pull to be back at home with Paige.  I would think how on earth did I used to get out and about without feeling like this?  It was a tough time for me personally and my anxiety still pops up at times but it has dropped off considerably since Paige has been out of her cast and brace.


9 - I’ve learnt family support is amazing
When we went through all this both Brad’s Mum and my Mum really stepped up their support to us.  They took Jalen for sleepovers when Paige had her surgeries and when we were struggling with lack of sleep at home, took Jalen for outings so he was at least getting some normality in his life, coming over and helping with the dishes, washing and entertaining the kids so Brad and I could switch off for a bit, or just head out for a coffee and breath for a moment.  I honestly don’t know how some people get by without support from their families as this was one of the things that helped to keep me going.


10 - I’ve learnt hip dysplasia is a b*tch and so it late diagnosis!
If we had known about hip dysplasia earlier with Paige we might have been able to pick up on the signs and get her looked at sooner.  She pretty much had “the works” in regards to hip dysplasia treatment - pelvic osteotomy, open reduction and hip spica cast - and we have been so incredibly lucky that her treatment has shown excellent results.  Hopefully she won’t need any more surgeries later in life, some other children have not been this lucky.  
Please familiarise yourself with the symptoms (see www.hipdysplasia.org)  and if you have any concerns see your GP, the earlier hip dysplasia is detected the better the outcome for your child can be.  Late diagnosis is considered after a child is 1 year old, so when Paige was diagnosed at 3.5 years old it was a really late diagnosis.  Treatment at a younger age is less invasive and can have better results.


I could go on all day about the things that I have learned by having a child with hip dysplasia!  I feel like it’s changed me as a person, during Paige’s treatment I felt it changed me for the worse but now we’ve overcome the challenge I know I am a stronger person, but most of all Paige now has healthy hips, she is much stronger and will be more resilient to other challenges life throws at her because of it.  So take that hip dysplasia!!