As we had such a bad experience with our first pediatrician that gave Cayla the diagnose we really didn’t want to go back to her for further tests. I even rang and complained about the way we were treated and the way she spoke to us and hopefully she will change some of her ways of interacting with other clients and their families. Anyway, so I’ve been calling the Centre for Cerebral Palsy (TCCP) as I really just want Cayla to be taken on by them so we can get going with the therapy etc. A very nice lady, Corrine Wray, who is working as a social worker at the centre took me under her wing and organised for us to come and meet with a pediatrician from PMH. This was her last appointment at the centre so I had to quickly rearrange a physio session with Wize Therapy and get Mike to take some time off work. It all worked out fine and on the 14th April we met with Dr Kate Langdon. She is an amazing person that is definitely working in the right field, she could have given us ‘bad’ news and she still would have done it in such a way that it would have been totally fine anyway! Luckely for us this isn’t the case, yes, Cayla has got Cerebral palsy but very mild as it only affects her left foot. She is using her left hand very well. Kate observed Cayla whilst she was busy playing with all the toys in the room. Up until this day both myself and Mike had been feeling really down about the whole thing, we were scared and worried about the future so this was an amazing day for us. Kate pretty much said that Cayla was a normal social little 2-year old, she is busy playing and went from toy to toy and then back to the play kitchen which was the favourite. This type of playing is typical for her ago so no worries at all. She said that she has got a straight posture and using her left hand very well. She suggested that Botox would be very beneficial for Cayla, especially at a very early age so that foot could come right down on the floor and improve her gait. As there is about 1.5 years waiting list at Princess Margaret Children’s Hospital (PMH) she recommended us to do it privately instead. We will contact Dr Colin Whitewood at SJOG in due course.
I still remember walking out from the centre that day feeling extremely happy and positive about the future. Really, it could have ben SO much worse so hey, lets get on with it! I am so thankful to Corinne for listening to me crying for help on the phone and organising this appointment to see Dr Kate Langdon. I’m extremely happy to have met with Kate today and I’m looking forward catching up with her in a couple of months time :)
Ok, here we go..
Cayla was born in March 2009 in week 39 and both pregnancy and labour was without any problems. The labour was fast, only 1.5 hours from the first contraction until she was out! The first few months were ok except that she was screaming a lot and had silent reflux, she also only slept 4 x 40 minutes a day so no time for any ‘mummy naps’. After nearly ten months of no sleep at night time it all settled and with medication for reflux and visits to the chiropractor Cayla slept through the night – yay!
Cayla started crawling just before she turned one and cruising along furnitures shortly after so we thought that she was going to start walking fairly soon. However when she was about 18 months I took her to our GP (general practitioner) as her left foot just didn’t look right and she was still not walking. The doctor didn’t say much but sent a referral to an orthopaedic specialist who told us that she had Metatarsus varus (club foot) and it should sort itself out in time and with some light stretches. However, a few months later when Cayla was about 23 months we had an appointment with another orthopaedic specialist in regards to some sort of brace or splint for her foot. This lady took one look at Cayla, squeezed her foot a bit and told us that she was pretty sure that Cayla had Cerebral palsy. We were shocked to hear that and I was crying my eyes out in the cafe next door afterwards…. We knew very little about Cerebral palsy and what it really meant, we were terrified of what the future would hold for us and little Cayla. All sorts of thoughts went through my mind… is she going to be mentally disabled as well as physically? Will she go to school, will she talk, walk….. it was just horrible….
The following day we managed to get an appointment with a pediatrician with experience in this field and we were still hoping that this pediatrician would send us home as there was nothing ‘wrong’ with our little girl. Unfortunately this wasn’t the case… she also gave us the diagnosis of Cerebral palsy, left hemiplegia which means the left side of her body.
We were asked tonnes of questions about Cayla and some of them were really weird and uncomfortable for us. We answered ‘no’ to most of her questions. After that it was time for her to examine Cayla and she approached in a really odd way, like Cayla had severe autism and would run away any second or I’m not quite sure.. The lady tried to take Cayla’s box of sultanas away from her and also tried to remove her favourite Dora crocs to have a look at her feet…! Not a great idea and Cayla was not impressed. After a while and with some help from us she did what she had to do with Cayla but without saying a word to us during this time. She measured her head, checked her reflexes, compared the strength in her left versus the right arm/hand and so on. Then she sat down in her chair, made some notes and slowly turned around towards us… and with her hands in her lap, she looked down and with her tiny horrible annoying voice she said – yeees, there is something not quite right….
I will never forget the feeling I had in my chest when she said those words….. I felt so angry with her…… Thousands of thoughts running through my head, what did she mean about ‘that something wasn’t quite right’? Explain yourself you stupid doctor my mind shouted inside my head…! Unfortunately this doctor couldn’t answer any of our questions and even though she could see that we were in shock and knew absolutely nothing about cerebral palsy ( I was in tears and my husband asked lots of questions in regards to Cayla’s future and so on). I know that it must be difficult for anyone to say what will happen in the future but I think it would have been great if we were at least presented with some sort of information about Cerebral palsy. But no, nothing… but she did say that Cayla was like a 1-year old (she was nearly 2 years old), that was a hard one to swallow. She also spoke a lot about carer’s allowance, MRI scan on Cayla’s brain, Medicare rebates and so on.. Whatever… I think I just blocked out what she said after a while.. There was just no way I would let anyone do a brain scan on my beautiful daughter… I just didn’t care about the organic reason for the cause of her cp.
So what happened next, well, we hid away in our house for five days and just cried and spent the whole time kissing and hugging our kids. All these questions.. how could we have missed that there was something ‘not quite right’ as the pediatrician nicely put it after her short consultation a couple of days earlier. What is going to happen in the future..??? Maybe I didn’t spend enough time playing with Cayla as I did with her brother, maybe I should have bought more educational toys for her, all these questions and I was totally blaming myself….. A mother’s guilt……..
So here I find myself again, writing on a blog. Last time I started a blog was in 2006 after the birth of my son. We (my husband and I) were living in Kentish Town, London back then and I thought it would be a great way of keeping our families in both Sweden and Australia in the loop with stories and photos of our new little member of the family. That blog was called The Beach Family. Anyway, not sure what happened but I probably just got busy with life as a stay-home-mum and all the activities that comes with it ;) I was lucky to have met the best people in the world that year – a group of Swedish mums. We spent most of the time together doing all sorts of fun things like having lunch at pizza express at Oxford Circus surrouned by posh business people, meeting for play dates in super cramped old Victorian houses, or just hanging out in some of the gorgeous local parks of North London. I miss them heaps.
We moved to Perth, Australia in September 2007 and this is what we now call our home. It’s warm, sunny, chilled out and I love it! Yes, I miss my family back in Sweden more than anything and I would love to see them more often. I miss the Swedish nature and that the sun doesn’t set until late in the evening in Summer. I also miss Swedish pizza…… it is just the best, no questions asked! With bearnesas – yummy!
Anyway, here I am writing on my new blog. The reason for starting a blog this time is completely different… In February 2011 our daughter Cayla was diagnosed with Cerebral palsy (left hemiplegia). I feel a need to write about it and hopefully clear my head a bit whilst doing so and also to share our story with other in similar situations and finally provide information about Cerebral palsy and hopefully clear some of the misconceptions that comes with it.