Thursday, February 20, 2014

A Desperate Trip...

I'm sitting here this morning, with Lyla, doing our usual routine before we start our day, which involves watching ABC4KIDS while having 'our' morning coffee... Nothing exciting, but I like to start our day quietly and relaxing-ly (that's definitely a word).  Today is the day after yesterday, and yesterday was the day we had our worst fears reconfirmed, it was an emotionally draining day. 


A little while ago a very good friend of mine told me about a lady and her son, she saw on one of those morning TV shows.  This mum was on the show talking about her son, who had some major health issues (one being scoliosis) and she was doing all she could to help him, while studying to become a doctor and medical researcher, and she was currently doing her Masters of Science in scoliosis.  Straight away I found her on Facebook and told her about Lyla, and then just as quick, she got back to me with all this information and all these contacts.  With her help, we were trying to book some last minute appointments to see 2 of the best orthopaedic specialists, one in Sydney and one in Melbourne. 

Two weeks ago she messaged me to say we managed to get an appointment with the Melbourne specialist.  I was so excited, we were finally going to get a second opinion and we were finally going to see someone who could fix her, just what we needed after the stuff around with Lyla's scheduled casting, and just in time because the week later at Lyla's normal orthopaedic appointment, her specialist said he no longer knows what to do for Lyla.

Two days ago myself, my mum and Daniel's mum went to Melbourne, the big appointment was the following day, so in the meantime we walked around Melbourne and caught up with friends and family for dinner and breakfast.  Yesterday we caught the tram to the specialist's office; we were only able to get a half hour appointment, but that was better than nothing, or waiting a few months to get a longer one.  He was a lovely guy, we talked a bit about Lyla's condition and he had a quick look over her, then we sat there, in silence, but his face said it all... Dan's mum broke the silence and asked 'Do you have the miracle cure?', he looked at us and said 'No'.  He went on to explain every treatment that is available to help treat scoliosis, and a million reasons why every single one of those will not help Lyla, why they would do more harm than good.  She is too small, she is too weak, she has no diagnosis, she has no prognosis, her hips are dislocated, her back is too severe, she has respiratory problems... The list went on, and on.  Her body is broken and there is nothing that can be done to fix it.  I made it through he first 20 minutes before it broke me.  As parents we do everything we can to help our children, and that's what we've done, but to be told again that there is no safe alternative to help save your child's life is too much for anyone, no matter how many times you've heard it, and we've heard it a few.  Our only option is to continue going on with our lives and giving Lyla the best one possible.  

I knew this was going to be the case, but I didn't want to focus on that, I wanted the miracle cure.  I didn't want her tiny body to be too broken to fix.  After everything she has gone through and everyone she has proved wrong, I don't want this to be it.  But every day, every month her back will continue to curve.  Every degree decreases her lung function even more.  Every degree causes more heart problems.  How far can it go?  How long will it take?  Is she going to suffer?

As heartbreaking as the appointment was, I am very glad we went.  He said if he had the miracle, he would fix Lyla.  But if he can't help us in the way we hoped, he is going to help us in other ways.  He is going to contact neurologists to look at Lyla's brain scans to help us find a diagnosis.  After the appointment we walked to Melbourne's Royal Children's Hospital, not usually somewhere I would choose to go to hang out, but that's where we went and it was beautiful.  We looked at the fish and sharks in the aquarium, we looked at the meerkats, and we had ice-cream, the specialists recommendation.  Then we went home, to where we will continue on with our lives, enjoying our daughter, giving her all the experiences she can have, doing all the things she loves to do, and never taking any day for granted.  Her fate may now be sealed, but her fight is not over.



  1. Omg :'( you are such a strong ad amazing mother it breaks my heart to think what you have to deal with everyday! I'm
    So glad that you are so positive I believe being strong willed for her is her best medicine xxx I applaud you for your strength!!! Xxx Hayls and I send all our love xxx we also follow Lyla's story on IG our account is @abbz_86 xxx

  2. You are such an is wonderful that you can keep so positive when facing such horrible times.i hope someday soon something will come to help your little heart goes out to your family.

  3. Hi Jess. Your news is devastating and I can only imagine how you must be feeling; all the physio and appointments to get this far - it must seem as if you're back to the beginning. On our news last night was the story of a six day old baby girl, savaged by the family pet and the parents giving thanks for the brief but lovely time they had her. Someone used the expression 'it's the quality of time you have and not the quantity'. Every parent wants both, but I'm left with the abiding memory of a much loved little girl paying back that love in happiness and joy every moment she's awake. I feel very priveleged to have met her, and she'll be forever in my prayers.

  4. Jess! You are absolutely incredible! I shed a few tears reading over this and it is so heart breaking knowing there is nothing they can do to help Lyla Poppy! She is so lucky to have such an amazing mum like you!!!