I turned 4, I got a new bike and……

It’s been a number of months since I last posted and a number of things have been happening. Firstly, at the end of July, Orla celebrated her 4th birthday. Her birthday this year was marked with more excitement and celebration than previous years. Orla was unaware the day was in anyway special however for the first time in Orla’s 4 years, I felt I could genuinely celebrate her birthday without a shadow of sadness cast over me.

It was timely that the day prior to Orla’s birthday a bike that had been specially made for her was ready and collected. The bike was made by a fabulous organisation called Freedom wheels who adapt pushbikes for all people with special needs. The photo below of Orla on the bike was taken on a rare sunny day during Melbourne’s winter this year! Even though the past winter was extraordinary long and dreary, Orla has been remarkably well. Her ear clean out I described in my last blog served her extremely well throughout the winter and she fortunately didn’t have any ear infections. In fact, her hearing has continued to improve now her ears are clear and have remained free from fluid too. Orla’s hearing improvements are really pleasing however they have caused her distress at times when her aids remain amplified more than she requires. This impacts her mostly around children and babies as their voices and sounds are higher pitched and their nature can be more unpredictable. The fact Orla isn’t able to express that a noise is too loud for her other than through emotion also remains a big challenge.

In August, Orla had a MRI of her brain and spine, the results a reminder of how insidious A-Mann can be. The main reason for the MRI was to look at an area called the cerebrospinal junction which essentially connects the spine to the base of the skull. Orla had an MRI of this area prior to her BMT which showed some narrowing therefore it needed to be checked as there is risk it could be placing pressure on her spinal cord and causing some pressure build up in her brain. Following the MRI, we were referred to yet another specialist team, neurosurgery for review. The neurosurgeons informed us that the narrowing is slightly worse and hence it will need to be monitored by an MRI every couple of years or if Orla was to develop symptoms. The neurosurgeons are hopeful the narrowing will remain the same and Orla can escape the need for surgery.  Unfortunately, Orla’s brain MRI also didn’t reveal what you would expect of a 4 year old either. She has atrophy or shrinkage on her cerebellum, the area important for balance, coordination and speech. Also her pre BMT scan showed some what is known as myelination of her white matter but not as much as you would expect in a child of her age at the time. There is evidence that the white matter has grown further, which is good, but the metabolic doctors say there is no way of knowing if this is due to some enzyme getting in or it would have happened anyway. Whilst these results were upsetting initially, they do provide us and Orla’s extended team with information and consequently we are exploring adding in some additional therapy to Orla’s already busy routine, which now also includes horseriding for the disabled, to help her achieve her full potential.

Orla has been making some fantastic progress with her walking in the past few weeks and months. A few weeks ago, she walked into her kinder with her walking frame and almost received a standing ovation from both the staff and other children!! Unfortunately with all the excitement and need to concentrate to assist her while feeling somewhat emotional, I forgot to capture the moment in anyway other than my memory. So instead, there is a photo below of Orla out for a walk in her pram accompanied by the class Koala Kurboroo who was staying with us for the weekend.

And finally our other news is, in just a few weeks time, Orla will become a big sister!!

11 thoughts on “I turned 4, I got a new bike and……

  1. Felicity and Ed,
    Great news on Orla’s progress, and congratulations on the pending new addition to the family.
    Cheers, john

    John Forman
    125 Cuba St, Petone 5012
    New Zealand
    Home +64 4 566 7707
    Mobile +64 27 240 3377

  2. Lovely to see photos and see that Orla is making some progress. She looks happy! Our best wishes for her future We are so pleased about your new baby. Once again our best wishes. Love from Ros and Owen xx Sent from my iPhone


  3. Thanks Flick for the blog Good to see so much progress She looks great on her bike Looking forward to seeing you all at Christmas Best of luck over next few weeks Hope it all goes real well

  4. Thanks for your news and nice to see Orla looking great. Best wishes for you all and a big congrats on the impending new baby. Much love from the Kings

  5. Hi Flick, Ed, and Orla. Thanks Flick for the clear succinct update. It helps us understand in a little way what and how Orla is doing. The very best of luck with her future and she looks chic on her bike and the cake looks scrumptious. Huge love and hugs to the whole family. George and CArmel

  6. Hi Flick, Ed, and Orla. Thanks Flick for the clear succinct update. It helps us understand in a little way what and how Orla is doing. The very best of luck with her future and she looks chic on her bike and the cake looks scrumptious. Huge love and hugs to the whole family. George and CArmel. Sorry meant to say this got lost in a maze of Roscrrea People stuff that was pouring in each day. Apologies for late replyxxx

  7. Your honest, candid account of your parental / family experience Felicity Is noteworthy.
    You are an amazing & very strong person!

  8. Hi Felicity – I have just realized how long it is since your last blog and your wonderful news. Guess by now the new addition to the family has well and truly arrived – information please!!!!! Can’t believe that Orla is 4 already, time passes so quickly. She is looking great, a real credit to you and Ed. So happy for you all. Joyce

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