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Little Faith Cooper needs her mum and dad

  • 30/03

      30 March 2018
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    A little Faith update from Christal

    ....and it's all good news!

    We can finally say faith is a meningitis survivor ❤️❤️

    Yesterday we had a successful MRI with no sedation and the results where great.

    The MRI showed drastic improvements in the frontal and temporal lobes,with a lot of the matter from the first MRI completely gone.

    There are still signs that she had meningitis but at this early stage it's still to be expected.

    The doctors are extremely happy with what they have seen 😊

    She also got her picc line out yesterday which was so exciting because I've been terrified of getting it caught on something or faith pulling at it,but it was well worth having a picc and not having to do cannula's every few days.

    As this journey for her ends another one is just beginning really,this year will be filled with appointments,her first being next week for physiotherapy and her hearing in the first week of May followed up by her first assessment from her paediatrician.

    But the most important thing of all is we get to just let her get on with living her baby life now,full of fun laughter and happiness.

    Thank you again to everyone that has helped in any way shape or form,has sent kind messages and just been there for us in general,I could never put into words just how much all of it has meant to us xx

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  • 23/03/18

      23 March 2018
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    update from Christal

    A little Faith update.

    So we get to bring this little cherub home tomorrow! 😀😍😀

    Tomorrow at 10 am will be her last of 21 days of antibiotics,and I'm feeling ecstatic lol

    Today we tried twice to get her into the MRI but she just wouldn't settle so we had to leave it.

    So at this stage she will come back next Thursday and have mild sedation and hopefully we will have a successful MRI so we can avoid having to go back to lady cilento in Brisbane,her little body has already been through enough and we are trying to avoid having to put her under a general anaesthetic.

    So she will keep her picc line in until we get the results back in case there is anything sinister there that we have to deal with.

    But clinically doctors feel this would be highly unlikely as she has been doing so well.

    From tomorrow her anti seizure medication will be halved for the next 2 weeks and all going well she can come off of it altogether.

    I think I've mentioned before her hearing will be tested as an out patient,hopefully within the next 2 weeks before we come back to the hospital for an assessment on how she is going.

    Meningitis is a bastard of a thing and the more I learn about it the more I come to realise just how extremely lucky we are to walk away with our daughter,and she is relatively well,all things considered.

    Faith never presented with a rash which most people look for,as this is the most common sign of meningitis,so her symptoms could have easily passed for a bad tummy bug or the flu.

    Her temperature only spiked once the whole time she was unwell and she had only vomited for about 3 hours initially and that had also stopped.

    The only sign I had that she was extremely unwell was her bulging fontenelle,and this is something many people wouldn't have picked up on and if like me they had,wouldn't know how extremely dangerous it is.

    I for one didn't know that when it's bulging that it's at a life threatening stage.

    I feel as a parent it's not something we are really made aware of and it's significance to a baby's well being.

    But for now we are excited to be able to go home where she will be comfortable and familiar with her surroundings,be surrounded by family,and I'm sure we will see more progress in the coming weeks and months.

    I will still keep updating as new information comes along for everyone that is still following her journey

    Xx

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  • 16/03/18

      16 March 2018
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    A little faith update.

    So we are on day 13 of our 21 days of treatment and she has been improving very nicely!

    Each day we see a little more of the little girl we had before she became unwell.

    Faith seems to be hearing some things which is very hopeful! Not all the time but we are noticing she has started to follow some sounds but at other times she won't blink at a loud bang,but it seems she is not completely deaf 😊

    Faith has started physiotherapy and occupational therapy,both who are very happy with where she is at at the moment.

    We are going home for a few hours this coming Monday to spend some time with mitch for his birthday which is so exciting,the docs will lock her picc line and we can duck off between antibiotic times which is still every 4 hours and will stay this way for the rest of her treatment.

    Next week she will have her MRI to see the damage done to her frontal lobes and if it has improved and we will try to do it in toowoomba rather than send her back to Cilento where she would have to go under a general,fingers crossed!

    If there is little scars in the brain the amazing thing I've learned is we can teach her ways to retrain those brain pathways to by pass the scar tissue and still make connections to the important parts she needs.

    She still has her little heart murmur but it's still not a concern at this time and only measures at a 2/6,with 6/6 being very loud,doctors are still thinking it's just an innocent one.

    There's not to much more to report at the moment,it's more a waiting and watching game for now.

    Thank you to everyone who still checks in with us to make sure faith is going along ok xx

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  • 10-03-18

      10 March 2018
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    A little Faith update.

    It's been 1 week since our world turned upside down,our perfect happy princess became ill and she declined so rapidly in a short amount of time I could hardly believe it.

    What took only hours to destroy has taken a week of hard fighting just to get a small amount back,but if she can smile after a week imagine what she can achieve after 3.

    The night we flew to Brisbane I really thought we had a good chance of loosing her,I thought how could the world be as cruel as to give me this beautiful girl just to take her away from me.....this feeling I would never wish upon my worst enemy.

    But we are learning this girl is a fighter and is really beating some odds.

    She sleeps more than she's awake,and grizzles more often than not,but each day we get awesome moments where she smiles,talks to her toys and jack even got a small laugh out of her yesterday,and those moments create the best feelings in the world,they are the things we live for

    She does have a heart murmur which has formed since being unwell and she will have a ultrasound just to make sure it's an innocent one,she will start physiotherapy next week and we will just take each day as it comes 😊👑🌸🎀

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  • 08-03-18

      8 March 2018
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    A little Faith update from Christal

    So we are currently in an ambulance on our way back to toowoomba hospital,where hopefully all things going well we will stay for the next 3 weeks.

    Her neurologists are happy Enough with her that she can continue her care in toowoomba as we are closer to family there.

    She started an anti seizure medication on Tuesday night and thankfully hasn't had anymore since.

    She will continue the medication until her course of treatment finishes and then we will slowly wean her off,if she happens to have any more seizures we can increase the meds but doctors feel they came about as a result of the brain being irritated by the bacteria and inflammation.

    At the end of 3 weeks she will have another MRI to check for any brain scarring and a hearing test,currently she has no hearing but we are hoping as the inflammation comes down maybe it will return,and if not that is something we will deal with in the future.

    Over the last 24 hours I have definitely seen some small positive improvements and even got a small smile late last night 😍

    She isn't out the woods just yet but things are better today than they where yesterday.

    These photos are only 3 hours apart so you can see how quickly things can change for her.

    Last but definitely not least,thank you to everyone who continues to send well wishes,and everyone who has helped us no matter how big or small or in what way.

    Reading through everyone's messages lets us know that we aren't going through any of this alone and shows us how much our little girl is loved. Xoxoxo

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  • 07-08-18 latest news

      7 March 2018

    Faith had a quite night.

    questions about her hearing are yet to be answered...not sure if hearing loss is permanent or due to fluid build up.

    she will be transfered back to toowoomba later today to continue her treatment.

    she will be on ABs for the next 3 weeks for the meningitis.

    also on anti seizure meds twice a day til ABs finished.

    the future for Faith is still unsure but we are taking each day as a blessing

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  • 06-03-18 update from christal

      6 March 2018

    A little update about Faith.

    As we all know faith was admitted to hospital on sat in toowoomba and we discovered she had contracted strep b bacterial meningitis and sepsis,sadly yesterday we found the start of an infection in a chest X-ray and she also suffered a seizure.

    She was given an MRI and we now know she has Encephalitis (big doctor words)

    It means she not only has swelling to the lining of the brain but swelling in the brain itself which has led to some sections being deprived of blood.

    We don't know what this means for her yet other than shit just got a whole lot harder!

    It was decided lady cilento hospital in Brisbane was the best place for her so we made the trip down in the early hours of this morning by plane.

    Since arriving she has suffered another seizure.

    She is going into surgery under general anaesthetic today to have a pic line inserted so we don't have to keep stabling her tiny veins for a cannula and she will meet the neurologist team today and most likely have an EEG.

    She is on the strongest antibiotics to try fight the infections everywhere and in turn reduce the inflammation in her brain.

    Positives are she is still breathing unassisted,still breast feeding when not to tired and is still responsive to touch,light etc

    All we can do now is love her and pray for the best outcome we could possible have.

    I feel she was named appropriately as we all need a little faith right now.

    Lastly thank you for everyone's well wishes and msgs,they really do mean a lot

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  • MRI results

      5 March 2018

    following the results of Faiths MRI scan it has been decided to fly her down to Brisbane to continue her treatment.

    please keep her in your thoughts and prayers as she continues to fight to stay with us x

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