This update has been long overdue!
Firstly, we would like to thank each and every person who has backed our campaign. We cannot begin to explain how thankful we are! Friends from near and far, as well as backers we don't know - making a difference in our beautiful little girl's life - how can we thank you for this investment in her future.
I am going to try to be brief, but admittedly not a strength of mine - so here goes. (For those who want a shorter version - we are well and Rynah is doing well under the circumstances. She is gaining weight, growing taller and coughing less. We had a short hospital stay again but all is well. Thanks for being part of #teamrynah).
For the long version - venture beyond this paragraph :)
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Rynah's Diagnosis was officially made on 8 March 2018. While it was tough and the initial shock was more than we could bear, we decided to look at the positive side of things. While this disease has a direct impact on quality of life and life expectancy, we decided to celebrate each day she is alive, rather than start a countdown to the end - because we are either "busy living, or busy dying" and the reality is a long life is not a given to any of us.
We also trust that God will guide us and her on this path and that He will use this to enhance our lives through the massive appreciation of each day (that we often take for granted). The meaning of "every breath I take in YOU Jesus" - just gained significant meaning and so we breathe in and out every day with gratefulness, with courage and with faith. There are no guarantees in life - that is the great equaliser - but the one thing we do know is that God loves this little angel more than we can so she is in Good Hands,
After the diagnosis life has changed significantly. We would be lying if we stated otherwise. While the nebuliser was an old familiar friend, the reality of doing treatments twice a day (and more when she is sick), every day, is quite daunting. The responsibility is probably (for me) the toughest challenge, not the actual treatments as such. Making sure she gets her treatments, followed by physio (percussion) and then some activities to make sure her lungs stay as clear as possible, takes up time yes. But we are blessed as a family that I have been working from home for quite some time, so I am at home to make sure she does get these treatments every day. Of course when she gets sick this intensifies, but we make it work. Yes, her being a toddler does not mean these treatments are easy - but such is life and all toddlers challenge their parents so we are no different here.
Rynah is also pancreatic insufficient - which is odd because she gained weight and grew relatively well despite this (we celebrate these little miracles). But in practice this means she needs to take enzymes with each meal - or with anything or everything she puts in her mouth. The enzymes are in the form of a capsule, with little granules inside. Because she cannot swallow capsules YET (we are working on this!), we mix the granules with apple purity or juice and she then has to swallow them before she eats. Once again - toddler dramas made this tough initially but with practice I believe we are getting there! She also gets extra vitamins (Zinplex immune booster, a multivitamin, vitamin D and E).
Since we got home from hospital in March, Rynah has gained just under 2kg (say about 1.75kg). She has also grown almost 2cm (they struggle to measure her accurately - she doesn't like that part!). This is great news for a little cf person as it means she is absorbing her nutrients and can build a healthy immune system. She also has no cough.
She was hospitalised early may for a short two and a half days when her cough was bad again, but this was due to contracting RSV (read up about this virus if you want). It is just that time of year and unfortunately it is very contagious - so even though we don't get out much with her - just going to the shops is a risk and we cannot lock her up in a bubble so we have to do our best and if she does get sick respond fast. She recovered miraculously fast in my (unprofessional) opinion! The 2nd hospital visit was not necessarily a bad thing. Of course the virus was bad for her lungs BUT she did not need intravenous IV (binneaarse drup) - so less trauma for her and hopefully a better association with hospitals (She cries whenever she sees anyone that could be any form of Doctor). It also made us realise that we need to be able to ask for help and be prepared for regular hospital trips. Similar to when you are pregnant and you have your bags packed in advance 'just in case' we have decided to have plans in place to ensure that we are better prepared. This - along with treatments and social life adjustments - has become our 'new normal' and it's ok. We will be ok - some days we may not feel like this is true - and other days we will know we will be fine.
What we have realised is that we cannot do it without a team of support. With your donation you have automatically become part of #TeamRynah, along with those who have brought us meals, shed tears with us, laughed with us and prayed with us. We have some ideas of future fundraising campaigns and we would love our team to share these initiatives with others so that we can raise awareness, fight for a CF cure and most importantly raise Rynah to have the quality of life she deserves.
God bless!
