Friday, 4 May 2018

One Year On...

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The 4th May will always be a date I will remember. Not because of its Star Wars connection, but because it's the first anniversary of Zach's Cystic Fibrosis Diagnosis.

I can't believe it was a year ago today, we were sitting in a consultation room at Great Ormond Street hospital. Both my husband Jon and I were completely heartbroken, confused and a little bit in disbelief. The previous afternoon I had gotten a phone call by the lovely specialist nurse, whom we would become to know really well in months to come. Zach's heel prick test results had come through and he had suspected Cystic Fibrosis.

Everything from then on moved in slow motion, i was beside myself. I think I cried non stop for two weeks after. Angry at the world and questioning, why me? Why us? it's not fair. On top of that I couldn't help but think about my sons death, his funeral, life after Zach which caused me a lot of grief and stress. 

All of these feelings are completely normal. When we were told about Zach I remember the team telling us it will become easier and in a years time you will look back and think you're right. At the time I was thinking how can you say that? I'm going feel devisated for the rest of my life.

It's now 1 year on and I can honestly say they were right. Yes I still get a little teary every now and again but that's normal. Zach has just had his annual review and everything is perfect at the moment. He only needed stronger antibiotics three times in the past year, due to a bug growing on his lungs because he had a cold. But no hospital admintions, no crackling in his lungs and no mucus. 

We are very fortunate and extremely greatful that Zach is on the good end of the scale. Others have a much harder and difficult start to life, being in hospital for months after birth and constantly afterwards.

It has been a tough year learning about Cystic Fibrosis and giving Zach his medications twice a day and his creon micro with every meal so his body can deal with fats and proteins. 

Myself and my husband are doing our first fundraiser and fundraising for the CFtrust and trekking 65km in under 17 hours across the Peak District in July. If you would like to read more of our story and or sponsor us then you can do so here - https://www.justgiving.com/fundraising/jontomalin

I have more info on Cystic Fibrosis in my post here - http://bit.ly/2jpsWBQ

If you have any questions about CF or you know someone who would benefit from this post than please share and or message me.

Jenni x



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