The blur that was 2019!!

Happy new year from a different kind of normal!!! 2019 seems to have gone by in a blur for us and our life seems to be lived in a constant whirlwind as we raise our two crazy boys!! Here’s a few highs, lows & memorable moments from the last year:

Our little Zac has kept in the best health he’s ever had over this year – we have now managed our record of a full year with zero hospital admissions!! This is a miracle for us and although there have been a few periods of illness and worry, we have managed Zac’s care at home without the need for additional breathing support. Zac continues to receive his miracle medicine and we are seeing him gain strength as a result of his treatment and his daily physio exercises. He even took part in a few news reports about his medicine!! Zac manages nursery 5 mornings a week and is making great progress. He is included in every aspect of nursery and this year has enjoyed sports day, teddy bears picnic and a trip to the library. We have also welcomed “chas at home” into our house which gives us a little break every few months. Zac always gets up to lots of fun activities with his “chas ladies” and is well looked after while me & Craig can have a meal out or spend time with Caleb. 2019 saw Zac’s “make a wish” granted where he received a spa pool to do hydrotherapy at home. With the support of our amazing family & friends we were able to build a superhero hut to house his pool & build a changing area too. Over this next year we are planning to build a wet room and install a lift in our home so that all Zac’s care needs will be met. 2020 also looks to be the beginning of some discussions around spinal surgery for Zac – unfortunately, as Zac grows his spinal curve seems to be getting larger and altho we do all we can to prevent this it seems that surgery may be inevitable. Early in the new year, Zac will attend some clinics where his medical team will do various tests & assessments and some difficult discussions will be had. Zac faces challenges daily but he continues to do so with an incredible sense of humour, a smile on his face & a brilliant attitude!! Couldn’t be more proud of the little guy he is.

2019 saw us receive an official autism diagnosis for Caleb and again it was a long process with many months of meetings, assessments and appointments. Caleb has coped with many different situations over the year and he continues to amaze us with his academic ability, the quirky way he sees things and his insight into the different way his mind works. I took part in an autism course and it proved very beneficial in helping us understand certain things Caleb goes thru in every day life. We have learned to chose our battles this year and have some strategies that work for Caleb. He is learning to adapt and cope with a lot altho meltdowns are still a common occurrence in our house. For a few months this year, Caleb was part of a sibling support scheme ran by chas. He had a volunteer who would spend some time with him each week doing all the activities that he loved – this was amazing for Caleb and he loved having “his grown up” that was just there for him!! Caleb has celebrated many achievements at school during 2019 and also helped build Zac’s superhero hut. He continues to be his quirky self and is completely bonkers – couldn’t be more proud of the boy he is.

In May of 2019 me & Craig celebrated 11 years of marriage – we continue to work as a team through it all and our two boys have definitely made us stronger. I stay home with the boys while Craig works full time – we are very blessed to be able to work like this. As a family this year we’ve had a summer holiday, movie nights, trips to the park, days out, walks, weekend breaks at Rachel house, we’ve spent time as a family and made memories.

We are so thankful to everyone who supports us and follows our journey. We wish you all lots of happiness for 2020!! Xxx

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