15/06/2026
I am still here, working in the background๐ฉต
Weโre still fighting to get answer, waiting on test results and just working with what weโve got. I think sometime the unknown is the hardest part to get our head around. We know heโs got, โGlobal development delay with hypotoniaโ
โMild Laryngomalacia now after it being severe and needing surgeryโ
โFeeding difficultiesโ
โFailure to thrive requiring an NG Tubeโ
โCMPAโ
With the new round of genetics for SMA, Parder Willi, Myotonio Dystrophy as well as the full genome sequence๐ค๐ผ
Running a business, keeping ontop of appointments, medication, feeding times, Otis and his wild times weโre having at the moment with him being four๐ซฃ๐ฅฒ and then trying to take time for me has becoming a little hard. Iโve had to try and take a step back and remember Iโm only one person trying to do it all. Itโs okay to take time off, not reply to messages as quickly, priorities the baking side of things and not messages and posting things like I use too.
Some days are tougher than others, itโs all taking its toll on me, ive become the absent friend, dont really go anywhere unless my mum is with me (sheโs probably sick of my phone calls now๐คฃ) because it just takes so much, there is so much to remember, I then worry about the little thing, worry heโs going to pick something up and that will set us back, or worry Iโm going to forget something he really needs. This is slowly becoming the new normal for me. But itโs taken a lot, no mum is prepared to become a nurse/carer for their little ones if they need that extra support with things and I think because Iโve got Otis already, thatโs what Iโve found the hardest to adjust too. Even watching Otis help feeding Oakley, knowing what to do with things in an emergency, Is something I never expected my four year old to go through.
If youโre still here supporting my business, liking, commenting and sharing my posts! This still helps me get seen when I donโt post or share as much. Everyone Iโve met over the years, returning customers, new customers and customers that have become friends, and not forgetting business that have become friended , Iโm grateful to you all! So thankyouโฅ๏ธ
