Alfie’s Journey with L1CAM Syndrome | Other

Alfie’s Journey with L1CAM Syndrome

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18.01.2022 Talk about stress.. Our whole family has been hit with gastro and of course, Alfie’s been hit hard. Pediatrics are talking about admitting him for hydration management but this mumma gut tells me he will be ok without a cannula.... Let’s see if I can convince the doctor. Since giving him ondansetron he’s kept down 60ml.. Here’s hoping he can recover well, NDIS review on Tuesday and I’m trying to get all my stuff printed and ready to go nuts.

01.01.2022 He’s so bloody happy! Yet today we’ve faced reality that Alfie needs more surgery. I’m so glad he doesn’t understand doctors because this mumma is barely holding it together. Alfie has chronic sleep apnea and now we find out it looks likely it’s caused by adenoids, tonsils and laryngomalacia. ... This means we are trying to arrange BiPAP for the interim but Alfie will need a tonsillectomy and adenoidectomy as well as supraglottoplasty. They are looking at holding off the tonsillectomy and adenoidectomy until after he turns 2 because it’s really risky surgery for babies. The supraglottoplasty surgery will probably go ahead at some point early next year and at the same time they plan on adding grommets to reduce the fluid in his ears. Big day. Big news.

01.01.2022 Yesterday we found out the bad news that Alfie needs more surgery, upon landing in Rockhampton I had a message from Dan and Nikki at VizzTech Christmas Lights by VizzTech Electrical to say I’m thankful for this fundraiser would be an understatement.