no homeschools, only hospitals

Asalaamu alikum,
Okay so as you may have noticed, there have not been too many posts involving my sons hs. The reason for this is all of the time we have been spending at the hospital with my dd who has beckwith-weidemann syndrome. Macroglossia is part of this syndrome and so her tongue blocks her airway and she has a tracheostomy. Long story short, we just arrived home from seeing her surgeon and ENT and her surgery for a tongue reduction is booked for January inshaAllah. At that time, a different ENT will come in and place tubes in her ears as she currently has full conductive hearing loss alhamdulillah. Please make duaa for her. InshaAllah my mother will be coming to help us. Ds doesnt mind the hospital so much as they have playrooms and he always has soo much to keep him busy from crafts to nintendo and on and on alhamdulillah. He is as patient as a 4 year old boy could be mashaAllah, Allah has blessed us.

In other news, she has learned the sign for “more” and “no”….

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Filed under affliction, ajer, beckwith-weidemann syndrome, daughter, hearing loss, tongue reduction, tracheostomy

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