Hi everyone,
Ds2 aged 2.5yrs is getting admitted to alderhey 2morrow for an operation. He has had chronic diahoreah since oct and ahs gone from 31lb to 24lb since Dec. Docs were worried and brought his appt forward from march to last week, and they decided to admit him to do an endoscopy, and exploratory surgery of the bowel and intestines, taking biopsies from both. He is also having his gastrostomy tube changed to a mickey button at the same time. His seizures have increased again lately and he has had to have rescue meds a few times a day for the last three days. He had about 60ish seizures today, (we stopped counting then). We have made a big decision though, we are not going to give him anymore meds for his epilepsy, at last count he had had about 12 different ones since he was born and none of them have worked and most have had pretty horrific side effects. We have excepted that he has a short life expectancy and we now want him off all meds and just to make him as comfortable as possible at home and give him the happiest life we can. we have afew holidays planned abroad this year and we are going to show him as much of the world as possible (hes reg blind but he does have some sight). Sorry going off topic there, anyway we are in hosp for about 5 days and could do with some prayers if anyone has any going spare. I will let you all know how he gets on.