My Princess Danielle

holding a slice of bread holding a strawberry The last time that we place food into Danielle mouth was 5 years ago. While she was 5 to 7 months old, she had a taste of baby food. But every since then, food has never been in her mouth but mostly the suction catheter to suck out her secretion and phlegm. There a period of time, it create a fear in her that anythings went into her mouth mean will hurt her. She will bite the suction catheter everytime we try insert it into her mouth. Nowadays it doesn't happen anymore as she lose much of her jaw strength. But we do notice that she able to rise her chin that really require much strength to do it.

Just as we thought this year we will go through December without having Danielle to pay a visit to hospital - We were wrong. This was happen when my helper went for her 2 weeks home leave to celebrate Christmas with her family. There two admission in total and for the first admission was after a day my helper went for her homeleave. Thought to just to find out what went wrong with Danielle for sudden reduce in her diaper change no. from 4 to 6 change a day to 1 a day. This really made us worry and bring her to A&E for a quick check and not expecting for admitting her. She spend 2 night in the hospital to discover that she was seriously dehyated. After that a ew feeding regime was given to make up to the lost of fluid. She was back home in time to celebrate Christmas. But still not completely in her usual self through out the week. On the 29th Dec sat night, Danielle suddenly had a desat to 85% and we could not got the s...

There was a bit of delay in the morning for the schedule operation, it was shifted to afternoon 1pm and it was done by 3.30pm. This Danielle's new low profile GJ button replace her worn off high profile GJ button. As for trach area, the ENT doctor didn't find any unusual tissue growth inside her airway. Oh, Danielle lost one of her front teeth in this procedure, explain by the surgeon that her mouth wasn't able to open wide enough. Now she has no more front teeth- two front teeth lost on the last episode and this time one more. Anyway, she not using her teeth to chew food that how I came to the term.     

Yesterday, Danielle went through a Barium tests . This test allow us to know how serious her reflux and whether her fundopilation where she did it two year ago to treat her reflux has it loosen up. The test turn out well and through it we know her fundopilation is still intact. Hence, we need not have to consider to redo her fundo. The next step is to schedule to replace her existing PEG to a GJ tube . The insertation has to be done over a ENT or radiograpy procedure. It been shedule next week to carry out the replacement. Later of the day, the doctor actually gave us the green light to discharge Danielle to allow us to manage her at home. Next week we'll come back again to do the GJ tube insertion. It follow by another 2 to 3 day stay to monitor her feeding.

With recommendation from a mother, we are introduced to this art probe that look like a tooth brush. Danielle is enjoying herself, biting the art probe to ease the itch of her gum. Thanks Ying May!