Second Rutixmab Charlottes few days at home were mixed with incredible achievements, amazing happiness and elation to be all together but also very challenging, her speech has increased and she likes to repeat what you say, in a very quite small voice and can run off easy repetitions abc..., but is still unable to have her own individual thoughts. It was incredible to see her laugh for the first time with Abigail & Georgia. Her motor skills are improving and she seems to want to walk everywhere at a pace, she also thinks she can still jump off things (she has no sense of danger or balance ) which is frightening enough but also added to that she still has a huge central line in the side of her chest!!!! So eyes were needed in the back of our heads. She slept amazinging no bright lights of the hospital ward, incredible heat or beeping noises and other poorly upset children to disturb her. We went back to the Evelina last night which was hard, so she could have her second Rutixmab infusion today, a few hiccups this morning as they thought the line was blocked again, finally sorted and 4 hours later and two dvds and constant attention from Abigail today she got through it. Sooooooooo....... We were allowed to come home again tonight with a week worth of meds. The hard bit now is she is looking (well apart from her chipmonk cheeks due to the steriods) like Charlotte, but she has allot of mending to do in her brain, and mixed with no immune system for a year its going to be tough, so two more Rutixmab infusions to go and an op to take out her perma cath line, and then Its just TIME then that will heal and we have plenty of that. With lots of love K S A G & C xxxxxxxxxxx
Posted on: Mon, 29 Dec 2014 22:26:31 +0000
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