Yesterday was our monthly trip to Great Ormond Street Hospital in London for Miya’s clinic appointment.
Miya was hardly recognisable to some of the staff, who were astonished at how much she had grown since January, and how good she looked. The usual blood tests were run, along with an engraftment test and a CD4 Marker test (to gauge the production of T-Cells, a part of the immune system). Her bloods came back today (apart from the engraftment and CD4 Marker tests) and they were very good. She is doing so well, that the doctors don’t need to see her until April, at her 6 month post-transplant checks.
Miya has started saying some new words: up, bye, yay! (while clapping her hands) and she can climb stairs REALLY quickly. She tries to climb them one foot at a time, and holds on to our hands or the wall to accomplish this. She understands almost everything we say to her, and is very good at putting things back in their correct location (for example, she’ll put her chalk and crayons in the correct trays on her easel, and she’ll put her books and dolls back on her toy shelf). Her appetite has increased and she no longer requires feeds through her NG tube. We have learned to place the NG tube ourselves and the community nurse only comes to take Miya’s blood pressure, take bloods and do Hickman line maintenance.
At April’s appointment, our termination of semi-isolation will be determined as will the removal of the Hickman line.
