Niamh is still doing well. She is in fact getting a little more adventurous and more rebellious each day which is great but scary!
She continues to take a few steps unaided every day but lacks the confidence to keep going. There are still a few more things she needs to (re)master: sitting from standing position, coming off the sofa, standing up from sitting. She is practising them all but she is still not strong enough to do them on her own. At the moment when she wants to sit, she bends her knees and hope for a soft landing which is luckily usually the case (our knees).
Niamh has been sleeping better, despite waking up very early, usually around 5.30am, this morning it was 3.30am. Rude!
Her communication is gradually improving. Emilie is helping a lot with this. The speech and language therapist has also noticed how much more Niamh talks when Emilie is with her. She will now come and see Niamh once Emilie is home from school.
Niamh's skin is looking better this week. Her neck is still dry, but a lot less red. The rest of her head is a little dry but not red. Her face is normal, no more red eyes. She looks a lot better than she did a couple of weeks ago.
Niamh is weighed every Monday. When she started 6 weeks ago she was 15.6kg, yesterday she was 15.1kg.
Niamh's blood counts today were disappointing:
HB: 10.8 (ok).
WCC: 1.7 (down).
Platelets: 48 (very down).
Neutrophils: 1.1 (low immune system again).
They usually transfuse platelets when they are under 50. The Consultant prefers to do another test on Thursday and see how they are then. She may need platelets and possibly blood later in the week.
So, so far so good, another week and two days to go.....
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