Last week Sarah-Hope turned 6 months! Its been a wonderful to see Sarah-Hope develop over the last couple of months - she's pretty easy going, increasingly friendly and becoming a little chatterbox (she makes a great Darth Vader impersonation)!
Child development for a different body
Initially, when reading about the next developmental steps being "hand eye coordination and reaching out and grasping objects", we were a bit discouraged (!), but with the help of a physio we're keeping an open mind about Sarah-Hope using her feet for many activities that would usually be done by hands. For instance, she has a kicking mobile, and we're trying to introduce her to the piano by banging her feet on it (thank goodness my grandmother's not around to see it!). As for her hands, the aim is to help her develop the most functional grasp possible over time. This may mean hand surgery (consulting with a surgeon later this year about that) but in the meantime we massage her hands every day to keep them soft and open and she wears cute little gloves to keep her thumbs out of her palms. We deliberately put Sarah-Hope in front of a mirror (to help her see her hands as they are "next to" her face not in front of it), put objects into her hands and close her fingers over them to give her grasping experiences (see pic of her holding Rich's finger below). For the first few months she didn't seem to realise that she even had hands but we have noticed Sarah-Hope begin lick/suck the tip of her left index finger so she's definitely more aware of her hands now! And we feel so loved everytime she uses her feet to touch us.
Feeding tubes and platelet transfusions
Sarah-Hope's gaining weight nicely, doubling her birth weight in her first six months of life. She is still dependent on her feeding tube - this has now been switched to a "mic key button" which is like a valve on her tummy to which we now attach a tube for feeds. As she starts eating solids, the hope is that she'll consume more calories orally, but this will take time. We tried getting her going on solids early, but Sarah-Hope's mother has not been particularly successful at this, despite putting on elaborate entertainment shows for her daughter in the hope she'll open her mouth!
Platelet transfusions occur about every 12 days. We expect that to be the case for the first year of life at least, after which there may be improvement.
Next steps...
The next developmental steps, like sitting, will be interesting given that Sarah-Hope doesn't have arms to break her fall... and if she does, her low platelet count could mean some nasty bruising! She needs to have a very strong trunk for stability so we'll be making sure she does a lot of tummy exercises... This is going to be quite something - tiger mom in action! People often ask whether prostheses would be helpful, but it apparently people find it easier to adapt and use other parts of your body "more", instead of prostheses which just get in the way. Its going to be fascinating to see Sarah-Hope 'find her own way'. We had a great time meeting Nicky Abdinor this weekend. She's a psychologist who doesn't have arms but lives independently in Cape Town and drives an adapted vehicle (www.nickysdrive.com)... what an inspirational woman!
