I sometimes worry that my blog posts are a bit like those sympathy-vote back stories they do for X-Factor contestants. Not least because I find myself thinking of words like ‘rollercoaster’ and ‘journey’. Inescapable really but do feel free to pick me up on any excessive superlatives as I continue to keep you all updated.
The last few weeks have brought both amazing development and further illness. Mojo picked up a very un-remarkable tummy bug which lead to very standard vomiting. The problem for us of course, is that when you spend your life obsessing about calories, weight gain and more importantly sodium levels even one day of sickness can cause serious problems. We did have to walk the tightrope of potential hospital admission for four days which was tough. Naturally as soon as she started to recover and we looked back, four days/nights really wasn’t long at all. I mean it’s nothing. Suddenly the twice daily calls to the (unendingly patient) complex care nurse are a bit embarrassing.
In her inimitable style Mojo has bounced back twice as strong, with a huge increase in her capacity for milk and while her appetite is still non-existant for food when she was weighed recently she has infact put on weight and now is almost on the centiles. It will be nice when her weight doesn’t have a < sign before it.
My favourite new development comes to us thanks to the portage and physio team who have been working on Mojo’s use of her hands. This has been really very effective and with plenty of practice her hands have found each other. That might sound strange if you don’t know how difficult she has found it to start using her hands and it’s a developmental step that I doubt parents of developmentally conventional children even notice but as with all milestones this is a big deal for us. Aside from the joy of the development it also has the added bonus of significant comedy value as I watch my very own teeny tiny Bond villain plotting her world domination from the high chair. The concentration on her face combined with the slow open and close of her hands around each other is amazingly funny. Ahh meester Bond I see you av brawt me my meelk.
Maybe you have to be there.
Finally three things have gone by recently which I drafted amazing blogs about and never finished (see aforementioned vomit week), International Women’s Day, Mothers Day and Holoprosencephaly awareness week. To summarise three half blogs worth of deep and meaningful musings. Mothers are amazing, my mother is especially amazing, being a mother is amazing, even more amazing when you are a mother to a child with HPE. HPE has brought some amazing women & mothers into my life most of whom I have never and will never meet as they live on the other side of the world however their support and the sincerity of their concern for us is vital to my sanity and I value it immensely.