So far, this year has been anything but dull. Emily had her palate-closing op in February, and promptly came home from hospital with a cold... It felt like a lot longer, but once her 14 day healing period was up, we started her on 'normal' bottles - very exciting. She still has a small hole in her palate just behind the gap in her top jaw so she still can't suck on a bottle teat properly and I have had to cut the holes in the teats bigger so that she can drink enough without getting too frustrated or tired. It is very funny when she tries to hold her own bottle, pulls it out of her mouth, spills milk all over her face and then looks at me like I am mad, like it was all my fault...
Emily also had her first birthday party a week after her op, and she was spoilt rotten! A big thank you to all who make my darling one feel as loved and as special as she is!
On a completely different note, Emily's 'Miles for Smiles' cycling team rode the Argus this year, and needless to say (but I am going to say it anyway), Emily and I were endlessly proud of all who took part and rode for this amazing charity. Her Dad, Grandpa and Uncle Ronald all finished the race! These are the amazing things the people in Emily's life continually do to show her how loved and cherished she is and as a reminder that we are all so blessed to have this awe-inspiring child in our lives.
In June she had to have another set of grommets inserted as the first pair had already worked their way out and her ears were filling with fluid again. This will probably not be her last pair either as the muscles that control the 'valves' at the end of the tubes that drain into the back of her throat from her ear might take a while to learn what they need to do, and then do it properly - it all works with the palate muscle, so the fact that they don't work as they should makes sense.
We have also being going for neuro-physio to help the Bean to learn the correct way to sit, move and to teach her brain to talk to her body in the correct way. She is not a big fan (gets very angry and shouts at us the whole time), but her progress is amazing. We put the physio on hold just before her grommet op as we were worried that the fluid build up in her ears could be causing unnecessary discomfort during physio and our next class is this coming Wednesday - wish us luck for a less angry Bean!
We have also had to put Emily back on Losec as she still seems to be struggling with reflux, hopefully my darling child will catch a break soon.
We have also taken Emily to see a Paediatric Neurologist, because just about every medical person that saw her commented on the shape/size of her head - I cannot tell you the frustration and heart ache that finally lead us to this doctor, let me rather just say that we are glad we have found her. It was on her recommendation that we took Emily to the neuro physiotherapist and it is on her recommendation that we are taking Emily for an MRI on the 10th of August. While we now feel that Emily has a familial big head (that damned gene lottery), there are still too many unanswered questions that need answering while Emily is still young enough that should we need to (and, lets hold thumbs that we don't) we can act on now before it is too late. As she will be under anaesthetic for the MRI, they will also draw blood to do genetic screening and to check her thyroid function. My petite bebe still only weighs 7.5kg, so we need to get to the bottom of that too. So, lots in the month ahead, and I will blog all the results.
