So, I officially get the title for the world's worst updater of blogs. So much has been happening, and it would really be so much easier to keep track of if I were to keep updating as we went. Anyway, I will attempt to keep you up to speed, trying not to put you to sleep with blabbing on.
First, we'll get the yukkies out of the way. Keeley saw her Endocrinologist a few months back, and she suspects that she is going into early puberty. Say what? She is only 7 years old, and that is just a touch distressing for me to hear this. Breast tissue has already started to grow, along with unwanted hair. The plan for the moment is to monitor Keels for the next 4 months and see what pace it all progresses at. We'll think about the 'what now' if and when it gets to that stage, but basically she may need monthly injections to keep things at bay until she is an appropriate age for puberty.
The return of the dreaded (I almost can't type the word).....seizures..... GAH!!! So a few weeks ago, Keeley, just about out of nowhere, started to have seizures again, after almost 6 months without any. She went from zero to about 200 in just one night. This continued on for a number of days, despite doubling her current dose of medication and ended up with an admission to hospital. She has been started on Frisium, which is a benzodiazepine. Not a drug I ever wanted to see her on again, and one that hopefully she wont stay on. It seems to have helped calm the activity down a little, but she continues to have daily seizures, but now only a handful. Sometimes on this journey it is the little things that become distressing and heartbreaking. Like having to carry around rescue meds with me everywhere I go now. Ditching that little vial of Midazolam from my handbag was so liberating all of those years ago, and to have it back in there just plain sucks. These seizures have rocked her.....she is struggling with sitting up, her posture is very slouchy and she needs much more support. Her head is really lagging to the side, she is drooling alot, and she is finding it difficult to focus her eyes on things. Some days she is much better than others, with a spark in her eyes, others, she is obviously struggling. The medication is also contributing to that. An MRI has been scheduled for mid January, so we just have to wait and see what comes of it all.
On a brighter note, Keeley has been doing some awesome things over the past few months. She has started saying some new words, which is so cool. One of my favourite things she says now is "rock" , especially when she says "I rock" or "rock on"! Such a diva!! Some of her other new words are "up" and "down", "iPod", as well as family names, just about the entire alphabet, and her numbers from 1 to 10. Some of the things she says are hard to make out, for example instead of saying 5 she blows air out and makes a 'f' sound. But all in all, it is so wonderful how much progress she has made with this.
More good news is that a recent bone scan showed a huge improvement in her bone strength. Something that really excited me as it was getting to a stage where she may have needed intervention in the form of bisphosphonates. YUK!
We had a wonderful Christmas, and Keeley was particularly excited as she got all the things she asked for.......an iPad, books and a CD! We spent the day with family, eating to much and just being our crazy selves. Today we hit the beach as it was one of the first times we have seen the sun in what feels like forever. The town in which we used to live has flooded this week and we send our love and thoughts out to all of the families that have been affected by this. The town where Daniel stays and works has been evacuated today, so hopefully he will have a job to return to in the new year. We'll just have to wait and see.
So 2010 comes to an end tonight, and we start a new year in the morning, I will be sending some wishes and dreams up to the stars at midnight, in hope for wonderful things for my family and the ones I love in 2011.
"Here's to a bright New Year, and a fond farewell to the old; here's to the things that are yet to come, and the memories that we hold...." CHEERS!
HAPPY NEW YEAR!!
