We did have a worrying week this past week where it looked like we would be in for Hogmanay again. Robyn was so ill she had no energy and literally laid on the couch for several days in her jammies happy to just watch cartoons, eat, vomit then drift back off to sleep. But she has pulled through and all the while kept hydrated and a good colour to her skin so we didn't feel she needed the oxygen that usually puts us in the hospital. First time ever really she has managed being seriously unwell at home. Yay Robyn.
Its been a year of ups and downs for us a lot more hospital stays and operations than we would have liked but it also included Robyn getting rid of her feeding tubes, lots of sunny weather, trips to the Zoo, and to see Thomas as well as Robyn's momentous first birthday. We hope 2014 holds lots more of these moments for us.
Trying so hard to be positive for the next year as we have the possibility of another heart surgery looming over us. We also had some reading of a friends blog this week too. A Post I know she found very difficult to write. But in the same way I feel I need to know all the details to cope she felt she had to draw the facts together. Its definitely better to be aware of ALL the facts but it is still very hard hitting to truly consider the fact that your child's mortality rate is very high. For children with CHARGE who have a heart defect and choanal atresia, just like Robyn the mortality rate is 15 - 20% before 5 years. In plain English there is a 15-20% chance Robyn wont see her 5th birthday. That's a 1 in 5 chance. Its scary but like I said it helps to know the facts. If we know the risks and the things to look out for there is a greater chance that we can avoid it happening.
As a result I have just spent around £50 printing out documentation from the Sense website regarding various aspects of CHARGE. I will be handing care of Robyn over to specialist nursery workers and therapists in a few short weeks and need to know they know what they are doing. Some might call me paranoid but when you have been in the position of saying the name of your child's condition to a doctor only to be met with a blank look you would be paranoid too. Knowledge is Power and all that so if I have to give them the idiots guide in 56k colour to be sure they have that knowledge then so be it. Its only money after all.
This is a link to the information in case anyone is interested in learning more.
On the other side of life Tyler is also starting at a council nursery for 2 year olds in January. So 2 afternoons a week I can focus on just Robyn, and 2 full days a week while she is away I can focus on Tyler. The one on one time will be great for them both. And Me. I'm very good at the mummy guilt of not doing enough with each of them separately. Even though they both have very full schedules lol. You never know if I am very lucky maybe one of Tyler's afternoons will overlap with Robyn's and I might even get a few hours to myself. Wouldn't that just be awesome, even if very unlikely I can dream right?
Anyways this blog didn't turn out like I was expecting, sometimes I just let my hands do what they want on the keyboard and they don't really listen to what my head was telling them to write. I was planning to be all sentimental about it being Hogmanay etc but then I got side-tracked. The one part I definitely want to include is the part about how grateful we are that our journey brought us into the lives of so many new people we would never have met otherwise. Some wonderful kids and there very strong parents Finn (and Eilidh, we really would never have made it through Yorkhill without you, wish we lived closer), Ollie, Cameron, and Jonah to name a few. And some others we haven't met and might not ever meet either in our CHARGE community. My life is better for having you in it. If things hadn't gone 'wrong' we would never have met these awesome people. There are so many others that I couldn't possibly mention everyone but at the least need to squeeze in my sister Lindsey and her beautiful family, Jackie all the way out there in Japan, my oldest friend, and last but not least my hubby Greg. We have a beautiful family through the good times and the bad we stuck together and just look at the two wonderful babies we have to show for all that hard work. 13 years together tomorrow with many more to come.
AND a Happy New Year.