Lows, highs and ready to plateau! 

It’s been 11 weeks since Reedy underwent extensive brain surgery and it has been a roller coaster of emotions and experiences. 

Nothing can prepare you for what life launches at you and the variable speed of emotions you might feel. 

11 weeks ago Reed was drug resistant and seizuring daily, we are not sure that we have seen any seizures since then, which is utterly amazing and kind of surreal. 

They are so great at bouncing back, I on the other hand have struggled to come to terms with it. Which may sound silly but as we come towards the 12 week mark the anxiety of seizures returning is getting greater, if I remember right the longest we have ever been is 12 weeks seizure free. Ever move, every virus, every fall, everything you think “it’s back”. 

There have been some tremendous highs over the last few weeks including Reedy learning at an astronomical rate… He knows where his tummy is, he knows how to sit on the step to put shoes on, he knows to go to the table if he is hungry! He has started to make some new noises, he dances all the time and the relationship between Annabelle and him is growing stronger and closer: 

We have also found out that Reedy and Annabelle are going to become big brother and sister to our much loved baby expected in June. Which is both amazing and scary at the same time, we are heading for genetic testing this afternoon to find out a bit more about Reedys condition and if there is any likelihood that it is genetic to help prepare ourselves for any eventuality when our precious baby arrives. We are almost 100% sure the cortical dysphasia was a one off, unrelated condition, through the genetic testing we will know for sure. 

We have also raised significant funds for Honeylands Childrens centre and received a great deal of support from Acorns day nursery.

The next milestone in Reeds revovery will be clarified at an appointment with the surgical team later this month. 

So all in all a number of lows and highs we are ready to end 2015 and start 2016 on a plateau with less drama and less loop the loops…. Here’s hoping. 😍💜😍💜


One thought on “Lows, highs and ready to plateau! 

  1. Gill Tippins

    Great to hear that 12 weeks seizure free has been reached and Reed has learned new skill. As you say every fall or whatever alarms you but be as positive as you can and most of all love and support each other. This is probably the most stressful period in your life and you need to have group hugs daily to sustain yourselves. Any time either of you need a coffee and a chat you are most welcome

    Liked by 1 person


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