Just a quick note

Good morning, lovely readers, I wanted to avoid doing another one of these updates, however, this one is unavoidable. Ezra was discharged from hospital yesterday (prematurely in my opinion) so I have an extremely busy weekend ahead. I’m not sure if I’ll be able to get anything written until we are settled because we are facing massive changes to our lives. Having said that, Ezra does have lengthy periods when he sleeps (he is a baby!) and I will try to take advantage of those opportunities as soon as we’ve properly moved in. It really is like we are moving into our own house! Also, don’t judge me if I surprise you and get something written sooner than you think because I might have one or two boring sleepless nights!

The back half of our living room is basically a hospital room with Ezra’s bed, feeding equipment, ketogenic food supplies and medications. We are even getting a sharps bin delivered ffs. We are effectively Ezra’s doctors as he will require 24/7 care. We are trained to watch for and record all seizure activity, deliver multiple medications, and feed Ezra through a tube with strict timings and quantities. We have to be ready to deliver rescue medication at all times.

On top of this, we have other children, including an extremely hyperactive three-year-old, who have to acclimatise to our new way of living. Life as we knew it is basically over. Even getting out of the house as a family will be extremely challenging and we will not be able to go out for sustained periods. The help available to us is limited, but I wouldn’t trust anyone with Ezra anyway.

Ezra seems mostly fine in himself, but he does not seem happy about his switch to a keto diet. However, we have no choice because this gives him the best possible chance (medication alone cannot provide full seizure control).

The plus point of this (I’ll take any positive I can) is that it should get us into a rigid routine and might ironically make me more productive. Just give me until Monday or Tuesday to get this all figured out. In the meantime, try to stay happy and focus on the positive things in life. That’s what I’m doing.

I greatly appreciate your love and support x