Category Archive: Updates and monitoring

Anchor Me

My thoughts and this life have felt pretty wound up until recently. It’s been hard to know what to tell you and how. I’m not sure whether things are unfolding finally now, or… Continue reading

Come get it bae

Albie isn’t blind in one eye after all! BOOM. A total result. After getting some pretty dire news from Specsavers we were referred to a child ophthalmologist at the hospital. This specialist appointment finally… Continue reading

Speed bumps

Albie is growing into the finest of young boys. He is sharp and curious and funny. He says all sorts of wonderful things. I wish you could all spend some time with him.… Continue reading

Albie’s heart

I remember in the midst of when Albie was a baby, and he had his NG tube in, and his sweats, and his medications, and his physical therapy and his weigh-ins and his… Continue reading

Three years old.

Albie turned three at the end of February. We just had a low-key family weekend this year  – hung at the beach, attended a Soap Box Derby Day, met a giant teddy bear… Continue reading

More great things

Life is really, really sweet for us at the moment. Is it okay to crow for a little bit? Let me go back to Friday. We had a Starship Clinic on Friday. The… Continue reading

Red Rocks

I find myself dissatisfied with just about everything at the moment. The garden’s too wet and dark, the number of good winter jumpers I own is too few, the location of England too… Continue reading

The best Christmas present

Here he is. One healthy full-o-beans toddler. He has been super well for a while now, but we got the big tick from Starship last week, and boy does it feel good. He… Continue reading

Oh. Wow.

As of Saturday – for the first time in Albie’s life, he is entirely free of medications. Multiple plastic syringes have littered our daily life. Now he is done and dusted with the… Continue reading

The Comeback Kid

The surgeons met after the heart challenge that Albie had yesterday and discussed what to do next.  Like a muscle designed to lift weights, a heart does different things without blood flow than… Continue reading