Escape...

Today I got out... Ava came this afternoon and Dave sat with Heidi while we went out. Fresh air. I drank it in. I had one half hour walk when we were still at the local hospital... other than that, I have been hospital bound for 3 weeks now. It was bliss.

We walked down to Kensington gardens; my Mum, my mother- and father-in-law, Ava and I, and I just off-loaded. It was the first time I've really been able to get it all out of my system. What the Kawasaki's has done to our baby girl, the biology of it all, our hopes for her future, the prognosis, the rollercoaster of emotions, the ever-flying questions, the trust. All of it. It was so good just to walk and talk. Ava slept, Robert and Magni headed off for a coffee - and Mum and I walked further. Talking, talking, talking. Trying to understand. Trying to make sense of it all. It was exactly what I needed.

We stopped at the Princess Diana Memorial Playground - the queue was huge, and so instead we opted for the carousel and baby-ride. Ava jumped on with enthusiasm and then wailed the whole way round with her little arms reaching for me; "Mama! Stopp! Raaaaaaaaauuuuuuuuuusssss!" (Mama! Stop! Out!) I felt terrible watching her spinning round and round on this ride, looking at me with these desperate eyes and sobbing her heart out. We had lots of cuddles afterwards! I felt terrible but it was sort of nice to get upset about something normal...

We walked further and fed the ducks while Ava chattered away... switching between english and german (absent Mama means German has gone to pot!) she threw her little bits of bread and ran across the grass chasing the pigeons. Normal. Refreshingly normal.

We returned to hospital to another blow. Heidi's CRP levels are refusing to come down further. Its probably something little like her cold throwing all her inflammatory markers off, but as long as there's even a smidgeon of doubt that the Kawasaki's could be lurking, dormant, ready to strike again, the Doctors will not give up. I'm so grateful for that.

So tonight we start round two of the immuno-globulin and pray, long, trust that we will kick this Kawasaki's Disease once and for all. It nearly stole my baby girl's life. It has NO place with us...

Please pray that her CRP levels come down overnight with the treatment. If that happens, they can take her off the IV, put her on low-dose aspirin and we can head home. Battered, beaten, but not destroyed. We then start the long road of medication, regular echos and hope - longing that our little girls body will restore itself in time...