Lpaedike you say Sally, the loss of Bea has been a shadow over the whole week. We have had a very up and down week here, but the thought of cup and Bea have been in the back of my mind, and made everything pale.
We are on holiday by the sea atm. It has been chaos, everyone is unsettled. We saw ds's paed before we went and told him about the Kleefstra study that ds is to be a part of. He wants to treat it as a working diagnosis, and in light of this and some stuff that has been going on with ds, he has made urgent referrals to a cardiologist, feeding/specialist SALT and learning disabilities team. He also listened to ds's chest and said he was concerned about a sound he could hear in one of his lungs, the area that has always been problematic on chest xrays,and was particularly bad when ds had pneumonia in August, so he is referring us wrt that as well
The first night of the holiday, was our 9th wedding anniversary, we had just had a particularly foul looking chinese delivered and ds started screaming, it was one of his choking episodes, but this time it really seemed a lot more fit like. It was horrendous, but it stopped and he went to sleep. He slept for a lot of the next day, I called his gp first thing, thinking we should return home, but she is calling his paed and arranging another eeg, and she said as long as ds seems well to stay. Anyway we are home tomorrow, and I feel so awful for not enjoying this holiday as much as i should, but we are all knackered, and i am full of worry and panic about ds, and being out of our home environment makes everything so much more difficult with ds, and he suddenly seems a lot more Disabled, with a capital D, if you see what I mean.
Anyway, enough moaning. I am cuddled up with ds watching Curious George, with the sea crashing away in the harbour outside the window. Life is good.