Hi everyone :) was hoping to have a nice simple update today but as always i have sooo much to tell you all! Lilly has been in hospital again with pnuemonia from an ordinary cold. Apparently because she doesnt swallow her saliva, and the cold virus lives in the nose and mouth, her saliva aspirates little drops in to her lungs and the cold virus gets to her chest that way, so even a simple sniffly nose can be dangerous for her.
At one stage they thought they would have to put her on oxygen at home when she sleeps, but they started her on a new medication to dry up the secretions in her lings and produce less saliva and so far it has worked miracles! she is no longer my little gurgly seagull!
They did find she has obstructive sleep apnoea, and a tonsill and  adenoids removal may be in the cards in the future.
while we were in, they discovered that she has a condition called macrocytosis, which is enlarged red blood cells. She also has nuetropenia which is lowered white cells and platlets in the blood. This in itself is nothing but its what might be causing it that can be a worry.
So they are doing a Bone Marrow Biopsy on the 30th May as well as a chest CT under anaesthetic :( Scary, they dont expect it will show anything sinister, but the mere thought of luekemia is scary enough! she has enough issues to deal with.
they wil repeat the sleep study too just to ensure they made the right decision about the oxygen.
And then they tell me that her kidneys are in danger of damage because her urea is high, and she needs more water in her feed tube a day. She will float away at this rate. Also she is having increased seizures and apparently her Epilim level is high, but having trouble getting in contact with her neurologist GRRR
She is home now and doing extremley well
While all this is going on my hubbys dad has a stroke, two actually and is in ICU. So hubby is flitting between home and two hospitals as well as working at one. I am trying to be supportive, he is usually my rock so the roles have been reveresd for now.
But greatfully we have had much support and kind wishes from our freinds and family both online and offline lol
He is stable at the moment, but we are in the waiting stage to see what the prognosis is.
other than that i have been trying to spend some quality time with the girls.
I have been to a baby shower, and had a great night at the girls cub scout parent night.
looking forward to some holiday time at the end of the month, only three more shifts at work to go!!