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Tuesday, July 27, 2010

Back to the Hospital

Dear Friends,
We find ourselves in the hospital again. A few weeks ago we noticed that Lila stopped eating as much and just didn't seem hungry. As the days went on she took less and less and fought every time we tried to feed her. So we made an appointment with our regular doctor. He added up how much Lila was taking and determined that it wasn't enough. That appointment was on Wednesday July 21st. On Thursday we got a call from the doctors office. The doctor had decided that we needed to go to Cardinal Glennon for some observation. We packed up, took off work, and headed to the hospital on Friday. When we got there they took blood, got a urine sample, got an IV in (it took 6 tries and finally had to put it in her scalp, but is significantly better than the 14 tries it took in Fairfield) and got a CT scan and x ray of her shunt. Her shunt seems to be in working order, which is a prayer answered. Blood tests came back good as did the urine sample. On Saturday we had a 24 hour EEG to determine if she was having an seizure (we are still waiting for the full results of that test). On Sunday we had a kidney ultrasound to make sure that her kidney's were working and healing from her last surgery ( she had surgery 6/30/10 to remove an obstruction). On Monday night we had a sleep study. The results from that won't be back for a few days. And this morning we had a MRI. To say the least our stress rate has been through the roof! LOL. Daniel went back home last night so that he could be to work today. So Lila and I are up here alone. We try to sleep whenever we can but it's hard with all the doctors and nurses coming in all the time. So far the doctors are stumped as to why she won't eat. She acts normal until you try to feed her. When you try to put the bottle in her mouth she pulls it away and shakes her head and fusses. It's very confusing. I hope that we can find some answers soon. The doctors are trying all the can and we are trying not to get a feeding tube but it looks like we are headed that way. Please keep us in your prayers. I will post some pictures that I have and update again later.
Love,
Alyssa, Daniel, and Lila

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