Tuesday, October 6, 2009

Update on Baby Evie...please pray...

Evie has some troubles that started this weekend. We know that God is faithful and can perform miracles...this little girl wasn't even supposed to survive...and God healed her little body. Here is the latest.....

We're in the hospital...
As Lyla would say... bummer dude!

After a great 2 weeks of being home, we are at Children's Hospital. Evie had a short seizure-like episode last Friday night but when we brought her in they didn't see much they could do... last night (Sunday) she had a much longer episode of straining, stiffening, some tremors, and some abnormal breathing, so we had her brought in by ambulance to check her out. They have admitted her to Children's and are going to do an MRI, EEG, have a neurologist check her out, and the geneticist look over her again. First they need to know if she is indeed having seizures, then they can determine if it is part of the skeletal issue that she already has, and then how to treat her.

If you could pray that 1. she doesn't have any more episodes, 2. that the doctors can find the cause of what's happening, and 3. we can get her unhooked from all of these monitors they have stuck all over her little body we would greatly appreciate it. Love you friends!
Lindsey & Fam
Psalm 116:2 2
Because he turned his ear to me,
I will call on him as long as I live.

Hi Again,We discovered yesterday that Evie is indeed having seizures, and during an EEG she was actually seizing with no outward signs of a seizure. This means she may be having small seizures between the large ones that we experienced this past weekend. She also had some interesting findings in her blood-work that the geneticist thinks may be leading him to a diagnosis of what she has. He is positive about finding a diagnosis, but not too positive about the way things are going right now, especially with the addition of seizures to her already long list of symptoms.Last night Evie was brought down to the Pediatric ICU. She took a bottle around 3:30pm Monday and I tried to feed her in the hours following, but by 9pm-ish she wouldn't open her eyes, respond to my voice, or take any kind of bottle/binky. They thought she might be seizing constantly, so she was brought to the PICU to start seizure medicine and keep a close eye on her breathing. Our pediatrician, the neurologist, and geneticist were all here within the hour, which if you have tried to get ahold of any of these people, you know is pretty miraculous, yet clued us in to the severity of the things they were looking at. After another EEG they ruled out constant seizures, and we may be going back upstairs sometime today. Her oxygen level is all over the place, staying at 100 for a few minutes then dropping into the 80s, low 90s, and back up to the upper 90s. She has to stay above 93 for a significant amount of time before they will let her go home. It is looking like we will be here for a few days at least. Since moving to the PICU last night around midnight she has had a CT scan, another EEG, a spinal tap, a urine sample, and more blood work. She is getting the works to try to find the cause of this unresponsiveness.

PRAYER requests: #1. that Evie comes back to being her normal self soon. It is really scary to watch her just lay in her bed. #2. That they an come up with a TREATABLE diagnosis, and that the diagnosis will be less severe than they are thinking right now. and #3.That John and I get some sort of rest while still managing to talk to all the doctors and get the information we need. God is good all the time. We know (from experience!) that no matter the diagnosis, her prognosis can change at any time, and life threatening diagnoses are not always life threatening (:Love you friends,Lindsey

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