update on us.

Dec 18, 2008

wow, what a change a week brings. on monday, we had a routine CT scan just to check claire’s brain development out and fully expected it to be the same as when she was born. her neurosurgeon was surprised to see that the fluid on her brain is increasing yet her head size is not swelling as one would think. this means one of two things- 1. her head will gradually increase b/c there is pressure from the spinal fluid and that is affecting her development or 2. there is no pressure, the fluid is just increasing and taking over brain matter and her brain is just not growing normally. obviously we hope it is the first scenario. what this means is she has to have a brain procedure in january that will check the amount of pressure in her brain. they will drill a hole through the top of her head and the side and insert a tube that will measure the pressure while she is awake over the next 48 hours. this will take place in the ICU. they will drain a little fluid and we’ll see how she does over the next few weeks. hopefully we will see a progress in her development from that. then we will discuss the pressure finding and if they are high, she will need a shunt permantently in her brain to drain the fluid or endoscopy to remove the blockage causing the buildup (if they can find one.) the procedure and shunting have high risks which makes us fearful but they are necessary so we have to go forward. we are devastated that on top of all these brain abnormalities our baby has to have brain surgeries.

please pray for a miracle. that claire would go into the hospital in january and the ventricles would be smaller and her brain matter increased. that she would not suffer in pain from any surgeries, that the results of the procedure would show that her brain can grow.

people have been asking us how they can help. really, the thing we need most is love. it feels like we are in such a deep, dark pit right now and we cherish the moments when we feel happy, lifted up and our minds are briefly freed from the horrific circumstances we are going through. we’re going through so much that is diificult to try to come up with things that would help us. if you have something on your mind, give us a call or email. i’m sure whatever it is, it would brighten our day.

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