Lauren Update V

I wanted to wait until Friday pasted before giving another update. I can tell you Lauren has been a handful at home and we are both exhausted. That’s the start to parenthood I know.

She has been eating pretty well, we have to use special bottles and nipples since she has a cleft pallet in the rear of her mouth that was caused by the tumor. We also have pretty rigid rules about when and how much to feed her as well as a specific high calorie formula we need to use. It makes things a joy really (not angry, just tired). We have per our pediatrician thrown a few “baby” rules out the window to better help Lauren, which I won’t mention as some may not agree and it is after all a pointless argument at this point in her life.

So we spoke with MCG Friday at Lauren’s appointment and just were not satisfied with the available answers to questions we had or the apparent lack of any kind of definitive prognosis. We realize that no prognosis is perfect but we just felt like they kept deferring the answers to the neurosurgeon who is still out of town, and we have yet to meet. However they wanted to get the surgery scheduled. Please don’t take this wrong, MCG has been phenomenal to us. They have done a very impressive job and taken good care of Lauren. We just can’t get the info we would like. They also reminded us that this tumor and it’s location is very rare and is something they have not seen much of. As parents we want we can get and will seek it out. The doctor at MCG said the best guy he knew of is in Phoenix.

Needles to say we spoke again with our pediatrician who has been our advocate and he wants a 2nd opinion which of course we agree with. He spoke with other doctors who said that if it was their child there is only 3 doctors in the entire world they would let head up and preform this surgery. Only one is in the US. Some major strings have been pulled and we are meeting with the one US doctor and his team of neurosurgeons Tuesday at Duke University. He has even said if he needs to bring the doctor from Japan here who trained him he will do so (the Japan guy is supposedly the best one in the world from what we have heard).

MCG told us that no matter where we go the surgery will be very intense. To reach the tumor they will have to literally cut and remove the front part of Lauren’s skull to reach the part of the tumor that is located behind her left optic nerve and into the nasal cavity while reaching the bottom part through the hole in her pallet. They talked about having to move bone into the place the tumor is to support her brain since it is resting on the tumor or something as they explained it. There is so much neurological “stuff” in the tumor area it’s not funny. Everything from swallowing to vision and sensation in the face can be affected and so much more I can’t even attempt to explain.

Please continue to pray and spread the word, that’s all I can ask. I’m so selfish in that regard. All I can think of these days is how something so ugly can be inside something so innocent and beautiful. I have never prayed so hard and slept so little in my entire life.

My life verse just came to mind. Philippines 4:13

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~ by Dan Browne on March 15, 2008.

3 Responses to “Lauren Update V”

  1. Jeremiah 32:17 comes to mind, my friend. You and your precious and beautiful baby girl are in my prayers.

  2. You, your wife and Lauren are in my family’s prayers every day. God bless.
    The Williams

  3. We are and have been praying for Lauren and you both since we heard about your circumstances. She is a big blessing and GOD doesn’t do things halfway, he is faithful to complete the good works that he begins in us. We moved Awesome Music to Lynn Haven and the lesson programs are exploding!! I’m glad you have this blog so we can keep in touch, the new church bldg is awesome! We miss you guys, God Bless!!1 Bill Arrants

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