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Wednesday, March 4, 2009

Update...We are going where now? How do you say that?.....

So I am sorry I know I didnt get an update posted as soon as I would have liked. Here is the run down and below is the latest update. We ended up having to go for an MRI. Kyle was so congested I wasn’t even sure they would do it. What a stressful day that was. Then the next day our appointment with the pediatric neurosurgeon was cancelled because he was sick. So we met Monday with his associate. In the meantime we took Kyle to the pediatrician because his cold didn’t seem to be going away. He had a double ear infection. Then Bennett got sick...went to the doc and he has a sinus infection. Then this last weekend I got sick and I am debating if I should go to the doc because it has been a week now. Ok back to our appointment with the neurosurgeon. He referred us to a Geneticist...A what? And how do you say that? Anyway, even though we pretty much knew this tumor was caused to Neurofibromatosis with Kyle gets from his dad's side of the family we had to get an official diagnosis. So that Wednesday we were back up at Phoenix Children's Hospital. Only to have that specialist say he hadn’t looked at the images of the MRI yet. I would have been so frustrated but this doctor is really nice. He actually carries a little black doctor’s bag around! So he gave the diagnosis without any further tests (I was very relieved) because he had to markers for it. He said to call him back Monday to see if he had reviewed the images or to remind him to look at them. Below is that update.....



We heard from the Geneticist yesterday. He said that he had a chance to look at the MRI images and something does need to be done with the tumor. It is pushing the eye out 3mm. At this point Kyle has little to no vision in that eye. So the doctor is hoping that whatever medical treatment we go with will restore most if not all of the vision to his eye. He said that they will be reviewing Kyle's case at their next Oncology conference next Wednesday. I am supposed to call him Wednesday morning to remind him to call us back with what they decided on. He is leaving Friday for 2 weeks so he said I am to call and bug him until I get a hold of him. I assured him that wouldn't be a problem! ha ha So by next Thursday at the latest we should know what they want to do for treatment. Once again we will let you know when we hear anything. Thank you for the continued support. We have truly felt our Savior's love and blessings through this.