Dakota Update

Sorry, it's taken a while to get back to bloggin'. Life rarely slows down enough for me. And I'm sick AGAIN! I think it just never went away, so I'm going to get some antibiotics from the doc tomorrow.

As for Dakota, her appointment with the pediatrician, Dr. Adams, went well. He showed us the MRI results and explained a little more about the disease. He confirmed everything that we had read on the internet...1) She has Type I Neurofbromatosis, 2) NF is fairly common hitting 1 in every 3,000 births, 3) We will need to be vigilant in getting her checked out regularly (eye exams, neurology exams, auditory exams, etc.) to stay on top of it, as well as looking for more visible signs of the disease...aka more lumps, and seeing how she does in school, learning-wise, 4) no one knows with each case of NF the severity in which it will affect each patient...she may pass through life with very few problems, or she may become blind, deaf, have siezures, and get grotesque lumps all over her face, arms, legs, etc., 5) If we catch it soon enough with each breakout, modern medicine has come so far that they can do a lot with lasers, 6) Wait and see (the words no one likes to hear).

The MRI results also showed how extensive the neurofibromas are. They are resting on her brachial plexux nerve which is connected to all the nerves and muscles coming down from her neck and that extend into her upper limbs and extremities. The tumors are also coming down as far as the tip of her left lung, showing that it is wide spread as well as deep. They can go in and surgically remove them, but it is up to us when we choose to have that done. It's not absolutely life or death, right now, but the concern with the brachial plexus tumors is that they can soon effect the mobility of her neck and arms, wrap around her vocal cords, and extend further into the lungs. As far as other concerns that they looked for and notated in the MRI result were unremarkable (meaning not of any concern right now), but I can't remember what they were or even understand what it meant.

She is getting yet another MRI tomorrow early a.m. (Friday) of her head now. They just want to make sure there are no tumors in or close to the brain, which will inevitably cause seizure. I'm concerned about her getting scanned again, not only for cost, but safety, but I think the alternative of not catching something that's growing is far worse. So, she will be "put to sleep" once again.

Dakota has an appointment with a pediatric ophthalmologist (Dr. Scott Larson) on January 27th who comes down from the Moran Eye Center (U of U) in Salt Lake once a week, and a yet to be determined appointment with the pediatric neurologist (Dr. Susan Benedict) from Primary Children's sometime with in the next month. She won't have any openings until then. We think we will wait until all the tests and consults are done before we go in for surgery. I want to know all we can before we go in.

As for a happier note, Dakota is starting pre-school. She is so excited and her teacher is well aware of the health concerns and willing to pro-rate the tuition for those days/weeks she will be out. She will only be down the street from our house, which is another good thing, especially with Dakota's peanut allergies as well. This will be a good test to see how she does socially with other children, outside of her family. I will continue to keep her in Miss Denna's dance class as well, as much as I can. All of this will give her purpose and diversion from the challenges to come.

Also, Dakota's birthday is on Saturday and she is having a very small b-day celebration that will also distract her a little. I can't believe she is going to be the big "5"!

Thanks again for all your concerns, thoughts, and prayers. We will need them to keep coming. I'll post more later.