Doda's Recent MRI

GOOD NEWS! (according to a preliminary, quick review of Dakota's MRI on Friday). The radiologist did not see any tumors in her head, only white tissue matter that is expected with Neurofibromatosis. I'm not sure what the white tissue matter is, or if it causes problems, or if it grows. I do know that it is what they looked for and couldn't find when Dakota had her MRI four years ago, thus the big negative on NF back then. So, I guess this white brain matter shows up later. I have lots of questions for the neurologists. Until then, we do know that Dakota will need to get MRI's every 6 months to a year for the rest of her life. The key to fighting this disease to catch it early and stay on top of it.

Dakota did well during the second MRI. She was a little worried about the IV part, but with only a whimper she survived it. One of Darin's co-workers gave her a Sleepy (7 dwarf) doll to take with her to the hospital. The sedation nurses got an absolute kick out of it at thought it was extremely appropriate. Sleepy got an IV, too! Dakota's head scan didn't take as long as the c-spine scan. It was only about 30 minutes long. She took a little longer to come out of sedation this time. The nurse had to wipe her face with a wet washcloth to get her to wake up. Dakota almost slapped it out of her hand when she felt it on her face and rolled over. A couple of seconds later, she lifted her head and looked up with a huge smile on her face. We all laughed. Even though it took her longer to wake up, it took less time for the effects of the sedation to ware off than last time. She was alert and ready to go before we even made it home. Bummer for that! I could've used a little down time.

We will still need to get the official MRI results via her pediatrician, hopefully the beginning of this week. The radiologist said he needed to look at the scans more closely, but preliminary results were good.

As far as what comes next...

I switched ophthalmologists before we even met with the first one. I heard enough about him (from my sister Holly's co-worker) to make me want to switch the one that comes down from the Moran Eye Institute by the U of U. He comes down once a week. When I called his office, I was told that he was several months out on available appointments, a.k.a. MAY! Can you believe that? She decided to check if there were any cancellations, and amazingly we got an appointment for Dakota on January 27th. Miracle #1.

We still don't have an appointment with the neurologist.

Holly, through her job has met a neurologist and geneticist from Primary Children's Hospital. This geneticists has, for some reason, become very interested in Dakota's case. And, without even having met her, she wants to become the liaison between our family and the specialists at Primary Children's. We will get in contact with her soon, hopefully, and she will direct us via referrals, etc. to the doctors we need to see. Miracle #2.

The geneticist said the hospital is days away from getting a grant specifically for NF research. If Dakota can get into the "system" soon, she could be part of their studies, and therefore at the forefront of modern research and findings for NF. She will get the best of the best...at their expense. Potentially miracle #3.

The geneticists also has become quite possessive of Dakota. She doesn't want just anyone touching her. The case with plexiform neurofibromas is that surgery can potentially be very dangerous. These types of tumors bleed if not handled with care. Asking any surgeon to go in and take them out without knowing what the tumors are is not smart, aside from the fact that a mishandled surgery could really mess her up for life (in the nerve department, mobility, excessive bleeding, etc.). She is very adamant about letting her lead us to a very, very skilled and experienced neurosurgeon who knows what he/she is doing. I look forward to talking with her.

Anyway, all in all, we are already seeing the tender mercies/miracles happening on Dakota's behalf. The people we are surrounded by are playing roles in Dakota's path that will potentially lead to a better life for her. The doctors in our ward/neighborhood, my sister who has connections with Primary Children's through her work with the State of Utah in early intervention, and the countless people who are praying for her are all making these miracles happen. We can't thank you enough! Power in numbers! We are going through this for a reason, and although we don't know what it is...our little Dakota will teach us something through all of this. If anything, she has taught me courage and a positive attitude. She has hardly complained through all of her doctor's visits, scans, tests, IV's, hospital visits, sedations, nurses, etc. Darin took a few shots of her with his iPhone during both of her MRI scans. These pics are proof that she still smiles!

Dakota getting a "drink of water" through her IV before her first MRI.

Dakota all "hooked up" and "strapped down" in the MRI machine.
She was sedated for this part.

Dakota during the prep for her second MRI.
She has Sleepy with her who had also been given an "IV".

In the car on the way home from the hospital.
Both she and Sleepy look very sleepy.