About Me

I'm currently 3 years old and reside in Northern California. I was born with a rare genetic liver disorder called Alagilles Syndrome that occurs in 1 in 100,000 live births. Although life may be tough sometimes I'm a very happy little girl who enjoys the company of family, my pets - Mia and Joey, and all the cool toys/gadgets I have to play with. Please stop by my site for the latest update on my life!

Friday, October 29, 2010

What a crazy week

All:

Well this week has got to be one of craziest weeks. Milaniya had 2 big appointments on Wednesday which went okay. Her first appointment was with her Pediatrician for a physical work up at Lucille Packard at Standford. One of the things we needed to address is the wax build up in her ear we had to flush out, which was interesting. I knew Milaniya had been complaining about her ears, but when we saw what was built up in them it was shocking! She cried and fought myself and the nurse the whole time. Needless to say, she did not like this at all! She actually does better with shots unfortunately.

After her appointment I decided to take her to Chuck E Cheese for lunch before we head to the 2nd appointment with GI. This is when the day took a turn for the worse. As I was driving out of the parking lot of Chuck E Cheese to a local service road my vehicle went completely out of control. I did not realize what was happening with my car. All I knew is I could not control my steering wheel and saw all this smoke coming from the engine. Thank GOD we were not on the major highway or near any pedestrians. I had hit a side walk which helped stop the vehicle. I managed to push the vehicle to a local business parking lot in order to call Eddie and AAA towing. It appears my steering belt completely broke off and the entire radiator / coolant system overheated. I ended up having to replace the entire radiator, coolant system, 2 belts, and something else the mechanic said I needed.

The day had me completely on edge where I felt life flash before my eyes. I truly appreciate the man above looking out for myself and Milaniya. Things certainly could have been worse, but appreciate we are both safe and sound. Through all this Eddie was able to come and pick us up to head to the GI appointment still. Upon arrival at GI we had to get status on what to do next on her cholesterol meds, see her weight gain, and even discuss other options on vitamin K. Her Rx for this has nearly doubled in price, but can't figure this out. So, we are working on other options. I'm just happy Kathleen Cox (GI) really likes Milaniya's progress overall. This is the news we live for.

Hope everyone has a safe and Happy Halloween. Milaniya will be a princess this year and will be posting pics soon of the big day.

What are you going to be for Halloween?

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