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?

More appointments....

Hi Everyone,

We are going for another round of appointments, which includes some routine blood work this time. This Wednesday Milaniya will be meeting her Pediatrician for the first time and will be doing another GI follow-up. Things have been going really well for her, but still has those xanthomas that seem to be popping up everywhere around her legs, feet, hands, and even slowly around her eye. I hope to get some answers on a medication they hope to put her on called statens (hope this is the proper spelling)to help reduce her cholesterol that's at 900 last time we checked.

Well this is it for now. I hope to share some pictures of how bad her xanthomas have gotten and share a little bit more information about what this is.

Good night!

Stephanie

Hi everyone,

Just amazed each day how many people battle Alagilles Syndrome. This video really puts a smile on my face to see how positive people can be and are going through similar situation as myself. Here is a video of a loyal fan of the Ellen Show who has a son battling Alagilles as well. This was to good not to share. :-)

Alagille Alliance "Walk and Jump" Event Hosted by Chow Family

All:

We were able to be part of a very important fundraising / awareness event hosted by the Chow family called "Walk and Jump" in participation with the 2010 Alagille Alliance virtual walk here in the Bay area. This took place on Sunday, September 26th.  The turn out for this event was amazing! Not only did all those attending have a great time, but having opportunity to connect with other families who know exactly what I go through each day battling this syndrome is a God send.

Below are the 2 videos from this event capturing the walk (aka parade since we had music and instruments to help entertain the group). Enjoy!!!

Part I: Walk

http://www.youtube.com/watch?v=GjGXfq-8C1Y

http://www.youtube.com/watch?v=Ef9Sv_SQOOA

*I will be sharing the photo album of this event soon, but for now please enjoy the videos. Sorry it was so late getting this to everyone.

Thanks again to the Chow family for coordinating this event and glad to be part of its success.

 

"Pumpkin Overload" at the Patch

All:

Today was an eventful Saturday. We finally visited my first and Milaniya's first Pumpkin Patch.  There were jump houses and so much stuff for the kids.  Since Milaniya is still petite and small we opted out of not participating in the jump houses with the other children as she tends to shy away from those.  However she did enjoy the many pumpkins surrounding us.  Here are some pictures from today. 

The funny thing is we were on a mission to get 1 pumpkin, but walked away with 5.  So we literally had a family of pumpkins all shapes and sizes.  Luckily, the guy who ran the festivities gave us a great deal - $7.00 for all 5!!!!  What a deal.

AGS Families: Does anyone need Peptamen Jr. (Vanilla Flavor) cases?

To my AGS Families or Families with G-tube Feeds:

I currently have a total of 4 cases of Peptamen Jr Vanilla flavor that I'd like to give to someone who needs.  Milaniya has sinced switched over to Peptamen 1.5, which is more dense and contains more calories.  We've been able with this switch to get her off of night feeds. Thank God for this blessing!

Anyways, if you are in Bay area you can pick up (just shot me a message through facebook) or you can pay for shipping cost.  I believe there is a flat rate box running about $15.00 per case we can use, but requires taking out of originally packaging to have fit.

Please let me know if anyone is interested! I know this stuff is expensive, especially if insurance does not cover for families.

Her heart is strong and pumping

All,

Milaniya had her first cardiology appointment at Lucille Packard Childrens Hospital out here since relocating to Bay area.  She had a very long echo cardiogram performed, which I'm happy to report her heart is strong and pumping! Although, she's had what they call mild PPS and murmur there is nothing we need to be concerned with.  The only thing they are looking to possibly put her on is a medication called staten (hopefully I spelled this right). More to come on this.

The best news was when Dr. Ping stated "will see you in 2 years!"  This is the kind of news AGS parents like to hear. 

See her goofy picture on twitter!

"Reunited and it feels so good" ....with Chuck E Cheese that is.

Milaniya finally has reunited with Chuck E Cheese here in San Jose. Since recently moving here she's not had much time to run around.  Eddie and I finally took her to play and let loose.  Fun fun fun!!!! 

Here is Milaniya in action:

Milaniya's performance to her "Tita" song -- "I Took The Night"

This video was taken around in May 2010 while visiting Jacksonville, Florida.  Milaniya just enjoying a song she came across in my ring tones and just started dancing. Thanks Sharon! Milaniya refers to this son as the "tita" song. LOL!

Milaniya Singing A Remix with Keyboard (ABC, Justin Bieber Baby, Single ...

Our first visitors in San Jose..."Grandma" & "Grandpa" from Jacksonville

We had our first visitors from out of state.  Milaniya's Grandma Yoly and Grandpa Harv.  The visit went by super fast.  She really enjoyed the time she had with both of them since I had to work most of the time.  Places we visited and things we did while they were here were:

1. Visit the famous San Jose, Flea Market to buy produce and bargain shop
2. Day trip to beach town of Santa Cruz to walk the Wharf and Boardwalk (Milaniya gagged as she smelled the Seals from below along with the fishy smell...wish I got that on camera! LOL! I did manage to take a picture of our smelly friends. )
3. Shopping at the Great Mall of Milipitas
4. Grocery shopped at Seafood City, Trader Joes, Asian Market, and so many other stops

Needless to say, it was fun, but all of us shortly got sick. Thanks mom and Harv for your help and also for bringing some of home to us here in CA.  :-(

Here are the pics I wanted to share: