back in a bit by twintwo featuring sequin tank tops

Leather top €125 - cosstores.com

Ian R N sequin tank top $167 - lagarconne.com

See by Chloe snap pants $148 - lagarconne.com

Proenza Schouler tote handbag $615 - kirnazabete.com

Rag Bone fringed shawl $150 - lagarconne.com

Karen Walker Eyewear rectangular sunglasses £149 - goodhoodstore.com

New Blog

We've moved! Visit us at

http://thestaffieris.typepad.com/the-staffieris/

First Day of School

I don't know who was more excited for school to start this year......the kids.....or myself!!! It was a great day for us all!

Michael started his first day of Kindergarten, and he did so well! I was a little nervous that he would hang all over my legs, which is what he did every day of preschool, but he was such a little man! I think he is so excited to be at the same school as Abby and Madelyn!

Michael and Abby had to wear the medals that they both earned on Labor Day at Three Arch beach. Michael got first place for the run in his age/category, Abby got third for the fun in her category, and Madelyn got first for the same! I think Madelyn didn't wear hers because she didn't think it would match her outfit!

This is Michaels new way of smiling at the camera!

He's such a little dude!

Shopping for bags this year was very exciting! Abby found this cute purple one at target, and loved that it had a peace sign on it!

Madelyn was very excited about the messenger bag this year, and loves throwing it over her head onto the opposite shoulder!

The girls are in the same classroom again, easier for mom that way! They are pretty independent of each other in the classroom, so it actually works out really well. They were excited after the first day because they got to sit at the same table together!

9-11-09

I am moved by everyone's posts today about their reflections of the terror of 9-11 years ago. I think we can all remember what we were doing when we found out about the towers being struck, and falling to the ground. It almost seems like it was yesterday to me, because I can still remember the way it felt to see so much destruction in our own country.

I had the opportunity to visit the Ground Zero museum last Spring when I visited New York, and was overwhelmed by the sadness I felt there. It was really difficult for me to see the wall of missing persons, and read the feelings of people that were there, people that were directly affected by the tragedy of that day. But, after the tears, I felt a solemn pride in my fellow Americans that risked their lives that day, and in so doing, united our country. I am so grateful for that experience, and for allowing myself to feel that sadness... because sometimes it is easy to push it aside and try to forget. I don't ever want to forget.

Going Public

I am attempting to keep up with the blog again, and decided to make it viewable to anyone. Wish me luck as I try to keep up with documenting my life!

Lyla Lou's Giveaway!!

I know it's been a while, but this is what I have busy with!!!

We are doing a giveaway today, check it out on this website...http://www.giveawaytoday.blogspot.com/.

And don't forget to check out our website www.lylalous.com.

MRI Results

We met with Lyla's new neurologist on Thursday to discuss the results of her latest MRI, as well as to consult on her case. After waiting 4.5 hours to see the doctor, he told us that basically the MRI did not show anything. It was frustrating because he said that the neuroradiologist said in her notes that her scan looked "normal", which he disagreed with. He said that her white matter looks abnormal, and that he feels as though she still fits under the category of a white matter disease. He is going to consult further with the neuroradiologist, and we are being scheduled for another EEG. He also ordered a whole genome array CGH analysis, which basically maps the whole genome. We may or may not get any answers from that test, which we already had the blood drawn for, and the results will take a few weeks. This test is the same genetic test that my niece Claire had, so it may be interesting to see how their results compare. Anyway, basically we didn't learn anything new. Mike and I both felt that we liked this doctor though, who is the 4th neurologist that we have seen now. We will continue to have her followed at UCLA, even though it takes forever to get up there! I hate going to LA! So, at least we feel comfortable that she now has a doctor that will be spearheading her case. I will update as soon as I get any results that are significant to report!

MRI at UCLA

Today I took Lyla up to UCLA to have a follow-up brain MRI with spectroscopy (you can look it up online, I don't really know what it means!). It's been about 7 months since we had her last MRI, so it was time to see what her brain looks like now. I don't know why I felt like taking pictures, but Mike was out of town and there are a lot of people interested in Lyla, so I thought I would document a few pictures of the day. Everything went fairly smooth. I had warned the nurses and anesthesiologist that she is a tough stick, most of her iv lines are difficult to place, and they usually have to dig around to find a good one. They were confident that they could find something without having to use more drugs than necessary to calm her down. They used these numbing patches of lidocaine, which apparently work better than the cream form which has never worked in the past. It did work, and she didn't even cry when they put the needle in. I was extremely impressed, the iv has always been the hardest thing for me to watch them do, especially since I am also a difficult stick, and I think it hurts really bad when they dig around! However, once we got to the MRI table, and started the anesthesia, she started screaming because of the burning meds going into her vein. She wouldn't fall asleep, so we realized the access point was not as great as we thought it was. They had to try for another vein, which of course made her cry even harder. They only had to do one more poke to find a good vein, and she finally passed out a few minutes later. An hour later, this is what she looked like... We are meeting with the head of pediatric neurology at UCLA next week, and will discuss the results of the MRI then. I feel some anxiety again with waiting for test results, it's been a while since we have tested her, and fear of the unknown is never fun. We may not know anything more than we already do, but hopefully we will get more direction in the course of her care. I will try and post after we meet with the neurologist next week. Until then, thanks for all the support that we receive from friends and family, it never goes unnoticed or unappreciated!

Sk8ter Boy!

Michael has found a newfound passion for another individual sport....skateboarding! Along with skiing, he absolutely loves it. And also like skiing, he is already trying to do tricks and rails, although this sport takes a little more practice to be able to master. We have a local skate park that is perfect for learning how to skate, and allows him to push himself a little more each time. I've had a hard time deciding whether or not this is good for him. As you can imagine, there is quite a rowdy crowd that hangs around the skate park, and a lot of the kids look like they are up to no good! But, we figured out the times that are less crowded, pretty mellow, and he loves to skate. He will work at it for hours if he could. So, for now, it is a great thing!

Here is one of his fans, cheering him on!

I love seeing his shadow on this one:

He hardly smiles when he is out there. He just has a look of pure determination!

Madelyn was very jealous when we took Michael to skate and she didn't have a board to join in with him. She wants to skateboard with the rest of them! So, of course, Mike went out the next weekend and bought boards for the girls!

Lyla working out!

I finally got some more video uploaded, it takes forever!!!

So the main thing that we are still working on with Lyla is getting her to hold her head up. In this clip, she is doing magnificent!!! So glad I captured it! It may not look that great to most of you, but it is so much better than she has done. She still has a hard time controlling her head, but we can tell she is getting stronger.

Video of Lyla

I figured since quite a few people haven't seen Lyla, and are interested in seeing what she is like, I would try to take some video. Getting out the cameras with her has been sort of a challenge, primarily because of her swings of fussiness. But, she is coming out of about a 2 1/2 week slump of being grumpy 24/7, and is finally smiling again. So, I figured now would be the time to get out the cameras.

This clip is taken while Abby and Madelyn are coming home from school. Lyla always gets excited when she hears them come in, and maybe you can tell why from the clip:

Hope it made you smile, and I will try to post more video later!

Utah 2009

We had the best vacation with the Staffieri's in Utah. We stayed in a little town in the mountains called Eden, and had a blast skiing with the kids. It was their first time skiing, and it was awesome. They LOVED every minute of it. The most drama was getting them off the mountain at the end of the day! Lyla was happy, the kids were happy, we were exhausted from skiing, it was so great! Marilyn took Lyla for a few days before she got there so we were able to ski with the older kids for a few days. It was great to be able to be together with them for those few days, without taking turns taking care of Lyla. We all missed her terribly, though, and were so happy to see her on Tuesday. Abby and Madelyn getting ready for ski school! We skied the first day at Brighton, then the next day at Sundance. It was absolutely gorgeous...warm, clear, and sunny! Michael was a little daredevil! After a few days of lessons, he was going for all the jumps, and trying to do tricks!

Madelyn enjoying the lift!

The girls!

Michael at Brighton ski school

Pizza and french fries!

Mike and I love to ski together, it is really the only sport that we both enjoy doing!

Abby and Madelyn on the plane ride to Utah

Michael was a little disappointed not to be sitting by the window on the way to Utah!

Our first day on the mountain

Abby waiting for ski school

Madelyn

Michael

The kids at Snow Basin. They loved being able to ski with their cousins. Here they are with Caleb.

Madelyn and Mike

Abby skiing

Chelsea, Nicolas, and Matt

Michael got bored once he mastered skiing forward, he decided he wanted to learn how to ski backwards like the instructors!

Lyla and I got to hang out together one day when the rest of the family went skiing. We met them for lunch in the lodge, and then got a few pictures outside. She loved being in the chilly air!

Gotta love her little tongue that always sticks out!

We took the kids to Temple Square at the end of our stay, and had Lyla in her stroller all bundled up!

The kids at the statue of Christ

Michael, Abby, Madelyn, Ellie, and Nicolas

We are so grateful for the time we had to spend with family. It was a completely enjoyable trip, and one we hope to be able to do often!

What...?!! A new post?!!

So, it's been a while. I have no good excuse, except for that I just haven't wanted to keep track of my life these days! It's been busy, and not all bad, just not that exciting! I do have a few fun things to post about, though, so I will try my hardest to get some of that done...soon! A few people have wanted an update on Lyla, so I thought I would write about where we are with her. Not a lot has changed, she is still tube fed, although we finally started some feeding therapy for her. I have to go all the way up to the city of Orange for it at CHOC 2 times a week, but we think it will end up helping her. They do what is called vital stim on her, for an hour each session, where they attach electrodes to the muscles in her throat that stimulate her swallow. It basically flexes those muscles and strengthens them, so that hopefully by doing that her swallow will get stronger and she will be able to feed by mouth. She tolerates it pretty well, apparently it feels kind of tingly, and like your muscles are working out on their own! We are also still doing therapy through CCS, California Children's Services, twice a week. We love her therapists there, and she really enjoys going. She usually ends up falling asleep after we leave, so we know they are working her pretty hard. They are still just trying to get her to keep her head up, which she can sort of do, she is just not very strong and can't hold it up for very long. We have seen some small improvements, which is good, at least we are moving in the right direction. But, I think everything with her is just going to take a lot longer. As long as she is progressing, though, I think I can be happy with that. We also get therapy through Regional Center once a week, although there is word that until the budget is signed by Arnold, that program may have to be shut down. So, we feel very blessed right now that we are getting our services through a different state program (CCS) that should not be affected. We will keep our fingers crossed!! We will soon be meeting with a new neurologist up at UCLA that we have been in contact with. He will be doing another MRI, hopefully in the next few months, to see what her brain looks like now. From there, we will hopefully have some sort of direction of what comes next. I've pretty much given up on the idea that we will find a diagnosis for her, but maybe we will. It would be nice to know what to call her condition, what her future might look like, or what to expect. But, at the same time, we probably wouldn't be doing anything different than what we are doing right now, so that kind of tempers my frustration with that. I'm trying to think of what else to update you with....but the rest seems kind of boring. I don't ever mind talking about it, so if you have a question, just ask. Maybe I will leave you with that! Good night!

Christmas 2008

I didn't get that many pictures of Christmas this year. The kids had a good Christmas and we enjoyed being with family and having some quiet time at home. Madelyn got a cupcake set and started mixing right after we were done opening presents! Madelyn and Lyla All three kids got skitters this year. The rest of the neighborhood has had them since last Christmas, and we have been hearing about them ever since. Luckily, Santa pulled through this year! Michael was so funny, because before Christmas day, he kept talking about what he was going to get, like it was a for sure thing. So, he came downstairs to see his gifts, saw the skitter, and said, "Where's my ramp?" Meaning, his skate ramp that he asked for and expected he would get! So, when we walked into the room where all the wrapped presents were, he saw something big under some blankets and said, "Oh, there's my ramp!" So, I guess there were no surprises for him this year!