Liliana Sue

Hello Family and Friends!

Can you believe that my First Birthday is just around the corner!? I am very excited to be turning One Year Old and can’t wait for the celebration that Mommy and Daddy have been planning for me! Unfortunately, because I want to stay as healthy as possible during this cold season, I am only having a small Grown Up party. I wish I could have each and every one of you to my birthday celebration, but Mommy and Daddy don’t think it is a good idea. So, with the help of my Daddy, I have come up with a solution!

Simply visit my BLOG on the day of my Birthday Party and watch as I open a few gifts and smash my birthday cake! For one day only, everyone will be able to see Lilicam, no password needed. I know that not everyone has a computer, but this was the best idea I could come up with. I know time is short, but get together with your families and have a celebration of your own. Just make sure it is with someone who has a computer.

At 5:00pm on December 9, 2006 log onto our family BLOG site:
http://www.davidrobertloveland.blogspot.com/ The camera may be online sooner, but gifts and cake will take place around 5pm. If you’re lucky I may stay up late and you can continue to watch me for a while.

I hope that you can join me for my BLOG birthday party! Thank you for all your love and support. I continue to get so big and strong, Mommy and Daddy tell me that I am amazing!!

Hugs and Kisses-
Liliana Sue

Hi all, I'm back again. It's been over a week, I know. I've been waiting until I was strong enough to show you some good pictures of my new tricks. Picture one is daddy holding me in a sitting position with minimal support to my head. I can hold it up pretty good. I try to look all around. I'm getting so strong, but still need just a little bit of support with my neck. I'm still trying to coordinate my back muscles and still need a lot of support there. Picture two is daddy holding me in a standing position to help me get my feet planted firmly on the ground. I like to bend my knees and then push up big and tall. Picture three is me sitting up all by myself in my high chair. It reclines, but my parents had it all the way up in the seated position. It gives me a lot of support in my back but still makes me work to keep my head up straight. Pictures four and five are of me at the hospital before my recent procedure that I told you about in one of my other posts. I can't believe how far I have come. I can't wait to show you what I can do next. I had a pretty busy week this past week. I went to a clinic put on by the Muscular Dystrophy Association. I got to see people involved with every aspect of my care. I probably saw about 15 or so different people. They said that I am doing great and didn't have any suggestions for me at this time. I just need to keep doing what I am doing. The one thing that I did get out of it was some new therapeutic shoes. I grew out of my old ones already. I got fitted and measured and should be expecting them in the next few weeks. For all of you who take care of me and love me, keep up the good work. I really appreciate it!

As some of you may know, my one year birthday is coming up really fast. It is December 6th for those of you who don't know. It is the same day as my daddy's birthday. Keep your eyes open for an invite or information on what I will be doing. Just so you know, I am having just a small party becuase it is the cold season. I'm doing so good that I don't want to get sick now. Don't worry though, you will all be included in some way. More details to follow.

I hope you had a great birthday mommy. I love you.

P.S. Thank you for taking care of me all night last night!!!

As you may or may not know, I went to Children's Hospital in Detroit this past Tuesday for a routine bronchoscopy.
This was the first one that I have ever had. Mommy and daddy were nervous for me because they would have to put me under general anesthesia to do the procedure. I was nervous too. I woke up that morning just knowing that it was not going to be an ordinary day. I was not myself. We left our house at 8:30 in the morning and did not get home until after 6:00 in the evening. We were at the hospital all day for what is supposed to be a fairly short procedure lasting only several minutes if everything is normal. There was no reason we should have been there so long. Most of the time we were just sitting around waiting and wondering what we were waiting for because no one was keeping us informed. When they finally took me into the operating room, it was already 2+ hours after the time I was scheduled. After about 15 minutes, the doctor talked to mommy and daddy and told them that everything looks really good. The only thing was the I had some swelling and redness above my tracheostomy which the doctor thinks is from gastric reflux. He started me back on Reglan. When I was brought into recovery, mommy and daddy were there waiting for me. Good thing they were there because I don't think the nurses could have cared less about me. They did not have any suction equipment hooked up for me, and they did not even connect me to any kind of monitor to check my oxygenation or heart rate...I've only been on one since I've been born and for good reason. Anyway, mommy and daddy took care of me in recovery while the nurses carried on. I don't remember how long I was there because I was a little out of it still. I do remember that there was a wall mounted TV in there just like at home. There were some cartoons on so I watched and it kept me happy. After a while they said we were ok to leave. We went home and I slept the rest of the night. I woke up the next day as happy as can be. I handled it like a big girl. Mommy and daddy were so proud of me. Next time they will be a little less nervous, and so will I. Once again, mommy and daddy started Reglan, and once again I am spitting up twice as much. If this keeps up it will only make my swelling and redness worse. I think mommy is going to call the doctor and get everything figured out. Anyway, that is what I did this week. I just wanted you all to know that I am doing great. Daddy will post some pictures as soon as he can. Love you all and thanks for caring about me!

The first two are of the costume that I wore on Halloween night. The second two pictures are my halloween costume that I wore to my St. John's NICU party. Picture 5 is of me all bundled up in my car seat ready to go out into the cold to see Dr. Relich. Picture 6 is me and daddy watching Baby Einstein. I was having fun putting my leg around his neck. Picture 7 is me reading a card that I received. Picture 8 is just a funny expression and daddy wanted you all to see it. Hope you all enjoy!