Liliana Sue

Sorry it's been so long since I last posted. Things are busy as usual. We did get Liliana out of the house for a halloween party. It was put on by employees of the hospital where she was born and spent the first few months of her life. They invite all "NICU Graduates" and families to attend. She wore a ladybug costume but we do not have any pictures at this time. We took our camera with us, but got so wrapped up in all the excitement that we forgot to snap some. One of Lili's nurses took some pictures, so hopefully we can get them from her. We should have some of our own pictures after halloween. Lili is going to wear something different, but I won't tell you what it is just yet. You'll have to wait for the pictures. We won't be taking her anywhere, but she should have fun helping us pass out candy.

Liliana had some blood drawn a month of two ago for genetic testing. There were two different tests. The first one came back negative. The second, which was an ACTA1 genetic sequence analysis came back positive! This is consistent with her diagnosis of Nemaline Myopathy and we now know exactly where the mutation is. Now that this is known, they want to test LeeAnn and I for the same genetic sequence to see if it was passed on by one of us, both of us, or if it was a sporadic mutation. This information will help us make decisions about our future and the possabilities of this happening again if we decide to have another child.

It has been a while, but not much new to report. I am feeling a little better. I now have 4 full teeth. I had a mild cold but I think it is finally gone. Today was the first day that I finally started feeling better than I have in the last couple of weeks. I had lots of smiles for mommy and daddy. I had some visitors today. Daddy's aunt Kathy and uncle Tom, cousin Tommy and wife Lee came to visit me. We had a good time. I even skipped my afternoon nap in anticipation of them coming. I was wide awake and playing the whole time they were here. I was out like a lightbulb in less than 15 minutes after they left. I'm glad I got to meet you all and I hope to see you again soon. Thank you very much for the nice dresses. I can't wait to wear them and look really pretty. Uncle Tom, daddy gives you a special thanks as well. Tiffany, daddy was sad that you could not make it. I was too, I can not wait to meet you. I know that you are busy. Daddy says that I should tell you to have fun in Hawaii. He says that you definitely need to go to volcano national park. We want to thank you and everyone at Cakes by Steph for the fabulous cookies. I can't have any, but mommy and daddy seemed to love the pumpkin ones. The cold weather is here and halloween is just around the corner, so here is a couple of halloween pics for you all.

For those of you who have access to Lilicam, feel free to e-mail me if you think that the camera is not working properly. I tried to view it today and it was not working here. I don't know how long it was down. The sooner you let me know, the sooner I can troubleshoot it. I know she is out of the crib a lot, but I'm working on getting the camera to be able to automatically pan around the room. The company needs to update the firmware and they tell me they are working on it. I hope they really are!

I'm very sorry to keep you all waiting for these updates. With all the love and attention that we try to give Lili, the BLOG is the last thing on our minds. Please understand. Thanks!

We had a doctor's visit last week. Lili is now 18 pounds 6 ounces. Her height is off the charts and her weight is average. They decided to increase her caloric intake to match her size. She now gets a larger volume of formula and we add rice cereal to thicken it and give her some extra nutrition. Dr. Relich, our favorite doctor, gave us some advice on how to fit Lili's weaning off the vent into our busy schedule. However, with Lili cutting some teeth, inconsistencies with her nap schedule, and our work schedules we are still having trouble getting into a routine. Speaking of teeth, Lili finally cut her top two teeth and she was/is miserable. I woke up only to come downstairs to a crying baby. I gave her some oragel and some motrin. She was fine for a while, but when the motrin wore off she was miserable again. I tried to take her off the vent for her weaning and she just was not having it. She was acting like she was ready for bed at 5pm which is odd since she has been staying up till between 7 and 8 pm lately. We let her watch Sesame Street till 6 since it is one of her favorites and we wanted to keep her up as late as we could so that she would get some good sleep throughout the night instead of waking up all night because she went to bed too early. LeeAnn also decided to go to bed early tonight since she has not been feeling well lately either. I tried to keep her up till 9:30 so that she would sleep through the night as well. Next I was waiting for the night nurse to come and Lili is miserable again. She hasn't woke up but she is very squirmy and keeps putting her hands in her mouth. I gave her some more motrin around 10pm. Work motrin, work. I feel so bad for her. If any of you are reading this and it is 10/4/06, please hope, wish, or pray that Lili is having a better day today. Besides that, things are good. LeeAnn and I realized that we were wearing ourselves down. If we want to continue to be as happy as can be when we are around Lili, we need to take care of ourselves as well. We decided to start a date night every other Wed. We went on our first one last week. It felt good to be out of the house TOGETHER, and we knew Liliana was in good hands and having a great time. Thank you nurses who are willing to rearrange your schedules to take care of Lili while we are out on our date night. Anyway, this is the second time I wrote this because it disappeared on me last time. I feel like I wrote it much better last time but hope you all enjoy it just as well. And now I am rambling so I'll end with the latest supermodel pics.

One more update. As I'm trying to upload pictures, Lili's alarm for her heart rate went off. She's still not feeling well and it is after 12:00. I went in ther to give her some love and wouldn't you know it, she had spit up. Poor baby! We got that cleaned up and she still wasn't feeling well. I tried to give her some oragel which she fought me with the whole way trying to keep me away from her teeth. After a few seconds she went to sleep. Teeth feeling a little better. Thank you oragel! If only you lasted a lot longer. I hope you have a better night sweet angel!!!

Picture 1- Pretty Pretty Princess!!! Picture 2 & 3- Sleeping beauty. Picture 3- Beautiful girl and her teeth.