Liliana Sue

I was so excited today that I took a very short afternoon nap and even stayed up a little past my usual bed time. I heard that my cousin Logan was coming and I couldn't wait to play with him again!!! Mommy and daddy were trying to help me take another quick nap because I was really tired, when uncle Steven, aunt Vicky, and Logan arrived. When I knew they were here, there was no way you were getting me back to sleep. Mommy and daddy put me in my stroller and brought me out into the livingroom so that I could hang out with and play with everyone. It was such a great day. Logan is a wild man. He wore me out just looking at him. He is a wiggle worn. He doesn't sit still for 2 seconds. He crawls all over the place and even stands up with the help of the nearest stable object. I told him he better watch out because if I keep getting stronger at this rate, I will be chasing him around in no time. It was great to see everyone. They hung out for a long time. I felt bad that I was tired and went to bed before they were ready to leave. I told them to come back real soon because as I get older and older, I'm sleeping a little less.

If anyone sees Dr. Relich, tell him that his alleluia order worked. Mommy and daddy decided to try and stop my reglan because they didn't think that it was working. Dr. Relich said to try it and see if there was any change in my amount of spit ups. Well, I had a great day today. I don't remember if I spit up early this morning or not, but daddy got up around 10 or 11 and I didn't spit up the whole rest of the day...alleluia!!!

My last doctor visit went well, I am almost 17 lbs. They tried to draw some blood from me for genetics testing but were unable to get it this time. It hurt! Hopefully they can get it next time. Dr Relich was happy with how I am doing off of the vent. His suggestion was to try and add an hour each week. I have done one hour in the morning and two hours in the evening all this week. Next week I will hopefully switch to 2 and 2. I'm so proud of myself. Anyway, my little fingers are smoking from all of this typing and I am getting tired. I will write again soon.

I love you all,
Lili

P.S. Here are some pictures from my company today.

These are me and Logan watching Baby Neptune, it's his favorite, aunt Vicki holding me, and daddy holding Logan.

I swear to tell the truth, the whole truth, nothing but the truth, so help me God. Oops, wrong hand!I'm getting so big. Mommy and daddy are the greatest parents in the whole world. My nurses have been great too. As you can see in the picture above, I am moving my arms a lot more, even when I sleep. I am able to put both arms up by my head. I like to play with my hair and my forehead. It is a lot easier for me to reach for and play with my toys these days. Mommy and daddy keep taking me off of my ventilator. It is nice to be off that machine. They hook me to a different machine that is almost as noisy. It blows cool air at my neck. They say that gives me oxygen and keeps my secretions from getting too dry. I like breathing on my own. That other machine doesn't give me too much freedom. Mommy and daddy make me so happy. I smile at them all day long. Sometimes they are really goofy and I laugh. They have been getting me out of my crib and even out of my bedroom a lot. Mommy likes to put me in the stroller and wheel me around the house. It is nice to see new things. Sometimes she even takes me out on the porch for a while. It is nice to be outside and feel the air on my face. I have a doctor visit this week. I can't wait to impress him with how well I have been doing off of the vent. I just wanted to drop you all a line an let you know that I am doing fantastic. For all of you who I have already met, I miss you and can't wait to see you again. For all of you who I have not yet met, I can not wait to meet you. I will write again soon.

Lili is great. I tried her off the vent today for an hour and a half straight. She had no trouble. I hope to try 2 hours straight before we see her doctor again so we can really impress him. So, if you know who the doctor is that we see next week, don't tell him my plan because it is going to be a surprise. Went to work last night and got a call from LeeAnn that our nurse had not shown up. She is sick and required medical attention, hopefully all is well. I ended up leaving work at 11pm, 8 hours early to come home and take care of Lili throughout the night so that LeeAnn could sleep since she had been up all day already. All was good. Lili hardly needs any care at night these days. Just change diapers, turn her, make sure she is sleeping soundly, do her stretches and exercises in the morning and feed her, give her all new cannisters and fluids, and that's about it. Definitely a lot easier than at the hospital!!! We had an awesome night. Tonight our nurse was still under the weather, so I am at it again. Lili is sleeping soundly and all is well. She is so darn cute when she sleepsThese are my new hand splints.This is me being me. Every time my parents try and position my legs straight with rolls so that I don't develop "frog legs", I move my legs all around. I put them anywhere except on the rolls, even when I am sleeping. It's fun!These are my new foot splints. Also, this is me playing with my hair. Sometimes I'm able to get my hand all the way up to my head, it's not easy though. I like the feel of my soft hair on my fingers. Now I see why mommy and daddy always play with my hair.This is me smiling really big. I like to smile with my tongue out, mommy and daddy think it is so cute. I'm smiling because daddy was being really silly so that he could get a picture of one of my award winning smiles to show all of you. I hope you enjoy!

Addendum: Today Liliana woke up early from her 2 o'clock nap so I took her off the vent. I had the time, so we tried our 2 hours straight. She did extremely well as expected. She was really tired from such a short nap and the extra work, but she didn't skip a beat. She was smiley the whole time. What a superstar!!!