Liliana Sue

I know some of you have been waiting...
Last Thursday's doctor visit was great. Lili continues to grow and is over 16 lbs. Her doctor was very proud of her for how big and strong she has been off of her vent. He said that we should try to do one hour off the vent twice a day (a total of 2 hours a day). We took his advice and she has been doing that every day without any difficulty. She continues to handle everything that we throw at her. What a strong girl! She continues to gain strength and movement every day. She has been seen lifting her arm all the way up to her head and playing with her hair. She loves to grab for anything within her reach. A couple of times she has surprised me when I was leaning over her to give her a kiss. All of a sudden I could feel something moving on my chest. I looked down and it was her hand. The other day, she kept moving her foot over to the side of the crib, where my arm was, and tickled my arm with her toes. She is so funny! She makes me laugh every day. She has new foot and hand splints to help improve and maintain flexability in those joints. They are bright and colorful and she likes to look at them. I can tell that they are working better than her other ones already. We are amazed by her every day and can't wait to see what tomorrow has in store.

Last Saturday was the day we have been anticipating ever since we found out that it was being planned. For those of you who don't know, LeeAnn's good friend Ann and her husband Chris Caldwell, along with the help of some of our family members, organized and held a golf outing in honor of Liliana. It was an amazing event. A lot of people participated which we have not seen since before Lili was born. It was great to see everyone! A lot of people who were not able to participate in golf, donated to the cause. There were more donations than there were holes to put signs on. There were many signs and posters with Liliana's picture and story of her life and progress. There were souveneirs from the event, my personal favorite being red cause bracelets that say Liliana's Angels. There were lots of wonderful gifts donated to the event to be raffled off. It looked like people were having the most fun trying to outbid each other on the silent auction. There was a basketball and football signed by past Detroit Lions player, Tony Semple showing his support for Lili, and thanking everyone else for their support. The basketball was also signed by everyone who attended the event, and was given to us toward the end of the day. The football was raffled off and won by a neighbor of LeeAnn's sister who generously gave it to LeeAnn, Lili, and I. I won a $50 gift certificate to Dick's in the raffle. Ann's brother hand made a beautiful adirondak chair to be raffled off which LeeAnn wanted real bad. We bought a few squares but had no luck in winning. However, the person that won the chair ended up giving it to my parents, and my parents ended up giving it to us. What a surprise!!! Golfing was fun. We played at Centennial Acres, which is just west of Lansing. Got to play with my brother, my cousin, and one of my brother's friends. A lot of people thought we were going to be the team to beat, however we all played terrible and did not even come close to the first place team. We had fun and that is all that matters. Thank you to everyone for your support! Thank you to all who helped plan and put this event together! Thank you everyone for your generous donations! Thank you all who helped this event be such a great success! All of your love, help and support is helping us to give Liliana the best of what this world has to offer!

Lili did an hour off of the vent today. Our doctor told us not to go any longer than an hour. She has already reached her set limit. What an amazing girl!!!













Where's my tubing???

Just so I don't keep you all wondering, Liliana amazed us this morning. She did 20 minutes without her ventilator and surprised us all. She acted as if nothing had changed. She did tire out toward the end and that is why we put her back on the ventilator after 20 minutes. We are so proud of her and now we know that she wants to keep working to get rid of her vent all together. We couldn't be happier for our baby girl. What a beautiful day!!!

Don't get me wrong, she's a mommy's girl too!

We had a doctor visit this week. Liliana is up to 15 pounds 14 ounces. I always forget how long she is so I can't post that, but she is a tall girl. She still continues to improve her movements every day. She makes us so proud. She is successfully tolerating 12 hours of CPAP per day from 8am to 8pm. Her doctor asked us which direction we wanted to go next. If we were happy keeping her where she is with the vent or whether we wanted to continue to push her to see what she has in store for us. It was probably one of the easiest decisions that we have ever had to make. After she has been tolerating the 12 hour CPAP routine for a couple of weeks, we are going to try her for short periods off of the vent. By off the vent, I mean just that. We would take her completely off of the ventilator support and put her on what is called a trach shield which gives her oxygen and humidification but no pressure support or anything like that. I know she is probably not going to tolerate that for very long at first but after weeks and weeks, hopefully she will continue to strengthen just like she did with CPAP. I am somewhat nervous to do this for the first time. If you are wondering why, imagine taking your child off of the machine that has been supporting their breathing for 99% of their life. How will she react? It's hard to say, but you never know unless you try and you can not progress toward a goal if you do not have a plan. Our nervousness is overcome with the amazement and joy that she has brought us so far. Here are a couple of pictures of our beautiful girl: