Liliana Sue

We took Liliana out of doors for her first relaxing adventure. All of the other times that she has been out it was to go to the doctor. At first she didn't seem too happy. I don't know if it was because she thought she was going to the doctor, if she was too tired, or if it was just too bright outside. We had to cover her up pretty good at first because there wasn't a cloud in the sky. It was so bright that she could barely even open her eyes, even with her sunglasses on. Luckily, we have a nature trail surrounded by trees right on the outside edge of our subdivision. Once we got in there, we were able to uncover her. It was also completely shaded so that she could open her eyes and look around. She was looking around taking it all in. I really think that she enjoyed it. It was a lot of work for us to be able to do this with her, but it was well worth it. We had two strollers to carry her and her equipment. As you can see, I carry her vent on my back and the oxygen on my shoulder. By the time we got back home, my upper body could feel the strain of carrying the equipment. In the morning my legs felt the rest of the strain. I couldn't believe how sore I was. I can't wait to do it again and I know she can't wait either.

"Hello Family and Friends!
As you all know, David and I have found much inspiration, love and gratification by being blessed with such a special little girl! Her kind spirit and determination is remarkable! We received a very heart warming and tear jerking letter the other day from David's Grandpa and Grandma Loveland. Enclosed with the letter was an extremely moving and uplifting poem, that not only brought a smile to our faces but a few tears to our eyes! Thank You Grandpa and Grandma Loveland for always thinking of us! Enjoy the poem....Our love David, LeeAnn & Liliana Sue." Written by, LeeAnnn Loveland.

The poem was written 50 years ago by Edna Massimilla, when their daughter was born with Down Syndrome. She is now 90 years old and continues to write poems and songs especially for children with disabilities. The Poem reads as follows:

Heaven's Very Special Child
A meeting was held quite far from Earth
It was time again for another birth.
Said the Angels to the Lord Above-
"This special child will need much love."
"Her progress may be very slow
Accomplishments she may not show
And she'll require extra care
From the folks she meets down there."
"She may not run or laugh or play
Her thoughts may seem quite far away
So many times she will be labeled
'different', 'Helpless', and 'disabled'."
"So, lets be careful where she's sent."
"We want her life to be content
Please Lord, find the parents
who will do a special job for you."
"They will not realize right away
the leading role they are asked to play."
"But with this child sent from above
comes stronger faith and richer love."
"And soon they'll know the privilege given
in caring for their gift from heaven."
"Their precious charge, so meek and mild
is heaven's very special child." Edna Massimilla

Sorry for the lack of posts, I'm trying to keep up with things between home and work. Unfortunately, the blog takes the back seat somethimes. Please be patient and check back frequently because you never know when I will put up something new. Everything is great here. Lili still continues to amaze us every day. I will post more when I get a second. Hope you enjoy!

Ok, here is a quick update for the last couple of weeks:
It's been almost 2 weeks since our usual doctor visit. He decided that Liliana was doing so good that we would not have to come back for a whole month. At the visit we decided with the doctor on Lili's new CPAP weaning routine. We add an extra hour of CPAP every week until we reach the goal of CPAP from 8a to 8p. She is doing excellent so far. We also are trying to feed her over a shorter amount of time. We increased her rate so that she gets fed over an hour and a half instead of 2 hours. This gives us a lot more time to do things with her in between. She has been spitting up quite a bit, but personally I think it has nothing to do with increasing her rate. I think it's just because she is still gagging on her oral secretions. Lately when I see her start to gag, I suction out her mouth and that seems to keep her from spitting up...sometimes. We also had a visit this week with another one of Liliana's doctors. He will be helping us to improve Liliana's muscle strength and control among other things. She was so excited to be out of the house and see so many people for that visit that she decided to stay up the whole time. She didn't fall asleep until we were on our way home. At that visit, she also got fitted for new foot and hand braces. This was not a moment too soon as she is getting too big for her old ones. She continues to do new things every day. Her teacher was here this week and gave us a lot of suggestions on things to do to encourage her brain development. She has gained a lot more fine control over her hands. She is gaining more strength in her neck. Her legs continue to kick like crazy. And she continues to be one of the happiest babies in the world. Good for you Liliana, we love you so much!!!










I have to post this in case some of you do not read the coments posted. I put the pictures up for a couple of days without any explanation and got the following post, I'm not making fun of you Ann. I just think it is funny because I did not explain the picture.

"I love the picture with the hat! She looks so happy and she seems to be a ham for the camera."

Actually, I was being the ham that day. If there was a picture of me from that day you would have seen me with that "hat" on my head. It was actually Lili's shorts or whatever you call them. We had them off of her because she was hot and I remember thinking to myself, "I wonder if those would fit on my head". Shortly after I wore them, we put them on Lili's head and snapped a picture.

Update 6/11: I guess we do have a picture of me with Lili's shorts on my head.