Liliana Sue

So Much To Tell.....Well, Here's The Story

2009-08-04T03:02:00.005-04:00

For most you out there who know me, you know that I have overcome quite a bit in my short life. For those of you who are just getting to know me, my name is Liliana Sue Loveland. I was diagnosed with a type of muscular dystrophy at birth. Most of my doctors had low hopes that I would live a normal life. One doctor even told us I might not live. Well, my mommy and daddy were always positive and had high hopes for me. They talked to everyone they could to find out what they could do to help me. Well, 3.5 years later, my life is just about as normal as our family can imagine. Our hopes have been achieved and much more. I went from not being able to move a muscle at birth, to throwing tantrums and wiggling so much and so hard that my dad can barely keep hold of me. I required total ventilator support because my respiratory muscles were just as weak as the muscles in the rest of my body. I ended up needing a tracheostomy. I went home from the hospital at 3 months old on a ventilator. I couldn't even sit up unsupported until age one. I didn't start walking unsupported until age 3. However, during those times I focused on learning. I absorbed every book mommy and daddy ever read to me. I was talking around my trach at age one. I was reading my own books by memory at age 1 1/2. I knew my full alphbet and how to count to 100 before age 2. Today I can read just about any word in any book. I've been writing my letters for a while but do not quite know how to write them all yet. I can spell. It's gotten so bad that mommy and daddy can't simply spell out what they don't want me to hear because I will know what they are spelling. They figured out that they have to spell words backwards to keep me in the dark. It's only a matter of time before I fugure that out too. I've mastered using daddy's laptop and surf all my favorite sites. What can I say, I wasn't busy learling how to sit up and roll over and walk, it's only natural for my mind to want to be stimulated in some way. Anyway, even though I couldn't move, mommy and daddy were always pushing me to work whatever muscles I could. Gradually, my muscles strengthened, including my respiratory muscles. Mommy and daddy slowly began letting me breathe without the ventilator to work those muscles just as they had done with all my other muscles. I eventually did longer and longer times off the vent. It got to the point where I was off completely within maybe the last 6 months or so, there was only one last step. That step it to block the trach completely and force me to breathe completely around it. If I could do this effectively and prove to the doctors that I was doing just fine they could remove the trach completely. Well, that time came within the last couple of weeks. I spent 3 days in the hospital for observation and came home a new woman. I no longer have a tracheostomy tube. I no longer require ventilation or suctioning. And I'm doing amazing!!! The only thing I think about is I wish the silly hole would close up so that I could swim like a turtle. Anyway, in a round about way, I just wanted to tell you the good news about my trach. I just wanted to remember how much I have overcome and continue to overcome every day. If it weren't for the support of our family and friends, a lot of this would have been harder to achieve and I want to thank you all. I hope you enjoy my latest pictures and their breif descriptions.

I enjoy shooting hoops as you can see. Picture 4 is me posing pretty. Luvin' the cat in #5.

Gettin' silly with the letters...now you see me, now you don't. #10 is a fruit salad I made for mom.

Pictures 11 and 12 show the first day that daddy capped my trach, forcing me to breathe completely through my mouth and nose and not my neck. Mommy and daddy were a little nervous before trying but quickly relaxed when they saw that I didn't even skip a beat. In fact, I loved it! I could talk louder and made all kinds of funny noises I couldn't make before.

16-18 show my love for the playground. Also note how well I am walking on my own these days. I stumble, but haven't fallen in a long time. Mommy and daddy are giving me a little more breathing room without having to worry so much. It's nice for all of us. 19 is me and my cousins at Crossroads Village. My grandma took us all there to ride the train because she knows how much I love trains. It was a blast. 20 is me and daddy on the train.

21 Thanks Grandma! 23 & 23 Train pics. 24 Me and my cuz Zach "roller blading" 25 MY FAVORITE!!! Daddy took me on the best carousel ever. I rode the black horse. It was so fast that daddy could barely hold me or even stand up. He was nervous for both of us. For me however, pure excitement! I began to cry when it slowed down because I didn't want to get off. I quickly cheered up when daddy said we can go again. I balled my eyes out when it slowed the second time and daddy said that was it. Daddy broke down and let me ride one more time but he had to convince me not to cry if we went on a third time. We rode a third time and I was sad to get off but handled it much better. For weeks on end if you asked me what my favorite part of today was, I would say "the black horse".

27 The Vest. Mommy and daddy got me a vest that shakes me up to help me clear my respiratory secretions. 28-30 My recent trip to South Haven.

More South Haven pics.

36-38 More South Haven. 39 & 40 At the hospital to get my trach out.

Still at the hospital.

46 & 47 Yeah, we're leaving the hospital...and with no trach!!! I'm so happy I could play the drum. 49 & 50 Big accomplishments lead to big changes...I got to move into a new room. This is the original room mommy and daddy planned for me. When I was born though and needed a lot of care the made me a second bedroom on the main floor where I could be close to the nurses.

Last but not least, the most beautiful cowgirl ever and a beautiful pose.

Bunch Of Pics

2009-05-27T10:01:00.036-04:00

The text for this post has been a long time coming. I fugured I better write something before the next one comes out in the near future. Summer is here and I'm loving it!!! Was getting out to the playground quite a bit. It has been a little too hot lately for me to stay out too long. I get overheated really quick. I've had a couple pretty bad allergy spells which keep me indoors too. Anyway, these pics are quite old but I'll fill you in on the details.

As you can see in picture one, I can be quite organized when I want to. I like to line up all of my animals. However, when I don't feel like it (which is about 99% of the time) my toys are scattered all over the house. Mommy and daddy really have to push me to pick things up when I am done. Pictures 2-4, not much to say. Just me being me. Picture 5, you can see how mobile I am now. Mommy and daddy can give me a lot more freedom without having to worry as much about me falling.

I finally got to fly a kite a while back. I love my octopus kite! I like to get it out and sit on it sometimes in the house. It's pretty crazy outside. It likes to swoop around and dive at me sometimes. Daddy let me hold the string but if he would have let go, that crazy kite would have probably taken me away. Picture 10 is my St Patty's day hat.

Pictures 11-15 are me playing in many different ways...playdough, tenting, drumming, cooling my fanny on the air vent, and creating.

My cousin Logan came to visit me a while back. We play so good together although he definitely has a lot more energy that I do. Two words...wild man. I love it though. That's me and him snuggling in bed and creating some artwork together. The next pic is me multitasking. Gotta save time and put on my makeup while I potty. I got the potty thing down. I do have the occasional accident when I get too involved with playing sometimes. The next picture at the Rainforest Cafe. Aunt Becca and the kids treated us to dinner. That was nice of her and we had a blast! In the next few pictures, I'm impersonating a pig, chicken, and cow. I look just like them don't I.

Daddy made me get a job already. You can see I'm doing some business from home. At least he lets me use his laptop. I've got that much going for me. The next two are easter pics. That silly bunny sure was good to me. I wasn't that excited about Easter until mommy and daddy told me the Easter Bunny had come to the house and left something for me. I got so excited and "ran" to the front door to see if he was still out there. Don't I look so pretty in my dress.

The next couple are just a couple of cute shots of myself. I'm quite photogenic, don't you think. In the next one, you can see a boo boo on my head. That was from my last big fall. Tripped and fell flat on my forehead. It split wide open and bled like crazy. I've been doing much better with walking. Mommy and daddy aregiving me more freedom but still keep close by so that doesn't happen again. Next picture...Thumbs Up. One of my nurses bought me a gardening kit. We planted the seeds as a family and have been watching them grow ever since. They are huge now. Now we're just waiting for the flowers to bud.

I've been put putting a couple of times. I love to golf. Look at that form. I could go pro someday. The only problem is that I take one shot which doesn't go very far. Then I pick up the ball and place it somewhere near the hole. Then I hit it in. It's weird, a lot of holes I end up with a 2.

I continue to get better with my reading and spelling. Out of nowhere I like to spell things. In the next picture, the word of the moment was Big Bird. After that, a few more cute pictures. And last but not least, my other favorite sport...baseball. I hope you all enjoyed the update. I hope you are having a great summer. Hope to see some of you soon!

Hurry Up Spring!!!

2009-03-12T03:59:00.012-04:00

Alright winter, move over! I'm ready to get out and have some fun! Not only is it too cold to go out, but winter colds are affecting my life indoors as well. I just got over another illness and have had enough already!!! I had some kind of stomach illness for almost a week. Vomiting and diarrhea are no fun and had me so worn down that I could barely stand on my own, and didn't even really want too. I did a lot of sleeping, reading, sitting around playing games, and watching TV. I'm glad it's over and hope I never go through that gain. Anyway, I'm better now and hoping every day for warm weather so Daddy and I can go out and fly a kite.

As you can see by my adorable pictures, I continue to strengthen every day. I'm up and around and very active. The first picture is me and daddy lounging around after a long day of play. I'm still such a snuggler and thrive on mommy and daddy's love and affection. Picture 2 is an action shot. It is one of my favorite activities. It's called flopping and it is so much fun. First you get yourself a couple of big pillows and then you flop. Some times I even flop on mommy and daddy. I still like to practice my ballerina moves as you can see in image 3. Picture 4...I still love to read. I read my own books these days. Grandma was probably reading to me in the above picture, but a lot of times I will read my own books to mommy and daddy. Grandma and grandpa K. bought me a dress up costume as you can see in image 5 & 6. How cute am I!!!

Image 7, just lounging around again and looking so pretty. Pic 8...Look at my beautiful hair. I'm a whiz at using the computer these days. I'm still learning a few things but wireless routing is no problem for me. I surf the web and probably use up more bandwidth than mommy and daddy combined. I'm still working on writing my letters as you can see in images 9,10,12,13.

Picture 11...I always have to have my tongue on something. Daddy tries to copy me by touching the same things with his tongue and I think it is absolutely hilarious. Pic 13...I've learned how to write a lot of my letters but still need to work on a few. Daddy wrote the word parrot and asked me i knew how. You can see my attempt is spot on. The only thing I was unsure about were the r's. Daddy made the little boxes for me to write in because I like to make big letters and the whole word would have never fit on the board. Look how well I stayed in the boxes.

Pictures 14 and 15 are from valentines day. I got all kinds of neat things but was more interested in wearing my basket on my head. Picture 16 shows a snowman mommy helped me make. We had lots of fun making it. I think together we are the most creative people in the world. I know it seams like I lounge around a lot, but really I am very active most of the day. Pictures 17 and 18 are me lounging around again and hanging out with the cat. She's such a silly cat, I can't even begin to tell you how sill she is.

Images 19 and 20, trying to make some money for the family. I'm working on my artistic skills in the hopes of selling some of my creations some day. Mommy popped some popcorn for me one day. It was so fun to watch coming out of the popper. Even more fun was making a mess with it. You can see the results in the next two images. I want to be just like my parents when I grow up. You can see how I want to be like my daddy in the next two images. We were looking at venus through daddy's binoculars and I decided to get out my own and see what I could see. Of course, everything looks so small in mine. Daddy says it's because I always look through them backwards, I tend to disagree and keep doing it my way.

I don't know how I got it in my head but I've been talking about flying a kite with daddy all winter long. Daddy found me an awesome kite and we are waiting for the weather to warm up so we can see what all the fuss is about. I was so excited when daddy showed me the kite that I didn't know what to say. I ran around wide eyed talking 100 miles per hour. Doesn't it look so awesome!

Winter Fun

2009-01-22T02:02:00.021-05:00

Well, Winter is in full swing and here is what I have been up to. I watch SpongeBob 24 hours a day. Not really! I've seen about a hand full of episodes in my short life and I sure do love that funny little square guy. Notice my SpongeBob balloon in picture one. Just in case you forgot it is winter, pictures 2&3 are a reminder. We've got some snow piles outside more than twice my size. Picture 4 is me flirting with myself in my mirror. I got to meet Santa Clause this year. Daddy asked me if I wanted to sit on his lap and I said no. However, when daddy brought me up there, I was just fine. I asked Santa to bring me a yellow flower for christmas. Picture 5 is me and santa.

If you go to pictures 7&8 you can see my presents from Santa Clause. He got me a train set and a trampoline and left me a note on each that had a yellow flower on it. What a guy! Picture 6 is my cousin Logan being a goofball. I got to see him a couple of times over the holidays and we sure had a blast. In pictures 9&10you can see that I was more interested in being a present rather than getting one. Well, that was just for a minute and then I wanted the presents.

Picture 11 is of my great grandparents. I sure do love them! Aren't they a lovely couple. Picture 12 shows one of my gifts from Nana and Papa. They know how much I like to draw and color. One side has a chalkboard and one side has a place to paint or use dry erase markers. I love it and have been practicing my art as well as writing letters and words. Picture 13 is my new cousin Landon. What a cutie pie. 14 is just a cute shot.

Number 15 shows how I have been working on my letters. See how well I can draw a G. Just kidding, it's an A. The other day I wrote the word PIG for daddy, he was so proud.The next one is one of my pieces of art. Believe it or not, I am a musician too. If you don't believe me, check out picture number 17. I can make a lot of noise with my trumpet or flute or horn, whatever I decide to call it for the day. When I go on my potty, which is not very consistant, I like to have my reading material as you can see in image 18. 19 - I know halloween is over, but I still like to dress up in my princess presto costume.

In number 20, I'm using my binoculars. If you didn't notice, I like to look through them backwards. Picture 21 shows me practicing my letters on my chalkboard. 22 - What happened to the other half of my diaper??? 23 - Surprise!!!

In the next set of photos from 24-32 I am gtting bundled up to go outside. You can also see me playing out in the snow. I had a lot of fun. I like to make footrints in the fresh snow. I even got to ride on a sled and had a blast. To finish the day, I made a snow angel. When I stood up and still had snow all over me, I panicked a little. All in all, it was fun and I would do it again in a minute.

The last two pictures show some of my ballerina moves. I love to practice these moves often and mommy and daddy sure get a kick out of it.

Happy 3rd/30th Birthdays

2008-12-31T01:44:00.023-05:00

Well, here are the long awaited birthday pics. We had a grand old time! A lot of my cousins were able to make it but because of a snowstorm and cold season some people had to stay home. It's ok though, they were there with me in spirit. The pictures below show the days events. Mommy and daddy gave me some of my presents in the morning before all the excitement began. You can see me with Hany Manny in picture number one. He is a character in on of my cartoons that I watch. I sometimes walk around carrying my tools saying "I'm Handy Manny". Pictures 2&3 show mine and daddy's birthday cakes. We share the same exact birthday in case you don't know. I just love trains and when mommy asked me what kind of birthday party I wanted, I said Thomas the train. Picture 4 shows me playing with some of the kids. 5,6&7 are me opening gifts. They sure were great gifts as you can see how the kids are flocking around me. Picture 8 is of my cousin Logan. We are the same age. He just loves trash and anything to do with it. He picked up all the wrapping paper for us. I hear he even got a dump truck toy for christmas and a real garbage can. What a lucky boy he is! Picture 9 is of all the kids getting ready for pinata time. It went by age, but I was up first. Good thing daddy practiced hitting the pinata with me ahead of time because it sure is not easy to wack at that thing. 10-16 are all the kids taking their turn at the pinata with number 16 showing the kids chasing the candy that has finally broke free. Me personally, I was scared as heck by how hard those kids were hitting my favorite bird. When the candy spilled out, I didn't knwo what to think. Number 17 is me trying to blow out my own birthday candle. I am getting good at blowing but still do not have enough hot air to blow the candle out yet. 18 & 19 are the kids and I watching a movie and having lots more fun. Number 20 is not the day of my party, but it is of some hats that were worn by some at my party. I got some money for my birthday from a couple of different people. Mommy and daddy used the money to buy me a train table and some train track. I absolutely love it as you can tell by my smiles in the next couple of pictures. It was a perfect day. I wish I could do it every day. I guess I'll just have to wait until the christmas eve celebration and 3 christmas celebrations that I have in store for the end of the month. I hope you enjoy the pictures. For most of you this is not an update, but for those of you who don't see me, I am walking completely on my own now. Daddy bought me some new walking wings for christmas because my other ones were getting pretty raggety. We haven't had to use the new ones yet and probably won't ever have to. It's too bad that mommy already restitched it to fit around my peg tube or else we could return it. Oh well.

Latest Pics

2008-12-04T02:36:00.010-05:00

Here are a few pics to hold you over until I post some images from my recent birthday party. Things have been going well. If you haven't heard, I had a really bad cold. I am much better now and was well just in time for my birthday party. Good thing, I had a blast with my cousins! There is a good chance I had my first bout with RSV. My nose was draining water like a faucet and I was coughing non stop. I had a couple of low grade fevers. To give me a break from the runny nose and coughing, mommy and daddy had to give me benadryl pretty much around the clock. Without it, I probably wound not have gotten any sleep. I went to the doctor and got some antibiotics early in my infectious process. Two days later when the antibiotics were not working and my illness progressed to a respiratory rate of over 50 (on my vent), a heart rate over 150, a fever, requiring oxygen, and difficult to keep awake despite 14 hours of sleep, mommy and daddy knew it was time to take me in. The ER said it was most likely viral and tested me for RSV although no one ever gave us any results. They also did a chest x-ray which was normal, did some deep suctioning and gave me some breathing treatments. They then sent us home stating that they could not do any more than what we are already doing for her at home. I ended up sleeping just about all of the next two days away before I was getting back to my normal self. Mommy and daddy were exhausted from all the extra care I needed, but they did an excellent job of getting me better. Poor daddy had less than 10 hours of sleep in 3 days. Anyway, I'm back to normal now and enjoyed an excellent third birthday. Enjoy the pictures below and keep an eye out for by birthday pics.
I'm such a big girl now and do many big girl things as you can see. Picture one shows me drinking like a big girl. Pictures 2 and 3 show how I painted my finger and toenails like a big girl. I can even do push ups like a big girl as you can see in pictures 4 and 5. You can see how strong I am getting. I can push my upper body up off the ground holding my head up and everything. I'm even trying to crawl around all by myself. I'm such a snuggle bear. I just love to snuggle with my mommy and daddy. Out of nowhere, I will give them big hugs and say "I love you mommy or I love you daddy". Picture 6 is me snuggling with daddy at the computer. I've gotten so good at playing my games on the computer it's rediculous. I look like an adult when I am playing. I fugured out how to use the touch pad on daddy's laptop and can find my own websites and pick and play games all by myself. Pictures 7-12 were my first out to dinner experience. Mommy and daddy took me to Rainforest Cafe. I absolutely loved. I talked about it for a month and talked about going back just about every day. Picture 13 shows one of my butterflies that I got from the resturaunt, do you see how it landed right on my nose? In case you don't know, I absolutely love trains!!! Picture 14 shows me playing with one of my many trains. I love trains so much, I even had a train theme birthday party. Picture 15 shows my playing the computer like a big girl with a couple of my cousins, Abigail and Gabriel. I love to sit in boxes or whatever else. Pictures 14, 16 and 19 are good examples. Picture 17 shows a doll that I got from one of daddy's friends at work. The doll talks and eats and goes to the bathroom. I love her lots. Thank you Shannon! The next picture is just my beautiful self. I hope you enjoyed and don't forget to keep an eye open for my birthday pics. Love you all lots! Take care of yourselves.

HAPPY HALLOWEEN!!!

2008-10-31T21:42:00.005-04:00

Too Smart!!!

2008-10-30T02:06:00.002-04:00

I know Lili usually writes the posts on here, but I (Daddy) just couldn't resist writing this one to tell you how much she amazes me. Also, I'm writing it because she doesn't like to brag too much about her smarts. Anyway, the other day we were just sitting around playing. Lili was playing with her letters and numbers that you see in the picture below. She wanted to lay down and play with them so I let her lay down. She would pick up a letter or number and say its color and what it was. Hearing her do this intrigued me, I just knew she was filing that information away somewhere. Since she was laying on her back, she could not see the letters and numbers unless I handed her one. For no reason at all, I said what color is the c. Sure enough she knew what color it was without even looking. Not only that, there are big letters and small letters which are different colors. She knew what color the big C was as well. I named off about 10 different letters and numbers of different sizes and colors and she recalled every single color without delay or effort. I was just absolutely amazed! It's not like I sit with her every day and go over letter colors. We have never practiced this. From all of her playing she has just remembered sizes, colors, and shapes and is able to use her photographic memory to recall it. She never seizes to amaze me!!!

Nobody Puts Baby In The Corner!!!

2008-10-09T03:55:00.035-04:00

I know, it's been too long. Too much to do, so little time. Summer has been great. I hope you all have been having as much fun as I have. I've done lots of things since I last wrote. I had lots of good pictures, but unfortunately have lost quite a few in a computer failure. You can see my latest pics below. Some of the best ones that got lost were of the Armada Fair that mommy and daddy took me to. We went and saw lots of animals. I saw horses, pigs, goats, chickens, bunnies, and much much more. I even got to touch one of the Budweiser Clydesdales. Probably my favorite part was walking around in a little petting farm. I got to tough a duck, a bunny and even feed some goats. The goats were sooooo funny when they talked. Anyway, things are going great. I do a little more time off of my vent now. I'm off all day and now mommy and daddy keep me off for a couple of hours while I am sleeping. It seems as if there are just no limits to what I can achieve. I continue to improve my reading and spelling skills. Daddy took me to the store the other day (I love to go to Meijer) and we were walking down the toy aisle. I said "I wanna hold that one". Daddy said "What one?". I read the name on the box all by myself and he knew exactly which one to get me. It pays being smart, I get whatever I want. I've started going outside of the house to school to see my therapists. I've only been there a few times so far and have already learned so much. One of my teachers has taught me how to get myself onto my knees and stand up from a kneeling position with some help. It will only be a matter of time before I will be standing up by myself, then mommy and daddy will really have to keep a close eye on me. I only need very minimal assistance when walking these days. About 99% of the time I am just fine, although I do still have the occasional stumble. My third birthday is just around the corner. Daddy is going to be 30 on the exact same day. I don't know what we are going to do yet, but I'm sure it is going to be fun. There is a little story behind the title of this post. I'll keep it short because I could probably write a novel about it. We recently found out that the nursing agency that we have been with from the start that provides my in home nurses is closing our case and for no good reason. They have been nothing but difficult with us from the start and we have no reason to believe that it is anything but personal. Try to imaging an agency telling you to find another agency to fill some of the empty shifts that they are not able to fill. Next imaging that you found that second agency and that you finally have a chance to live a somewhat normal life and spend some time as a family. Sounds kind of nice doesn't it? Well, next imagine that the first agency starts to drastically cut nurses from your case assuming that the second agency can fill the newly created holes just like that. Finally, imagine that the first agency closes your case completely several months later and the second agency is still not able to fill the empty holes for reasons that are beyond their control. What does this lead to...sometimes daddy watches me all night, does not get to spend very much time with me during the day because he has to sleep for 4 hours and then work 16 hours to make sure I have a roof over my head. If he does not have to work he still needs to get some sleep during the day after watching me all night. It also means that if daddy has to work and we have no nurse, mommy has to take care of me at night after watching me all day. It's not easy to even get close to a full night's sleep if you have to watch me at night. All three of us are rarely together. If me and mommy go and do something fun, daddy misses out. If me and daddy go do something fun, mommy misses out. Is it too much to ask to have a somewhat normal family life? Some people, specifically the first nursing agency mentioned above (someone who is supposed to be helping us) simply have no understand of what we go through, and they could care less. I think I wrote more than I wanted to, but I was just feeling the moment. As far as the title of the post goes, I feel that the nursing agency mentioned above has backed our family into a corner and left us defenseless. Thankfully, there are people out there that care. We have been in contact with a couple of other agencies who seem interested in helping us out. I sure hope things work out!!! Anyway, enjoy the pictures I have posted. I will try not to take so long to post again next time, but I am not making any guarantees.

Picture one is me kneeling. I love to kneel now that I have learned that it is a step in the direction of me standing up on my own. Picture 2 is me in my new bed. I lost some pictures of the bed itself but you get the idea. Mommy and daddy stored the crib and got me a big girl bed. I loved sleeping in a big bed sooo much when I was on vacation in Lexington, Mi. Mommy and daddy got me the big girl bed shortly thereafter. There is so much more room for me to roll around in my sleep. I'm a wild sleeper. Picture 3 is me playing with my pet rat. Just kidding. It's my cat. I love her. She got out of the house for several days and was nowere to be found. Mommy finally found her and brought her back home. I sure missed her. Picture 4 is just a cute pose. I'm not sure what I was doing, you'll have to ask mommy. Pictuere 5 is daddy reading to me at bed time. Now that I have a big girl bed we can snuggle in bed instead of on the floor.

Daddy taught me how to play steam roller. If none of you have ever played it, it is a blast. You just lay down and roll over each other and say steam roller. I can't quite roll over daddy, but laugh when he rolls over me. Don't worry, he doesn't put a lot of weight on me. Pictures 6-8 show us in action. Picture 9 shows one of my bad hair days. It's hard to manage all of this beautiful hair. Picture 10 shows my hair all made up pretty.

Picture 11 shows me in one of my pretty dresses. Look how grown up I am. Picture 12 simply says "Talk to the hand!". 13 shows my creative side. 14 shows me spelling and arranging my letters in order of the alphabet. Another one of my progress stories is that I now use big girl cups. I love to drink water and cafiene free sun tea. Picture 15 shows me drinking from one of my cups. The only problem is that I like to purposefully dump it out on the floor. Good thing I'm also learning how to wipe up after myself. That's all I have for you now. Please keep your eyes out for more.

Summer Time, Summer Time

2008-07-23T01:41:00.098-04:00

What a fun summer this has been so far. As you saw in my last post, I have been much more mobile making trips as far as Monroe. Well I've got even more news for you this time. I've had my first overnight away from home. Not only did I have my first overnight, but it lasted for a whole week. Mommy took me on a vacation with Grandma, Grandpa, and all of my aunts, uncles and cousins on the Kemler side of the family. We went to beautiful Lexington Michigan. It is north of Port Huron in the thumb. We had some cottages on lake Huron. It was a fun time. You can see some of the pictures below. I'm getting really good at walking. I do still stumble every now and then but it has become a lot less frequent. Mommy and daddy still use my walking wings so I don't really hurt myself on those occasions where I still stumble as I am not strong enough to catch myself. I continue to learn more and more each day. I'm getting so smart that if mommy and daddy try to spell words around me so I don't know what they are talking about, I will sound out the words and most of the time I get it right. My latest development is that I am beginning to read words. Mommy was showing me some books that I had never seen and I was reading the names of the books before I was told what they were. (Don't forget, I'm only 2 1/2 years old) I was playing with a thing of Tic Tacs and daddy pointed to part of the label and asked me what it spelled and I said "wintergreen". No one had told me that they were wintergreen Tic Tacs. Who knows what I will learn next. Anyway, here is a quick description of the images below.

Pictures 1 & 2 are me being my goofy self. Aren't I too darn cute! Picture 3 is daddy helping me climb the stairs. That is something that I can't do on my own yet, but as I get stronger I get closer and closer to doing it on my own. Picture 4 shows me dolled up in one of my favorite hats. It is bigger than me but don't I look too cute in it? Picture 5 is one of my last visits with my therapist Lauren. She was teaching me how to and that I could bend over to pick things up. Now that I realized I can do it I do it all the time although it does take a lot of effort.

Another cool thing I learned is how to drive a bus. Check me out in picture number 6. I don't even have a license yet! I'm still just eating sweet potatoes by mouth. I just don't want to try anything else. Most of my nutrition still goes through my feeding tube but I do like to eat by mouth. I used to feed myself pretty good but have regressed a little bit. I like someone to feed me every now and then. I think it's the attention that I like. I like to be silly all the time. Picture 7 shows me being silly while eating some sweet potatoes. Picture 8 is a funny one. I always see mommy and daddy and even my nurses wearing gloves for suctioning me. Well, I want a part of the action. I want to wear gloves too. I ask for a glove all the time and make someone help me put it on. If daddy tries to give me his used glove I ask for a clean one. Picture 9 above and 10 below is me and mommy wandering the park across the street from our house. It's nice to have a park so close to home.

Picutre 11 is me trying to do some more potty training which doesn't happen all that much anymore. I do still go like a big girl every now and then though. I still always have to have a hat as you can see in picture 13. Picture 14 above and 15 below shows my pretty pink nail polish. Mommy painted my toenails for my vacation. I was a little unsure at first, but it quickly gew on me.

Picture 16 and 17 are of my cottage in Lexington where I spent a whole week with mommy and the Kemler family. What fun we had! Mommy brought my swimming pool which you can see me playing in in picture 18.

Picture 19, still playing in the pool. Some of the other kids decided to join me. Later in the week, we got a larger pool so some of the other kids could get in with me and I had a lot more room to splash around. Picture 20 is of the inside of our cabin. They were pretty nice. Grandpa bought an air conditioner just for me to use on the trip so that I would be comfortable in the cabin. What a guy!!! There were lots of outdoor things to do there. Pictures 21 and 22 show me playing in a toy house with some of my cousins. Picture 23 shows me cooling off and watching a movie in the cabin. It's exhausting running around as much as I do outside on those hot days.

The next several pictures show some of the outdoor activities we enjoyed while on vacation. Picture 24 shows how close we were to lake Huron. You can see some swings by the water which I enjoyed rocking on. Picture 25 shows us playing with my letters at one of the picnic tables. They are so fun to play with even the adults got involved. Pictures 26 through 29 show one of my favorite activities while on vacation. I just loved to throw rocks into the lake. I loved even more when everyone else threw the really big ones so I could see and hear the big splash.

These last couple of pictures show a frog that daddy caught for me. Daddy likes to find bugs outside for me to see. He will catch them one day and we release them the next. So far, he has caught me a caterpillar that turned into a moth, several frogs, and a praying mantis. It's fun to watch them crawl away.

Summer Blast!

2008-06-08T01:55:00.031-04:00

Summertime has come and what a blast I am having!!! Picture one is of me and a couple of my friends hanging out at the park. I could just swing for hours!!! In fact, I made my dad push me for a whole hour one day. We both had lots of fun. Pictures 2 & 3 are of one my trips to the local library with mommy. I love books and this place has more books than you can even imagine. We check out a few and take them home. When it's time to return them, we check out some more. Picture 4 shows how good I am getting at standing. Mommy and daddy are giving me a little more space as I get stronger but they are still close by for those times that I do stumble and fall. Picture 5 shows how observant I am. Daddy was changing the batteries on one of my toys and before he could get them in I had the cover back on and was trying to screw it back together. I had watched how he unscrewed the screw and immediately tried to do it myself.

Picture 6 shows how much I love Mommy's cat. I look for her and call for her every day. I try to give her so many treats throughout the day that mommy and daddy have to cut me off. Picture 7 is me swinging at the park again and having a grand old time. In picture 8, I'm playing in a tent that my grandma bought for me. Everyone just loves to spoil me! Picture 9 is me being just being a cutie patootie. I've got such a personality these days that I can make just about anybody laugh. I can also be quite the stinker too! Daddy took some vacation time in the past month so I got to do a lot of fun things. We went to grandma and grandpa's house for the day. Picture 10 shows me sitting on grandpa's tractor.

We went to Nana and Papa's for a day. Picture 11 shows me swinging with my cousin Logan and distant cousin. Pictures 12-14 show our trip to the zoo. I just love turtles and had to sit on him for a good amount of time. I did not want to leave him. We got to see the polar bears playing. They put on quite a show. Daddy was pretty excited because he says they are usually hiding when he goes to see them. We had a lovely day at the zoo. Hardly anyone was there and the weather could not have been better. My favorite was the Hippo, he really made me chuckle! If you look at pictures 15-18 you will see a progression of me walking on my own. I am getting quite brave and just take off sometimes on my own. Mommy and daddy used to be able to set me at my table to play and walk away and get my meds or feeding ow whatever else. Now if they try that, I might just get up and walk out of my room to look for them. I have still had my share of falls because I am still working on my balance and strength. Mommy and daddy just have to keep using my walking wings for the time being, although they really don't put any tension on the safety straps unless I am falling.

Pictures 19-21 show my potty training efforts. Mommy said I had to post number 21. One day out of nowhere I sat on the potty for daddy but did not go. The next day I sat on the potty and went for mommy. After that I was using the potty multiple times a day. I've lost a little interest in my potty but still go ocassionally.

I love my paints and love to make a mess with them. Things are still pretty clean in picture 22. For a while there I would throw a little bit of a fit when it came time to take a bath. One day daddy hopped in the tub with me to play and now I ask to take multiple baths a day. Picture 23 shows either our first or second bath together. We have lots of fun. I usually win the splashing contest! Picture 24 shows me spalshing my legs in a big pool. Daddy was still on vacation and we took another day trip to Nana and Papa's to hang out with some extended family members. We had lots of fun.

Picture 25 shows my favorite cat once again. We were playing dress up. I'm surprised whe was so cooperative about wearing my hat. She's usually running away from me while I chase after her. The last picture is of me and my caterpillar that daddy brough home for me from Pennsylvania. We had him for a few days, fed him some juicy leaves and he already spun himself a little coccoon. I hope he comes back out to play soon!

I hope you all are having as fun a summer as I am. I hope to see some of you real soon!!!

Some Spring Updates

2008-04-22T04:12:00.020-04:00

Spring time is finally here and the weather has allowed me to get back outdoors to some sunshine and fresh air. What a relief! Walking around the house gets kind of old after a while. Things are going good in our family. I'm approaching the 2 1/2 year mark and getting bigger every day. I continue to strengthen and refine my motor skills and am becoming quite good at walking. I have been getting off of my vent most of the day starting when I wake up. Usually I go back on my vent at nap time but am back off again in the afternoon and evening. It gives me a lot more freedom to roam about and be a normal kid. See picture coments for further updates.

I still like to draw with my crayons and markers. I just can't resist putting the marker caps on my fingers, and look how I am standing with no hands. When I get tired I usually get cranky, but sometimes I just get goofy as shown in picture 2 and 4. When I'm tired I usually lean to whatever is closest. Sometimes it's mommy or daddy but in these cases it was the crack in my high chair and my leg. Yes I said my leg. I can sit on my butt with my leg straight out and rest my head on my calf. It's actually quite comfortable. I was simply relaxing and playing with some puzzle pieces. Picture 3- Daddy decided to finally put me in my flinstones car one day and man did I have a blast. I didn't want to get out.

What else can I say about picture 5 except tha I was doing some research on the laptop and taking some notes while wearing my sunglasses. Picture 6 shows me hanging out with a couple of my buddies. These are the two sons (D & G) of one of my former nurses. We have a lot of fun together. Picture 7 shows some of my Easter gifts. Picture 8 is our Easter celebraion with the Kemler family at uncle Scott and aunt Brooke's house. I got to play with a lot of my cousins and play with a puppy as well.

Picture 9 is of me and another one of my buddies. Daddy's cousin Tommy and wife Lee brought over their son Luke to play with me. We had a grand old time. I think I learned a lot about walking from him. 10 & 11 are jus a couple of cute pictures of me. Picture 13 is grandpa showing me how to drive his convertible. Picture 14 is of me playing with a walker that our neighbor gave to me. I can sure get around with that thing and I get to play at the same time.

Picture 15 is another thing that has been helping me to get my balance. It is called my "Walking Wings". It velcros around my chest and has a couple of straps on the back for someone to hang on to for my support. After I lost my balance and fell a couple of times hitting my head mommy and daddy thought this was a good idea. Now instead of holding on to someones hands, my arms are free to use for balancing. I can walk circles around the entire house with very minimal support. Once in a while I still loose my balance and the Walking Wings have saved me many bumps and bruises. The last picture just shows me starting to drink like a big girl...sitting up. Next I need to learn how to drink from a normal cup. I still like to eat my sweet potatoes and nothing else. I don't know what else to tell you all so if you have any questions feel free to ask. Talk to you all later!

What's Next???

2008-03-13T02:27:00.044-04:00

What a crazy and eventful time we have had since I last wrote you all. I'm sorry I have not written sooner, but things have been very hectic around our house and I have been waiting for things to settle down a little bit. The pictures tell my story of what has been going on. Let's take a look, shall we? You're going to see a lot more pictures of me standing up and walking around. I don't care to sit down much anymore unless I'm deeply involved in something. I always ask to walk. I just grab a hold of someone's fingers, whoever is closest, and off we go. I still can't quite navigate by myself yet, but I'm getting closer. I get a little ahead of myself sometimes and would fall flat on my face if it weren't for my trusted support person. Pictures one and two show me standing unsupported. If I'm on a chair or something that already has me half way to a standing position, I can get to a full standing position on my own, and do so often. If I'm on the floor, I still need help standing up, but once I'm there I can stand all by myself. I get a little nervous and don't like to stand unsupported for too long, but some time I get so involved reading my books I don't realize that I stopped leaning on my book case. Picture 3 shows me standing at the window. I like to look out and see what is going on out there. Sometimes daddy shovels the snow and throws some at the window and I chuckle. Have I told you how much I love lolipops??? I love lolipops this much!!!!!!!!!!!!!! I love them so much that I leave a little bit of sticky every where I go...on my table...on the windowsil...on the bookcase...on the floor...on my clothes...on daddy's computer...on my hands...on my face...in my hair. Have I mentioned how much I love lolipops? Pictures 4 and 5 show me enjoying a few licks. Pictures 6 and 7 are me and daddy playing on the computer. One day daddy started showing me some of the many pictures that he has taken over the years. I like to look at the planets and animals. I ask to sit in the chair every day so that can look at some more. Now daddy asks me what I want to see and we do internet searches to see what we can find. Picture 8 shows how much fun we had looking at pictures together. Notice our big smiles.

Toward the end of Febuary, our family was saddened by the loss of a very special person.

In Loving Memory of Frances L. Romans, Liliana's Great Gramma and LeeAnn's Grandmother
August 1, 1919 - February 23, 2008

"God saw you were getting tired,
and a cure was not be.
So he put His arms around you
And whispered, "Come with me."

With tearful eyes, we watched you
Suffer and saw you fade away.
Although we loved you dearly
We could not make you stay.

A golden heart stopped beating,
Hard working hands came to rest.
God broke our hearts to prove to us
He only takes the best."

If only each and every one of you had the amazing opportunity to meet my Grandmother! She was truly an inspiration and role model to all of her Grand Children and Great Grand Children. Although I miss her dearly and wish we had more time with her, I know that she is looking down and enjoying watching us from afar. I will never forget the way she hugged, the way she smelled and most of all, her ability to love endlessly! We love you lots Grandma-

March started out with another emotional event. While mommy and I were out for a car ride, we were t-boned by another vehicle. We were driving along minding our own businuss when another car pulled straight out of a parking lot and hit us directly in the side. She said she didn't even see us. Thankfully, although shaken around and shaken up a little, everyone was fine. The car as you can see would beg to differ. The main impact was on the passenger side rear sliding door...precisely where I sit in my car seat. Lets be thankful that it was a small vehicle that hit us and it was not yet traveling very fast. The van is currently being repaired and we can't wait to get it back.

In these next two pictures, I am looking at some pictures on my own. Daddy sets up a slide show and I hit a button to scroll the images at my own leisure. Most of the time the slow, outdated computer can't keep up with my fast paced clicks. The next picutre shows me teasing the cat. I absolutely love that cat. If she's not around I ask for her. When she is around, we exchange meows or I chase her about the house. The next seven pictures are from this year's Stride and Ride event. It was a blast! For some reason they always hold in on the same day as the time change so I loose an extra hour of sleep. Not to mention that I was awake for a couple of hours during th night. I had just fallen back asleep when Mommy and Daddy had to wake me up to get ready to leave for the walk. I was extremely tired all day but still had an amazing time. When we arrived at the mall, there was already a large crowd of people...hundreds. I was having fun watching all the different people and teams, ome of them in very unique and interesting costumes. Some of the volunteers were dressed up as well. My favorite was a turtle. I could not take my eyes off of him. I was smiling at him the entire time. Daddy and I walked over to him and he gave me a hug. When he walked off to see other kids I was following him as quickly as I could, with daddy's help of course. I followed him everywhere. See the turtle picture below. When the event started I got into my car that Papa rented for me. I enjoyed it very much and did not want to get out. We made several laps around the mall with all of the other walkers and finished about an hour later gathering with all the other walkers for the raffle and prizes. Acouple of our group members won prized. Our group ended up coming in second place in the amount of money raised per team. We only missed first place by a couple of hundred dollars. Thank you all for your donations!!! We were told the entire event raised over $100,000. How amazing is that! The third image from the walk is me walking around the mall with daddy's help. This is how I get around these days...most of the time. The next picture shows part of our decorations. After the walk, we hung out in the mall for a while. I got to go into the mall playscape with some of my cousins. It sure was fun. I got to sit on a hippo, and aligator, a turtle and a frog and I walked all over the place. The last picture is a couple days later. It just shows what I like to do with my marker caps. I'm very creative.

Thank you all for checking up on me! As you can see, we have been through a lot, but we are doing great. I hope that you and your families are doing fine as well. I'll see you all again next time.

MDA

2008-02-01T22:03:00.000-05:00

Donate To The MDA

It's that time again. This years Stride and Ride event is just around the corner.

If you would like to help support me and others like me then please donate to the MDA by clicking the following link. I thank you in advance for your support.

Click here to donate to the 2008 MDA Stride & Ride

Christmas and More

2008-01-20T05:02:00.000-05:00

Well, what a year. We've been through a lot together. Thanks for helping my in every that you have. I hope you all had a merry Christmas and a happy new year. December was quite a month of celebration for me. It started when mommy and daddy celebrated my birthday with me. Then we had a birthday party at my house with all my aunts, uncles, cousins, and grandparents. What a good time. Toward the end of the month, I celebrated Christmas with the Kemler family, then a different celebration with just mommy and daddy, and then one more with the Loveland family. What a great month. as you can tell by the photos below, I continue to improve. Here is a quick description of what is new in my life:

Picture one is me relaxing in my rocker listening to some tunes. I love music! Pictures 2 and 3 are of me decorating a house that mommy made just for me. I just had to add my own personal touch. Sometimes I go a little overboard and forget that I am supposed to be coloring the box and not my mouth and legs as seen in picture 4.

Picture 5 is me being my cute self. I like to flirt, usually with Papa, but in this instance with the camera. Picture 6 is me posing in front of our christmas tree. Mommy did an excellent job of decorating it! Mommy and daddy decided that it was time for me to start taking baths in the big girl tub. Picture 7 is me quacking at my rubber duck. If you ask me if I want to take a bath, I say no and put up a fuss. When I get in and start playing, I am as happy as can be. When it's time to get out, I say no and put up a fuss. Picture 8 is of my wonderful presents that I received at the Kemler family Christmas.

Picture 9 is the cookies and carrots I left for Santa. He finished the carrots and left a little bit of cookie behind. You'll never believe what he brought me. He left me my own kitchen set to play with. You can see it in picture number 10 and a couple of other ones. As you can tell in picture number 11 that I am starting to stand on my own a lot better. I still don't have the coordination to do it unsupported but I am great at using my arms to hold myself up if I am standing next to something. Mommy and daddy can hold me by my armpits and I walk to where I want to go. I'm getting really good at walking and the more I stand up the better my coordination gets. I still wear my helmet as you can see in picture 12. I even wear it when I don't have to. Sometimes I don't want to take it off for hours. As you can see I also like to wear my socks on my hands instead of my mittens. Picture 13 is me jotting down some notes before I typed up this post. It takes a lot of thought to come up with this stuff.

Picture 14 & 15 are of me at Nana and Papa's house for the Loveland family Christmas. They had a fun ball cage and rocking horse. Got spoiled with presents again. Picture 16 is me standing at my kitchen again. I just don't like to sit down much any more. I'm always up and on the move, with some help of course. Picture 17 is me eating my sweet potatoes. It is all I will eat, and I still ask for it about twice a day. Picture 18 is me playing the guitar. Daddy has been letting me strum his guitar and I enjoy it very much. He even plays me some songs because I love music so much. Mommy and daddy have even enrolled me in a music class that I will go to once a week and learn music with other kids. I will let you know how it goes. The last picture is me standing up once again. I'm playing with my toys in my dresser. If I keep it up, I will be walking in no time. Keep your eyes open for those pictures. Thanks for checking in on me. I hope things are going as well for you as they are for me. See you next time.

2 Years Old

2007-12-13T02:22:00.000-05:00

Well, a lot has happened since I last wrote. Thanksgiving has come and gone, winter has set in, mine and daddy's birthdays have passed, and now Christmas is knocking on the door. The pictures below are a good indication of what has happened over the last several weeks. Image one is me posing next to some Thanksgiving decorations. Wow, that was forever ago...at least it seems. It's amazing how big I am getting. I continue to get stronger as you can see in picture 2. I ask to stand up all the time. All I need is something close by to lean on a little bit as my balance is still off. I have no problem scooting around on my butt as you can see in image number 3. I not only move all around in my chair, but on the ground I still do circles and am able to move forward and backward using my legs and feet in a very unique way. Picture 4...I still like to put my legs, still my second set of arms) in the air. Picture 5 is me enjoying some sweet potatoes at the Loveland Family's Thanksgiving celebration. Yummy! Sweet potatoes are one of my favorite things to eat. Picture 6 is one of my Picaso inspired Mr Potato Head creations. I am very creative. Pictures 7 & 8 show my new helmet which I gladly wear since my little "bike" accident. Picture 9 is mine and daddy's actual birthday. It was a Thursday and daddy had to work, but we got to spend a few hours together and open some presents together. Mommy and daddy got me some books, a duck game, and a cat piano. I loved them all! Pictures 10-17 are mine and daddy's birthday celebration which was the folowing Saturday. All my cousins and aunts and uncles came to have fun. I got a lot more gifts and had a blast playing with my cousins. Mommy decorated with animals and I got a pig baloon which is still inflated and I continue to ask for it every day with great excitement. Picture 11 shows a silly picture of me and my cousin Logan. They were trying to get us to kiss. I cocked my neck back away from Logan and he mimicked my actions, Nana caught the funny shot with her camera. The next two pictures show me with my large stack of gifts and my cousins and daddy helping me open them. Thank you everyone for all the wonderful stuff. The next couple of pictures show my cake, created by Cakes by Stephanie of Monroe. They make the most wonderful cakes!!! Thank you Stephany and everyone who helped you make it! I've learned how to blow, and my cousins and I all puffed together to get the candles out. I had a cupcake to get messy with, but chose not to do so. The second to last picture shows my table for Nana and Papa. It is the perrfect height to help me stand. I ask to stnd and play at it every day. It has some chairs on the way which will be nice as well. The last picture shows just how well I have learned how to stand. Don't mind daddy, he had something on his shirt. Thanks all for checking up on me. Thank you all again for the Birthday wishes and gifts. I love you all and hope to see you soon!

My Little Emergency

2007-11-29T00:02:00.000-05:00

In case you haven't already heard, we had a pretty eventful day Tuesday. Before I tell you about what happened, I just want to let you know that everything is OK.

Tuesday started out well. Mommy was there when I woke up, daddy was home from work soon, and I had my usual visit from Lauren who is one of my therapists. My therapy went outstanding. We tried out my speaking valve when I was off my vent. It makes me talk a lot louder, helps with swallowing and such, and helped me keep my tongue in more which is what Lauren is trying to focus on. Daddy went to bed to get some sleep after a long 12 hour work shift and it would be me and mommy for most of the day. Mommy put me in my "bike" and we were having a great time. I was playing at the fridge when I dropped one of my letter magnets. I began reaching for it before mommy could get if for me and my weight shifted in such a way that the bike toppled over. Not being able to catch myself, my head hit the hard wood floor. My head hit hard enough so that I don't remember what happened. Daddy says that I was crying but I was pretty much unconscious so I probably shouldn't remember anything, which is probably why I was asking for my "bike" less than a couple of hours later. Anyway, being off my vent at the time, mommy picked me up and ran me to my vent to ensure I was breathing adequately. Mommy then yelled and ran and got daddy. Keep in mind that this was around 12:30 and daddy had only been asleep for about 2 hours. Daddy ran downstairs in a daze not knowing what was going on except that "Lili fell". Daddy tried to keep me awake as my eyes occasionally rolled back and I stared off into space and was not moving. In the meantime, mommy was calling 911. An ambulance and several rescue people arrived very quickly, placed me on a backboard and braced my head. As they were bracing me I was starting to wake up and was scared with all the strange people around me. They loaded me up into the ambulance. Daddy rode with me and mommy followed behind. As we started driving away I was getting back to my normal self. Due to all of the excitement and the long ride to St. John's hospital, I took my first nap in a week or more. We got to the hospital and I immediately woke up when the doctors started poking and prodding. We spent a total of 7 hours in that hospital just to have a CT scan which came back normal. Good thing daddy shoved some books in his pockets as we were leaving the house or our time there would have been miserable. Mommy had to drive back home shortly after we got there to get some things she forgot and that I would need for the ride home. She also brought me some more toys to keep me occupied. Once my back and neck braces were removed (quite a while into my hospital visit) I was asking to sit up and stand up and playing as if nothing had happened. I had my first CT scan which was neat but kind of scary. Good thing they let daddy stand right by my side and talk to me. I pouted a little bit but I was a big strong girl. I slept good that night, stayed up till almost 9:00 before doing so. Things were a little bit low key today because mommy and daddy wanted me to take it easy, but I feel fine and had a wonderful day with the both of them. Mommy bought me a helmet today and everyone is going to watch me even closer to make sure that this doesn't happen again.

Mommy and daddy were pretty shaken up but they are much better now that they know I am OK.

Frosty The Snowman

2007-11-18T01:15:00.000-05:00

Old man winter has been knocking on my door, but I refuse to answer it. Wow, how fast the months go by these days. It seems like I just posted on here not too long ago. A lot has happened since last post as usual. Halloween has come and gone and now my my birthday (and daddy's too) is just around the corner. Christmas will be here before you know it. Can you believe I am almost 2 years old. I can, I'm very mature for my age. I'm learning some manners. I say please quite a bit these days wen I want something instead of throwing a tantrum, although I do still have the ocassional tantrum. Mommy and daddy continue to stimulate my brain. Mommy and I go throught the alphabet every day and think of words for each letter. Daddy taught me the planets in a couple of days with very minimal effort. Now I can say them in order from Murcury to Pluto. Daddy says that some wierd people somewhere said that Pluto is not a planet, but we still think it is. I have been fascinated with my Baby Einstein Baby Galileo movie. It has all the planets and other cool space stuff. I ask to watch it multiple times a day although mommy and dady don't let me watch it as much as I would like to. My vocabulary continues to widen. I have a lot of my books memorized and daddy tests me to see if I can finish the sentences. Sometimes I just take over completely. I've learned a lot more animal sounds and I am sooo cute when I do them. As you can see below, I am doing gggggrrrrreeeaaattt! Scroll down for more updates and info on the pictures.

Pictures 1 and 2 are me showing off my creative side. Mommy gets me to add a personal touch when she sends some of her cards. Sometimes I cooperate and sometimes I just don't feel like being creative. picture 3 was me mommy and daddy together at the park. I love the slide and man is it a big one. I like to go down over and over. Picture 4 is obvious. Just relaxing in my chair with a book. I still go crazy for my books. Picture 5, mommy and daddy took me to a cider mill. They have some goats and horses (the horses were not there though)and they have a long trail through the trees alongside a small river. We ran into one of my favorite animals in the whole wide world. I don't think a day goes by where don't quack like a duck at least once. Daddy and I were able to get real close without scaring them away even though i was quacking like a wild woman. Who knows, maybe they liked my quacking and that is why they stayed.

Picture 6 is a road trip that mommy and Karen (my nurse) took me on. We went to grandma and grandpa's house. They had a slide for me to play on and a wagon for me to ride in and even a dog for me to play with. We had lots of fun. Picture 7 is of me and papa. Nana and Papa came to visit me and I spent some time on papa's lap while he read me some books. What a swell guy. In number 8 I am playing with my purle radio. I love to put in a cd and take it back out and put it back in again. I love music. If I hear a song I love, I will get entranced and nothing else will be able to grab my attention. I've learned how to hit the buttons and navigate through the songs. The next couple are from our halloween party that we had at our house. A lot of my cousins and aunts and uncle's came over to celebrate with us. We had a blast. The first one is me and Logan, what a monkey. If you look closely you will notice I am a pumpkin. I picked this costume myself but would only wear it for a few minutes.

These next couple of pictures (#11&12) are of me watching a show with my cousins. I was pretty tired in number 12 and was being my usual snuggly self with my cousin Zach. Number 13 is froma photo session in a halloween outfit. I just can't get over how cute I am. Numbers 14 and 15 are my new physical therapy devices. They are both standers we are borrowing to help me work on standing by myself. I'm going to be standing on my own in no time. I can already stand with very minimal support, I just need to work on my balance a little bit.

The days are usually busy around our house, so I try to do a lot of multi-tasking to get more things done. Sometimes I'll read a book with my hands and drink some water with my feet at the same time. I feel a lot more productive when I do stuff like this. Last picture is me on my bike smiling at myself in the mirror. I'm such a goof ball and I know it. I make myself laugh! Thanks for looking and take care all.

I Failed My First Driving Lesson!!!

2007-10-17T00:09:00.000-04:00

Just to prevent some legal action, I didn't really drive. I was just posing for a picture in the driveway. I was posing for mommy. I was going for the look like this was the first time that I wasn't able to acomplish something. I failed my first driving test and don't I look so defeated. The good news is that I have a long life ahead of me to acomplish whatever I want to and thus far have been successful in everything I have tried to acomplish. My alphabet is old news. I routinely say my alphabet just for fun. Now instead of just saying the letters, I say "A is for Apple, B is for Banana, ..." and so on. I have successfully counted to 50 with daddy and can probably count even higher by now. I'm learning my manners. I sometimes say please when I ask for things. I have gained quite a vocabulary and it continues to grow every day. I have many of my books memorized and often finish the sentences when they are read to me. I have learned the word no and know how to use it. I keep mommy and daddy laughing all day long. I'll add some more of my accomplishments when I think of them. For now, enjoy the attached pictures. The first one is me scooting around the house a I like to do on my bike. Mommy and daddy take me off the vent for a little while so that I can roam around and be free. I like to purposefully ram into things because I like the loud noise. The second picture is me and mommy at the park. Mommy and daddy try to get me out of the house as much as they can. Soon it will be cold and there won't be as many chances. The third and fourth pictures are of daddy teaching me how to stand. I can bear a lot of weight on my legs but am still working on the upper body coordination. The fifth picture is me smiling big as daddy holds me high in the air. In the next two, mommy let me get my hands on some scotch tape. I hope you get a couple of laughs out of these ones, I do! The last one is me snuggling with daddy as he sings to me. I am such a snuggler, I give lots of love every day. No wonder I am so tired at the end of the day. Thank you all for keeping up with my progress. I hope I have a lot more to report to you nekt time. Take care!

Golf Outing 2007

2007-09-27T04:57:00.000-04:00

The time has come and gone. Golf Outing 2007 is officially over. Thank you once again to everyone who had a part in it all coming together and thank you all for your support of our amazing Liliana. It was a beautiful day! If you were there, you already know that Liliana was in attendance in the beginning thanks to our wonderful nurse Karen and her husband. Liliana had a wonderful time. She told me that she plans on learning how to golf for next year. Below I am posting a few coments by others about the golf outing. If there is anyone else out there who would like to make any coments about the outing, contact me and I will put it in the main post.

"What an amazing Golf Outing this year! Dad & Mom and Tom did such a awesome job of coordinating the event and everything was PERFECT! Thank You once again for putting on such a wonderful event for our little angel! We appreciate it more than words can describe :)" LeeAnn Loveland

"Thank you all for your support of the 2007 Liliana Golf Outing. We struggled to get the anticipated participation but in the end the percapita giving was actually better than last year. Nice job done, we can all be proud. Generally everything went quite well, great food, nice raffle and auction items, adequate accommodations. Thanks for all your support." Craig (and Sue) Kemler

"Hi Tom and Craig.
Just wanted to let you know what a great job you both did on Liliana's Golf Outing.
We had a great time. I think everyone else did too. The dinner was delicious." Laurie Loveland

"Dad, Tom and Mom,
AWESOME job on the golf outing!! I think everyone had a great time despite the fact that it took some time to get lunch. From what I observed, people were really having fun and I spoke to many who enjoyed getting to meet or see Lili. She was definitely the highlight of the event (as she should have been)!! From my perspective things were well organized and went off without a hitch and the raffle items were great! The tables with the flowers, trail mix in the cups and goody bags was nicely done and the food was delicious for dinner. The (Liliana) video really stole the show and my heart! What a tremendous profit despite the lack of golfer participation!! Everyone that did participate really put in 100% effort. Thanks and lets do it again next year!!"
Stacey Diamond

The lucky raffle winners were as follows:

The TV goes to: Anna Alexander
The Teeth Whitening goes to: Corrie Byrd
The Jr Golf Set goes to: Veronica Ryszko

Congratulations!!!

If anyone has any pictures, please send them my way. All I have is pictures of my team.

2007 Golf Outing Golfers Needed!!!

2007-09-07T22:00:00.000-04:00

A lot of thought and energy has gone into putting together this years golf outing. Thank you to all of our family and friends who have put a lot of their valuable time and effort into this charitable event. Now all we need are some golfers so that their efforts can remain worth while. Please come out and support not only our prescious Liliana, but the countless number of people who have donated their time, services, and themselves to make this event happen. The golf outing is two weeks away. We hope to see lots of you there. If you plan to attend, please send your registration as soon as you can, or you may contact Craig Kemler @ rockycraig1@aol.com Thanks!

Love,
Liliana, LeeAnn, & David

I Know My Alphabet & I Count to 20!!!

2007-08-12T03:27:00.000-04:00

My daddy always likes to sing me my alphabet. I've been listening closely and the other day I surprised him by saying it all by myself. Daddy decided to start me out by saying A to see what I could do. First I said A and then when daddy didn't say anything else, I said B. Daddy repeated B after I said it and then I went on to C and so on until I made it all the way to Z all by myself. Daddy could not believe his ears!!! I just wanted to let you all know that. I will post more when I get more time.
I also count to 20. Daddy was counting wiith me today (8/13/07) thainking that I knew my numbers up to 10. He started me out the same way he did with the alphabet, saying one and repeating the numbers after each one I said. I got to ten then I kept right on going...11...12...13...15...18...19...20. I know I skipped a few but I was just testing to see if daddy was paying attention.
Anyway, here is a little info on the below pictures. Picture one is me and daddy playing. I like to sit on his belly and make him nauseous by bouncing around. In this picture I was reading a book and leaned over to kiss the babies dressed up as bumblebees. Picture 2 shows that mommy is still trying to get me to eat with my mouth. I like to get a taste of things, but still am not eating all that much. It is not easy to be hungry for anything when I get food regularly throughout the day through my feeding tube. Pictures 3 & 4 show me in my new wagon that mommy and daddy bought me. It is real nice and it even has seats and seatbelts. I love to go for wagon rides. Picture 5 shows me doing two of muy favorite things, rocking in a chair and playing with my frog. I can get myself rocking so good in the chair that mommy and daddy have to keep a close eye on me or the chair will flip right over. Picture 6 shows me and grandpa catching some rays and relaxing on the back patio of our house. Picture 7 shows my amazement in my ladybug dress. Daddy put me in it and I kept pointing at the little ladybugs and saying what they were. Then I proceded to pull up my dress toward my mouth and give the ladybugs lots of kisses. I love ladybugs!!! The last few show mommy's creativity. I look so cute in my dress and playing with my sunglasses don't I? My vocabulary continues to grow every day, mommy and daddy are constantly amazed. Also, my anunciation is getting better and better. That is all I can think of for now, I hope you all enjoyed my updates.

I've Got Sunshine

2007-07-19T04:31:00.000-04:00

Picture one is self explanatoryt...bad hair day! Picture two is of me smiling which I always like to do. I know what you're thinking, I'm so cute. Mommy and dadddy are trying to get me to eat real food. Mommy takes me to feeding and swallowing classes with either a nurse or my grandma. Picture three shows me eating some chocolate pudding. I like to get a little taste of it, but overall I am not yet that interested in taking food by mouth. Mommy and daddy took me for a x-ray study to see how I am swallowing, but of course I would not swallow the barium for the doctor. Maybe when I get a little older and am a little more interested in food. As most of you know, I went to Monroe for the 4th of July to Nana and Papa's house to meet a lot of new relatives. I had lots and lots of fun! It was very nice to meet you all. I especially loved my cousins and second cousins that are close to my age. I gave them lots of kisses and smiles. Picture 4 shows me at Nana and Papa's on my zebra. Mommy and daddy bought me this fun toy to further improve my leg strength. It bounces up and down and I can spin in circles.

Picture 5 is me at Nana and Papa's with some of my cousins and second cousins. We all walked out to the river behind their house. It was fun. Picture 6 is another excited smile picture. Picture 7 shows me being creative with my colored pencils. Picture 8 shows me finding some nonintended uses for my toys.

Picture 9, another really big smile. Picture 10 is grandma rocking me to sleep. I was probably tired after she took me on a shopping spree. She really spoils me. One day she took me to Toys R Us and let me pick out whatever I wanted. Pictures 11 and 12 show some of those toys.

I thank you all for checking up on me. I'm doing just great as you can see. I'm really starting to talk and talk. I try to say just about anything that anyone else say. The other day I was saying hotdog because I heard daddy say it. Mommy started bring me upstairs to play in my second bedroom. I love being up there so much that all I say all day long is upstairs. I say the names of most of the animals in my books. I am able to identify and say the names of numbers in my books and much much more. The weather has been a little more mild so I have been getting outdoors a little more. I don't know what else to tell you all right now. If I think of more, I will add it in.

Keep your eyes open for a post on the upcoming golf outing for myself. This event is being organized and put on by a group of very special people including:

Tom Campbell, George Peterman, Mike Rhulig, Ann Caldwell, Nana, Grandma & Grandpa, etc.

Whoever else has contributed in any way, please speak up and I will add your name to the list!!!

2007-07-03T05:09:00.000-04:00

Disregard the picture below, I had to upload it here so I could put in the title bar above. I just wanted to write to tell you all that daddy was jeallous that I knew how to make my own blog and he didn't, so he had me teach him how to make his own. I made a link to it in the "LINKS" column on the left side of my blog main page. Check it out.

Summer Pics

2007-06-15T04:18:00.000-04:00

Here's what I've been up to.
Summer is here! I've been enjoying the weather until just recently. It was perfect there for a while, not too hot, not too cold. Now it is Hot, Hot, Hot! I haven't been getting out as much because of this. If I do get out it is early in the morning. Included below are a lot of pictures of what I have been up to. Mommy and daddy took me to the Detroit Zoo a couple of weeks ago. The weather was a lot warmer than was predicted so it wasn't as enjoyable as expected. Also, it was really crowded even though we went during the week. Anyway, daddy didn't get any pictures of me, we were too busy trying to run around and see the animals and stay in the shade. I included pictures of a couple of animals that we saw. The polar bears were great. Daddy says that every time he goes to the zoo, the polar bears are hiding and he doesn't get to see them. This time we were very lucky and got to see them up close. In the second picture, you can't tell, but the polar bear was scratching his butt on the rocks. It was funny.

These next few pictures show me getting outside like I like to do. In the first one, daddy was holding me and we were enjoying the weather while watching people and cars go by. It was only around 6pm, but it was so relaxing that I ended up falling asleep for the night early. Mommy and daddy bought me a swing as you can see in the next two pictures. I love to swing!!! Even when my back gets tired from swinging for so long I just do not want to get out. Sometimes I even cry when they take me out of my swing. I could swing all day if they would let me.

Mommy and daddy also bought me my own chair and mommy found a play table at a garage sale. I sit in my chair like a big girl and play with my table every day. It has blocks that I am learning how to stack. The first picture shows me in my chair and the second shows me with my table. I am getting so strong! One of my nurses brought me some tadpoles and daddy found me a place for them to live. The tadpoles have since turned into 5 little frogs. The third picture shows daddy letting me reach for one of the little frogs. I was so quick and excited that I almost squished the poor little thing. He had quick enough reflexes to hop away just in the nick of time.

In this next set of pictures I am getting ready for and going for a swim in my pool. It was a warm day and mommy put me in my swimsuit and let me swim on the front porch. I have lots of toys that I like to play with in my pool. In the third picture, I must have seen a car or a bird or something going by. You can see me pointing at whatever it was. This is what I do all day. I point and like to say what's that. I am so curious these days and want to know what everything is. When mommy and daddy are reading to me I'll point and say what's that and after they tell me I will kiss whatever it is. I kiss everything these days.

I still use my jumparoo a lot as you can see in the first picture. In this particular picture you'll notice that my legs are in the air. I don't like the feel of this rug. If mommy and daddy put me in it over this rug without my shoes on, I will not put me legs down. I will put my legs down if I am over the hardwood or the normal carpet, but not this rug. Not until they put my shoes on atleast. My jumparoo is helping improve my leg strength. Sometimes I will straighten my legs and maintain a standing posture for a few seconds at a time. Mommy and daddy think that I will be able to walk long before I will be able to crawl. My leg strength is and has always been improving much faster than my arm strength. In the second picture, you can see me sitting up like a big girl on my dresser. Daddy opened the drawyer so that I would be safe. I had a lot of fun up there. I was beating on my wipe warmer and laughing. In the last picture you can see me playing with my leap pad or whatever it is. I have learned that when I hit the buttons, it changes something on the television. In case you can't tell from all the above, I continue to improve and am doing very well. I hope you all enjoy the post and pictures.

I miss you all and hope to meet some of you real soon. In case you haven't heard, I'm going to be making a trip to Monroe for the 4th of July to finally meet some of you who have been anxiously waiting to meet me. My nana and papa are going to have a little get together so that I can meet you. I am very excited. For details, you can contact nana and papa or mommy and daddy. I will see you all then!

Bouncer

2007-06-03T05:19:00.000-04:00

I love to bounce!!! This animation just can not show how much fun I have.

Scooter

2007-06-01T05:24:00.000-04:00

I've learned how to scoot around in a circle while sitting on the ground!
Click for a larger image.

My Own Museum!

2007-05-08T05:10:00.000-04:00

With a lot of pursuading, Daddy finally got a wing at the Smithsonian dedicated just to me. No, not really. Daddy's just been learning some new tricks in Photoshop and made his own museum just for me. If you look at the pictures, they show me from birth, far back, to present. Make sure you click on it to see the full size. I've got a lot more pictures to put up here, but I'm waiting for daddy to help me put them up.

Daddy decided that it was time for me to try and write my own post and I did not disappoint him. Here is what I wrote along with a picture: g333rrrrrrvbbnnnntsdddbbbfrgm.mmmm.m.m.m.m.m;jj;;;;;;h]i [/n g/;ypg7;// vc;h;h;h;h;hh;h;;hh;h;h;y; ,,nn,n,n,n,,n,nvlili.a.na..n...hopppopohop

Alright, here is the scoop on the pictures that I posted. Pitcute one is me in my high chair. I sit in there on and off throughout the day. It is easy for me to play and sit with or without support, which ever one I want at the time. Oops! I dropped one of my toys and I appear to be trying to reach for it and bring it back. Not too many toys have the privelage of staying on my high chair tray, however sometimes I drop things accidentally. Picture 2 is daddy helping me sit up with my legs dangling. It is fun to sit in new places and see some new scenery. Pictures 3-7 are of me getting out doors to have fun. Now that the weather is nice mommy and daddy are trying to get me out of the house a lot more. It's nice to get some fresh air. It's too bad that it will eventually get to hot for them to get me out of the house so much.

I like going for walks. There is a trail in the woods pretty close to our house which you can see in pictures 6 & 7. Sometimes we squirrels and ducks and various bugs. I am fascinated by everything. Pictures 8 & 9 show how wild of a sleeper I can be. I wiggle and wiggle until I find that perfect spot. Looks like I found it. Picture 10 is me and daddy having some snuggle time before he has to head off to work.

Picture 11 is just one of my wild hair days. Picture 12 is me getting a bath in my new tub. I outgrew my other one and my bathroom is just too small to have my bath there. Mommy and daddy along with my equipment just can't fit in that little bathroom to work together and get me clean. That's ok, I like my new tub.

Pictures 13 & 14 are me playing with my wash basin. I was having fun being silly with it on my head. Pictures 15 & 16 are of my cousin Logan who recently came to visit me. Aunt Vicky, Uncle Steven and Logan stayed the night. Logan is a wild man. When he first arrived, he was crying. I don't hear this too often, I mean ever, so I just looked at him like what is his problem. He is such a wild man I told mom, dad, U. Steven and A. Vicky to strap him in my stander which is picture 15. Picture 16 was later in the evening. We watched a movie together before bedtime. I had fun with him and can't wait to see him again.

Pictures 17 & 18 are of me on my rocking horse that Nana and Papa got me. I used to not like it very much and would start to pout. Now a days when I get on I am full of smiles. I can even hold the handles and stay on all by myself. I try and rock back and forth as long as mommy and daddy keep a close eye on me. The last picture is of me watching a movie with mommy before bedtime. Daddy took this one to show you how I chew my pacifier. I like to stick the whole thing in my mouth and then chew. I have a lot of teeth coming in and I like to hit every area of the mouth at the same time. That is that folks. I am doing absolutely wonderful and I home you all are too!

More To Come

2007-04-12T05:01:00.000-04:00

Daddy and I decided to post a lot of pictures to keep you all busy for a while. It's not always easy to post frequently. As you can see above, I'm getting bigger, stronger, and more beautiful. I sit up so well and am up most of the day. Mommy and daddy still have me off of oxygen. I'm such a busy and active girl. When I am awake I absolutely will not leave my pulse ox probe alone. This is the thing that measures my blood oxygen saturation and heart rate. I pull at the cord, chew on the cord, and have even learned how to undo the velcro and adhesive sticker. Mommy and daddy have gotten to the point that just have to leave it off of me while I am awake. I'm definitely a lot more portable these days. All mommy and daddy have to do these days is strap the vent on their back and they can carry me just about anywhere they want to around the house. They still have to stay pretty close to my suction machine in case I need it. It is fun to get around and see a lot more of the house. They tell me that when it gets warmer we can spend a lot more time outside. I'm excited! I started going to a play group. I get to meet, play with, and watch a lot of other kids. We also sing songs and read books and do crafts. It is lots of fun. Below are a couple of pictures of a project we did around St. Patty's day. I tried to paint a clover. I had a blast! My hands were green for days. The next picture is me all by myself in the rocker, I just love to sit up. In the next one, mommy and I got a little silly with some stickers. She always thinks of the best stuff to do.

Did I tell you all that I have found and taken a great interest in my feet? I love to play with my toes. I even chew on them from time to time. I scratch my face with my toenails and clap my feet together on the side of my face. Mommy and daddy just laugh at me. One day they put me in my bouncy thingy as you can see in the second picture below. I had a lot of fun but they had a heck of a time trying to get me in and out of that thing. As you can see in the next picture, I love to look at myself in the mirror. I make all kinds of faces at myself and make myself smile. I watch myself playing with my toys and doing other stuff so that I can see and figure out what I am doing. I've learned how to blow kisses and when I see myself and daddy prompts me I immediately blow myself lots of kisses. In the next picture you can see some of my many teeth. They keep popping up everywhere. I don't know how many I have and I don't usually let mommy and daddy get a good look in there. They sure hurt sometimes, but I am handling it like a big girl.

My legs are definitely the most active part on my body, but the rest is catching up. When I'm laying down, my legs are constantly in the air. When I'm sitting up, I'm constantly kicking and from time to time I manage to get my leg straight up in the air as seen below. The picture after that is me clapping my feet in the side of my face. My chubby cheeks cushon some of the force. The next picture is of me and some of my cousins. My aunt Stacey and my cousins Zach, Kaylee, and Hanah came for the day to see me. We had a great time. The picture after that is me doing "sooo Biiig". I can't quite get my arm all the way up in the air when I am sitting up but I definitely can show how big I am. And look how happy I am doing it. I'm such a happy baby.

I had some more visitors for Easter weekend. My Nana and Papa came to see me and they brought great grandma and great grandpa. I have not seen them in a long time and it was really great to see them. I got lots of kisses from everyone.

I hope you all enjoyed the pictures and they keep you all satisfied until I get the time to put up some more. I love you all. Keep checking back.

That's My Story & I'm Sticking To It

2007-03-20T00:02:00.000-04:00

I know it has been a long time since I last posted and I thank you all for being so patient! It's tough being a baby though. When I get up in the morning, I have every intention of creating a new post. Then mommy and daddy come in and start playing with me and I completely forget all about it. This time though, I didn't forget and I have lots of great news and pictures for all of you.

I'll start off where we ended last time. All continues to go well with my new gastric feeding tube and medication combination. I take erythromycin three times a day before 3 out of my 5 feedings. I still spit up every now and then, but it isn't every day, or even multiple times a day for that matter. When I do spit up, I just tell myself it's not my fault and blame it on whomever is messing with me when I have a full belly. All the extra nutrition that I am able to keep down is helping me grow and giving me the energy to get stronger. I'm getting so strong that I'm stitting up more and more unsupported. I'm so happy to be sitting up all the time that when someone lays me down, I get fussy.

Because I like to sit up so much, mommy and daddy and the nurses try to keep me up as much as possible. The above pictures are of me and mommy playing while sitting up. Now that I'm sitting up so well, I'm trying to work on my arm strength. It is really hard for me to lift up my arms when I'm not on my back. When there is a toy in front of me though, I just can't resist and reach and play until I can't reach or play anymore. The third picture of me is really silly. Mommy and daddy were laughing at me. My teef have been bothering me lately. I'm trying to sprout a few new ones and I chew and drool on everything. In the pic I'm chewing on the edge of the toy. Mommy and daddy thought I was getting tired and having trouble holding up my head until they inspected further. Every time they would lift my head back up, I would immediately go right back for the edge of the toy with an open mouth. When I got there, I was chewing and sucking like crazy.
Here are a couple more pictures of me sitting up with daddy. I like to sit on daddy's lap and watch television. We usually watch Sesame Street, Barney, or The Goodnight Show. I laugh and smile at Barney.

As a new part of my physical therapy, I've been trying to stand up as well. Mommy and daddy are borrowing a stander from one of my physical therapists.

As you can see, a stander is something that helps me stand up. It starts out in a lying postition. A strap goes over each one of my knees and my chest/abdomen. I wear my AFO boots to support my ankles. When I am all strapped in, the angle can be adjusted all the way up to 90 degrees. Without it I do not yet have to strength to bear too much weight on my legs. With it, I can stand and even try and bounce a little bit. It is great for improving my strength and maintaining my bones. It even has a table where I can play with my toys, paint, or even read books. When I'm not in my stander, my second favorite place is my high chair which is shown in the third picture. Check out my adorable pig tails! I'm playing with my favorite chew toy...my 5cc syringe.

Well, the Stride & Ride has come and gone. Thank you very much to all who donated. We raised an amazing amount of money. I think we had almost as much as last year but we do not yet know our final total. The MDA is supposed to send us a letter telling us how much we raised. We did not make the top team this year. The top team raised over $12,000. At the time of the walk, a combined total of over $60,000 had been raised and donations usually still come in for a while after the event. The event was a blast! Mommy and daddy got to take me this year, I was a little too young last year and I had not been home from the hospital for too long. The walk was the morning of the time change, which meant that not only did I loose an hour of sleep, I had to get up earlier than I normally do to be at the mall before store hours. Daddy turned on the lights very low to slowly arouse me, but I acted like I didn't see it and kept sleeping.
This is a picture of mommy trying to wake me up. She was trying to change my diaper to get me going. I just ignored her, rolled all the way over, got comfortable, and kept right on sleeping. Despite all my efforts, they kept persisting and I did finally wake up. They got me dressed and ready. I was a little unsure of what was going on. I thought for sure they were taking me to another one of those silly doctors. To my surprise we pulled into this big parking lot next to this big building. They told me it was a mall. I was excited! I had never seen the inside of a real mall. It was a georgeous day and the sun was shining as mommy and daddy got me out of the car and into my stroller. We walked into the entrance of the mall and there were more people than I have ever seen in my whole entire life. I slowly started running into my cousins, aunts, uncles, and grandparents. I was excited to see them all. I was even more fascinated by everything that was going on all around me. There were a lot of teams dressed up in costumes. I think our teams costumes were the best. We are and always will be "Liliana's Angels". Here is what some of our costumes looked like. These particular ones were made by my Nana (grandma).
Each family in our group was responsible for their own costume with the angel theme. I would have posted more of the other ones, but mommy and daddy did not get any good shots of them. You can kind of see them in the next few pictures. These next few pictures are of most of our team members. The first one is us waiting for the walking to start.

The rest of the pictures were from after we were done walking. It was hot in the building and everyone was tired including me. Daddy got me out of the stroller to keep me happy since I was starting to get tired and crabby. The second one is of me and some of my cousins. This was the first time that I have been together with all of them at the same time. We had lots of fun. The third picture is daddy time. I love when he holds me like that. I was so comfortable I could have fallen asleep. The fourth picture is my uncle Steven (daddy's brother in case you couldn't tell) and my cousin Logan...he's funny. Did you see his face in the group picture up there? The final picture is of me, mommy and daddy. We all had a great time and look forward to the next Stride & Ride. We hope you do too!!!

Other recent developments:

Mommy and daddy are increasing my CPAP time. I'm currently doing CPAP during the day until around 1am. The plan is to try and get me doing it 24 hours a day.

I've been doing longer periods off the vent. The other day I did about 3 hours straight off the vent. The next day I did about 4 hours straight.

I'm going to be losing my Medicaid coverage. This means that I need new insurance. Daddy is going to have to go back to being a staff nurse and take a pay cut. It will even out though because he will get health insurance through work instead of private which we have now. All mommy and daddy have to do is make sure that all of my doctors will still be covered under the new insurance. Also, I need to get an order from a doctor and a letter describing my condition and nursing requirements. That information will have to be submitted to HAP who will then review it and either approve it or deny it. This is just too much stress for a youngster like myself. I'm sure they will get everything figured out.

Anyway, that's my story and I'm sticking to it.

MDA Stride & Ride 2007

2007-02-19T03:38:00.001-05:00

Please help me in supporting the Muscular Dystrophy Association…
My name is David Loveland and I am a Registered Nurse for Henry Ford Hospital in Detroit, Michigan. My wife LeeAnn and I were very fortunate to become parents December 06, 2005. It was a day that changed our lives in more ways than one. While we are very lucky to have been blessed with a beautiful baby girl (Liliana Sue Loveland), we were very surprised to find out that she has a rare neuromuscular condition called Nemaline Myopathy. Some of our doctors told us that she would not live to see a year. She was born with severe hypotonia meaning that she had very little muscle tone. While she could make small movements in the amniotic fluid, in the real world she could not move an inch. Eventually this would lead her into respiratory distress as her respiratory muscles tired out. From the day she was born, she spent 100 days in the NICU. She went through a lot in her 100 day stay including, bipap, intubation, tracheostomy, EMG, muscle biopsy, PEG tube placement, and required CPR on one occasion. This was a hard time for our family. We made it through those tough 100 days and were very happy to finally take Liliana home. While it is nice to be home, each day is still an uphill battle. Liliana is approved for private duty nursing (16-hours per day) which is tough to get filled consistently. She remains trached and on a ventilator requiring constant monitoring, she undergoes extensive physical therapy by both ourselves and certified therapists, she has multiple different doctors which we have to take her to see regularly with her many medical devices and pieces of equipment, and she still has and will always have some amount of hypotonia. Despite all of this, she continues to amaze us with each and every day. She is a fighter and we have set her limits high because she has shown us that she can handle anything that we throw at her. Also, we have had a tremendous amount of support from both our families and friends. Insurance has been a chore in itself to deal with to make sure that everything gets covered, but for the most part coverage has been awesome between our three insurances. What I am trying to say is that our family has been very blessed.
There are countless families out there who have not been as fortunate as we are. I read stories every day about other families going through the same thing but they do not have the resources and support that we do. Whether there is lack of family support, abandonment by a spouse, lack of insurance coverage, lack of adequate income to meet needs, these families need lots of help. For most of them, the only way that they can get that help is through the Muscular Dystrophy Association.
Since Liliana was born and we found out that she has a neuromuscular condition, we have put a lot of our time and energy into participating in and raising money for the Muscular Dystrophy Association's Stride and Ride event. This is a charity event held annually and is put on by a local branch of the MDA. It is typically held at a large location such as a mall before opening hours. People affected by a neuromuscular disease, their families, and friends all get together with the donations that they have collected. As a group we stride (walk), and ride (in a wheelchair for those affected by a neuromuscular disease) in laps around the mall.
This year the MDA Stride and Ride will be held on March 11, 2007 at the Oakland Mall. The money that is collected goes toward MDA clinics, support groups, summer camp, medical equipment, health education, and research to defeat some 43 neuromuscular diseases that affect people of all ages right here in our community. Last year our team of friends and family "Liliana's Angels", who walked in honor of Liliana Sue Loveland, raised the most out of any other group. My wife and I received an award and had a few minutes of air time on the local MDA telethon for "Jerry's Kids". It makes us feel so good to know how many people we have helped and to know that the money raised could eventually lead to a research breakthrough that could help our own precious Liliana.
It is my hope that our story has moved you and you can find it in your heart to donate to a great cause. We would love to be the top donating team again this year, but we can't do it without your help.

To donate to the MDA Stride and Ride 2007 please visit:
MDA Stride & Ride 2007

On To Better Times

2007-02-18T06:03:00.000-05:00

Well, if some of you remember, in one of my last posts I mentioned that I was possably going to get a new feeding tube that would bypass my stomach and hopefully put an end to all of my spitting up. I had been spitting up multiple times a day pretty much every day since I've been eathing through a gastric tube. This is not good because the acid in my stomach will erode my esophagus and lead to increased risk of esophageal cancer. The problem is that because of my neuromuscular condition my stomach does not empty as fast as it should. This allows food to build up and stay in my stomach even when I am through eating. When I would sit up or try to move around and play up it would come. Usually you would be able to take a medication called Reglan to help the stomach empty faster, but with me it did not work and seemed to make me spit up more than normal. So mommy and daddy took me to the doctor to see what we could do about all this. What the doctor suggested was switching my gastric tube to a g-j tube. This tube would go in the same spot as my old gastric tube, but it is longer so that it goes right through the sphincter in the bottom of the stomach and into the jejunum which is part of the small intestines. Supposedly this was going to be a magic fix. However, mommy and daddy were never told about one very important side effect. Without knowing this information, mommy and daddy decided to go ahead with the new feeding tube.
The day came for the placement of the new tube. Mommy and daddy were nervous, because they knew it was going to hurt and because they would not be there to commfort me during the procedure (no anesthetic or sedation would be administered). They sadly left the room as the procedure was getting ready to start. They anxiously waited about 20 minutes for some information. When they finally came back into the room, they saw me crying like they had never seen me cry before. They quickly began trying to comfort me but with little success. Every time a stranger came close to me I got even more upset. Daddy finally picked me up and put me in the stroller. He gave me a toy and lots of kisses and I started to settle down. I never want to go through that again.
We finally got the procedure out of the way and I was ready to see if it was going to work as advertised. Mommy and daddy took me home so that I could eat (through the new tube) and take a nap since I had not eaten in a while and it was well past my nap time. Things were going perfect, and then it started. My first spit up, even after the new tube I was still spitting up. However, this time it would be much worse. I was not spitting up formula, I was spitting up bile. This is that very important side effect that mommy and daddy wished they had known about before the procedure. Apparently, the new tube going through my stomach and into the intestines was not allowing my sphincter to close tightly around the tube. This was allowing bile from the small intestines to back up into my stomach and cause me to spit up. I continued to spit up for a week despite mommy and daddy draining the bile from my stomach through the gastric port on the new tube. The good news is that I was finally keeping all my formula down, the bad news was that I would spit up bile multiple times a day for a week. Mommy and daddy kept getting the run around from my doctors who seemed to act like it was no big deal. If I must say so myself, I think that around 1000ml of bile over the course of a week from a little thing like myself demands some urgent attention. A week later and mommy and daddy still were not able to get the doctors to act. I spit up the morning of that 7th day and my heart rate shot up to over 200 beats per minute. Mommy talked to multiple doctors over a course of a few hours to try and get something done ASAP, still nothing was coming together. Then mommy and daddy took things into their own hands. My nursing agency apparently stocks the feeding tube that I would need to switch back to in order to stop the bile from backing up into my stomach. Mommy drove for a couple of hours to get it. When she got home, daddy pulled out the old one and put the new one in. Besides, it is something that they are going to have to do every few months anyway. These tubes need to be switched every few months and the one that I switched back to to stop the bile is changed in the home anyway. It was either this, or wait to see the doctor in the morning and go through the night with a dangerously high heart rate. It doesn't take a rocket scientist to make that decision. I was much happier when daddy put the new tube in. I felt a sense of instant relief. I didn't spit up the rest of the day. Mommy and daddy also got the doctor to try a different medication to help empty my stomach faster. It's called erythromycin. It's an antibiotic, but in low doses it seems to improve gastrointestinal motility. So far it seems to be working. I've spit up a couple times, but not nearly as much as I used to. I'm much happier now that I'm not spitting bile and mommy and daddy are very relieved as well. So, on to better things. Here are some recent pictures of me. I continue to gain neck and back strength, hence all the pictures of me sitting up. Thank you all for reading

New Developments

2007-01-20T23:19:00.000-05:00

Happy New Year to everyone. My progress continues on in the new year. I'm such a wiggle worm that mommy and daddy can not hold me still. I'm trying so hard to roll over. I get all the way on to my side to play with my toys. I go from side to side like it is no big deal. I've gained a lot of neck control. Just today, daddy put me in my bumbo and I sat up all by myslef. Daddy was trying to hold me so I was sitting up on my own, bit I was just wiggling around too much to stay up. I'll tell daddy to include a picture of me sitting in my bumbo. Basically it is a seat that holds me in position and gives me a little back support. It's perfect for me to work on my upper body and neck strength. I continue to pick up and play with heavier and heavier toys. I'm such a happy baby that it is rediculous. I'm getting even more of a personality. When I grab my tubing and mommy and daddy tell me no, I purposefully go right back for it. And, when the give me a toy instead of the tubing to play with, I throw the toy and go right back at the tubing. I'm such a stinker. If you don't know, mommy and daddy were able to get away for a vacation. They went to Cozumel. I stayed home with the nurses and my grandparents and aunts and uncles kept me company. I had lots of fun and so did mommy and daddy. I pulled a fast one on mommy and daddy though. One of the days they were gone, I snuck down to Cozumel, see the picture below. the only bad thing was that daddy caught me and I had to go back home. I saw the gastrointestinal doctor the other day about all of my spitting up. He put me on Zantac and suggested that I get my gastric feeding tube changed to a jejunal feeding tube. That just means that the tube will bypass my stomach and go straight into my intestines. That should hopefully solve the problem. I need to have some other tests first. I will keep you informed. That is all I can think of for now, enjoy the new pictures. Love Liliana

Picture number 1 is me in my bumbo. It may look like my head is resting against daddy's arm or the dresser, but it is not. I am holding it up all on my own, and did so for about 15 minutes or so. Picture 2 is my playing in a fort that mommy made for me. She's the greatest! Picture 3 is me sitting up in daddy's lap. This is usually how daddy makes me sit up on my own, but sometimes I wiggle around too much to cooperate. Picture 4 is daddy making me sit up again. I like to look down at my kicking feet and toes and even try to touch them. Daddy has to support my head when I do this. The last picture is a picture of me when I snuck down to Cozumel. Daddy caught me on one of his scuba dives. Man was I in trouble.

To My Supporters, Another Song For You

2007-01-17T23:46:00.000-05:00

For those of you who don't know, mommy and daddy just got back from a relaxing vacation to Mexico. They had a wonderful time and I had a fun time spending some quality time with great grandmas and grandpas and aunts and uncles. I am really happy to have mommy and daddy back home with me but I am glad they got to get away and unwind.

Daddy is sorry that he hasn't posted in a while. He will make a good post real soon. Two things to look forward to include: Info and donation information for the upcoming Muscular Dystrophy Stride and Ride (we were the biggest contributors last year and would like to do the same this year), and pictures of me, including one in which I snuck down to Mexico and daddy snapped a picture of me.

Until daddy gets a chance to post, I have uploaded another song for all of you who support me and mean the world to me. I hope you enjoy!!!

Just A Couple Of Pics

2006-12-28T00:28:00.000-05:00

The pictures are in order from newest to oldest, with the first one showing me with less than half of my Christmas gifts. I was having a bad hair day in the second one. The third was bath time and I had a big smile for mommy. The fourth one was me trying to call Nana. The fifth and last one was just me looking all cute wrapped up in a blanket.

I've been doing great. I had a wonderful second christmas. I got lots of wonderful toys and clothes. I've gotten over my cold and am feeling much better. I am such a wiggle worm these days that I give mommy, daddy and all the nurses a run for their money. I miss you all. I hope you all had a nice Christmas.

Addendum: I said Da Da Da for the first time today. Mama and Dada are very excited. I can't wait to learn how to say mama.

For All My Fans & Supporters

2006-12-19T22:27:00.000-05:00

The song that I had my daddy add to the BLOG is for all of you out there who love me, support me, continue to check on my progress, and pray for me. I hope you enjoy! If your internet will not play it and asks you to install something, go ahead and install it. Daddy says it is ok. I love you all and thanks for loving me!!!

Love,
Liliana Sue Loveland

It Had To Happen Sometime

2006-12-19T22:16:00.000-05:00

They say that there is a first time for everything. Well, it finally happened here. Last night Liliana wasn't feeling so well. Her temperature was well over 100 degrees. She was very squirmy, had lots of spit-ups, had a high respiratory rate and heart rate, and had a lot of secretions. When I got home from work this morning, she was acting like her normal self. She was smiley. Although, her face was red and her heart rate was still up a little. Her feaver was gone for the time being. I spent some time with her and headed off to get some sleep after being up all night working. Just before 3pm I was awoke by LeeAnn saying that Lili needed to go to the doctor at 3:30. She definitely has a cold, which we knew, but there isn't much they can do for her right now. Her lungs are clear, her oxygen requirements have not increased, her ears looked normal. They wanted to take a urine sample, but Liliana had just filled her diaper and when the put in the catheter for the sample, there was nothing there. So for now, we just have to keep an eye on her, keep giving her tylenol if she needs it, and make sure she is getting plenty of fluids. Don't worry, she may be sick, but so far she has been happy and adorable just as she always is.

Liliana, Takin' Over or Waitin' Till Older

2006-12-18T22:49:00.000-05:00

I tried to help Liliana make her own post on the BLOG this morning. She was very excited, but things did not work out the way I hoped. I brought my laptop into her room and set it down in front of her. Immediately she began pounding on it with her hand. Unfortunately, the keyboard is set just a little bit too far back from the front of the laptop for her to effectively hit the letters. She was able to hit the space bar a lot, but I didn't think that would make a very good post so I omitted it. Next I figured, she likes to kick and move her legs, why not try and put it under her feet. Instead of pushing on the keys, she was pushing on the front of the laptop trying to roll over. She was doing so good at rolling over this morning. All the way onto her side with no assistance. Not quite able to roll all the way over yet. Anyway, I think she might still be a little to young to take over the blog and publish her own posts. You all have to put up with me for a while longer.

Other developments: Now that the birthday is said and done, Lili says she really doesn't feel any older. We continue to sit her up every day to help strengthen her neck and back. As you read above, she is starting to roll onto her side all by herself. She switched over to a big girl formula the other day. Her sleeping schedule is out of control again. The other night, she didn't fall asleep until 10pm, woke up from 4-6am, and woke up for the day just before 8am. We had a doctor visit the other day. When we got to the office, we were told that he isn't at that office anymore even though that is where they told us to go. We did not get to see the doctor that day and now have to wait until min january. Lili got lots of nice birthday gifts and cards and she thanks you all very much. That is all I can think of for now, I will post some pics when I get a chance.

The Party

2006-12-10T01:25:00.000-05:00

My birthday party was a blast. I did however miss seeing all of you who were not here. I hope that you all were able to see me on the BLOG and that there were no problems with the camera. The video was a little slow because of all of the people trying to see me, i appologize. I think someone may have accidentally been moving the camera around from the BLOG as well, oops! My great grandparents, grandparents, and aunts and uncles started arriving around 4:00. I started opening my gifts a little early, I hope you all were already watching. If not, I'm sure you caught most of it. I got lots of toys and some cloths. I loved it all!!! Thank you all for my gifts. There was a little bit of a break between gifts and cake time to get organized. I hope I did not loose some of your attention and you watched me get a little messy. I had a great day. I missed seeing a lot of you. Maybe we will be able to have a lot more of you over for my 1 1/2 year birthday sometime this summer when I don't have to worry about catching a cold. I'm going to attach some pictures of my fun day. I hope you enjoy!

P.S. Thank you Cakes By Stephanie in Monroe, especially Stephanie, Tom, and Tiffany. They were amazing as usual!!!

The first two pictures are of mine and daddy's birthday cakes, yummy!!! The next one is of me playing with a balloon that daddy blew up just for me to play with. I was shaking it around and bonking it on my face, it was fun! The next two are of some of my special decorations. The next few are of me diving into my cake. I was a little hesitant, but still found a way to get frosting on everything and not just myself.

Go Us, It's Our Birthday

2006-12-06T20:06:00.000-05:00

I'm 1, Daddy's 28. Hooray for us!

8 Days Till My First Birthday (11 Till My Birthday Party)

2006-11-28T01:16:00.000-05:00

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

My New Tricks and More

2006-11-19T05:46:00.000-05:00

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.

Happy Birthday Mommy!

2006-11-10T22:45:00.000-05:00

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

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

Not To Worry

2006-11-09T21:24:00.000-05:00

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!

"My Halloween Costumes & More" Liliana Sue

2006-11-03T02:13:00.000-05:00

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!

Busy, Busy, Busy!

2006-10-30T01:28:00.000-05:00

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's been a while

2006-10-19T00:05:00.000-04:00

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.

Sorry for the trouble!

2006-10-05T12:59:00.000-04:00

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!

New Pictures And Updates

2006-10-04T23:46:00.000-04:00

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.

More Silly Sleeping Pictures And Others Too

2006-09-14T22:41:00.000-04:00

Picture 1: Mommy and Daddy took me for a walk through the neighborhood. They showed me my future elementary school. It is really nice. I saw the classrooms, the gymnasium, the caffeteria, and a bunch of computers. Picture 2: Daddy tells me I'm going to be a basketball star some day. Picture 3 & 4: Close ups of me and Mommy and Daddy in our shades. Picute 5: Me watching Baby Einstein in my crib while playing with my hair. Picture 6: Daddy was giving me a sponge bath and I kept crossing my legs. I had my left leg bent at the knee with my foot on the ground and my knee straight up. I took my right foot and put it on top of my left knee just as if I was crossing my legs. Daddy wasn't quick enought to catch the right moment because I was moving around a lot just like I always do these days. Picture 7: Sleeping again and getting myself in the most comfortable position with every extremity touching something. Picture 8: Just a cute close up of me sitting in my high chair. Picture 9: Sleeping again. Got my foot wrenched in the crib rails. I wasn't stuck or anything, I just like to touch things with my feet...sleeping or not. Picture 10: All sprawled out, what more can I say?

Look at me!

2006-09-06T23:41:00.000-04:00

I don't know if all of you saw, but my mommy and daddy were on TV last monday. They are TV stars. They may even get to do it again next year. Remember the walk that they did for the Muscular Dystrophy Association in my honor? Well they raised the most money out of any team thanks to all of you and many others. Well they were on live television for the annual MDA telethon to present a check for 10 thousand dollars that was raised by their team for the MDA walk. I watched them from home and smiled when I saw them on the television. They said next year they might even do a special featurette of our family. Maybe then I can be a TV star as well.

Things have been going good at home. I continue to grow. At my last doctor visit I was almost 18 pounds. My doctor continues to be impressed with my progress. I got to meet a special girl in a similar situation as myself. When I get bigger, maybe we can be good friends. She was very pretty and her parents were very nice. Mommy and daddy are going to get together with them sometime because they live close to us.

I continue to do my breathing off of the vent every day. Sometimes I do better than others, but anthing is better than nothing. I have two teeth now. I'm glad that the have finally come in. They were sore there for a while. I think I may be getting two more real soon. Mommy and daddy are doing good. They keep me busy with my toys and make me smile every day. I hope you all like my new pictures. I keep trying new things every day. Physical therapy is really helping me to get stronger and try new things. I like surprising mommy and daddy every day. You should see their faces when I show them something new. Anyway, I'm getting tired. I miss you all and hope to see some of you real soon.

Image 1- Now that I can get my arms to my head, I like to play with my hair. I usually pull it over my face just as I am falling asleep as this picture shows. Image 2- I love to put my fingers in my mouth! Image 3- Mommy and Daddy put my into my bouncy thing for the first time. It was fun, but I got kind of tired from being straight up after about 10 or 15 minutes. Image 4- Not only do I put my fingers in my mouth, I like to bring my hands together, play with my fingers and see if I can fit them all in my mouth at once. Image 5- I know Nana says I'm not a wild sleeper, but I am. I like to sprawl out and get my legs, feet, arms and hands on anything I can. It's a comfort thing. Image 6- Me and Daddy relaxing on the couch. Thanks mom for helping me snuggle with Daddy!

Wild Sleeper

2006-08-29T00:31:00.000-04:00

In Lili's Words Part II

2006-08-16T23:57:00.000-04:00

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.

In Lili's Words

2006-08-07T23:05:00.000-04:00

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.

Just Some Pics

2006-08-01T00:54:00.000-04:00

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!!!

Update

2006-07-26T14:52:00.000-04:00

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.

What a day!!!

2006-07-21T02:17:00.000-04:00

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!

Even More Amazing!

2006-07-11T14:19:00.000-04:00

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???

Amazing Girl!!!

2006-07-10T08:59:00.000-04:00

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!!!

Daddy's Girl!

2006-07-05T13:42:00.000-04:00

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

Latest Big Girl Update

2006-07-01T05:35:00.000-04:00

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:

My Swimming Pool!

2006-06-24T00:45:00.000-04:00

My First Stroll Through The Neighborhood

2006-06-15T16:44:00.000-04:00

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.

Thank you Grandma & Grandpa Loveland!!!

2006-06-13T18:37:00.000-04:00

"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

New Pics - Getting So Big

2006-06-06T03:52:00.000-04:00

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.

Amazing Little Girl!

2006-05-25T21:05:00.000-04:00

Last time I posted, I told you that Liliana is starting to get more refined movement in her arms and legs. Over the past week, she has surprised us once again. She is starting to get some strength in her neck and is able to move her head around a little bit. What we do is put her on her back with a roll under her shoulders and her face toward the ceiling. Then we wiggle our fingers or use a toy going from side to side slowly so that she can follow. When you get so far to the side where her eyes are no longer able to follow, she moves her head. She can't move it very far yet, but we have very high hopes for her and we know she will continue to try harder and harder every day.

No doctors visits this week, so no new measurements to report.

CPAP continues to go great. Over the past week we have changed her schedule from 8a-12p & 7p-11p down to 8a-12p & 4p-8p. She is still doing 4 hours twice a day, but we have closed some of her rest time in the middle. This should help her strengthen more to help her eventually be able to tolerate CPAP all day and rest at night.

We did not get Lili out to the living room this week because we had a busy week and so did Lili. Some days she was so exhausted she fell asleep around 6p and slept throughout the night.

LeeAnn and I had our 3 year wedding anniversary this week. One of our nurses offered to come from 1p-9p so that we could go out and celebrate. I took LeeAnn on a mini shopping spree. She got some clothes and 2 pieces of framed wall art. I also bought some clothes and we got Liliana a real cute purple swimsuit. We also went out to dinner at Rio Bravo, it is one of our favorite places to go for mexican. We had a great day. When we got home Lili was sleeping. We missed her a lot in our short time away from her. We gave her lots of kisses as usual.

Sorry, no new pictures this time, but keep a close lookout, you never know when I will have some new swimsuit pictures on here.

Couch Potato

2006-05-17T21:02:00.000-04:00

This was Lili's second trip to the living room. It completely tuckered her out because she decided to skip some of her naps that day. Since she was trying to take in everything in this new environment, she still did not sleep. LeeAnn had to coax her to sleep, and when she did finally give in, she was out. It's nice to get her out there, and the more we do it the easier it gets.

We had another doctor visit today. Liliana is up to 14 pounds. Everything is going great. She has picked up some more movements in her arms and legs. Instead of just kicking her legs, she is now starting to pull them in toward her body. Her arms are getting a little stronger. We can put a toy at her side, just out of reach and she will move her arm outward and touch it. She never ceases to amaze us. I can't wait to see what she has in store next!!!

Lilly Land

2006-05-10T14:15:00.000-04:00

Just me trying to be creative. Our indoor lili's are blooming and gave me a great idea for the following photos.

Sunbathing???

2006-05-10T00:30:00.000-04:00

It was just me and Lili for a few hours yesterday since mommy had to work and our nurse left at 3:00. I gave her her bath and decided to try and get her out of her room for a change since mommy has really wanted to get her out of there. When LeeAnn came home from work, she cried because she was so happy to see Liliana out of her room. We had her out in the living room for about 5 hours. She loved seeing the new environment. I put one of her videos on the big screen tv and she watched with great intent. The bathing suit idea was to get some funny pictures, which I think turned out to be a great success. Everytime I look at those pictures I laugh out loud and get a tear in my eye. Anyway, now that I know it is not that difficult to get all of her equipment out there we will have to do it more often. Here are a couple more pics.

Lilli, Lilly bo Billy

2006-05-03T18:52:00.000-04:00

Nothing but good news here. Liliana is getting so big that it seems a little unreal. She started cutting some teeth recently and has her good moments and bad. You can definitely tell when her teeth are bothering her. We just give her some tylenol, oragel or her ice chew toy and you can see the relief that she feels. She continues to develop. Her legs do not stop kicking when she is awake and happy. We prop her legs up with rolls and put this one toy under her foot. She is able to kick and make the toy sound. We also put a rattle toy around her ankle and she makes a lot of noise with that too. We get a kick out of it. I did something yesterday, I don't remember what, she looked like she was laughing. It was definitely more than a smile. I am so happy and proud of her. She makes me happy every day. When I watch her and her personality it makes me laugh.

Big girl pics.

2006-04-28T04:57:00.000-04:00

Here are a couple of new pics for all of you. The first is Lili happy to be in mommy's arms. She is always so happy, but she lights up even more when we get her out of her crib. The next two are Liliana ready to go to the doctor. They were actually taken after we got back home from our doctor visit because we forgot we had the sunglasses with us. She is such a cutie. Remember how I said she is growing like a weed? She is up to 13 pounds. She has been doing so good on her CPAP trials that the doctor said it is ok to increase her times a little. Instead of 3 hours twice a day, we are going to try 4 hours twice a day. That is two whole extra hours of CPAP per day. The goal is to keep her start time and finish time for the day the same but to keep increasing her duration times until they eventually merge. This would eventually put her on CPAP all day and back on the vent at night. We have high hopes for her, and based on what she has shown us so far, I know she will continue to amaze us.

For those of you who I have ok'd to use Lilicam

2006-04-23T00:25:00.000-04:00

I've been trying to get lilicam so it is easier to view online. I think I may have a solution. For those of you who have a password, log on like you normally do. When the viewing window pops up click on the link on the left that says connection type. You will have to install Active X again. Make it so that there is a black dot in the circle next to TCP and click save. This should work! I am going to leave it connected so that you can view while I am at work but if I start having problems viewing I will take it temporarily off line. Please do not pass on your password for lilicam to anyone. If someone wants to view it they may contact me personally. Thanks! Enjoy your viewing!

Soooooo Biiiiiig!

2006-04-19T18:57:00.000-04:00

Liliana is thriving at home. She continues to get so big. She continues to refine her movements and coordination every day. She is so attentive and loves when we help her to play with her toys. She is starting to comprehend some of our games like peek a boo, i'm gonna get you, and zerberts. She smiles a ton. We are so happy for her and all of her accomplishments, she amazes us every day!!! I told you I would post her latest measurements and here they are: 12lbs 3oz & 25.5 inches long. She's growing faster than our tulips. Here are a couple of pics that we recently took. I know you will enjoy.

Still Trying to Find More Time to Update

2006-04-14T02:27:00.000-04:00

Things have been busy, busy, busy around here. The highlight of my first day off from work was holding Liliana. I slept most of the day because I worked the night before. When I left for work that night I promised I would hold her for a long time the next day because I would be off. She always smiles when I pick her up and still have her in the air, it's so cute. She loves to get out of her crib. We try and put her in her rocker and hold her as much as we can. We can't just do that whenever we want to though. Sometimes we decide that it is best to leave her in her crib until her feeding is done running, it runs for 2 hours. When she gets too excited or is jostled around too much, she tends to spit up. We want to try and limit this as much as we can because if some of that would get into her lungs she could get a serious infection. Trying to sleep on my first night off was terrible. I think I slept for less than an hour around 2am and then was awake until around 1pm. I wasted some time reformatting the hard drive on our new computer because it had already gotten a virus. This was no fun task and took probably about a day, on and off, to complete. I don't want to ever do that again, but if I have to at least I know how to now. The next night of sleeping was much better which was a good thing because Liliana had a doctor's visit in the morning. The doctor's visit went great except for all of the waiting for the doctors. Liliana is growing like a week. I can't remember her measurements off the top of my head, but will try to remember to post them when I get a chance. She was seen by two doctors, one of which cauderized some granulous tissue around her g-button, she got an RSV shot, had an x-ray, and got a sticker. She was sleeping when they gave her the shot. It woke her up but she didn't cry. I don't think she even knew what happened. She wasn't too happy during much of the rest of her visit. She was crying for quite some time. That was around the time that we were waiting for one of her doctors. I don't think she likes to sit and wait around for too long, she takes after both of her parents. When things got moving again, she was back to her normal self. Later that night I got to take care of her myself again. She slept throughout the night with no problems. She had a couple hours of tummy time again which she enjoyed. The morning nurse arrived, I gave her report and went to bed. Now, here I am back at work. LeeAnn is home taking care of lili again without the help of a nurse. We had this opening because we had the scheduled nurse taken off of our case to help protect Liliana's health and safety. We're just happy it happened sooner than later although we wish that it would not have had to happen at all. There is good news though, LeeAnn's sister Stacey has been doing more research for us. She has gone out of her way once again to contact other nursing agencies in our area to help us get nurses to cover our needed hours. Things will hopefully start to look better soon. Thank you very much Stacey!!! That is all for now, I need to do some work here. Sorry, but I still do not have some new pictures to put up for you. Keep checking back though, I will have some up here soon.

Update on all three of us

2006-04-08T22:17:00.000-04:00

Things have been busy around the Loveland house as uaual. Liliana is doing great. She continues to be happy and healthy with each new day. We hold her, read to her, and help her play with her toys. When you hold one of her arms up to one of her toys, her little hands go crazy. You can tell she is trying to touch it and move it and play with it. She is so amazing. I took care of her the other night. Toward the morning when she was still sleeping, I stood over her and just stared at her. A powerful emotion came over me which I cannot even describe. I was just truly amazed with her. She is getting so big. She has changed so much. It is an amazing feeling to know that this living breathing human being is a part of me. I was overcome with happiness.

Our nursing schedule has been one of the biggest stressors in our life right now. Nurses were scheduled according to my last month's work schedule which is the complete opposite of my work schedule for this month. This means that we have a lot of night time openings where we have no nurse. To add to this problem, a lot of shifts are being scheduled during the daytime where we don't necessarily need nurses all of the time. You would think that they would understand that we need nurses at night. I mean how many people can sleep during the day and stay up all night. Try doing that 3 days in a row when your body is not used to it. Fortunately, I am used to that because I work midnights, however LeeAnn is not. What if she were to get to the point of exhaustion where she just can't stay awake anymore. I know you've all had that feeling at least once before. When you get to that point, you can sleep right through anything. It is not safe for Liliana. It would be nice to have a nurse every night, but it would be even nicer to know that all of the nights that I work will be covered. I can take care of Lili myself on my nights off. However, I can't keep canceling shifts at work because I need to stay home because we either have no nurse or our nurse cancelled. If I have to call in or cancel a shift we loose out on a lot of money that we need and count on. I do not get paid vacation time or sick time. If I do not work, I do not get paid. If things do not start to shape up soon, I will have to consider taking a huge pay cut so that we will have the right benefits to try another nursing agency. I hope it does not come down to this because I'm not so sure that we can afford to take such a big cut in our finances right now. If only there was a way for me to get group insurance without having to take a huge pay cut. I hope everything starts to come together real soon. I do want to say a few good words about all of this: Thank you to the nurses that have rearranged their hours to help cover some of the nights that were left open. Hopefully our next schedule will be filled according to my CURRENT work schedule.

I had a nice 6 days off from work this past week. We had a lot of visitors. It was good to see all of you. Liliana is happy to have finally met you. I had to stay up with her 3 nights in a row because we did not have a nurse. I enjoy it, but with all of the visitors and trying to get things done during the day, it really wore me down. I started back to work on Thursday and was dead tired. We did not have a nurse thursday, so LeeAnn was going to have to do it without me. Her dad Craig was on call to come over and help out and support LeeAnn. She did an amazing job and did multiple things around the house to stay awake. I came home to a clean house, nearly slipped on the waxed floors, and was blinded by the sun reflecting off of the countertops. We both slept during the day and I was awoke early to LeeAnn telling me our nurse for the night had called in. Knowing that LeeAnn had not slept much during the day and that it would be very difficult for her to stay up all night 2 nights in a row, I cancelled my shift at work. If only I could get paid to do nursing in my own home. I am a nurse after all, and so what if she is my own daughter. It sure would make things a lot easier!!!!!!!!! Anyway, I am back to work tonight. I wish I was home with Lili but I know it can not be so. I will just do my work and look forward to seeing her in the morning.

I am sorry for all of the negative things today. I like to try and keep things as positive as possible on my BLOG, but sometimes you just need to vent. Rest assured that Liliana is doing very well. I wish I had some pictures, but I have not had too much of a chance to take any recently. I will definitely put some up soon.

We're Back

2006-04-02T05:07:00.000-04:00

Sorry to all of you who have been waiting for a post. It has been a while, and I know a lot of you check fanatically for updates. I really do try to post as much as I can and when I have the time and energy. It has been a busy week once again and I am running on very little sleep since Wednesday. I worked Wednesday night. Lili had another doctor's visit Thursday so I only got 2 hours of sleep that morning. I was up the rest of the day because I did not feel tired. We had a nurse Thursday night but I was not able to fall asleep until 4am. Friday I was up from around 1pm until 8am the following morning because we did not have a nurse. I did not mind because I got to spent a lot of time with Lili again. Friday I still did not catch up on too much sleep because we were expecting company. I was up Friday from 2pm until probably 8 am this morning because once again we do not have a nurse tonight. I have to be up again today because we are expecting more company. Sunday will be exactly like the two previous days because once again we do not have a nurse. Any nurses out there reading this, that is a call for some support over here. Pediatric Special Care would love to have you on our case and we would too! Anyway, our company today was greatly anticipated. It was my brother, his lovely wife, and their baby boy Logan. We have not seen too much of them since Lili was born and we have only seen Logan one other time. Lili desperately wanted to meet her new cousin who was born less than a month after she was. We had a great time. The kids loved to stare at each other. Today we are expecting my god parents and my cousin who we have not seen since Lili was born. They can't wait to meet her and we can't wait to see them. Anyway, Lili and I had a great night. She has been sleeping great. She did 3 hours of CPAP without any difficult in the beginning of the night. I had her on her tummy for about 3 hours again tonight. She doesn't even wake up when I flip her on to her belly. I think she likes to sleep on her tummy. I flipped her back over around 5am and she was tooting away. I changed her and 2 minutes later she was tooting again. Two large poops and 2 diapers all in 2 minutes. Anyway, I have to start doing some of her care so I will talk to you all later. Here are a couple of her latest pics.

The first picture is Lilicam. The second is tummy time on one of my nights alone with her. Then next three are Liliana and her cousin Logan. The last is a smile for Daddy. Enjoy!

Pics

2006-03-29T09:02:00.000-05:00

I'm still trying to capture one of those million dollar smiles on camera. Have only been able to capture a half smile so far.

Here is Lili looking all pretty.

Liliana's Movies

2006-03-24T19:37:00.000-05:00

My mom said that people keep asking what movies Liliana owns because they want to buy her some movies. She suggested that I put a list in the sidebar. I have created a list underneath the links section. It is coincidentally called Movies That Liliana Already Owns. She has already started a small collection of DVD's. To see what she owns just look in the sidebar. I will update it whenever she gets a new movie.

Update

2006-03-24T14:13:00.000-05:00

I'm very sorry that it has been a week since my last post. I can't believe that a week has passed already. It has been a great week with liliana but a busy week with everything else going on. Liliana continues to do great. She is happy as can be. She smiles more an more. She soaks up all the attention that she gets and sometimes when you have to step away for a moment she starts to cry. When you come back and talk to her and caress her she stops right away. I'm starting to get more comfortable with handling her since we are on our own a lot of the time and don't have the nurses to help us. I was holding her yesterday in my arms while I was standing. It was the greatest feeling. I wasn't used to holding her this way and my arms tired real quick. Now that I know what I am doing I will do that more often. We have had to take Lili on two more trips outside of the house since I last wrote. She has had to go and get blood drawn and she has had a checkup with another one of her doctors. He said everything looks perfect and he can not believe how relaxed we are with everything. That makes me feel good. Yesterday was an adventure to get to that appointment. Everything that you think will never happen did. When we first started our trip things were going great as usual. We got onto the highway and after a couple of minutes Lili needed suctioning. The nurse tried to suction her but the suction machine would not suck. She continued to try and get it to work but was having no success. Liliana continued to desaturate so I had to quickly pull over on the side of the highway and hop out. LeeAnn handed me a De Lee suction catheter and continued to try and figure out the portable suction machine. For those of you not familiar with a De Lee catheter, which I assume is most of you myself included up till yesterday, it works manually. One end of the catheter goes into her trach and the other end goes into MY mouth. I had to manually suction her about 5 times using only the suction generated by my own lungs. It was quite a new experience and worked perfectly. Liliana's oxygen saturation returned to normal and LeeAnn figured out that when the lid to the suction canister was put on something got wedged between the lid and the container which would not allow it to create a suction. I don't think that mistake will be made again. The rest of the day went fairly well. Her doctor visit went great. The doctor said that everything looks great and he gave us some suggestions about weaning her vent by doing CPAP trials. It was very tough getting back to work this week after having 5 days off when she came home. My first day back I felt sick to my stomach. After I saw how well LeeAnn handled everything on her own, my jitters went away. My 4 day stretch at work went on without any major problems at home and now I am off and can't wait to spend some time with my baby girl. I'm excited for Saturday. It looks like we don't have a nurse at night again. I had a lot of fun taking care of her last Saturday night when we didn't have a nurse as well. I kind of wish that I could have one of these days to take care of her every week. Here are a couple of pictures from the last week.

Happy St. Patty's Day

2006-03-17T22:14:00.000-05:00

Happy St. Patty's Day to all. I hope you were wearing your green today. I'm experimenting with a new idea...green wine. I had some blue and yellow food coloring laying around.