Liliana Sue

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.

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!

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!

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.

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.

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.