Tuesday, August 04, 2009


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

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.

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