Liliana Sue

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.