Thursday..............................

Today is Thursday. Lila hasn't been out of the house since Saturday night. She's not acting sick during the day, but her nose never stops running. She hasn't had a fever, she just coughs a bunch at night. When she wakes up in the morning her voice sounds like Darth Vadar and this is what we see: (Warning- this is very gross)




She's going a little stir-crazy and I can't blame her. She's such a funny kid. She totally cracks me up- you never know what she's going to say. (Warning- Facebook repeat) Yesterday, we were cleaning her playroom together. I took a piece of pretend food and tossed it across the room, aiming for the plastic container it belongs in. I got lucky and it went in. Lila said, "Good job, mama!" I said, "I know, right- I'm the woman!" She said, "You a woman!" Then tonight I kept her up late because her daddy was on his way back from New York and I knew he wanted to see her. She was getting a little fiesty, fighting sleep, running here and there, reaching for every single thing she knew she wasn't supposed to touch. I asked her if she wanted to play ring around the rosie, which she loves to play. She told me no. I said, "Fine, I'm going to play with Ariel." So I went and got Ariel out of the dollhouse and started to play ring a round the rosie with her. I thought it might make Lila want to play too but not so much. She walked over to the dollhouse, got Cinderella, and handed her to me. "Here, mama" she said. And walked away. Smarty pants.

Love this kid!

Linda

Miss Lila

Blogging has obviously been at the bottom of the list lately. Things have been so busy and I constantly find myself running out of time. I have a pretty long list of things I need to blog about. Maybe I should start with some summer playdates, or our vacation to Wyoming and Utah in AUGUST. Yes, August. There was Lila's birthday party in September, the Buddy Walk last week, a trip with friends to NYC this week and Lila's first costume party last night. Unfortunately my laptop took a dump while I was in NYC and I don't have any way to edit pictures right now. Fortunately we think it's just the back light so that should be pretty easy to fix. Should be. We'll see. Since I can't post pictures I have decided to do a little bragging about our little princess. She is doing so well with her speech. (Did I mention that we started her on Ginkgo Biloba?) It amazes me how she tries to say everything that we say. Little copy-cat. Like tonight when Tiffani said, "OH CRAP!" and Lila turned around and said, "Oh, crap!" It was pretty funny. She has some issues with words that are more than one syllable, especially names for some reason. Last night we were on the way to a birthday/costume party and we were going over the names of the kids that were going to be there. We started with Sammi and Nika. For Sammi she says "Mammi" and for Nika she says "Kika". You can break it down for her and say "Ni" and then "Ka" and she says it right. But if you say it all at once you get "Kika". So we're working on that. I guess a strong point for her right now would be stringing words together. It's so awesome. If someone walks out of a room, like her dad for example, she will say, "Where daddy go?" Or if she doesn't understand something that's going on she will say, "What you doing daddy?" Today she was turning on the stereo (which is a big no-no) and after I made her turn it off again she looked around and said, "Where my water go? Oh, here it is!" I love the way her language is exploding. She is also doing so much better with gross motor skills, absolutely not a strong point for her in the past. Last week at PT she walked down 5 stairs, by herself, holding the hand rail. So cool. Last night she walked around in her Snow White costume all night long. A long dress. I have to admit, I was a bit nervous about her wearing it. I packed regular clothes for her and I was certain that we'd be putting them on her sooner rather than later. All that worry for nothing. We stayed at that party until 10:30 p.m. and she walked around in that dress the entire time. Gotta love progress. Oh, OH! I almost forgot about one little thing. For over a year we have been trying to get Lila to ride one of those little "ride-on" toys. You know the ones, you can either push them or ride on them but they don't have any pedals. Lila has never gotten the concept of moving forward on one of those toys. She always pushes backwards. Even when you take her legs and move them for her- as soon as you move your hands, she's reverts to pushing backwards. Last week our PT, Carla, asked if Lila had gotten the hang of that yet. "No", I replied, "But I would love if you would work with her on that. Whatever we are doing just isn't working." So Carla went and got one. You know what's coming, right? Lila climbed onto the toy and started moving forward. She made a liar out of me right then and there. I was thrilled! We went out into the hallway and she rode the little toy down the hall. I was so excited that I asked Carla if she would go and get one with pedals. She just shook her head and said, "Don't you think she you should give her a little time to master this skill?" Ahhhhh, the voice of reason. I'll wait a couple of weeks and ask again. : )

Here are a couple of unedited pictures from the party last night. Not the greatest pics but great memories!

Friends Kelly and Pat

Lila and her mama

The fam minus Justin at the party

Lila in her Snow White costume

Sisters

I will sign off now in anticipation of what could be a long night. Lila is upstairs coughing, congested and snotty. She hasn't had a fever, thank God, but is miserable. Hopefully she will sleep through the night. We have the vaporizer on in her room and have rubbed her down with eucalyptus rub. I will keep her home from school tomorrow, as a precaution. So far it hasn't turned into anything worse than a cold. We are pumping her full of Vitamin D3 and I think it's working. I've also been doing some research on Vitamin C and we will start her on that tomorrow.

Hopefully I will be able to edit pictures soon. I have much to catch up on, and some exciting things to share. Good things are happening.

Hugs~

Linda

Bake Sale

They raised over $900 today for Lila's Buddy Walk team! We are pumped! Can't wait to add it to our total- but that will have to wait until next week.

We are blessed~

Linda

Sisters...................

Just thought I'd share a picture of my beautiful girls. Every day when I pick Lila up from school she asks me, "Sissy home?". It's too cute!

Hugs~

Linda

Random happenings at our house........................

Things have been pretty busy at our house lately. I'm running around like a chicken with my head cut off. I've basically hired Lila as my assistant.

On her breaks she watches videos. Here she is figuring out how to turn on the DVD player.

Apparently I need to teach her how to do laundry- it's really stacking up!

My husband has been working hard on preserving the last of the tomatoes from his garden.

(Hey- I warned you this was random)

This squirrel isn't helping with the process.

(Nick probably won't see the humor in this)

All in all, things are going okay. I am busy helping with the final preparations for the Buddy Walk, which is next weekend. I had been really dreading the Buddy Walk because the majority of our family either lives too far away or they are too busy to come walk with us. I'm no longer dreading it. Nick's work "family" has stepped up to the plate in a big way. We have people signing up on Lila's team that we've never even heard of. I have no idea if they will actually show up or not but the fact that they care enough to go on our Buddy Walk page and donate to the cause is awesome. Some ladies from one of Nick's departments are having a bake sale tomorrow to raise money for our team. We are so blessed.

After the Buddy Walk is over we will dive head-first into Lila's IEP and the over-stimulation issues at school. That's a post for another day.

Hugs~

Linda

Happy Down Syndrome Awareness Month!

As most of you probably know, October is Down Syndrome Awareness Month. 4 years ago I definitely wasn't very "aware" of anything about Down Syndrome. At 11 weeks we had a "probable diagnosis" and at 16 weeks it was confirmed by amniocentesis that our baby girl would be born with Down Syndrome. Much research ensued, coupled with emotions that were all over the board. She was miraculously born, had surgery on day 2, stayed 7 weeks in the NICU, came home and we settled into our new life. With new awareness. New blessings. New sensitivity. New compassion. New knowledge. And the list goes on and on.

Here's a paragraph from Lila's birth announcement letter:

The joy and happiness Lila has brought us in her short life cannot be expressed. We are so thankful for the gift of her life. We did not choose this journey but if given a choice, we wouldn't change it. We believe that the blessings that lie ahead will far outweigh the challenges. We also believe that the challenges that lie ahead will bring us to an even greater awareness of God's faithfulness. With the help of God and her family, it is our hope that Lila will grow up to be strong and healthy. Although she may travel that road a little slower than others, we will consider each milestone in her life a blessing.

I remember writing that letter, crying as I wrote it. I meant every word. Today, I mean every word of it times one thousand. One million. I can't even put it into words or use a number to describe how I feel.

We did not choose this journey but if given a choice, we wouldn't change it.

That sentence? I mean it. I wouldn't change Lila for anything in the world. I wouldn't even take away the fact that she has Down Syndrome. I just wouldn't. Nor would anyone in our immediate family as we have had many discussions about it. In one family discussion we were talking about the fact that some people feel sorry for us because Lila has Down Syndrome. We find that a little sad, but we know it's because they just don't know. And maybe there isn't any way you could know unless you have been blessed with a child that just happens to have an extra chromosome. T21 if you will.

As for our family, we're aware. And we're so, so thankful.

Happy Down Syndrome Awareness Month!

Hugs~

Linda