Wednesday, November 11, 2009

Wordless Wednesday: Look at Me!

Monday, November 9, 2009

Fun Times with Friends

Let me just say...I had one crazy weekend. Out on Friday night with the girls for my friend's 40th birthday celebration. I haven't been out with the girls and had that much fun in a LONG time. Got home late then had to get up Saturday and we met our Scottish friends for lunch and the Children's Museum.

They are a lovely family. We met our friends through a Ds listserv finding out that their son A was going to have open heart surgery at the Cleveland Clinic like Lily did. We were already at the clinic when we started talking via email. Once A arrived for his surgery we met and have stayed in touch ever since. It was so nice to see how much the kids have grown and how well A is doing. They are so sweet to Bill and I, always telling us how much they admire us. It's very touching. We are so glad that we have had the opportunity to meet some amazing families through our experiences. God has blessed us beyond belief! Here are some pictures of our afternoon at the museum.



A and Lily chillin in their strollers!


Look at that happy girl!


Gwynny had a blast! Here she is driving the car. It was very difficult getting her out of there!


Smile Big Boy!


Our friend J holding Lily and A checking her out!


All of our kids together, except Gwynny, of course because she refused to get in the picture.
What a funtastic day!!!

Wednesday, November 4, 2009

God Had a Plan


Liliana after her 1st open heart surgery


Liliana today!

Today marks the 1 year anniversary of Liliana's first open heart surgery to repair a complete AV canal defect. I remember waking up really early with an empty feeling in the pit of my stomach. I remember waiting for them to come and take her out of my arms and how I broke down and cried because I was so scared of what might happen. I remember thinking...this is all just a dream and I'm going to wake up and everything will be as it was but it wasn't a dream. It was reality. Reality that I had to face and come to grips with.

I didn't have a blog at the time of her first surgery so I don't even have any way of going back to relive the exact thoughts I had that day. Bill was blogging at the time but he isn't the type to express how he feels through his blog. Here is a link to his blog to read more about those first few weeks in the clinic. http://wsrees.blogspot.com/2008/11/surgery-day_05.html It did bring back a flood of memories though when I read his posts from those first few days in the hospital. Oh the emotions we felt! Little did we know that what seemed like a routine surgery for most would turn into a 3 1/2 month hospital stay which included not 1, but 3 open heart surgeries!

I could go on forever about everything that happened. We are so grateful for all the staff, nurses, and doctors at the Cleveland Clinic that took such good care of our Lily. They cared for her and loved her just like she was their own. Their generosity and concern for Bill and I will never be forgotten. They are some of the best people in the world.

I can honestly say that through this whole experience God had a plan. I have blogged about this before and it's true. They say that everything happens for a reason. I know that God used Liliana's hospital stay as a way to bring our family closer to him. He connected us with our wonderful friends Scott and Kathie and in turn we were introduced to our church, the church we now attend and are active in. Our church played a key role in supporting us through this whole thing. They provided food, donations, and most of all prayers and support for our family above and beyond what we already were getting from our own families. He used those around us to bring us back to him to focus our attention on what really matters.

Do I believe in miracles? YES, I do! Because my daughter Liliana is a living miracle! She is a testimony of God's healing power and his neverending love for us! He has taught me through Lily to love again, unconditionally. He has taught me to trust in him and believe that he is in control and that he will supply all of my needs according to his riches in glory.

I had doubts and I had fears but I am here to say that with the help of the Lord I have been able to overcome them. I still have my faults and I still doubt at times and have fears but I know that it will all work out. God will guide and lead the way if I only believe. He has given Liliana to us for a reason. He wanted to show us just how much he loves us, just how much he cares and he did it all through the life of our sweet little girl. Thank you Lord for her life! Thank you Lord for bringing our family closer to you. Thank you for letting us know that the future is bright for Liliana and that we don't have to be afraid of Down syndrome. She is a blessing in our lives and we cherish her with all our hearts. Thank you for opening our eyes this past year and helping us to learn what the true meaning of love is.

Saturday, October 31, 2009

Halloween 2009

Today was a very busy day start to finish. We had dance class, cleaned the house, pumpkin carving, cooking dinner, trick-0r-treating, and clean-up. I'm beat. Here is a bunch of pics from the day. Happy Halloween everyone!

Daddy and Gwynny cleaning out the pumpkins. In Gwynny's words, "This is disgusting!"


High Five!


Me attempting to try one of those pumpkin carving kits that's supposed to look like one of the Disney princesses. Yeah, right? Let's just say...good thing there was another side to the pumpkin.


This is what you are supposed to do with the stencil then use this funky poking tool to trace the outline. Too difficult for me. Too much details for Beauty!


Gwynny and Lily in costume.


Whose our favorite mouse?


It's Lily! Yeah!


Our finished pumpkins.


No flash pic of our pumpkins even though you can't see Daddy's Jasmine pumpkin on the bottom step. His was the only one that actually came out. Well, I'm am happy to say that I met the 31 for 21 challenge this month and I am pretty proud of myself. There were days when I did not feel like posting but I did it. Hope you all enjoyed it and actually learned or gained some information from all of it. I'm sure I will not be as diligent about posting this next week but I will still give it my best shot. Have a great rest of the weekend.

Friday, October 30, 2009

Too Good to Be True

Today I received a phone call from the case manager at Help Me Grow our EI through the county. She wanted to set up a time to come out and reevaluate Lily. She calls me almost every month to set up a meeting and sometimes it happens and sometimes it doesn't. We are so busy every week with therapy 2 to 3 mornings a week that I hate adding one more thing to my plate. It has been really hard just trying to find a time to fit in our Intervention Specialist visits so many times they just come join in with one of our therapists.

Anyways, that said... I was very open and honest with our case manger today about the whole EI that we have received so far. I told her how I have felt lately like I am not receiving anything new from the IS than I already have received from our therapists. I told her when they attend a session with one of our therapists I feel like they are just riding the therapist coat tails. Maybe I was harsh but I felt like I needed to let her know so that she is aware of what is going on. Why waste my time or theirs? She agreed with me. In fact, she said that when they evaluated Lily back in August she felt like all they were doing was checking up on the therapists. She then told me she had something else she could offer me. What could you possibly have to offer me or better yet Lily?

There is a program specifically designed for toddlers 18 months and older that is funded through the state. Lily is going to be 17 months old November 6th. So since she is so close to being 18 months old she would qualify for this program. What it involves is that Lily would attend a center 2 days a week either Tuesday, Wednesday, or Thursday, Friday from 10am-4pm. She would benefit from the activities they have there and the socialization piece of development that is so important. I don't know all the details about the program yet, because I haven't talked to anyone directly involved but I am very anxious to learn more.

We have an appointment next Friday, November 6th to meet the director and intake coordinator to see the center and what they do there. They told me that they would even come to our house and transport Lily to and from the center if we wanted them to. This is amazing! I had no idea that anything like this was out there and available to us. I'm hoping it is worth it. What do you think? Does anyone out there have their child involved in something like this? I guess we will find out next week. Until then wish us luck, say a few prayers, and we'll leave the rest in God's hands and everything will work out for the best.

Thursday, October 29, 2009

Picking Out Pumpkins!


Tonight Bill and I took the girls to pick out pumpkins at a local farm. We had a great time roaming around trying to find just the right one. Here are pics of the trip. Gwynny is in her car seat ready to go as usual.


Should I pick this one? Hmmmmm...I don't know.


Hi Everyone! I just love being out with my family picking out pumpkins even though I'm too little to carry them yet, but look out next year baby cause I'll be back.


Say "CHEESE"!


HAAAAAA! You crack me up!


What is this stuff stuck to my legs anyways? Whoaaa!


Off to keep on looking!


I don't care what you do. I'm staying here to wait for The Great Pumpkin!

Wednesday, October 28, 2009

Wordless Wednesday: Puppy Love


Lily just loves our dog Cocoa!


Show me the love!

Awwwwww!