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.

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.

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!

Wordless Wednesday: Puppy Love

Lily just loves our dog Cocoa!


Show me the love!

Awwwwww!

"It's a Wonderful Life"

I've been racking my brain for the last 15 minutes or so on what to post today. I'm sure many of you get tired of hearing about the same things over and over again. I went back and read some of my old posts from when Lily was in the hospital and I can honestly say that I feel like a new person since then. I could sense the worry and fear in my posts and all along God had everything under control and was taking care of things in his time.

I remember one post that I did awhile back where I just let everyone know how completely upset I was about having a child with Ds and how I was having a hard time coping with things. I still get frustrated some days but I know that the Lord has begun to heal my heavy heart. He has begun to show me just how much of a joy and a blessing Liliana has been and will be in our lives. He never promised it would be an easy journey and looking back to the hospital and all we went through I would never have thought I would have felt the way that I do now. God is so good and he always keeps his promises.

Now when I meet people out in the community and they ask me about Lily I answer them very proudly and with my head held high. I am not ashamed. I love her and I feel very privileged that God has chosen me to raise her. So if there are any new parents out there or anyone that has just received a diagnosis I would tell you, "It's a Wonderful Life!" You may have shed many tears so far but the time for crying is over. God is here and he made each and everyone of our children special for a reason. He wants us to see just how much he loves us through them. He wants us to know that it is going to be ok and to open your arms and receive all that he has to offer you. My daughter is beautiful and I thank God everyday that I have her and you can thank him too. She is my special little angel from above. Amen.

Then and Now

Gwynny then...


Gwynny now.


Liliana then...

Liliana now.

My how my girls have changed!

Brown's, Babes, and Bakery! Yum!

Today was the last Brown's game tickets Bill got for his birthday so he and I went to have a little "Away from the kids time" at the Brown's stadium. Did they win? No, not the Browns. Final score 31-3! So sad. :( Did I expect them to? No, not really. I was just glad to get some time with the hubby and enjoy all the sites at the stadium. Grandma and Grandpa watched Gwynny and Lily for us which was very thoughtful of them. They also helped us out by dropping us off at the game so we didn't have to park a mile away and pay $25.00 to park! As it was, we ended up spending a nice amount of change at the stadium just for some nachos, 2 waters, a diet pepsi, and 2 cheeseburgers. Unbelievable! But all in all we had fun. While we were at the game Gwynny and Lily went to a little Halloween celebration at their great-grandma's assisted living. We call her Nanny for those who are not family members reading this. After the game and the party they came back to pick us up and we went to this wonderful Slovenian restaurant downtown called, "Sterle's"! They have the best apple strudel there! Their food is out of this world too! So we had a lovely dinner and now we are back home relaxing for a bit after putting the kiddos in bed. Here are some photos of our fun-filled day!

Me, :) posing with the Rock-n-Roll Hall of Fame in the background and the Lake Erie shoreline.


Official Brown's flag!


Some crazy looking Boa Man! Boa's were definitely an "in" item at the stadium.


Bill taking pictures and enjoying the game.


The Lake Erie shoreline from inside the stadium.


Gwynny showing off her ghost face painting at dinner.


Me and my cutie pootuties!


Oh, how mommy loves you!

Grandma's 80th Birthday Dinner!

Today was a busy day at the Rees house. After our usual morning routine of getting up and taking Gwynny to dance class I took Gwynny to the doctor to rule out if she had an ear infection or not. Turns out she doesn't but she has the croup type cough and has just been acting very out of it lately. We went up to church for Harvest Fest, which was fun. They had a guy with all kinds of animals putting on a show and they also had a craft show and free food and hayrides for the kids. We didn't go on the hayride because it was raining and cold but we did get a free lunch and Gwynny enjoyed the animal show. I found a really cute doll at the craft show that I bought to give to my mom from the girls. Gwynny helped pick it out. Later this afternoon we headed across town to meet my brother and his family, my aunt and uncle, and my mom for an 80th birthday dinner at Cracker Barrell. I can't believe my mom is actually 80! It was a really fun relaxing time. I think my mom enjoyed it even though it is hard to tell at times. We brought a cake with us and I swear the entire half of the restaurant that we were sitting on sang "Happy Birthday" along with us! It was really neat! Well, here are a few pics mostly of the birthday dinner today. Enjoy!

Gwynny is in the car and ready to head over to Harvest Fest!


Lily hangin' out at Grandma's birthday dinner!


Grandma getting ready to open her presents! She looks mighty happy!


This is a picture of the doll I bought today at the craft show from my girls! So cute!


Daddy taking a turn playing with Lily! Gwynny loves to join right in!


My Aunt and Sister-in-law cutting and serving the cake after we sang "Happy Birthday"!

Complete AV Canal Defect

The anniversary of Liliana's first open heart surgery is right around the corner so I have been thinking a lot lately about her heart and everything that we went through. I know many of you followed my blog religiously when we were at the hospital and gave much great support via the internet. Since not everyone probably remembers...Lily was diagnosed with a Complete AV Canal Defect. I have attached two links for those who would like to go find out more about the defect that Lily and many other Ds children have or have had fixed. I also included a link about our surgeon Dr. Mavroudis for those that may be considering the Cleveland Clinic for surgery for their child in the future. A little background information is never a bad thing. Hope everyone has a great weekend!

Complete AV Canal Defect
http://www.americanheart.org/presenter.jhtml?identifier=132

Dr. Constantine Mavroudis
http://my.clevelandclinic.org/childrens_hospital/departments/heart_disease/meet_dr_mavroudis.aspx

I Think I Can!

I'm gonna get my sissy's markers! Hee Hee! Hope she doesn't see what I'm doing.



Ahhh! Drat she caught me. . . I'll just look cute and flex my legs in my "trick or treat" clothes!



Time to try again! I think I can, I think I can!



I did finally get the crayons, but Mommy didn't get it on film. Na Na Na Na Na!

Awww....schucks I guess I'll just keep lookin' cute!

Wordless Wednesday: Sick Baby :(

Someone hasn't been feeling well! :(

Well, Liliana has been fighting off some kind of virus cold bug that Gwynny had for almost two weeks and seems to be over. Last week Lily wasn't feeling well and then as this week has begun to progress she seemed to get worse. In fact, today when we arrived at Speech therapy I told our ST that I couldn't promise her that Lily or I wouldn't sneeze or cough during therapy today. She quickly asked me if we were sick and I told her "yes". She then told me that we should just cancel our appointment because she had planned to do a bunch of exercises and things in Lily's mouth and she thought that Lily would not appreciate someone sticking their fingers in her mouth since she is all congested. So we got back in the van and came home.

The good news is...she went to the doctor this afternoon and our wonderful pediatrician said that Lily's lungs sounded clear and that her ears looked fine from what she could see. In her words, "She dodged a bullet!" There is so much junk going around right now here in Northeast Ohio namely the Swine flu that it is running ramped. Many of the school districts in this area have had to close schools because of it. They are seeing many cases of it every day. I am so thankful that Lily seems to just have an upper respiratory virus and should be ok. Our pediatrician gave her an antibiotic and assured me that Liliana would be one of the first patients to get the H1N1 vaccine when it arrives. They have compiled a list of all their patients that are high risk and Lily is one of them. I just hope it arrives in time. On another note, I also went to the doctor and have a sinus infection. No news here...I always seem to get them. Underwent some blood work and allergy testing lately to find out the underlying cause. Well, that's another story in itself. Hopefully we will be able to make it to OT tomorrow. I better get some rest. Good night all!

Another Interesting Encounter

Today I took the girls to Mc'Odonald's (that's what G calls it) for lunch since G earned a trip there last week but we weren't able to go last Friday. Anyways, after eating some lunch we went into the playland area and G was having a great time playing with two little boys there. Liliana was sitting in her carseat while I ran her 1pm feed. 3 women were sitting at the table across from us. Next thing I know G fell and was crying. One of the woman came over and asked if she was ok. I said, "yeah, I think so." Next thing I know G is back up and running around and playing like nothing happened. The same woman that came over to check on G says to me, "She is a good baby, isn't she (referring to Lily)?" I said, "yes, she is." After a minute or two she noticed that Lily was being tube feed. I then asked her if she was a nurse and she told me she worked at a local hospital near by. The conversation kept going and when she came over I found myself telling her about Lily's medical history with the 3 open heart surgeries and the mic-key button and all. For some reason I just added in that she had Down syndrome, don't ask me why, I just did. Maybe because she said she was a nurse in the Peds section of a hospital so I figured that she definitely had to have seen other children with Ds. I don't know. Anyways, once I told her she said, "I know." The other two women began to talk to me too and they just kept asking me questions about Ds and adding in things that they knew. This didn't seem to bother me at all. One thing they asked me that I have been asked many, many times was if I knew Liliana was going to be born with Ds while I was pregnant. I told them no I didn't and that I chose not to have any testing done. I also told them that I did not know about her congenital heart defect either. They seemed a little shocked about that but I told them that it didn't matter to me that Lily has Ds. I told them that when I became pregnant I knew that no matter what happened I would not abort my child. As we continued to talk the conversation went on to the fact of why would anyone ever want to abort a child with Ds? What is wrong with Ds? We all agreed that there is nothing wrong with it and I told them I like to think that my daughter has designer genes. They laughed. One of the woman began to talk about a group at Christ the King church that was called "God's Special Children" and how she used to be actively involved with it. I then piped up and said, " I go to Christ the King church!" She got excited and asked if they still had that same group, and in fact we still do. It meets every Wednesday night and it's a ministry at our church designed specifically for those adults with disabilities. Then as it turned out the woman who was the nurse said she knew I looked familiar, for she and I had just met and talked only 2 weeks prior to today when her son's band "For Him" was playing at our church. Her daughter and friends were in my children's ministry group that Sunday and she came down after the service to pick them up. I know we talked about where we lived and found out we live in the same city. Small world, I tell you! I told them that Liliana is a blessing in our lives and we are so happy we have her. This whole experience just made me realize that God moves in mysterious ways. If our friends Scott and Kathie had not told us about their church we never be there today. More importantly if God had not sent us Liliana we never would have been connected with our church. Our church CTK, was such a support to us when we were going through the surgeries and everything with Lily. They showed us they cared through food and money donations, but more importantly through their dedication to prayer. Those people prayed like no others. There is power in prayer folks. I am so thankful and so grateful that God had his hand in every part of our journey with Lily. God used something that in the world's eyes might seem so tragic to bring a family to him. He brought us together, closer together, and closer to him. Thank you Lord! It was no mistake seeing those people at Mc'Donald's today. It just helped me to reaffirm God's neverending love and grace that has brought me this far and will continue to carry me even further in the future.

Day #18: 31 for 21- Another Busy Day!

We had another busy one today. Went to church this morning and then rushed home after to grab a bite and head off to my brother's for my niece's birthday party. Gwyneth just loves to see her cousins and we have such a hard time getting her to leave. Lily was a perfect little angel today. I think she is finally starting to feel a bit better? Anyways, she had fun being passed around, playing on the floor, and bouncing in her bouncy seat. I am exhausted. We don't usually go this much on weekends. We usually spend at least one day at home and we didn't spend a full day at home at all this weekend. Well, I won't complain on here but I will have to post again for 31 for 21 tomorrow. Hope everyone is enjoying the fall no matter where you are. It's such a fun time of year. Have a wonderful week everyone!

Halloween Party

Well, last night may have been a cold and rainy one but tonight was definitely much more comfortable. We took the girls to a Halloween Party through Grandma and Grandpa's development. They always have different things around the holidays for the kids to enjoy so we thought we would go since it was free. Actually, Bill is still there right now with Gwynny and his parents. I on the other hand, went for about the first hour and a half and then Lily and I came home. She has had this stinkin' cold all week long and it is really kickin' her little behind. She was so crabby after only being there for a short time so I ate something and did a couple things with Gwynny and then Bill and I decided that it would be best to bring her home and put her in bed. So Daddy dropped off Lily and I and went back to the party. It is so quiet around here I don't know what to do with myself. Amazing! Well, I did manage to take a few pics of my girls in their costumes tonight with my camera so you all can see how cute they look. I hope to get some better ones of Lily in her costume when it gets closer to Halloween but you get a basic idea. Another busy one tomorrow...church, membership classes, then out to my brother's house by 4pm for my niece's b-day party. The fun never ends this weekend. Have a good rest of the weekend everyone!

We Froze Our Butts Off!

Now that I have your attention...LOL we did get a bit chilly and got rained on while at our local zoo event, "Boo at the Zoo" tonight. All in all we made the best of it and the kids really had a good time. It really wasn't a good night to have Lily out and about though. We put on her Minnie Mouse Halloween costume with a sleeper underneath and then put a hat on her instead of her ears and wrapped her in blankets. She probably stayed the most warm and dry of any of us because she stayed in her infant car seat with the top completely covering her from the rain in her own little cocoon. I was so worried about her though, wondering if I had her dressed appropriately and if she was ok. She really did well. She cried a little bit when she couldn't see us or if something got too loud but for the most part she was happy as a clam. We did seek out some warmth and comfort in several of the buildings they have there like the Wolf Lodge and the Medical Center. The kids were able to do some fun activities at both. Gwyneth was very excited running around in her Snow White costume! She was especially excited when she saw Cinderella at the gates. I mean the woman dressed up like her looked exactly like she could be Cinderella! Gwynny was awestruck! Can't wait till we go to Disney in February and see the look on her face there! :) I wish I had some pictures to post for you but I forgot my camera and Bill only took a few since the weather wasn't very cooperative. Maybe I can steal some of his once he gets done editing them. Well, I am exhausted so I am going to hit the bed soon. We have a very busy day again tomorrow and Sunday. Take care everyone and have a blessed weekend!

Physical Therapy

Today Liliana had physical therapy. We love our PT! She works so well with Lily and has such a sweet nature about her. I am posting some pics of Lily working very hard. She has a runny nose and isn't feeling her best but she still had a great work out today. As you can see in the pictures our PT uses a lot of different toys that make lots of noise and she also sets Lily behind a little bench that is padded and low to the ground. This helps Lily to play and keep her balance without getting hurt if she should fall. She is getting soooo close folks to sitting up on her own! It is amazing! She can sit for maybe 20 seconds before she starts to fall and she even has been using her hands to catch herself when she does. So coooollll! She also worked with the ball today. Lily usually doesn't like it for whatever reason she was ok with it today. She is such a little champ!