Thankful A-Z: Zealous

This past year I feel like I have become a more zealous person in many areas of my life. Of course, the most obvious is taking care of Liliana's needs and realizing that I am her #1 advocate. If I don't speak up for her no one will. She depends on me for so many things. Her day to day care, her medications, her feedings, her doctor appointments, I could go on and on. I have to be on top of my game or else everything will fall apart in an instant. Bill has been a zealous daddy too! He is such a support to both Lily and me. We could not make it without him. It hasn't been easy to become a more zealous person at times but God is showing me that my diligence and perseverance will pay off. Oh, and for the most part I have been a zealous blogger for over a year now and I am pretty proud of that. Well, hope you have enjoyed my thankful A-Z posts and honestly I am ready to just blog about whatever I feel like blogging about for the day. God Bless!

Thankful A-Z: X and Y

Hi everyone! Sorry I did not post yesterday but I had a birthday party at my house for my niece that just turned one and by the time I could sit down to post I was exhausted. So I have to make up for lost time and I am doing the letters X and Y.

X is not an easy one so the only words I could think of were x-rays and xerox. X-rays absolutely have been a God send in Liliana's life. I remember the early morning when she was sent back from the step-down unit at the Cleveland Clinic to the PICU and how sick she was. We almost lost her. I remember one of the docs there that I really liked, pulling us out into the hallway to look at the x-rays they had taken of her lungs after she had aspirated. It was obvious that she had a lot of junk in there because you could see the spots all over her lungs. Getting x-rays while she was in the hospital was a regular thing for her. I am so thankful that we have had the use of x-rays in our lives because without it I believe our Lily would not be here.

Y is for year! I am thankful that even though 2009 started out a little rocky for us, with Lily still in the hospital recovering from her third OHS and all, we still made it through that chapter of our lives and we are much stronger people for it. God has a way of using our circumstances and people around us to make us stronger and show us how much he loves us. I thank God every day for this past year and I look forward with hope, and love, and joy to what 2010 will bring. We are absolutely enjoying every single minute with our Lily and we can't wait to see all the new challenges she will overcome. Thank you Lord for a wonderful 2009!

Thankful A-Z: Wild Weather!

Yes, Cleveland is a very interesting place to live. We get a lot of different kinds of weather here and I am very thankful for that. I love the change of seasons here because we know that we will see sun, heat, rain, freezing rain, and even snow! Yes, I said the "S" word! We don't have a really long summer so we cherish every minute of the 80 degree temperatures we get while they last! Spring....hmmm spring here is sometimes very short or it sometimes seems like we didn't even have one. Fall here is probably one of my favorite times of year! This fall the weather was unusually gorgeous! The leaves were just fantastic with all their beautiful colors. Winter is always long and living by the big Lake Erie snow making machine can cause some pretty treacherous situations. All in all we love our Cleveland weather and though it's fun to visit other warm tropical places we still love to come back home.

Thankful A-Z: Happy Thanksgiving! Vacation Time!

First let me start by saying, "Happy, Happy Thanksgiving to everyone out there!" We had a wonderful meal tonight at my in-laws and I am stuffed! Poor Lily... I think she may have caught some stomach virus because she started throwing up today. It started out slow and then as the day went on she got worse. She can't keep anything down. We didn't even give her her last feed of the night and we are afraid to run her continuous night time feed because it probably won't stay down. So we are just going to let her sleep and hope that she doesn't wake up in the middle of the night starving.

Anyways, that said I am very, very thankful for vacations! I love vacation time and even though I enjoy going places away from home I am also thankful for the times when we spend vacation at home such as right now for Thanksgiving. Bill took Wednesday off and then he was off today, Friday and the weekend. It's always nice to have some extra family time together during vacation whether it is on the road or at home. Our next away from home vacation will be the first week of February when we go to Disney World! We can't wait!

Thankful A-Z: Unity and Uncles

I am so thankful that as a family we have created such a bond of unity over the past year. Having a child with Ds can do that for a family. We have been through so much between Lily's surgeries and her everyday needs and it has helped bring our family closer together unified. I thank the Lord for that when there are so many families out there that are breaking up because of a child with a disability. We are becoming stronger because of our sweet Liliana. She means the world to us and we couldn't imagine our family without her.

I am also thankful for all the uncles that my kids have. Each of them is unique in his own way and we love them for that. My kids also have several great uncles which I think is very cool! They even have two Uncle David's. So I want to give a shout out to all my kids awesome uncles! Uncle Dave (my brother), Uncle David (Bill's brother), Uncle Ron (Bill's sister Annette's husband), Uncle Kelli (Bill's sister Traci's husband), Uncle Wayne (great uncle), Uncle Harlow (great uncle), Uncle Andy (great uncle), and Uncle Chuck (great uncle)! We love all of you!

Thankful A-Z: Television

Yes, I admit it. I have certain t.v. shows I watch religiously every week. After 8 pm at night I usually sit down and watch some t.v. show just about every night. It's my way of unwinding after putting in a full day of being a mommy, a counselor, a nurse, and basically jack of all trades. I'm usually exhausted and so some "me" time is always definitely in order. It's not the only way that I unwind and relieve stress but it is one of the main ways. Some of my favorite shows are "How I Met Your Mother", "Two and a Half Men", "The Biggest Loser", "Survivor", and "The Amazing Race"! Thank you Lord for television!

Thankful A-Z: School

In September Gwynny started going to preschool 5 days a week and I feel now that it was one of the best things we did for her. She is finally starting to learn and remember her letters and some of her numbers. She is making connections between things and recognizes print everywhere we go. She sings songs and tells me lots of stories about what she did or learned at school. She has made new friends and is learning how to get along and play with others. Maturity wise she still has a ways to go but I can definitely see improvement in Gwynny academically. The social part of things combined with the maturity part will also come together I'm sure as she gets older and spends more time in a classroom situation. Overall, I am very proud of her! She got a fairly good progress report this time around and I expect an even better one in May! I am very, very, very thankful for Gwynny's school! Oh, and did I mention it gives me a little break every morning for about 2 1/2 hours so I can spend time alone with Liliana! Yeah!

Thankful A-Z: Lily's Bunny Rabbit

I am so thankful for Lily's lovey which happens to be a Bunny Rabbit head attached to a soft fuzzy piece of blanket. She is in LOVE with that thing! She sleeps with him for naps and at bedtime. If she is upset and can't be calmed down just pull out Mr. Bunny Rabbit and she is happy as a clam! She actually hugs his head and then sucks on his ears when she is tired and falling asleep. It is the cutest thing to see. Hopefully we never lose Mr. Bunny Rabbit or we are in BIG trouble. I have tried to look for another one like it but haven't had any luck so far. So for now we will cherish the Bunny Rabbit and make sure that he stays safe. Hey, can you believe there are only 3 days till Thanksgiving? Unreal! Hope everyone had a great weekend?

Thankful A-Z: Quiet Time!

I am thankful for daily Quiet Time! For about the last year I have been unable to get Gwynny to take a nap so we started having Quiet Time in our room everyday. She is supposed to stay on her bed and play quietly with her dolls or look at books or something...just as long as she isn't loud. Well, most days it works out well and she will play quietly in her room for at least an hour or more. This is a God send especially when I am tired and I just need some "me" time. It doesn't always happen but most of the time when I am diligent about making her go in and take that break it is well worth the effort! Thank goodness for Quiet Time!

Thankful A-Z: Pool

When I think of the letter P I think of a lot of things I am thankful for but one thing that was absolutely a God send this summer was our local pool! Gwynny had a blast there this summer! Lily enjoyed it too! Gwynny still asks me now if we can go to the pool even though it has been closed for months and there is no water in it even if you wanted to swim. That's just how much she loves our pool. We are counting down the days till the pool reopens for the 2010 summer season! WooHoo!

Thankful A-Z: Occupational Therapist

I am thankful for our Occupational Therapist. We have had the same therapist since Liliana came home from the hospital and we LOVE her! She has helped me out so much when it comes to all the feeding issues with Lily. She showed me the mouth and tongue exercises to do with her to strengthen her mouth muscles and help keep her tongue in her mouth. She also worked with Lily and I on how to feed her orally and some different techniques to use with the spoon to help Lily begin to eat. She is now working with Lily and I on taking the sippie cup which I know is not going to be easy but with her help I know Lily will eventually master this skill as well. I am so very thankful and grateful to her for all that she has done! She is even helping with getting Lily to keep her glasses on. This may seem cruel but she put these leg braces on her arms so that she couldn't bend her elbows and take the glasses off. It worked! Granted we only had the braces on her arms for maybe 5 minutes, but I am hoping that we can increase the time gradually and eventually she will get used to having the glasses on and will keep them on. On another note today at PT we put the braces on her arms again and then put on her glasses and today she tolerated it for 12 minutes! Once we took the braces off she did not reach up to take them off for about a minute or so! I am ecstatic! I hope she continues to do well so that this no longer is a struggle for me. Anyways, thank you Lord for our wonderful OT I don't know what we would do without her.

Thankful A-Z: So I'm starting a little late!

Hello all!

Well, I wasn't going to do the Thankful A-Z because after doing the 31 for 21 last month I was having a little blog burnout. However, I love what people are doing with this so I am going to go back and do all the letters that I missed and then continue on from here. Does this seem silly? I hope not because I was thinking that I have a lot to be thankful for this month. This month will forever be engraved in my mind forever simply because of Lily's surgeries. Today is the anniversary of her second OHS! I can't believe it has been a year. I went back and read Bill's posts from the day before and the actual surgery day. It brings tears to my eyes. We again are so grateful and thankful that God gave our Lily another chance at life. I remember things being so stressful. Getting ready to spend Thanksgiving at the hospital. It was not a fun time but we made it through and it just makes this year's holidays so much more special for us.

Well, now on to the Thankful A-Z !

A- I am thankful for Answers! Answers to the many questions that I continually have through this whole process of raising a child with Ds. At times it is not always the answer that I want but I have found that through this process I have learned to accept some of the answers I get and move on. Usually in the end everything works out as planned. I know when I first found out that Liliana had Ds I was terrified I had so many questions floating around in my head it was crazy! Now I find it is totally different. I have so many resources available to me. Whether it's a friend, my church, the therapists, or my blogging buddies I know I can always find the answers to the questions I may have.

B- I am thankful for my hubby Bill! He is a wonderful husband and father! I love to see him interact with our two girls! Whether they are playing around wrestling, dancing, singing, or having a serious conversation he is always a pillar of strength in our lives. He works many, many hours per week so that I can be home with our lovely girls and he comes home and helps out even more. He is a wonderful man and I am so glad I have him in my life! I love you honey!

C-I am thankful for our church! If it wasn't for our church I don't know where we would be. I have said this a million times but they have been a backbone in our lives throughout everything with Lily and I can never repay them for all they have done. Thank you Lord for leading us there!

D-I am thankful for Dishwashers! Man, do they make life easier! We run ours usually once a day and I know some of you with really big families probably run them even more. What did we do before them...I know washed them by hand. Hate it! So thankful for my dishwasher!

E-I am thankful for Exercise! I try to workout 3 times a week at the gym. I wish it was more but I am thankful for at least this. It is definitely a time for me to relieve stress. This is so important with all the care and love that my little Lily and Gwynny need. It also has helped me to take off 30 pounds and I am still working on taking off more. Thank you Lord for excercise!

F-I am thankful for Friends! My friends at church, online, my BFF have all played a huge part of who I am. Thank you Lord for such wonderful friends that show their love, support, and caring everyday!

G-I am thankful for Gwyneth! Though Gwynny marches to the beat of her own drum she is my lovely little princess and I love her to death! I love her funny songs and dancing. I love her 4 year old reasoning and when she plays pretend with her dolls and Disney figures. She is a bundle of joy and I wouldn't change a thing about her. Thank you Lord for my Gwynny!

H-I am thankful for Helping Hands! So many people this past year have lent a helping hand to us! Our biggest helping hands have to be Grandma and Grandpa K. They babysit our two girls quite often and our girls just love them! We also have lots of other helping hands such as our friends and the people in our community that help make Lily's life so much better! Thank you Lord for Helping Hands!

I- I am thankful for Insurance! Man, if it wasn't for our half-way decent insurance I don't know how we would have paid and continue to pay for Liliana's heart surgeries and continued care. I know there is a lot of changes that our president wants to make to our health care system and I just hope that it doesn't make it more difficult for us to continue to get the medical care that Liliana so desperately needs. Thank you Lord for insurance!

J-I am thankful for Jesus! If he had not died on the cross for my sins I wouldn't have been set free from sin and had a way to get to heaven. Thank you Lord for your sacrifice for me!

K- I am thankful for my kids! I waited till later in life to have children and it took me awhile to get pregnant so I thought maybe it wasn't in the cards. Thankfully the Lord has blessed me with two beautiful children that I love very much!

L- I am thankful for my Liliana! She is my miracle baby! 3 open heart surgeries and she is alive and doing so well! Thank you Lord for giving me my beautiful baby girl with designer genes!

M-I am thankful for my Mom! She has been in a nursing home now for about 5 years but she was always an example of what a Christian should be as I was growing up. She was the one that took my brother and I to church during our younger years and encouraged us to be all that God wanted us to be. She stood by us and supported us through the good and the bad and to her I owe a lot. Thank you Lord for my wonderful Mom!

N-I am thankful for my Nissan Quest minivan! I have had it since 2004 and for the most part it has been a faithful set of wheels. Other than a few quirky things that like to happen on occasion such as the radio not working and the flat tire light coming on a lot I am pretty happy with it. The biggest thing is that it has gotten me back and forth to work safely when I did work, gotten Lily and I to her doctor's appointments, and also has taken us on several great vacations. Thank you Lord for providing me with safe, and efficient transportation.

Well, if you are still reading this I am now caught up with the A-Z Thankful! Yeah for me! Well, I am going to call it a day since it has taken me all day to literally finish this post! Happy Wednesday!

Guess Who's Living at Our House?

Well, you're probably wondering who I am talking about. It's Mr. Turkey! Wednesday night when Gwynny came home from her Rainbows class at church she proudly introduced me to Mr. Turkey! He is very unique! We especially like him because he is very quiet...you would never know he is here. So I think we will keep Mr. Turkey around at least till after Thanksgiving. He's a great addition to our family. Oh, and by the way Liliana's glasses are Specs4Us brand-Erin's World. They fit her nicely but she does NOT like to have them on at all. In fact I was going to do a whole other post about the glasses because I wanted to know if anyone could give me some ideas on what they did to help their child get used to them. The only thing that they gave me to help keep them on her is this lousy band that goes around the back of her head and it literally does nothing. Anyways, I'll post more on that later. Have a Happy Friday!

Wordless Wednesday: Look at Me!

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!!!

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.