Rees's Pieces

A Little of This, and a Little of That

2011-06-28T14:41:00.007-04:00

I haven't posted in almost a week. Man, I really want to be more diligent about all this. We have been really busy as I'm sure many of you are too. I have to say that so far summertime is kind of exhausting me already. I tried so hard to find things to keep Gwyneth and Lily busy and then I am the one kind of paying for it. I have been running around a lot lately. Swimming lessons, therapy, tutoring...the list goes on. I do have some great pics from the weekend and the end of last week that I didn't get to post yet. One is a really cool video of Lily walking with her walker at PT. She just amazes me with that little thing! Now if we could just get the BIG girl to eat? That whole process just continues to baffle me at times. She has a very limited diet which mainly consists of yogurt, pudding, stage 3 baby foods, and canned ravioli. She will eat mashed potatoes if I make them and then load them up with lots of butter and sour cream. She is just so picky. I have tried to introduce and reintroduce different textures and foods to her but that little stinker just throws a fit. She spent an hour in the highchair last night eating and then again today. ARGGHHH! To make matters worse she will not drink from her honey bear cup or her other Rubbermaid straw cup anymore. I have to force her to even get 3 little sips swallowed. I'm scratching my head. Any comments or suggestions on that one would be of great help to me. Sigh.

Over the weekend, we went to our annual church carnival and the girls had a great time. I have a few pics here to prove it. Lily especially liked the people dressed up in costumes..go figure? Gwynny enjoyed the bounce houses, and the face painting the best!

We are getting ready to go for a visit to Aunt Traci's soon so I'm sure to have pics up of that trip once we get back. Hopefully I will be able to post again in the next day or two. I really enjoy being back in the blogosphere. LOL!
P.S. Lily's summer school seems to be going well. She is happy getting on the bus and when she returns home. My only complaint is that the school so far has been very poor about corresponding between school and home. I have no idea how her first week went at the school. All I can go on is how she behaves when leaving and when returning home.

Wordless Wednesday: A Few More Pics from Father's Day Weekend

2011-06-22T21:29:00.005-04:00

Lily's First Day of Summer School

2011-06-20T08:53:00.006-04:00

Well, this morning was a little hard for me in two different ways. First, I had to get up at 6:30AM which for me is difficult and then getting Lily on the school bus to go to summer school was a bit of a tear jerker. She got on the bus and the woman was adjusting the seat belt on the car seat and Lily just kind of looked up like what is going on? I know she will be ok, but it's that whole thing of putting your baby on a BIG yellow bus and trusting that other people will take good care of her till she comes back to you. Nerve racking! Well, I put pics up of her getting on the bus and the bus pulling away. Should of had a picture of me with the box of Kleenix!

The BIG bus pulls up to our driveway!

Lily has no clue what is going on! Huh?

Bye my sweet little girl!

Happy Father's Day!

2011-06-19T21:26:00.022-04:00

First let me say, "Happy Father's Day" to all the dads out there. My dad passed away almost 2 years ago now and I still can remember all the fond memories of him over the years! He was such a special man in my life. Always there to lend a helping hand to whoever needed it. He was thoughtful, kind, caring, and funny. He loved his grandkids too! Happy Father's Day Dad! I love you and miss you!
Now my hubby, Bill...well he too is a GREAT dad! He loves our girls very much! He is loving, caring, playful, and fun! I don't know what I would do without him here. I am truly blessed to have such wonderful man in my life who is a very special father indeed. So today I decided to plan a family fun day packed with things that Daddy and the kiddos would love. Grandma and Grandpa K. came with us too. Here are some pics of our exciting day at African Lion Safari!

Bill opening his Father's Day presents!

This is the entrance to the African Safari. So much fun!

Lily and Grandma

Gwynny checking out the sites!

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Lily loves to wear Grandpa's hat!

Daddy being silly with his camera rain protector!?

In the van waiting to get in to see and feed the animals!

Hey Mr. Llama what's up?

That's one hungry Longhorn!

What do you mean that's all I get?

This SUV was ahead of us through the safari...let me just say these people must have bought stock in carrots! They had an endless supply it seemed and they were not shy at all when it came to the animals. This giraffe at one point stuck it's head completely down in the sunroof of that SUV. Wish I would have caught that on film!

We had an awesome time despite the rain that fell. We enjoyed an ice cream cone there and we even got to see pig races! Too funny! On the way home we topped it all off with an excellent dinner at the Roadhouse. All in all a very fun family filled day! We love you Daddy!

Summer School for Lily

2011-06-15T20:53:00.002-04:00

Wow! Today I finally received a phone call regarding Lily's summer school. It starts next week and I hadn't heard anything as to what days she would be attending. The only thing I knew as of last week was that she was going to be starting on the 20th. She will now be officially a part of our city school district. It's hard to believe. I am a bit nervous about putting her little tush on that BIG bus on Monday but I am going to say a lot of prayers and leave it in God's hands. I have had a good feeling about our school district right from the start so I am hoping that it stays that way. In fact, the school psychologist was wondering why I didn't have that many questions. I told her I felt that they were truly doing their job and being that I have taught before and dealt with IEP's I kind of knew what to expect. Well, that was the big highlight of my day today amongst all the running my girlies around and tutoring. Well, I am off to relax and get to bed a little earlier tonight. God Bless all! Hopefully I will have some recent pics on here soon.

Summertime and trying to get things together

2011-06-13T21:14:00.004-04:00

Well, I haven't been blogging for such a long time. Part of me really misses it, yet I still have mixed feelings. I have been trying to spend more time this past year in God's word and in prayer. Things have really changed around here. God has provided me with a steady tutoring schedule and the kids always seem to have something going on. School ended last week and now all the summertime activities begin. I didn't know if I was coming or going at one point today. Between swimming lessons, therapy, Safety Town, and tutoring I was on the go all day. Gwyneth loved summer camp the past two weeks and hated to see it end, however, she started swimming lessons today and had a great time. She was doing her bobs and kicks and all that jazz. Lily and I sat poolside and watched all the excitement. It wasn't very warm here this morning so there were a lot of chattering teeth.
Lily is doing so well. The year she spent at the Achievement Center preschool did wonders for her. We are surely going to miss her teacher. She helped Lily bloom in so many ways. Lily is now using a walker to get around. She still has a long ways to go before she is going on her own but this morning I made her go down the front walkway at therapy and in the front door. It was amazing! We are so proud of her! I am kind of scared to see how inquisitive she will be once she is walking on her own. She is going to get into everything. She is still having a lot of eating issues and has not been able to get off the feeding tube yet. Very much wants to be in control and wants to eat like a BIG girl most of the time. She can feed herself (very messy) but she tries. She just doesn't want much to do with the cup. I've tried many kinds and her favorite is the Honey bear or this other one that I'm not sure of the name. The problem is she wants to drink only when she wants to. So we have good days and bad days. I just keep praying that God will somehow make the lightbulb go on for her soon.
We recently celebrated her 3rd birthday with a Wiggles party. So much fun! She LOVES music! She is very fond of the Wiggles and has a ton of their music on her ipod and videos on the Apple TV.
We have a couple of trips planned for this summer that we are looking forward to. One to visit Bill's sister in Indiana and one to Maine. We are really looking forward to getting away and spending time as a family.
Well, this post has been a collaboration over the past two days. That's what happens to me most of the time. Well, I must go and read and then off to bed.

Buddy Walk 2010

2010-08-10T10:01:00.002-04:00

Hey Everyone! Our family decided to participate in the 10th annual Northeast Ohio Buddy Walk this year. Surprisingly the response via donations has been very productive! Our team name is Rees's Pieces and we will be walking in honor of our little angel Liliana on Saturday, August 21st at 10am. We are really looking forward to it! If anyone would like to donate or come out and support us by walking with our team please click on the link from the widget on the side of my blog to get more information. Today is the last day that the walker registration will be $5.00 so if you want to walk it would be a good idea to jump on that today. Thanks everyone for all your love and support!

See How I've Grown...and my Sissy too!

2010-08-05T16:16:00.014-04:00

I turned 2 on June 6 and I have been sitting up for over 6 months!

I went on a cool boat ride at Aunt Traci's over the 4th of July! Wheeee! It was fun!

This is my mobile stander that helps me put weight on my feet. My school is letting Mommy borrow it for the summer. I'm getting stronger everyday!

Mommy and Me when we visited Aunt Traci's over the 4th of July!

I LOVE my Big Sissy! She's the best!

I go to school now like a BIG girl, but in the summer I go to my school's playgroups! They are sooo much FUN!

My Big Sissy Gwyneth had her dance recital and it was really cool!

What Can Possibly Happen Next?

2010-04-27T16:32:00.003-04:00

Well, it has been an interesting week to say the least. So many depressing things in the blog world and in real life. Sigh...well it tells me that trusting in the Lord is the only way we can survive.

Lily has been sick since last Thursday. It is really strange. She will be crabby and throwing up or having the runs one minute, then totally fine the next. She also has been running a temperature off and on. It's wearing me out. I've cleaned up more throw up and poop in the past few days then I can count. I thought she was starting to finally get over it today but then she threw up after we back from picking Gwynny up from preschool. I got her an appointment tomorrow morning just to get her checked out. Hoping for the best.

And another thing. Last night Bill's grandmother was taken to the hospital with chest pains and stomach pains. Bill's parents were out of town so he went up to the hospital. He stayed with her till he got some news from the doctor's and they told him that she had some fluid on her lungs so they were treating it with lasix. Bill's parents returned home today and we were given the news that this is the beginning of congestive heart failure for her. I was so crushed. I know she is 93 years old and has lived a long and prosperous life but it still hit home. All the emotions that I felt when my dad passed away came back and I just remember how awful it was seeing him dying. It made me cry. Hoping that things will start looking up tomorrow.

Busy, Busy Busy...As usual!

2010-04-23T16:17:00.003-04:00

Well, I haven't been doing a very good job of keeping up with my blog. I guess I'm lucky if I get at least one post a week up. This was another routine, but busy week. We had preschool for Gwynny every morning and Lily had speech therapy yesterday morning. In between I was doing errands during the day and then tutoring almost every evening. Tutoring has been going well and I thank the Lord for my small contribution to my family. It is better than nothing and I now feel like I am getting some satisfaction from my job, not like at Archiver's. The two kids I tutor are great kids. One is a first grader and one a fourth grader. They make me laugh which is very important for me.

I have been struggling with what to do with Gwynny for Kindergarten. I thought I had it all figured out and was planning to hold her back another year until I talked to her preschool teacher. Long story, short I am sticking to me guns and keeping her back another year. I would much rather she be one of the older kids in her class than the youngest. I think that will make a bigger difference in her success in school.

In the meantime, I was told that Lily would not be able to start the county's Toddler program until fall because they didn't foresee any openings. Well, Praise the Lord, I got a phone call the other day stating that Lily will be able to start on May 4th! WOW, did that throw me for a loop! Now I have tons of paperwork to get filled out by me and by her docs. It will only be for about 4 weeks but it will be worth it I'm sure. Lily will have the opportunity to socialize with other children and hopefully learn a few new things. Also it will give me a sense of what to expect for fall when she will be attending there the entire school year.

Another little tidbit on Lily she has been sitting up pretty consistently and I even caught her for the first time today going from laying down to a sitting up position using her side and her arm. It was so COOL to watch her! She is growing by leaps and bounds! She also does the wonderful flexible move that I know so many of you are familiar with and that is where she is sitting up and wants to go back into a laying position. She leans forward and swings her legs around to the sides so she is then on her belly. Amazing!

Well, that's my busy update for the week! I am hoping to post some pictures soon so you all can see how BIG she has gotten and how she has changed.

A Trip to the ER

2010-04-14T10:29:00.003-04:00

Last night around 10:30 I heard this barking and gasping sound coming from upstairs. I go up and Bill and I found Gwyneth practically gasping for air. We got out her inhaler and had her use it but she was so worked up that it wasn't helping. We had her go outside in the cool night air and that didn't seem to do the trick either. We then thought the best thing to do was to go to the ER. So Bill got dressed and we got Gwyneth together and off they went.

Meanwhile, all the commotion woke up Lily and she was freaking out in her crib! I went in and tried to calm her down but ended up turning on her little fish tank and letting her cry herself back to sleep after about 5-10 minutes. I then sat there waiting for a text or call from Bill letting me know what was going on with Gwynny. Finally, he texted and said that the nurse was checking them in. Unfortunately 2 ambulances showed up in the meantime so that caused an even longer wait. After awhile they were in a room and she was seen. They took x-rays of her lungs and then gave her a breathing treatment and some steriods. Bill said she was a very good girl. She did cry when they started the breathing treatment because it made her cough. It was for asthma. They then switched to a breathing treatment for croup and she was fine. So all said and done she has the croup! They sent them home finally and it was 1:30Am when they arrived back home. Man, am I beat today! Of course, Lily has no idea what was going on and she slept the best of all of us. She was up at the crack of dawn! Arrrrgghhh! Well, thank goodness Gwynny is ok. Kept her home today from preschool and now I'm trying to keep her and Lily entertained. What is a mother to do? Looking forward to a better day tomorrow!

Follow-Up on Surgery #4: "Yeah God!"

2010-04-07T21:47:00.003-04:00

Today was an uneventful day and I am glad for that. After picking Gwynny up from preschool we headed back down to the Cleveland Clinic to have the surgical nurse take a look at Lily's incision and change her bandage from her surgery Monday. The incision looks great! It is about 2 inches long and it is healing up nicely. She gave me some 2x2's to take home with me so I can change Lily's bandages. They don't need to see her again till she comes in for her 6 month cardiology appointment and that is just fine with me. She has been tolerating things considerably well. I am not surprised. After everything that Lily has been through this was probably like a cake walk to her.

I took Gwynny up to church tonight for her Rainbows class and I had a lot of people asking about Lily. I had only good news to report for a change! It was so refreshing! We do something in our church every Sunday morning called "Yeah God!" and basically what it is, is people get up and talk about anything good that God has been doing in their life lately. I can't wait to get up and tell everyone this Sunday about the wonderful thing that he did for Lily this week! I am about 99.9% sure that this is the problem we have been experiencing with the leaking of the balloon on the mic-key button so "Yeah God!"

Surgery #4: Remove Pacing Wire

2010-04-05T21:47:00.002-04:00

Well, it has been a long time since I have updated my blog. Having a hard time finding the time or energy to keep up with it. Today was definitely a very important day in our lives and very blog worthy so I had to make the time. Lily went through her 4th surgery today and she isn't even 2 years old yet! I know this may seem like nothing to some but with Lily she constantly keeps us on our toes around here. Let me back up a bit...I'm sure that many of you remember me continually complaining about Lily's mic-key buttons failing with the balloons popping. Well, that has not changed over the past few months. They continued to fail at a rate of approximately 1 to 2 weeks for the duration of 10 months. It has been nothing but a mystery to the docs at the clinic but a complete frustration for us and many phone calls to Kimberly Clark the manufacturer, but alas we think we found the culprit 2 weeks ago.

It was a Monday morning and I was going about my usual routine and went in to get Lily up for the day. I found her mic-key button out of her belly with no idea of when it came out. What was even worse was that I was unsuccessful at putting in a new one. So off we went down to the clinic to have the nurses give it a try. Cha-ching! They got it in but the GI doc wanted us to take Lily down to x-ray to have them check placement. Several hours later we were able to get in and have x-rays done. Everything looked great so the radiologist told us we could go ahead and feed Lily so we did. Later that evening I received a phone call from the GI doc stating that the feeding tube was fine but that they had found something else and that she needed to talk to me. By this time it was too late to contact her so I had to settle for worrying about what they found all night until I was able to talk to her the next morning.

The next morning I spoke with the GI doc and she informed me that Lily had a piece of a pacing wire embedded in her intestine. Say what? She explained to me that it had to do with her open heart surgeries and that they sometimes put pacing wires in place in case the heart gets an irregular rhythm and they need to use a pace maker. Well, in Lily's case they didn't need a pace maker so they eventually removed them and when they did they either pulled them or cut them off. Not sure what exactly happened in Lily's case but either way this wire was in her body and the GI doc felt that this was the reason why the balloons kept popping on her mic-key buttons. Makes sense right? Not to the surgeon and the cardiologist. They felt it was too far away from the balloon to be the culprit, but after talking with the GI doc and me calling and doing a lot of complaining they decided that this surgery was back on and that that wire needed to come out.

We arrived at the Cleveland Clinic at approximately 9:45am this morning and checked in a the J1 desk for admissions. We had to report to G51 where the PICU had been moved recently so they can remodel the old one. SWEET! Anyways, we immediately saw a very familiar face of our favorite nurse Ellen when we arrived and that made me feel so much better. We also were joined by Pastor Tom from our church and my good friend Kathie. Gotta love the support! The waiting around took the longest but eventually they took Lily back for her surgery. Lily was her same friendly, spunky self while waiting in her room. She was waving, squalling, and yelling out "Bye Gamma" and "Bye Gampa" to people coming and going! Those are her buzz words lately! She also did lots of sitting up and clapping for everyone! All the nurses and staff were just commenting on how great she looked and how cute she was.

Long story, short, the surgeon Dr. Stuart explained that he would be making an incision at the base of Lily's incision from her heart surgeries and using x-ray to help guide him to the location of the wire and remove it. He seemed very confident that he would be able to get it all. When he arrived at the waiting room over an hour later he brought me the wire in a container! This thing was 2 1/2 to 3 inches long, no doubt! I was amazed and I think he was too! He had a little bit of difficulty getting it out because it was deeper into her tissue than he had anticipated so he had to make her incision a little bigger. However, he got that stinkin' thing out and praise the Lord I am very hopeful that we will not be experiencing any further problems with the mic-key buttons. That said...

Lily was able to leave the hospital around 3:30 and came right home. She was a bit cranky this evening which is understandable since the incision is a little deeper than what was planned. All in all she is such a trooper! She did great! She is such a wonderful little girl and we love her SO much! I don't know what I would do without her! I can only thank God for his goodness in my life. I can only praise him for keeping me sane and helping me to raise this beautiful little girl he has given me. I am so thankful and I am so grateful! She is asleep and resting comfortably in her crib! God Bless you little Lily! We love you so much!

Disney Trip: Days 5-10 from Tragic to Magic!

2010-02-06T20:32:00.002-05:00

Well, I apologize for not blogging about our Disney trip the rest of this week but I was so exhausted every night when we got back that I just chilled out and relaxed. Let me go back to Monday and update everyone on our fabulous fun-filled week.

Monday we returned to the Magic Kingdom but it wasn't such a magical day as that is what they say to you after you pay the $14.00 to park and enter the parking lot. It poured down rain the entire day! I mean torrential downpours! We made the best of it and got around to as many things as we could trying to stay focused. We spent the majority of the day in Tomorrowland and some in Liberty Square and finally Frontierland. Gwynny actually rode Space Mountain even though she was not at all thrilled with being in the dark. Bill thought she would like it since she loves roller coasters but that wasn't the case. She also freaked out in "Stiches Great Escape" and I had to escort her out of there. What a pain! She was excited to see Jasmine and Alladin at there picture spot in Adventureland but she still refused to go up to get to get her picture taken. Oh well! We ended up cutting that day a bit short because we were all soaking wet and cold. This would be part of the tragic stuff! LOL!

Tuesday we decided to go to Disney's Hollywood Studios instead of Epcot. I had been reading about the different parks and everything I read suggested that if you have young children Epcot would be the least appealing for them. So we made the trek over to Hollywood Studios and that was definitely a GREAT choice! We had to deal with torrential rains again in the morning but we bought ponchos and wore them to help stay dry. Well, the rain stopped fairly early in the morning so we able to enjoy the park more without dealing with the rain. Favorites were "The Little Mermaid" musical show, Playhouse Disney's show, Beauty and the Beast Live on Stage, and the "Honey I Shrunk the Kids," playground. I really enjoyed this park with the HUGE Mickey's Sorcerer's hat in the middle as the center point. We also got to see several of the character's such as Mickey Mouse, the old man, boy, and dog from "Up", and the Incredibles!

Wednesday we went to Disney's Animal Kingdom. This was probably the least favorite park of mine. The major highlights of this park are the "Finding Nemo" Musical and "The Lion King" musical! Both were phenomenal! We also enjoyed the Safari ride to see the animals but the rest of the park kind of reminded me of our zoo at home. I guess we are spoiled with having such an awesome zoo in Cleveland. The park was only open till 5pm so when we got back home Bill and I changed and got ready for a night out on the town. Grandma and Grandpa babysat the kids so we could go out to Downtown Disney for dinner and to walk around. Very cool place to go! We had dinner at the Rainforest Cafe which is an animated restaurant with animals from the rainforest. We were serenaded by elephants and gorillas just to name a few. Afterwards we walked around and looked at the Lego sculptures and shopping in the Disney World Store! To end our night out we went to Ghiradelli's for a dark chocolate fudge sundae! Let me tell you...it was to die for! YUM!

Thursday was a bit more laid back in the morning. We slept in a bit, had a late breakfast and left for our last day at Disney's Magic Kingdom around 12 noon. We wanted to go late so we would stay later for the SpectroMagic parade and the "Wishes" fireworks! It was a great day! We went on Pirates of the Carribean, the Jungle Cruise, Swiss Family Treehouse, and Aladdin's Magic Carpets! Bill and I wanted to go on Thunder Mountain so right before the 3pm parade we got in line for the ride and Grandma and Grandpa took Lily and Gwynny to watch the parade. We had already seen the parade on Sunday. Anyways, Bill and I also went in the Haunted Mansion and Grandma and Grandpa took the girls back on "It's a Small World". That was Lily's favorite ride! As soon as she got in there she started clapping and kicking her feet! She was fascinated by all the colors and everything in there as well so it would have to be her #1 pick! We stayed late for the parade which was out of this world! So cool! I highly recommend seeing the SpectroMagic parade because it is like nothing you have ever seen! The fireworks display was also very cool because Cinderella's Castle changed colors during the whole thing and there was music that coordinated with the fireworks display! Fabulous! Lily on the other hand...had a complete meltdown during the parade and Grandma and Grandpa offered to take her away from all the action and took her closer to the entrance to wait until the fireworks were over. Gwynny, Bill, and I stayed up by the castle and watched.

Friday was a very laid back day. We slept in and then got up to temperatures in the 70's but cloudy. We decided to go to the pool and hang out. Lily didn't go in because I felt that it was just too cold for her little butt to be going in the pool and then back out into the cool air. Gwynny didn't mind and spent the whole morning in the pool with Daddy, Grandma, and me. Bill and I even decided to take the "Pirate's Plunge" down a waterslide they had at one of the pools at the condo! Total Blast! Grandpa took Lily back to the condo room and between him and Grandma they got her to take a nap. Thank goodness! She was exhausted by Friday and really needs to get back on her schedule. After lunch in the late afternoon it started to rain again so the pool was out of the question. We ended up spending the majority of the day inside packing but we did make a short trip out to the most unique Mc'Donald's in the world. It had video games, a kid's play area, all kinds of memorabilia on the walls, a singing moon man, and a statue of Ronald Mc'Donald on a bench. Very different indeed.

So that brings us to today. Today was a travel day and we made it to Charlotte, North Carolina the same place we stopped at on our way down. We stopped at a Cracker Barrel for lunch about an hour from Savannah, Georgia and then made two other short potty stops before landing here for the night. Planning on getting up at the crack of dawn and getting on the road early so we can get home at a reasonable time. FYI: We get to go home and deal with a broken garage door cable. Yep! My friend that has been taking care of our cat while we are gone went over earlier in the week and tried to open the garage only to find out that it would only open a few inches and close. She did not have a key to our house because we only left her a garage door opener so we ended up having to overnight a house key to her. Arrrrgggghhhh! Just one more headache to deal with when we get home! Well, I am tired and we are trying to get the kids to settle down and go to sleep. I definitely will be posting pictures sometime soon it's just that I took 958 pictures so that means I have 958 pictures to go through. Whew! Makes my head spin just thinking about it! Well, talk to everyone again soon when I get back home.

Days #3 and 4: Disney Trip-Arrival at our destination and our first day at Disney!

2010-01-31T21:40:00.004-05:00

I am a little behind on my posts but I was just so busy last night preparing for our first day at Disney today that I forgot to post about yesterday. Basically yesterday we woke up at a Residence Inn in Orlando and had a very leisurely breakfast at their breakfast buffet. We had some time to kill because we were meeting Bill's parents for lunch and then heading over to the resort where they have their timeshare to stay for the week. Lunch was at a Denny's, no big deal, but we were able to get into the resort early and check-in. The skies had been looking like rain all morning but it had held off of course until we got in our room and put on our suits. It started to pour! Gwynny was SO upset! How do you tell a 4 year old that wants to go swimming in a really cool pool with a pirate ship and all kinds of cool stuff that she has to wait until it stops raining? Hmmmm....well Daddy and Grandma decided to head over to the pool anyways with Gwynny after about a 1/2 hour when things calmed down a bit. Gwynny had a BLAST! The pool is definitely a highlight of this resort and it's only 1 of 2 that they have here. You could literally come down here and not even go to Disney and have a blast just hanging out at the pool. There is also a lake here, but you can't swim in it. I guess certain times of year you can get some kind of boat and go out on the lake but that wasn't available right now. They also have a Bar and Grill by the pool, as well as a playground and picnic area and miniature golf! It's really sweet! So after spending an hour or so down at the pool after Grandpa and Lily and I also came down shortly after the others we headed back to the condo and had a really nice dinner and relaxed. We had a big day ahead of us because today we were going to the Magic Kingdom!

This morning we woke around 6:30am to start getting ready for the trek over to WDW! We finally got everyone out of here around 9am and had to drive about 4-5 miles to get there. We parked then took the tram to the ticket offices but we purchased our tickets at the Disney store before arriving so we were able to go in and get in the line for the monorail. FYI: Those of you thinking about going to WDW and your child is fed through a feeding tube and takes medications that need to be kept cold do not fear. Disney will keep your medications cold at the First Aid office for no charge. We ended up not having to use that luxury because the weather today was very chilly. The high was in the 50's and it was very windy! I am so thankful that Billy went outside this morning before we left and came back in to tell all of us to put on heavier clothes or we would freeze our butts off! So we did and at times we were still cold. Still better than the 20 degrees they are having back at home I guess.

Gwynny completely enjoyed the day! We spent the day going through Mickey's Toon Town, Fantasyland, and Tomorrowland. We hit all rides and attractions in Mickey's Toon Town, and Fantasyland except Snow White's Scary Adventures because Gwynny opted not to go on that one. A little too scary for her! The only thing we did in Tomorrowland was "The Laughing Floor" with Mike Wickowski from Monster's Inc. Very cool! We especially loved Mickey's Philharmagic which was a 3-D movie that was very cool, the Dream's Come True stage show in front of Cinderella's Castle, and the "Celebrate a Dream Come True Parade". Lots of princesses to see in both the stage show and the parade. Gwynny was in heaven though she was convinced the witch in the stage show was the real one! LOL! There were also lots of characters located at specific spots throughout the park which was very cool to see. We didn't get any pics with them because Gwynny doesn't like to get close but we did get to see them in fact while waiting in line for the "Mad Tea Cup" we noticed that the white rabbit was on the ride and then Alice got on and joined him! So much fun! I felt like a little girl in a candystore today! A couple of times I just got very teary-eyed because I never ever thought last year that I would be at Disney World with my family especially with everything that happened with Lily. It definitely was a "Dream Come True" today and I thank the Lord for the opportunity to be able to go. We can't wait to get back there tomorrow and have even more fun! Stay tuned...

Day #2: Disney Trip- Deja Vu

2010-01-29T21:07:00.007-05:00

Deja Vu? Really you may ask. Yes, today was almost a complete repeat of yesterday. Let me explain why. Got up this morning and went to the lovely breakfast bar at the Spring Hill Suites hotel we stayed at last night. The waitress was very friendly and was more than willing to wait on us hand and foot even though we wouldn't let her. The topic of conversation among the business travelers was how quickly their colleague could speak today so they could get the heck out of Charlotte before the winter storm hit. Let me tell you, I think we definitely dodged a bullet there. We got on the road around 9 am and got far enough away from the storm that we didn't have to deal with any bad weather.

The first four hours of the trip went ok. Lily was not very happy to be in her car seat for a second day. She whined a lot and screamed a lot too. We stopped in Savannah, GA at a Ruby Tuesday's for a lovely lunch. I love how they ask you if you want your iced tea sweetened or unsweetened. I told the waiter I wanted "NO Sugar because that's how we drink it where we come from". LOL! :0) Lily was very happy with our dining situation. She was happy as a clam sitting in the little highchair chowing down on some Stage 2 applesauce and cereal. Yummmy! She was just as pleasant as she could be! But, and I mean a BIG but, she was like Jekyll and Hyde once she got back into the van. She spent the last part of the trip going from laughing to screaming and then back to laughing. We just wanted to get to our destination and fast. We would have arrived earlier if we had not been held up in a HUGE traffic jam just south of Jacksonville, FL on Rt. 95. That was a bummer! Anyways, we arrived to Orlando safely but a little stressed out! Once again we grabbed a very quick dinner, got the girls in the pj's, and got them into bed. At least tonight we have a door that separates the living room area from the bedroom area so Gwynny can't try to "Hang Out" with us like she did last night and told us she was going to the same tonight until we nicely informed her differently. Well, tomorrow we meet Grandma and Grandpa K for lunch and then we will check into the condo we will be staying at for the week. Yeah! Stay tuned for more adventures...

Day 1: Disney Trip-First Stop Charlotte, NC!

2010-01-28T21:15:00.003-05:00

Hey everyone! It has been a long time since I have updated my blog I know. I have been crazy busy! I thought I would just do a quick update to let everyone know how our first day of travel went. Well, we left our house this morning around 9:20Am with the dog crammed in with us and made a stop at the vet to drop her off for boarding. Not a happy camper but that's how it goes. We actually got on the road around 10:20Am and the kids were doing pretty good. Every once in awhile Lily would let out a yell or two. We stopped just near the West Virginia border for lunch at Mc'Donalds...Gwynny's favorite! That was approximately an hour ordeal and then we got on the road again. On the road again I can't wait to get on the road again...You get the idea. Anyways, I think it was somewhere in the mountains of West Virginia or Virginia when Lily just would not stop yelling. Every few minutes she would holler. I tried everything a mom could to get her to settle down but nothing seemed to help. I realized that part of the problem was the sun in her face off and on as we were driving. So after a few hours of her yelling we finally decided to stop at a Walmart and pick up some of those shades for the van windows only to find out that they wouldn't stay on because it was too cold outside and the window was a little dirty. Bummer! We will try again in the morning. So we had to endure Lily's screams for another 3 hours off and on. The main thing was that she did not want to be in the van ANYMORE! She was done at like 3pm. We finally made it to our reserved hotel in Charlotte, NC and after unloading the van Bill went to a local Taco Bell to pick-up some dinner. Not my first choice believe me anyways, he comes back and tells me that when he pulled up to the window to order the person working took one look at all the salt and snow stains on our van and asked him if the weather was really getting BAD outside, nevermind that it's like 50 degrees outside. You see there is a Winter Storm Warning here tonight and I guess living in the south saying the word "SNOW" sends everyone into a complete state of mayhem. Bill assured them that the weather was just fine and that the salt and snow on the van was from Cleveland where we live. Anyways, we are hoping that everything goes well the rest of the drive. Kids are feed, in their pj's, and in bed. Can't wait to see how rush hour is here in the morning? Stay tuned... Tried to upload some pics but the Internet here at the hotel is too slow. Sorry. :0(

My New Toy

2010-01-18T11:12:00.005-05:00

Lily got this really cool Fischer Price sitting toy with a mirror and musical instruments. It even has a microphone rattle! She loves it! We can put her in her Bumbo seat in front of it and she will bop and move to the music and push the buttons. Such a blast! Thanks Grandma and Grandpa K this was definitely one of her best gifts this Christmas!

Where Has the Month Gone?

2010-01-17T21:11:00.002-05:00

I can't believe it is already the 17th of January. I feel like the older I get the faster time flies. I thought this month that I would be much more diligent about blogging but as you can see I haven't. There has been a lot going on, such as running kids to and from preschool, therapy, and doctor's appointments. I also have been working 2-3 days per week. Tuesday and Thursday nights and then Saturdays. It is just ok. Nothing at all like teaching of course, but I didn't expect it to be. I got a job at a scrap booking, card making, kind of store. It's called Archiver's. Hoping to keep looking for another job so I don't have to work on the weekends. It's becoming a bit of a drag.

Anyways, enough about that, how is the munchkin doing? Well, Lily is doing well. Had a visit from her Intervention Specialist from "Help Me Grow" and the case manager also tagged along this month. They both were so impressed with how much Liliana has grown and improved in just a year. She is up for an IFSP review in February and so of course I had extra paperwork to fill out. Fun. I am really hoping that things come through with the Toddler program through the county. I thought Lily was 4th on the waiting list but after the visit we had Thursday they told me that they finally received the immunization records they had been waiting for so they could now proceed with enrolling her in the program. It's always something. She also needs one more shot that she will be receiving at her 18 month appointment this Tuesday so we'll see what happens. Wait, wait, wait.

Other than that we are getting very excited! We leave for Disney World in 11 days! Yeah! Gwynny is beside herself! I have so much to do in the next week and a half to get ready but believe me I am very ready to go! We so much need a break from things here. We are planning to get a 5 day ticket plus the condo we are staying at is very kid-friendly and centered around kid activities. Gwynny will be in heaven. It will also be a nice break from the cold weather we've had here. I don't mind the snow but it has been downright cold here lately. Well, just wanted to let everyone know we are alive and doing well. I will try my best to update again this week. I definitely will have to post some pics from Disney. Have a wonderful week! God Bless!

Greetings! It's good to be back! An update.

2010-01-05T14:49:00.003-05:00

Well, it has been a long time since I have actually sat down and posted. It seems like the month of December just flew right by. We were constantly on the go. Though we are back into our usual routine we are still on the go but it isn't the same. Christmas 2009 and New Year's were a crazy and wonderful time for us this past year. We got to see lots of family and friends over the past 2 to 3 weeks. We also did some entertaining here at our house as well. We had lots of fun!

Santa was very generous this year! Gwynny got lots of Disney princess stuff including the new Princess and the Frog dolls and Ariel and Eric in their wedding outfits! She is one happy girl! She also got a Leapster 2 so hopefully she won't bug Bill anymore to play the games on his phone and we are thinking it will be good entertainment for her in the car when we go to Florida soon. She got lots of clothes and many other things too. Lily got a really cute little toy...not sure the name of it from Grandma and Grandpa that has a mirror on it and all kinds of fun musical gadgets to push and make sounds. It plays music too and she loves it! We can put her in the Bumbo seat and put her behind it and she will sit there and clap, cheer, and bebop to the tunes! It is so cute! May have to get that on video! She also got several other toys like a sit to stand toy by V-tech, and a baby laptop! Aunt Annette also got her a "Signing Times" dvd so we can work on continuing to teach her to sign. We haven't been very successful in that department yet even though I consistently try to teach her "eat" and "more". We will keep on trying. Santa also brought me a wonderful new camera actually compliments of Bill's company Christmas present. It is an awesome camera and I will definitely have to learn how to use it better but I love it! It's a Nikon D3000. Very cool.

On the other side of the coin...we did take a lot of time to focus on the true meaning of the season. We meaning Gwynny, Lily, and me participated in the Christmas play at church this year. Gwynny was a proud and adorable little angel and Lily and I were travelers to Bethlehem. It was a fantastic drama written by a very talented individual at our church and it really helped me to focus on what is truly most important about Christmas. Jesus! We also went to a candlelight service on Christmas Eve at our church which was very cool! Everyone lit a candle and we sang Christmas carols and focused on the light in all the darkness in this world... again it is JESUS!

We have so much to be thankful for this past year. Liliana came home from a long hospital stay in February of 2009 and started a new chapter in our lives. Though she may be more behind developmentally than some kids her age, she has really grown over this past year by leaps and bounds. We went from an NG tube to a G-tube to a Mic-key button this past year. She has been eating Stage 2 baby foods by mouth consistently for over 6 months now. She is learning how to drink from a sippie cup and she babbles and interacts with people like never before. She even has her own fan club at church. It is hilarious to see her when Bill picks her up from the nursery. She starts waving "hi" and saying it to everyone that passes by. So funny! She is so close to sitting up by herself, she is just lazy. We will hopefully conquer that one in 2010! She received a clean bill of health from the cardiologist back around Thanksgiving. She also was diagnosed with far-sightedness and now wears glasses, ahem...I mean we are working on her wearing her glasses. LOL! That too will come. Thank you Lord for our little blessing. She continually keeps things in check for me.

Gwyneth has been growing up and becoming quite the BIG girl. She started preschool this past year and she goes 5 mornings a week and seems to really enjoy it. She is learning a lot especially about relationships and how to get along with others. Very important! I know she struggles with the whole Lily getting a lot of attention but we are working on that with her and hoping that as she matures she will overcome some of her jealousy. She also started pre-ballet lessons this year and will have a recital in June. Can't wait to see that one! LOL! She has had a busy year and a half as well.

God knows we have so much to be thankful for and we owe it all to him. He has provided for us this whole year because I had to quit my job. I now have a new job which is only part-time but it does help a little bit financially and it gets me out of the house for a few hours. Thank the Lord! I think our biggest frustration this past year has been the issues we have had with Lily's g-tube and now her mic-key button. Personally I feel the mic-key button is overrated. It is great when it works but when it fails, which happens a lot then it stinks. We had a recent mishap on December 23rd where the button came out some time over night and the hole had started to close. We ended up having to take Lily down to the GI department at the clinic and luckily the nurses were able to put a new button in without Lily having to go to surgery. Whew! Dodged a bullet there. I had visions of us spending Christmas Eve at the Cleveland Clinic again. Unfortunately that button only lasted about a week and had a leak. I put another one in that only lasted about 4 or 5 days! What is up? I put another button in on New Year's Eve so I will keep you posted as to how this one does. Man, talk about frustrating. Kimberly Clark and I are best friends with all the phone calls of complaints and asking them to ship me replacements. Anyways, through it all God has been faithful and he has stood by our sides through thick and thin. He is my rock and my salvation, whom shall I fear? I have nothing to fear in 2010 as long as I cling to that rock and ask him to keep me in the palm of his hand. He loves us and he knows each and every one of us. The bible says he knows every hair on our head. Even if we think things are as bad as they can get God is there in our midst. He will never leave us nor forsake us. I challenge you in 2010 to let go and let God! Give your life to him and let him take control. Thank you again Lord! Happy New Year everyone and make 2010 a GREAT one!

Christmas and New Year's 2009 at OneTrueMedia.com

2010-01-03T22:58:00.001-05:00

Photo and video editing at www.OneTrueMedia.com

A Festive Photo Collage! If you like looking at pictures you'll LOVE this one!

2009-12-17T22:13:00.022-05:00

Well, I can't believe that it is only 7 days until Christmas! Where has the time gone? It seems like it was only Thanksgiving yesterday. In short, we have put up our outside lights, put up the tree, started Christmas shopping, done some baking and making of treats, did some scrapbooking, and started a new job. YES, and started a new job. Part-time at one of my favorite places Archiver's. In between we have attended many Christmas parties and saw Santa at all 3 parties! Boy was that fun! We also have a wonderful little elf that has been visiting our house and he sits up on high places around the house. His mission...to report back to Santa every night about how well Gwynny has been behaving. Each morning we wake up to find him in a different spot! How does he do that? Hmmmm... well let's just say we are all having fun with that one. We also have managed to visit several of our docs at the clinic and Lily successfully passed her swallow study on the 7th! I was shocked to say the least but she is now able to start working on trying to take thin liquids without the ol' Simply Thick! Yeah for Lily! We are so proud! She is really growing up fast! They also increased her night time feed from 320ml. to 380ml. to help with weight gain and growth since she has seemed to stall out a bit. Other than that she is doing fabulous! Waving hello and good-bye and trying to say the words. Clapping and smiling like crazy! It's so sweet! She just melts your heart when you see it! All in all we are having a hectic, crazy, but fun December! Here are some pics of all the socializing we have been doing and some of the photo shoot with the Christmas dresses. Above and below this was our first encounter with Santa. This was a party at the assisted living where Bill's grandmother resides. They always have a Christmas party of some sort each year and these are the pics from this year. Not the same Santa as in the past but Gwynny was in awe of him so much that she was speechless and couldn't tell him what she wanted for Christmas.

Lily is less than thrilled with her first Santa Claus encounter. Classic!

Mmmmm..punch anyone?

Here DaDa have a spoon! Whack!

I just gotta get up and DANCE!

Ok, I love this princess dress so much I had to wear it again to the next party for the Up Side of Downs! This party happened to be in a greenhouse and it was really neat! Lots of food, fun, and crafts for the kids at this party. Gwynny got a few Christmas tattoos while we were there!

Each child that came received a toy. Gwynny and Lily both got Barbie Thumbelina dolls.

Santa encounter #2! Lily is a no-show. Gwynny well...she managed to tell Santa this time that she wanted a Barbie.

Today we went to a party for through our counties "Help Me Grow" program. They had a lovely luncheon for everyone and each child also received a toy. Here Lily is wearing her black and white checkered dress that matches her big sissy! Grandma and Grandpa came with us too!

Gwynny waiting in line to see Santa and get her toy!

Santa encounter #3...ABSOLUTE HYSTERIA! Please someone get me away from this BIG, FAT, RED-SUITED MAN! Gwynny is just happy to get her treat bag! Grandpa..well you be the judge.

Everybody say "CHEESE"!!!

All that Santa hype has completely worn me out! I'm out! Thanks for the toy though BIG, FAT, RED-SUITED MAN!

In mid November we took the girls to have their Christmas pictures done. Here are some of the best of the bunch!

Lily in the Box!

We also shared the photo shoot with Gwynny and Lily's two cousins Grace and Elena. This is one of the pics of all 4 of the girls.

Hope everyone is enjoying the holidays and don't get too stressed out! I'm off to get some sleep.

We Are Alive but very, very busy!

2009-12-16T23:26:00.003-05:00

Hey everyone! No we haven't fallen off the planet, but we have been extremely busy. When I get an actual minute to sit down and upload some pics from my camera I will do a little photo post of everything we have been doing for the past 2 weeks. I just wanted to let everyone know that I haven't abandoned blogging I just can't seem to find a few minutes when I am not exhausted to do a decent post. Talk to everyone soon...I hope. Good Night!

Oh Where, Oh Where, Has My Bunny Rabbit Gone?

2009-12-04T13:52:00.002-05:00

Whew! It has been one busy week. I have been so tired at night that I haven't posted since Monday. I have to tell you about a very CRAZY thing that happened yesterday! Many of you read my post about Liliana's Bunny Rabbit and how much she loves that thing. I think I even said in the post that I don't know what I would do if anything happened to it. Well, my worst nightmare almost came true yesterday.

We were having my in-laws over last night for dinner since my mother-in-law's birthday was on Wednesday. I dropped Gwynny off at preschool and stopped with Lily at our local grocery store Giant Eagle. Lily has been a bit more cranky than usual probably because she has a nasty runny nose and is getting more teeth! Her two front teeth to be exact. Anyways, she has been a bear lately. So I brought her bunny with us to help comfort her. She had the bunny in her arms as we entered the store. I went to the bakery and picked up a cake and then got a few other items to complete our meal. I was somewhat distracted in the store because Lily's nose started running like a faucet and of course whenever that seems to happen I never have a tissue. So I went to the front of the store and asked a woman who was cleaning with a roll of paper towels if I could have one. She gladly gave me one. I wiped Lily's nose and not even thinking began to unload my cart and check-out.

We came home. Lily was fed and went to therapy. Mind you I still don't realize that anything is wrong. After therapy we go pick up Gwynny and head home. We have lunch and play for awhile. Then it is almost 2 pm and time to go in for a nap. Where is Lily's bunny? I begin searching everywhere. Upstairs, downstairs, out in the van, but no bunny could be found. I am beginning to panic at this point. So I decide to call around to the places that we went in the morning. Both therapy and Giant Eagle said they didn't see anything. I was SICK ! So what did I do but bundled the kids up loaded up the car and headed over to Giant Eagle because I just had to see for myself. I really felt that if I lost the bunny it had to be at Giant Eagle because that is where Lily took the bunny in.

Well, I scope out the parking lot with no luck. I even asked a guy that was gathering carts if he had seen anything and he said no. So into the store we went in the cart that looks like a car in the front, yet drives like a tank. Gwynny loves that thing! Anyways, we searched the store, tracing the steps I had taken earlier. Then what to my wondering eyes should appear but a pink, long-eared bunny rabbit sitting in a Jello pudding display box down the baking aisle! What it's Lily's bunny! Gwynny cheered, "Yeah!" We probably looked hilarious cheering in the store, but man was I happy! I texted Bill when it happened and he was really up too. He began looking on E-bay to see if he could find another one. Well, just our luck they don't make that one anymore. Bill did find one comparable to the one she has so he went ahead and ordered it just so we can try to get her used to it so we have a back-up.

In the end, I am glad we found Mr. Bunny and I sure learned a lesson yesterday. Never bring Mr. Bunny Rabbit into a store again because Lily will inevitably pitch him over the side of the cart. Also always have a back-up.

Thankful A-Z: Zealous

2009-11-30T22:54:00.002-05:00

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

2009-11-29T21:58:00.002-05:00

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!

2009-11-27T20:58:00.002-05:00

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!

2009-11-26T21:58:00.005-05:00

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

2009-11-25T21:31:00.002-05:00

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

2009-11-24T22:18:00.002-05:00

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

2009-11-23T22:31:00.003-05:00

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

2009-11-22T20:54:00.002-05:00

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!

2009-11-21T21:55:00.004-05:00

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

2009-11-20T22:05:00.005-05:00

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

2009-11-19T22:20:00.003-05:00

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!

2009-11-18T08:45:00.003-05:00

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?

2009-11-13T15:31:00.003-05:00

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!

2009-11-11T21:10:00.003-05:00

Fun Times with Friends

2009-11-09T22:02:00.010-05:00

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

2009-11-04T20:23:00.008-05:00

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.

Halloween 2009

2009-10-31T20:48:00.012-04:00

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

2009-10-30T22:23:00.003-04:00

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!

2009-10-29T20:03:00.012-04:00

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

2009-10-28T13:26:00.005-04:00

Lily just loves our dog Cocoa!

Show me the love!

Awwwwww!

"It's a Wonderful Life"

2009-10-27T22:47:00.002-04:00

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

2009-10-26T21:56:00.009-04:00

Gwynny then...

Gwynny now.

Liliana then...

Liliana now.

My how my girls have changed!

Brown's, Babes, and Bakery! Yum!

2009-10-25T20:25:00.011-04:00

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!

2009-10-24T20:37:00.008-04:00

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

2009-10-23T22:47:00.002-04:00

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!

2009-10-22T13:03:00.008-04:00

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 :(

2009-10-21T13:40:00.003-04:00

Someone hasn't been feeling well! :(

2009-10-20T23:20:00.002-04:00

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

2009-10-19T22:04:00.002-04:00

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!

2009-10-18T21:37:00.002-04:00

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

2009-10-17T21:00:00.004-04:00

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!

2009-10-16T22:33:00.002-04:00

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

2009-10-15T22:58:00.009-04:00

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!

31 for 21 Day #14: Occupational Therapy and It's Benefits

2009-10-14T15:06:00.010-04:00

Liliana has been working with an Occupational Therapist since she has been home from the hospital in March. We LOVE our OT! She is so good with Lily and she has given me so many great exercises, ideas, and suggestions to help get Lily eating better. Many people are confused about what an OT really does? Well American Occupational Therapy Association Inc. says:

Although October is Down Syndrome Awareness Month, occupational therapy practitioners work with this population every day of the year. One in every 733 babies born in the U.S., or 400,000 Americans, has Down syndrome, a genetic condition that alters the course of development and can cause cognitive delays (National Down Syndrome Society, 2008).

Occupational therapy practitioners work with persons with Down syndrome to help them master skills for independence through self-care like feeding and dressing, fine and gross motor skills, school performance, and play and leisure activities.

Research, education, and advocacy have led to advances in therapy, which have had a huge effect on the opportunities available to individuals with Down syndrome. The life expectancy has increased dramatically in recent decades—from 25 years old in 1983 to 60 years old today—and people with Down syndrome are graduating high school, going to college, participating in social and recreational activities in their communities, making up a vibrant part of the workforce, living independently, and advocating for their rights.

Occupational therapy practitioners guide individuals with Down syndrome and their families to help them reach their potential throughout the life span. Occupational therapy intervention should begin as soon as a diagnosis of Down syndrome is established, and should continue throughout the individual’s life.

During infancy, occupational therapy practitioners can help mothers whose children are having feeding problems because of weak muscles in their cheeks, tongue, and lips. During early childhood, therapy can focus on mastering motor skills for independence, focusing on low muscle tone, loose ligaments at the joints, and visual and auditory deficits (Bruni, 2001).

“A therapist can help parents place expectations that are appropriate to the ability of the child,” says Asha Asher, MA, OTR/L, chairperson of AOTA’s Developmental Disabilities Special Interest Section (DDSIS). “[An occupational therapy practitioner] can suggest positioning or adaptations that might help the child become more independent.”

School-aged children with Down syndrome benefit from an occupational therapy practitioner’s ability to address self-care skills like zipping a jacket, and fine and gross motor skills like cutting with scissors or completing multistep classroom routines to facilitate participation in school activities.

Occupational therapy practitioners can also assist in the classroom by enhancing the child’s communication skills through printing, handwriting, and keyboarding. Other issues addressed are adaptations to the classroom—such as the position of desks and chairs—for optimal performance, based on the child’s physical abilities (Bruni, 2001).

Adults with Down syndrome benefit from occupational therapy in finding and retaining productive work, learning independent living skills, and participating in active recreation for health maintenance.

“People with Down syndrome, like everyone else, are people first, each with their own unique gifts to contribute,” says National Down Syndrome Society President John Colman. “Down syndrome awareness month provides a forum for dispelling stereotypes, educating the general public about their many abilities, and raising awareness for people with Down syndrome.”

Occupational therapy can play an important role in assisting individuals with Down syndrome from diagnosis to adulthood. “Occupational therapy helps individuals with Down syndrome by creating programs to develop and utilize skills across the lifespan,” says Asher. “[This enables] them to live life to its fullest.”

Stephanie Yamkovenko is AOTA’s staff writer.

Reference

Bruni, M. (2001). Occupational therapy and the child with Down syndrome. Retrieved October 3, 2008, from http://www.ds-health.com/occther.htm

National Down Syndrome Society. (2008). October is Down Syndrome Awareness Month. Retrieved October 3, 2008, from http://www.ndss.org/images/stories/NDSSresources/pdfs/octoberdownsyndrome.pdf

I thought this article explained things in a very simple and understandable manner. Liliana has definitely reaped the benefits of OT. Above I took a picture of her with a special tape on her upper and lower lips. Our OT uses this special tape to help Lily become more aware of her lips, help keep her tongue in her mouth, help make her mouth muscles stronger, and help her to pucker her lips or keep her mouth closed. Believe me that tape is some powerful stuff! When our OT first started using it with Lily she had me put some on so I could get the idea of what it would feel like for Lily. It doesn't hurt her or anything she just gets all the benefits from it. So for me and my house we will take occupational therapy.

31 for 21: Day #13: We're More Alike Than Different

2009-10-13T12:41:00.002-04:00

Today as I was surfing the web I noticed that a lot of people had posted a short video from the National Down Syndrome Congress about their new campaign, "More Alike Than Different." I love that video but I decided to check out the NDSC website to see if I could find anything else interesting to post. I found a really cool video that absolutely will inspire you. You need to have about 15 minutes to sit and watch it but it is well worth the time. The 4 individuals they highlight on the video with Ds prove to me ONCE AGAIN, how much my Liliana is capable of if I set my expectations high and never give up on her. Click on the link to go to the website and then click on view the video. There is a lot of other good information on that site as well. Check it out.

http://www.ndsccenter.org/morealike/flash/

Things You May or May Not Know About Rees's Pieces

2009-10-12T20:48:00.003-04:00

So today is the 12th day of the 31 for 21 challenge and I thought instead of blogging about 21 things I would do 12 things you may or may not know about my family since it is the 12th of October. It is also 21 backwards, aaaannndddd I don't know if I could come up with 21 things you may or may not know about my family. So here it goes...

1. Our last name is spelled R-E-E-S, no E at the end. It was originally Rhys, but it got changed when Bill's Great-grandfather came over from Whales.

2. We have 2 pets...a dog named Cocoa and a cat named Laney.

3. We live 1 mile from Lake Erie and we love it!

4. Bill and I both work-out regularly. I try to get to the gym 3 times a week at least and then I walk or do something else like ride the recumbent bike at home 1 other day. Bill on the other hand, gets up at the crack of dawn every day during the week and either goes to the gym or runs before he even starts his work day. He amazes me with his dedication...seriously.

5. We frequently give tickle-hugs and tickle kisses at our house because our little princess Gwynny LOVES them! Lily too!

6. I can actually sing! I used to sing in a band and in church and for weddings. I have gotten away from it over the years but I was so blessed to be able to make a professional recording of myself singing the song, "Thank You" for my dad's funeral recently.

7. My wonderful hubby Bill has been an avid cyclist for almost 2o years. He LOVES to ride his bike and has two of them, a road bike and a mountain bike. He actually rode his bike to work most of this summer when he had the opportunity since he works only 2 miles away. He also used to race about 6 years ago when we were first dating and married. He hopes to eventually get back into racing some day after the kiddos are a little older. His hero is Lance Armstrong!

8. We are a Christian family and we go to church every Sunday that we are able. I help in our Children's church ministry and Bill helps with their IT needs. We love the Lord and we have met some really great people through our church that have stood by us through everything we have been through in the past 16 months with our little angel Lily.

9. We love CHOCOLATE! I mean it's like we all crave it! If there is chocolate cake to be had Bill will take that! If it's chocolate ice cream Gwynny is there! Me...well just give me anything chocolate and I am happy! Liliana is just bound to like chocolate! She has NO choice! It's in the genes! Just wait till she starts eating! Look out world! Hey maybe that's what I should be putting in her food to make her eat more? LOL!

10. And now let me reveal for you the BIGGEST geek I know Star Wars Geek that is...Drumroll please...Bill! Yes, Bill is very much into Star Wars. When I first met him his office was also his Star Wars room where he kept his most prized possessions. Now that we have been together for over 6 years and we have kids he has decided to downsize his collection a lot. He sold the majority of it on E-Bay and just kept the original figures from the very beginning. I know what some of you are thinking...why didn't you run when you had the chance, really he isn't obsessed like some guys. He's really a great guy! Swear. :)

11. I love scrapbooking! I find that I don't have as much time as I would like to spend on it, but when I do I really enjoy it. It's a great way to unwind and I usually go to crops with my friends so we can catch up. It's a great Girl's Night out. I just wish I was more caught up on my kid's albums.

12. Last, but certainly not least, we have a child with Down syndrome. She is the most beautiful, amazing, funny, cute little girl and she is all ours! We love her so much and we wouldn't trade her for anything!

THE END.

Fall Hayride

2009-10-11T21:40:00.006-04:00

Last Sunday, October 4th we met Patti and Marissa from To Love Endlessly for a hayride out at Carlisle Reservation. Such a neat little park out in Lorain county. I haven't posted until now because I was waiting for Bill to edit the pictures so I could use some along with this post. We had a great time on the ride and afterwards, while taking a coffee break and letting Gwyneth run around and play at Mc'Donalds. It was great talking to another mother of a child with Ds. We just have so much in common and the conversation just continued to flow. Patti and I have really connected because both our baby girls were at the Cleveland Clinic Children's Hospital for open heart surgery to repair their congenital heart defects. Lily's heart defect was a complete AV canal defect, not sure what Marissa's was. Anyways, Marissa's hospital stay was the average 4-7 days that it is supposed to be and she was able to go home. As most of you know, Liliana's stay was much longer. Lily had not only holes in the top and bottom chambers of her heart but she also had an extremely abnormal mitral valve not to mention aspirational pneumonia and several infections that she contracted while in the hospital. I won't go into all the details of the heart surgery because this is a post about a hayride. LOL! Well, it was fantastic to see both babies together, to see how well they both are doing, and to share some fun with another family that completely understands what we have gone through. The pictures tell it all!

My Kiddos Names

2009-10-10T21:41:00.002-04:00

Well, Lacey at Jaxson's Fight tagged me and she asked me to participate in doing a post about my kid's names. So, of course I said I would. So I will start out with my first child Gwyneth.

Gwyneth Anne Rees- Well, since Gwyneth was our first child we were so excited and I bought a Baby Names book and I was constantly looking online for names. I would even write names down on paper to see how they sounded and what went well together. After a lot of going back and forth, back and forth about what he liked and I didn't or what I liked and he didn't, he came up with the name Gwyneth. I distinctly remember we out shopping at Best Buy and out of the blue he says to me, "How 'bout the name Gwyneth?" I thought about it a moment and then I thought hmmmm...I like that name. So Gwyneth it was. Her middle name is Anne. She is named Anne after Bill's grandmother thus the spelling and all plus we couldn't come up with anything else that we thought went well with her name. My mom's name is Helen and Bill' mom's name is Theresa which neither of us liked for a middle name with Gwyneth so we went with Anne.

Liliana Elizabeth Rees- I completely came up with Liliana's name. We had been throwing around a bunch of girls names and I really like the name Kassidy and then call her Kassie for short. Well, Bill was ok with that name but I could tell he wasn't crazy about it. One day I was on the phone with my Aunt Libby and she was talking about her neighbor's daughter named Lily. I got off the phone with her and I couldn't get that name out of my head. Lily, Lily, Lily! So I told Bill and I told him that I really liked that name. He goes, " I was just thinking about that name recently myself, but I wish it was the shortened name for something else." I then piped up and said, "How 'bout Liliana?" He loved it! I get a lot of compliments on Liliana because many people tell me they haven't heard it before. Believe it or not I had several students over the years with the name Liliana and I always liked that name. Her middle name is Elizabeth which I also liked. It just so happens that I have two aunts with the name Elizabeth. So she has a middle name the same as two of her great aunts. I know it is a long name and I will probably regret that we gave it to her once she starts writing but I absolutely love her name and I wouldn't change it for anything.

So there you have it. How my kiddos got their names. So now I have to tag more people to post how your kids got their names. Below is my list of who I am tagging. Have a great weekend!

1. Joyce from Class of 2008
2. Cathy: A Walk in Lily's Garden
3. Heidi: Living in the Moment
4. Patti: To Love Endlessly
5. Wendy P: Zip-Perdue-De-Dah
6. The Naretto Family
7. Kelli: Three Girls and Tim
8. Jennie: A Little Something Extra For Us

Check out this wonderful silent auction!

2009-10-09T15:36:00.004-04:00

Follow the link over to Marissa's Marchers to participate in their wonderful silent auction. The proceeds will go to help cover the costs of a positional helmet for Marissa. Check it out!

Day #8 (31 for 21): A Trip to Patterson's Farm!

2009-10-08T21:52:00.012-04:00

This is a post I should have written a long time ago but with everything going on with my dad I kind of let it slip to the way side. Back, seems like such a long time ago, on September 13th we went to Patterson's Fruit Farm for their Fall Festival. This is also an annual event for the Up Side of Down's here in Northeast Ohio so we decided to go. My mother-in-law, Gwynny, Lily and I loaded up the van and drove out to the farm to meet my brother, my sister-in-law, and two nieces. We had a great time! All kinds of fun things for the kids to do. We even got Lily down in the hay and involved in the fun! That is one thing I have to say that Bill and I have always felt when it comes to Liliana, that we will never exclude her from doing things that we would do with Gwyneth. We take Liliana everywhere. People think we're crazy but we even took her camping this summer with no electricity and with a feeding pump, pole and all. Nothing stops us and hopefully it never will because I want my baby to experience all that life has to offer. She is worth it and we love her SOOOOOO much! Here are the pictures from the trip. Enjoy.

Wordless Wednesday

2009-10-07T23:26:00.003-04:00

Early Intervention and it's benefits

2009-10-06T23:01:00.002-04:00

I was skeptical at first. I didn't have a lot of faith in Early Intervention but as time has gone on I realize that these people that we see almost every week have played a huge part in Liliana's success. One of the best decisions I have made as a parent of a child with Ds was to get her involved in as much therapy as I possibly could. Our Speech therapist, Occupational therapist, and Physical therapist just marvel at how much progress Liliana has made being that she went through so much in her first year of life. I also am one proud mama, because I really can see Liliana making small strides but in the scheme of things it's HUGE! Below I have included a link to an article from the National Down Syndrome Society website. This article just talks about the importance of early intervention and gives some valuable resources to find help.

http://www.ndss.org/index.php?option=com_content&view=article&id=221:early-in

An Unusual Encounter

2009-10-05T20:57:00.002-04:00

Lily and I went to the clinic today for a GI check-up to see if our GI doc could give us some insight into why her mic-key buttons keep coming out. Well, that appointment went pretty much as I thought it would. Dr. M didn't have a clue as to why the buttons are coming out. She speculated that maybe Lily swallowed something and we didn't know it....hmmmmhmmm...Ahhyeah right? She has just started eating Stage 2 baby food and cereal regularly. I highly doubt she swallowed something. Anyways, she couldn't explain it and basically brushed it off to a defect on the manufacturer's part. Pretty much what everyone has been saying. As I said in my recent posts thank God that Kimberly Clark is so willing to replace those buggers without charging.

Anyways, while we were at the clinic I went ahead and ordered ahead her Prilosec medicine because it is a compounded medicine and has to be made in advance and kept refrigerated. We usually have it shipped to our house but this time I decided to pick it up. While waiting outside the elevators to the M building, I was on my cell talking to Bill letting him know how our appointment with GI had went. When all of the sudden I look up and guess who is standing there next to me? The surgeon that did all of Liliana's heart surgeries. I was startled by his presence because this guy is not a very visible man. Believe me when I say that because the entire time we spent 3 1/2 months there we hardly ever saw the man and never in passing. Well, I immediately said, "Dr. Mavroudis, hello!" He greeted me with a friendly handshake and I followed with, "Look how good Lily is doing! He said, "Refresh, my memory. What did I do for her?" I said, "Complete AV Canal Defect with an extremely abnormal mitral valve. She had 3 surgeries in one hospital stay. He says, "Oh, yeah that's right she gave me quite a fit! God bless her! So glad she is doing so well!" I said, "Yes, yes she is!" The elevator stopped on the fourth floor at this point going right past the second floor that we were supposed to get off on due to my complete negligence. He said, "Getting off here?" I said, "No, no thank you. " Then we said good-bye and he left. It was so strange. I guess I was a bit taken back when he did not remember Lily and all the time that she had spent in the hospital. I know he is a busy man and has done literally 1,000's of surgeries but come on! You forgot about Liliana! I was totally brought back to November 4, 2008 the moment that I saw him. The memories and the fears all came back, but after he left there it was just me and my Lily. My perfect little angel. My MIRACLE baby and yes he did play a BIG part in why she is here today and I will never forget that. He might have forgotten but I will never forget. It is etched in my memory forever because if it wasn't for him and the work of our loving God she would not have had another chance. I am so grateful and I am so thankful! I am blessed!

Will You Be a Johnny Today?

2009-10-04T22:11:00.002-04:00

When was the last time you did something for someone and did it from the heart? When was the last time you did something just because you wanted to show you cared and make a difference in someone else's life? People are always saying that individuals with Down syndrome have so much love to give, so much love to share, and they give it so freely and so openly. They are not afraid to let others know how much they care. I think we could learn a lot about love and caring from those with Down syndrome. If we all tried to make a difference in someone else's life what a wonderful world this would be! Many of you may already have seen this video clip, but I ask you today to watch it again and just like the video says, "Will you be a Johnny today?" Don't answer that question until you are done watching the video. Follow the link.

http://www.stservicemovie.com/

Matthew 25:31-46 (New International Version)

Whatsoever you do to the least of my brothers;
That you do unto me.

When I was hungry, you gave me to eat;
When I was thirsty, you gave me to drink.
Now enter into the home of My Father.

Whatsoever you do to the least of my brothers;
That you do unto me.

When I was homeless, you opened your door;
When I was naked, you gave me your coat.
Now enter into the home of My Father.

Whatsoever you do to the least of my brothers;
That you do unto me.

When I was weary, you helped me find rest.
When I was anxious, you calmed all my fears.
Now enter into the home of My Father.

Whatsoever you do to the least of my brothers
That you do unto me.

Set Your Goals High! The Futures Looking Bright!

2009-10-03T21:45:00.005-04:00

As I have become more and more familiar with the world of Ds and all that it has to offer I have come to realize that there is nothing that a person with Ds can't do if they really set there mind to it. I had worries and doubts about Liliana's future but now after hearing other people's testimonies and stories I am filled with great anticipation for what lies ahead. It's been an amazing journey so far but there is so much more to come. Many people inspire me right here in the blogosphere daily and I thank all of you that share with me and the millions of other people that read your blogs regularly. It is comforting to know that we are not alone in this journey and that those that have gone before us are paving the way to a brighter future for all. I am including a link to a website about an amazing young gentleman with Ds. He is 27 years old and plays 6 different instruments! He is awesome! Surf around on his website and in particular click on the link to view video clips it is such a delight to watch! Have a great weekend and don't forget to always set your goals high when it comes to our Ds kids because the future is looking very, very bright!

Sujeet Dasai: Website
http://www.sujeet.com/

Day #2: 31 for 21

2009-10-02T15:30:00.007-04:00

Today I was thinking about how I felt when I first found out that Liliana had Ds. I felt angry, scared, and very confused. I reached out to some of the local support groups in my community for support. I remember talking to Laura from The Up Side of Downs here in Cleveland and how supportive she was for me. She helped give me a sense that all would be ok. That it wasn't going to be easy but that it would be the most incredible journey I would ever take. She was right! I can't imagine life without my Liliana. She is the most amazing child to me! It reminds me once again of the memory verse for Kidz Zone at church this Sunday. Psalm 139:14 - "How you made me is amazing and wonderful!" That completely expresses how I feel about Lily and how God created her. If you click on the link above it will take you to their website which is put together very well. They have a lot of good things to offer on there. Below is a list of "Proper Language" to use when referring to children or adults with Down syndrome. Much of this information I did not know until I had Liliana. I hope that this little bit of information will help educate those people out there that may not be aware of what is acceptable and what isn't.

Also the article at the bottom entitled, "If People With Down syndrome Ruled the World" is very interesting and thought provoking. Check it out!

Taken from http://www.theupsideofdowns.org/

Proper Language Guide

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The correct name of this diagnosis is Down syndrome. There is no apostrophe (Down). The "s" in syndrome is not capitalized (syndrome).

An individual with Down syndrome is an individual first and foremost. The emphasis should be on the person, not the disability. A person with Down syndrome has many other qualities and attributes that can be used to describe them.

Encourage people to use people-first language. "The person with Down syndrome", not "the Down syndrome person." A person with Down syndrome is not "a Downs".

Words can create barriers. Recognize that a child is "a child with Down syndrome," or that an adult is "an adult with Down syndrome." Children with Down syndrome grow into adults with Down syndrome; they do not remain eternal children. Adults enjoy activities and companionship with other adults.

It is important to use the correct terminology. A person "has" Down syndrome, rather than "suffers from," "is a victim of," "is diseased with" or "afflicted by."

Each person has his/her own unique strengths, capabilities and talents. Try not to use the clichés that are so common when describing an individual with Down syndrome. To assume all people have the same characteristics or abilities is demeaning. Also, it reinforces the stereotype that "all people with Down syndrome are the same."

Here are some basic guidelines for using People First Language:

Put people first, not their disability
- A "person with a disability", not a "disabled person"
- A "child with autism", not an "autistic child"
Use emotionally neutral expressions
- A person "with" cerebral palsy, not "afflicted with" cerebral palsy
- An individual who had a stroke, not a stroke "victim"
- A person "has" Down syndrome, not "suffers from" Down syndrome
Emphasize abilities, not limitations
- A person "uses a wheelchair", not "wheelchair-bound"
- A child "receives special education services", not "in special ed"
Adopt preferred language
- A "cognitive disability" or "intellectual disability" is preferred over "mentally retarded"
- "Typically developing" or "typical" is preferred over "normal"
- "Accessible" parking space or hotel room is preferred over "handicapped"

Guidelines from the National Down Syndrome Congress

Article - If People with Down Syndrome Ruled the World

National Down Syndrome Awareness Month!

2009-10-01T19:46:00.006-04:00

Hey everyone! In case you haven't heard it is National Down Syndrome Awareness month and the challenge at http://unringingthebell.typepad.com/ is 31 posts about Trisomy 21! I have never done this before so I think it will be fun! I have been out of practice with blogging on a regular basis with all the drama in my life this summer. It will be a good way to get back in the routine and share stories, information, and vent about Ds. So, for the first day I thought I would post a link to a video about mic-key buttons. I know a lot of Ds kids don't have one but there are a lot of kids that do. Since it has become my source of stress lately, I thought it might be worthwhile to share with everyone just exactly what I have to go through every time one of these little buggers comes out. Oh and not to mention, what a stressful morning today was...mic-key button number 4 failed and came out. So I had to put in mic-key button number 5 and I put in another call to good ol' Kimberly Clark to ask for another replacement, which they will be sending by the way. I also called the GI department at the clinic and moved Lily's appointment up to Monday instead of October 12th just to make sure something isn't going on with her that may be causing the buttons to fail. Click on the link below to view a short video about how to change a mic-key button (this video is from you tube and I thought it was done very tastefully and is very informative) and Happy Fall, Happy October, and 3 cheers for Down syndrome awareness!

http://www.youtube.com/watch?v=Mn4ePSBiCTk&feature=related

Tooth Tales and Edible Extras!

2009-09-30T15:50:00.002-04:00

I'm so excited! Today at Occupational Therapy our OT discovered that Lily FINALLY has a tooth coming in! Yep! It's in the back on the right side of her mouth! I ran my finger along the gums in her mouth and I could feel a sharp little point sticking out. So cool! So I am sure very soon that little tooth will poke it's head through. It does seem rather strange that it is a molar instead of one of her front teeth, but we'll take it. I guess there is no rhyme or reason to how Ds kids teeth come in? Correct people if I am wrong. I am just so excited too at the possibilities this will give her for eating. She is doing really well with eating by mouth. She consumes about 1/4 cup to 1/2 cup of Stage 2 baby food and cereal 3 times a day (breakfast, lunch, dinner). She is actually opening her mouth to accept the food more readily now. It is so exciting for me to watch her finally catch on to this. It just took some perseverance and patience on my part and consistency too before she started to show signs of improvement. Well, now we can move on to chunky foods eventually and also the sippy cup! Yeah Lily!

Mic-key Button Mania

2009-09-29T11:34:00.002-04:00

So, now that life has gone back to routine I will attempt to be more diligent with posting more frequently. On August 11th Lily got her first mic-key button placed. I was simply ecstatic! No more tube hanging out of her belly! WooHoo! Well, that was just the beginning of the mahem to come. Approximately 2 weeks later she pulled it right out of her belly. Frantic, I called the GI department at the Cleveland Clinic and asked them what I should do. Well, they told me not to go to the nearest ER because they do not know what to do when a child comes in with a mic-key button. GREAT! So what do I do! Long story short, they were able to accommodate us so we took Lily right in the GI department that day. They showed me how to put in a new button and all the other care that goes with it. Piece of cake, right? So I thought. Almost exactly a week to 9 days later we are out to dinner at Bob Evan's with Grandma and Grandpa and Lily is inconsolable! What gives? We are feeding her while all this is going on and playing pass the baby. Well, it wasn't working. Next thing you know Bill is holding the feeding tube, adapter, and mic-key button in this hand. You've got to be kidding me! Nope it had happened again. So we packed everything up and headed home for my first attempt at putting in a replacement. Thank goodness my in-laws brought us our food home later and they kept Gwynny with them which also made things easier. It was a success! I got the button in on the first attempt! Yeah! It doesn't end there. Exactly one week later we are having dinner at my brother's house trying to figure out which flowers and plants we would like to take home from my dad's funeral. While visiting Lily's button came out again. We didn't have a back-up with us and we were about an hour away from home so we had to lube up the bad one put it back in and tape it to her belly so that the opening wouldn't start to close up before we got home. Oh my gosh! What is going on with these buttons? Anyone that has dealt with buttons before probably has been in a similar situation. It is sooooo frustrating! I finally had had enough so this Monday I called both our dietician and I called the manufacturer Kimberly Clark to complain. The dietician was no help and basically told me to call the manufacturer as I had already planned to do so. After giving them my sob story over the phone the woman at Kimberly Clark was very sympathetic. In fact, she told me it wasn't my fault. WOW! Someone is feeling my pain. She told me they would be overnighting me 3 mic-key buttons free of charge. WoooHoooo! There is a happy ending to this story, well yes and no. Yes, because we got the replacements but there is still that chance that the button that is in her now will come out again in a week or less. Who knows? Supposedly each button is supposed to last about 2 to 3 months, not 1 week. It's insane I say. Crazy. Insurance only pays for 4 buttons a year so I am glad I have back-up. Well, cross your fingers and say a prayer that it was just faulty balloons in those buttons because I really do not want to have to keep going through this every week. Gotta run, but I will keep you posted.

"Saying Goodbye to my dad!"

2009-09-28T16:03:00.002-04:00

On Friday, September 18, 2009 my dad slipped away into the loving arms of Jesus. It by far was one of the hardest days of my life. My brother and I were there with him when he passed. He had been in and out of the hospital for over 6 weeks and his pneumonia had turned into a fungus. He just wasn't able to fight it anymore. Hospice came in a few days prior and was making him as comfortable as possible. I still think that struggling to breath because your body is filling up with water is not a comfortable thing no matter how many drugs they give you. The last few days of his life it was so difficult watching him prepare for his journey home. At times it was as if he was trying to work out some things in his head and was unable to express those things to us. I know that he is with Jesus. We made sure that he was ready. My uncle prayed the sinner's prayer with him several weeks prior so he would know without a shadow of a doubt that when he died he would be in heaven with Jesus and my Grandma and Grandpa Porter. I'm sure it was a wonderful reunion when he met them at the gates of heaven, those pearl gates that shine and glimmer more radiant than we could ever imagine. No more pain, no more suffering, no more Parkinson's Disease! Thank you Lord! Though he will definitely be missed I know that he is in a much better place. Till we meet again Dad...I love you and I thank you for giving me the life that you did. You were a very special man in so many ways. You're loving, caring ways...always giving and never expecting anything in return. These things will not be forgotten. This is not the end. This is not good-bye. This is only the beginning of a new life together someday. Until then...I LOVE YOU!!! See you up there!

The Beautiful Faces of Children with Down syndrome

2009-09-17T23:03:00.005-04:00

http://www.tangle.com/view_video?viewkey=97ded4264584c748d6ab

Follow this link to see an amazing video about how beautiful and special Ds children are. This video was originally sent to me via FB from my cousin. It touched my heart so much that I wanted to share it with everyone. Posting a link was the only way I was able to share it with you. Hope you enjoy it as much as I did, especially the lyrics to the song.

Labor Day Weekend 2009

2009-09-07T22:28:00.008-04:00

Well, another Labor Day weekend is quickly coming to a close. I am sitting here relaxing for a few minutes while everyone else in my house is already asleep. I love staying up late now just for some "me" time. We had a very busy fun-filled weekend. We also had some not so good news too.

Friday I drove out to Geneva to see my dad in the hospital. He was taken back there on Monday of last week from the nursing home. He was receiving physical therapy there. It turns out that the pneumonia was back, he also had sepsis, and his kidney's were not functioning right. Things were not looking good at all. The doctor's only gave him a 40% chance of recovering this time. Well, praise the Lord by Thursday he was starting to come back out of it. The doctor's were amazed! They said he was sounding better, his kidneys were working better, and that they were going to move him out of the ICU to a regular room. His mind was still very disoriented and he was very much out of sorts. He kept trying to get out of bed and when I was there he was pulling on the sheets and was just very restless. Well, I stayed for awhile and prayed with him and told him how much I love him. It is just so hard to see my dad this way. I wish he didn't have to suffer. It's hard enough for him having Parkinson's Disease. As a result of the Parkinson's through all of this they had to put a peg tube in for him to eat because his gag reflex is totally gone. It is just too risky to continue to allow him to eat by mouth. He could easily aspirate again. Well, just when we thought things were getting better my brother calls me today and tells me that my dad is doing worse again and that he would have to go back into the ICU. I am floored! Lord, why are you allowing this to happen? This has been a complete roller coaster ride!

Saturday we putzed around the house and then took the kids to the pool for a few hours. This was the last weekend our pool would be open so we wanted to take advantage of it. We really got our monies worth from our passes this year. I won't even hesitate to renew our membership next year. Saturday evening it was off to Grandma and Grandpa's house for a cook-out. We had BBQ chicken, corn-on-the cob and lots of veggies. I love eating over there because my mother-in-law always makes a lot of veggies which is great for the diet.

Sunday we got up early, got ready, picked up Grandma and Grandpa and headed down to Columbus to go to the zoo. It was awesome! They have a fabulous zoo! One of the best in the country I'm told. We arrived around 12:30pm, ate a picnic lunch, and then headed out to see the animals. Very neat stuff! We didn't even have enough hours in the day to see everything. We left around 6pm and made our way over to an Applebee's for dinner! Got the BBQ ribs! Yummy! We also got the spinach and artichoke dip which is so delicious! It was after 8pm before we got in the van to head home. Two exhausted kidlings fell asleep in the back. One watching "Sleeping Beauty" and one snuggled up with her Lovey in her car seat. We got home late about 10:30pm or so but we had a great time. I would definitely love to go back there again.

Labor Day started out slow and laid-back. We decided to go to the pool one last time because today was the last day. It was a bit chilly because it was overcast outside. The lack of sun also made the water much colder as well. I opted not to put Lily in today because she wasn't feeling well this past week and was sneezing with a runny nose in the morning. Gwynny had a blast as usual. She even convinced Daddy to play with her Bath Beauties dolls in the pool! LOL! We headed home and prepared for a cookout here at our house with our good friends the Courtney's. It's always good times when we get together! We had some burgers, corn-on-the-cob, and some of my special potatoes on the grill. The kids played and I gave their two boys haircuts. Yes, I used to be a hair stylist back in the day so I somewhat know what I am doing. After having homemade ice cream and some coffee we called it a night and now I am exhausted. Well I posted pictures of the zoo. Other than getting the bad news about my dad it was a wonderful weekend! I'm so thankful for my husband, and my two beautiful daughters. I love spending time with them and making memories that will last a lifetime.

Wordless Wednesday: Gwynny's First Day at Preschool

2009-09-02T20:50:00.003-04:00

First Day of Preschool

2009-09-02T10:39:00.003-04:00

Yesterday was Gwynny's first day of preschool and she had so much fun! She didn't want to leave. What touched my heart the most was the little baggie with Hershey's hugs and kisses along with a poem that she brought home. Her teacher said it was for Bill and I. Gwynny of course really didn't want us to have them to ourselves so she played the "you need to share Mommy" card to justify getting a taste. Here is a picture of the poem. It reads,

When I am at school, or when we are far apart, you may get a little sad, but you are always in my heart. So here are some hugs and kisses, for when I am away, to remember that I love you each and every day!

Made my day!

Playing Catch-up

2009-08-30T23:10:00.003-04:00

Hi All,

No I didn't take a short haidas from blogging. I have been busy. First let me tell you that I hated how my blog looked. I really did. I have changed it several times and I still am not crazy about how it looks. I have seen so many really professional looking blogs out there and I am very jealous. So, I went back to square one and tried to redo mine over again. So, again I am not totally satisfied but I guess it will do for now.

On the homefront...We were all sick this past week. Some funky sinus, ear infection, cold thing going around. It knocked me out for a few days. Gwynny had been sick for over a week so I took her to the doctor on Wednesday only to find out that she had an ear infection. Good and Bad...Good because we now know part of why she was coughing so much. Bad...because she has to take an antibiotic, and she has to be on Claritin for a month to help with the cough thing she has and if it doesn't improve we will have to look into other options. Thank the Lord, Lily is ok. I took her to the doctor on Friday even though she only had the cough a couple of days prior. I am always paranoid when it comes to her. I went on Friday as well and found out I have a sinus infection. Bill as usual dodged a bullet and just had a bit of a cold for a couple of days. Lucky guy! So life was slowed down just a bit at times this past week.

Gwynny...starts preschool Tuesday...YEAH!, YEAH!, YEAH!, ahummm...did I do that? LOL! We had orientation this past Tuesday evening and I can tell she is really going to enjoy it. She was obsessed with these dress-up clothes they had there and of course one of the outfits was a Princess Jasmine costume and she can't wait to get into that thing! That is all she talked about the next day. I think we are about ready for the big first day. Got some new shoes Friday at the mall and she got lots of new clothes with her birthday money so she should be good to go. It's amazing how many things kids need and I am told it only gets more expensive once they actually go to regular school. Woo Hoo! So much to look forward to. I'll post pictures after Tuesday of her big day.

About Lily...well we went back to the opthomologist this past week to get her eyes rechecked. If you all remember she was diagnosed as being near-sighted. Well, after waiting around for about 45 minutes for her eyes to dilate the doctor confirmed that she definitely needs glasses NOW! He feels that it would not be fair to her development if she was not able to see things clearly beyond about a foot. I agree. So, we begin the search for frames and lenses for our baby girl. I know that I definitely want her to get these frames called Specs4Us because they were designed especially for children with Ds. A woman here in the Cleveland area actually designed them because she saw a need for them based on her own daughter's issues who has Ds. Here is a link to the website in case anyone is interested. http://www.specs4us.com/ The link you want to click once you get there is on the left and it's called "Erin's World". Check it out. My biggest problem right now is coming up with the money for all this. Will have to pray and trust that the Lord will take care of it. Everything else with her is about the same. Still plugging away with OT and PT, oh and we did add Speech on this past week as well. Speech therapist sounds pretty good so we will see how that pans out.

Well, it's late and Gwynny has been up at least 4 times telling me she doesn't want to sleep. Too afraid she might miss something I guess. Lily's IFSP meeting is in the morning and we have a busy week ahead of us. Hopefully, I will have some time to check in here and put my thoughts down on paper, so to speak. Till later... God Bless You and hope everyone has a blessed week!

Gwynny said...

2009-08-20T23:20:00.002-04:00

Thinking about kids and the funny things that they say reminded me of something else Gwynny said the other day that cracked me up. Sitting at Bob Evans having dinner Sunday after the fair and she looks at me very serious and says...

Gwynny: Mommy, you know, I love your husband!

Me: Laughing like crazy I say back to her...Gwynny, you know, I love your Daddy!

We all are now laughing hysterically! LOL!

A Conversation with Gwynny

2009-08-19T23:04:00.002-04:00

Today we went to the pool. It was a bit overcast outside, with temps in the mid 80's. Gwynny kicked off her shoes as usual and went barreling full steam ahead for the swimming pool. Much to her surprise the water temperature was a bit on the chilly side today. She quickly got out and came galloping back to the chair where I was sitting. Our conversation went something like this...

Me: How come you're not in the pool?

Gwynny: Because it's too cold for me.

Me: Too cold? Oh, well if you don't want to swim then maybe we should go home.

Gwynny: Ignoring the last part of what I had just said she replies: The water is too cold for me today and I can't walk on water.

Me: Walk on water?

Gwynny: Yeah, I can't walk on water like Jesus can.

End of story. LOL!

The frosting on the cake with a cherry on top!

2009-08-15T22:51:00.002-04:00

Hello Blogging World! Sorry I have been gone for awhile but part of the reason is that our cable modem decided to catch on fire last week and so we had no Internet service for several days. Don't worry, nothing bad became of it such as the place burning down, we just didn't have any Internet for awhile. Well, now we are back up and running and I have so much to catch people up on.

Let's see...let me go back to Friday the 7th at Mc'Donalds. The kids party went well. Kids had a good time, food was good, and cake was actually really good for Mc'ODonalds as Gwynny calls it. We also got an added bonus of a discount on the party since they didn't have enough curly straws for all the kids and one of the children was a bit upset about it. We asked the hostess if she had any more but to our dismay she did not. We asked her to talk to her manager and that led to the manager coming in and asking us if he could help us. Too funny! After we told him about the lack of curly straws he offered to give us a discount on the party! WooHoo! Every little bit helps these days!

Friday the 7th was bittersweet. It was Gwynny's birthday and she turned 4! Can't believe it! The party was great and everyone had a good time but the crumby thing that happened earlier that day was that my uncle passed away. He was supposed to come with my aunt and cousin to Gwynny's family party on Saturday. It was so sad just thinking that they wouldn't be able to make it to the party on Saturday. He was such a caring and loving man. He and my aunt, also my cousin have given my kids so much over the years and they were a HUGE help when Lily was in the hospital. I soooo much appreciate all that he did for us! He was a great man, full of compassion and he definitely will be missed. Uncle Steve you will be missed!

Saturday was the family party which was a bit smaller but Gwynny still had a great time! My brother, his wife and two kids came over and we had Tacos, one of Gwynny's favorites! I ordered her a Princess ice cream cake from Dairy Queen and she was crazy about it! She is completely into the Disney princesses so I hope we get to go to Disney World this winter as we are planning.

Last week was hectic as usual. Liliana finally, yes finally got her g-tube changed over to a button on Tuesday the 11th! What a difference! So much easier. No more taping the ends, very little leaking! I am a happy camper! The only thing they wouldn't take off was the granulation tissue that has grown around the hole. Dr. says she couldn't do it at that time due to possible infection. So we will have to wait to have that removed at her next appointment on the 28th. Overall, it went very smoothly and Lily came out of it much better than previous times. Hallelujah!

OT and PT for Lily are about the same. Still struggling with getting Lily to eat by mouth. It seems like the minute I miss feeding her by mouth she just goes right back to square one and forgets everything that we worked on. Her head seems to be getting stronger and she can sit up with minimal support but not on her own yet. We continue to work on this skill. She also hates to be on her stomach. I am hoping that now that she has the button that she will be more willing to lay on her tummy. Every time the PT puts her on her stomach she just has a fit! Oh well, we will continue to try. She is up for a review of her IFSP but there really isn't much to change on it. I hate those things anyways because Lily is Lily and she will master these skills when she is ready and willing to. That meeting is scheduled for the 31st.

On another note, my dad is starting to show signs of improvement. He was finally taken off the ventilator today and has been breathing on his own fine since earlier today. He will continue to stay in the ICU until they feel that he is more than ready to move on. He still has to have a swallow study done to find out why he aspirated which led to the pneumonia. Not sure where all this will lead us but worst case scenario he may have to have a g-tube like Lily for feeding if his Parkinson's disease has progressed to the point that he is unable to swallow his food correctly anymore. I really think though that he may just need some modifications for eating and he may be ok. He continues to be in my prayers and is on the prayer list at my church. He is a fighter and I feel like the Lord has already done a work in his life.

Summer seems to be flying by so quickly. We have spent many days at the pool and thoroughly enjoyed it. I think Gwynny and I will cry on September 7th the last day it will be open because we both love going there so much. Well, with the pool soon closing it just brings me to the beginning of a whole new avenue for Gwynny. She will be starting preschool on September 1st! I don't know who is more excited me or her! We went up to the school last week and got her registered. She will be going 5 days a week! I know it seems like a lot but with everything that has gone on with Lily it will definitely be good for her to have her own little part of her life that is special! We have an orientation for that next Tuesday night. I also need to go school shopping for her. Man, how time flies!

Well, as I said in the title this is the frosting on the cake with a cherry on top because that is exactly how life felt last week. Hoping for a better week this week and so far I am pleased. If I forgot anything I will try to post again later this week. Till next time...have a great week!

An exciting yet, sad week.

2009-08-06T21:54:00.005-04:00

I can't believe it is Thursday already. My how time flies. I haven't posted since last Tuesday and so much has happened. Well, last Friday we went on a family camping trip, Lily's first camping trip (sorry I didn't take any pics, but eventually may be able to use some of Bill's), to East Harbor State Park. It's a beautiful park and we went with 3 other families from our church. Friday night started out rough because we got a late start and then had to set our tent up in the dark. :( Not fun. Then to make matters worse these obnoxious people were camping in the group site next to ours. They kept us up all night practically Friday going in and out of their vehicles all night, yelling and talking really loud, oh and setting off the panic button on their car remote 3 different times. Who does that?! So annoying!

Saturday was fun! We got up and made breakfast and then took the kids to the beach! Gwynny had a great time playing in the sand and swimming in the very, very shallow water. The only problem was that when we went to leave the beach Gwynny's Dora the Explorer Crocs were no where to be found. I was so upset! She lost them on the beach because they were left at the bottom of the ramp that goes out on the beach, when she arrived at the beach with one of the other families we camped with. We went back later to look for the shoes but they were no where to be found so we ended up driving up to a local Walmart and getting her a new pair. Pain! Saturday night was interesting. After complaining during the day to the campstore about our obnoxious neighbors we thought the problem would be solved. Well, about 11pm they set off their wonderful panic button on their car again so I went off. I proceeded to tell them how rude they were and that I was going to report them. I did just that. Got in my van and my friend and I went down to the Main Gate and reported them. Within 10 minutes of returning to our site the ranger came driving up and got out to talk to whomever was still up, since they all decided to jump in their tents, turn out their lights, and hide. They finally complied with the quiet hours and didn't make any more noise until 7am when it started to rain. Needless to say, we didn't get a whole lot of sleep that night either so since it was raining we packed up the car and were out of there by 10am. All in all we had a great time and can't wait to do it again.

On a sad note...my dad is in the hospital. He went to the doctor on Monday not able to breath well. They gave him some medicine and sent him home. He was having a very hard time breathing and my brother got worried. The doctor told him to take him to the ER so he did. They admitted my dad and after looking him over found that he has aspirational pneumonia. Oh my gosh! Been there, done that! As the day went on Tuesday he worsened and the decided that he needed some help breathing and was placed on a ventilator. He has been on the vent ever since Wednesday early, early in the morning. He is stable and all his vitals look good. They want to try and ween him off the vent here soon. It was soo scary getting the call from my brother. It was also strange seeing my dad in the hospital. After spending so much time in the hospital with Lily I dread even stepping one foot in the door of one, but I knew I needed to be there for my dad. I knew he really couldn't respond to me since he is heavily sedated due to being on the vent but I made sure that I went up to him and told him I was there and how much I love him. I am being optimistic about the whole thing and praying for God's will to be done. I spent only an hour there today but that entire time I prayed for him and read his bible. It is comforting to me to know that so many people are praying for him and so many people care. I wish that he knew. I know my God is able to heal him! He is able to do far exceedingly beyond what we will ever know. God is good and he takes care of those who love him. Thank you Lord for my dad. Lord touch his body and make him whole. Please keep him in your prayers just as many of you did when Liliana was in the hospital. The more people we have trusting and believing together the better.

On a different note, Lily had her 15 month appointment Friday even though she is really only 14 months tomorrow. Our ped is extremely busy and that was the only time they could fit her in. She was amazed at how good Lily looks. Yes, Lily still has a long ways to go with the eating and with sitting up, but she is slowly and steadily getting stronger. Her weight and height looked good as well. I am very happy with her progress and I think I am finally starting to come to grips with the fact that she will develop at her own pace and that is ok with me. Lastly, tomorrow Gwynny turns 4! Mc'Donald's kids party tomorrow at 5pm and the family party on Saturday at 4pm! Argggghhhh! Lots of work ahead of me tomorrow but I'm sure it will be fun.

Another Trip to the Zoo!

2009-07-28T15:48:00.008-04:00

My niece and nephew are in town for a few days so Grandma, Grandpa, Max, Jessie, Gwynny, Lily, and I all loaded up in Grandpa's van and headed out to the zoo. We packed a picnic lunch to save money and we ate under the picnic pavilion. We had a great time though the weather was very hot and humid here. They have a special dinosaur exhibit there again this year and Gwynny is fascinated by it. She already went to see it once before with Grandma and Grandpa but that was all she could talk about when we told her we were going to the zoo today. I forgot my good camera at home but I managed to take some pictures with my iphone camera. So here they are "ROAR"! Have a great day!

Wordless Wednesday

2009-07-22T20:10:00.003-04:00

Vacation in Review

2009-07-15T22:18:00.015-04:00

Lily enjoying some homemade baby food!

It seems hard to believe that we have been back home 7 days already. We got home late Friday night and ever since I have been so busy with our daily routine that I am just getting around to sitting down to blog about the trip.

We left on Thursday, July 2nd around 1pm in the afternoon. We made two stops, one to go potty and one to get some dinner at Applebee's, yum! We arrived at my sister-in-law's house about 9pm. We were greeted by Aunt Traci, Uncle Kelly, baby Jenna, and their two dogs Dingo and Bella. It was the beginning of our rest and relaxation.

Day One: We hung out around the house. Since they live on a lake there is a lot to do right there during the summer. We went out in their pontoon boat for a ride and the kids really enjoyed it. I relaxed outside in the sun and we ate most of our meals outside since it is beautiful there. Later that evening, my other sister-in-law and her family arrived and the kids went fishing. Gwynny was so enthralled with the fish that my niece and nephew were catching. She wanted to pet every fish that they were catching! LOL! There were two fireworks displays, one by the bait shop and one across the lake at the beach. It was definitely a site to see with fireworks going off over the lake and everywhere. I don't know how Lily slept through it because it was very noisy.

Day Two: It was the Fourth Of July and the weather did not cooperate at all. The kids managed to get a little bit of fishing and swimming in first thing in the morning before the rain came and stayed the entire day. After awhile the kids were getting a bit stir crazy being cooped up in the house so what did we do? We went bowling! Now this wasn't your average bowling alley. It was probably 30 years old and it still looked the same. Get the picture? Well, the kids big and small had a blast! It was a first for Gwynny and she wanted to try rolling the ball herself after several people helped her get the hand of things. She was so proud of herself when she knocked down those pins! Yeah for Gwynny! After bowling we decided to eat at the Amish buffet called Stoll's. They have an excellent spread of food. As usual I ate way too much but it all tasted very good. We then headed back home and pretty much called it a night rather early since we couldn't sit outside with a fire due to the bad weather.

Day Three: The weather got a little bit better...no more rain, just cool. After a breakfast of Mickey Mouse waffles using Aunt Traci's special Mickey waffle iron the kids got in some more fishing. We decided to grill out that day since we weren't able to on the fourth. Annette and her family had to leave that afternoon so after a hearty lunch we said goodbye to them and were sad to see them go. Well, we still had a few more days with Aunt Traci and family. That evening we were able to have a fire in their outdoor fireplace and made smores. Mmmmmmmm! Good! I love those things.

Day Four: This was my birthday which to me is just like any other day. We decided to pack the kids up and head over to the beach for a few hours. Gwynny had a great time swimming and playing in the sand. Lily even went in the lake with Daddy. Later that day we grilled steaks and we got a small cake from the grocery. Everyone sang Happy Birthday to me! It was very special and we all had a great time.

Day Five: We got up as early as possible and everyone got ready to go to a local amusement part called Holiday World. It was scorching hot that day and very humid. Poor Lily was not enjoying the heat very well, but she did ok. Gwynny I think had the most fun riding all the kiddie rides and enjoying the splash park area at the HUGE, I mean HUGE water park that is all part of Holiday World. If you are ever looking for a water park to take your kids this one is the bomb! They have everything and it is huge! I didn't get to go on anything I just stayed with Lily by the splash park area but we definitely would love to go back some day when the kids are older to do it all over again. We finished out the day with a quick dinner at Grandy's on the way home.

Day Six: I wanted to hit some of the Amish stores before I went home especially one that's called, "The Black Buggy". I love that store! I always get some blueberry jam and Amish noodles to bring home. They always have so many yummy things there! We also decided to stop at Walmart since Traci needed a few things and so did we. Well, while in there I noticed that Lily needed a diaper change. Gwynny wanted to come with me so the three of us went to the women's restroom. I went to pick Lily up and I don't know if the G-tube caught on something or what but she let out a ear piercing scream. I immediately checked her tube and it appeared to have some greenish gooey stuff oozing from the site and it looked like tissue was hanging out. I freaked and of course I got the kids together as fast as I could left the bathroom and proceeded to tell Bill that we needed to go to the ER immediately. Well, we headed to the ER and to make a long story short, we were given an antibiotic, some gauze and sent on our merry way. Turned out that the ER doc told us that they don't deal with G-tubes that often but from what he could remember when he was in Chicago it was totally ok. I was not real happy with his confidence level but what was I supposed to do. I did insist that they give us an antibiotic so that I could be sure that Lily didn't have an infection even though he said she didn't. We did follow up Monday with our GI doc at the Cleveland clinic and she reassured me that everything looked fine. No infection! Yeah! She explained that the tissue that we are seeing is called granulation tissue which means the body is trying to fill the hole where the tube is in her stomach but since the tube is in the way it is unable to. It made sense after she explained everything. So Lily is still on for her switch from G-tube to button on August 11th. We can't wait!

Day Seven: This was our last full day in Indiana so we just basically relaxed and didn't do a whole lot. We did manage to get out on the boat for a short ride so that Gwynny could try her hand at fishing with a hook. She was so excited. With a lot of waiting, patience, and some help from Uncle Kelly she caught a fish and immediately wanted to pet it. Yuck! Oh well she's almost 4! After a tasty lunch made by Aunt Traci we hopped in the car and headed for home. We again made two stops, one for the bathroom and gas, and then one at Bob Evan's for dinner. We arrived in our driveway at approximately 10pm. All the pics are from the trip. It was a vacation that we definitely needed as a family and we really had a very nice time.

Wordless Wednesday

2009-07-08T21:12:00.003-04:00

2009-07-04T15:17:00.001-04:00

Getting Ready For A Much Needed Vacation

2009-07-01T09:01:00.002-04:00

Well, this week has been such a rat race between Lily's therapy appointments and doing last minute errands, etc. to get ready to leave for vacation. We originally were going to leave after Bill got home from work Thursday, drive for a few hours, then get a hotel for the night and finish the trip on Friday. That would get us to his sister's house much earlier then if we left Friday. Well after talking it over Bill dreaded the thought of packing the car, then unpacking it at the hotel Thursday night, then repacking it Friday morning. I understand the frustration of that. We also thought we could save that money that we would spend on a hotel and use it for vacation. Well, now I have again been rethinking things. I guess I am just anxious to get out of here for awhile. I suggested to Bill that maybe we should leave Thursday. Maybe it would be better if he took the day off and we drove the whole way Thursday because Friday may end up being a very busy day on the highways. Lot's of traffic! I'm thinking that a lot of people have the day off in observance of the 4th and thus they will be using that day as a travel day too. Makes sense, right? Well, this would also mean that we would have to bust our butts tonight and get packed and do as much as possible before bed if we did plan to leave tomorrow morning. It might be worth it though. Decisions, Decisions. All I can say is I can't wait to just relax at my sister-in-law's house. She lives right on a lake. We can go fishing, swimming, out for a boat ride, and just lay around and relax. They have no tv, but they do have internet so I can check my blog and everyone else's and just play on the computer. It will be a nice change. We also are going to try and go to an amusement park called Holiday World. I think G will really enjoy that! Well, off to start my incredibly busy day from therapy at 11am, lunch with Grandma and Grandpa at 12 noon, some errands, hair appointment at 2pm, pedicure after that, then off to the gym to workout, and home for dinner then packing. Makes me tired thinking about it.

Sound Effects

2009-06-29T19:59:00.004-04:00

Lily has discovered a new talent. She makes sounds with her voice while I move my hand over her mouth! She loves it and thinks she is quite funny. Enjoy!

Here's Lily!

2009-06-26T21:41:00.008-04:00

For anyone that is wondering how Lily has changed over the past month or two here is a few pics of her so you can check her out for yourself.

Thanks!

2009-06-24T09:01:00.002-04:00

Thank you everyone for your words of encouragement. I really need some type of support system. Most of the time this journey feels very very lonely. I have the support of my church and many of the people there have been very kind and helpful to us but I still feel like they can't relate. Unless you have been through this journey you do not understand fully. I know you all can relate to this. I also want to add that even though I am feeling overwhelmed and stressed out about things lately that I really do love Liliana. It just bums me out when I think of how much she has been through and how much she has to struggle. It doesn't seem fair to her. I still question," Why does God allow these things to happen?"

My post yesterday was very harsh sounding and I apologize but I just needed to vent. I also was extremely tired yesterday since Gwynny woke me up at the crack of dawn. She has a very rude way of waking me lately. It goes something like this, "Ahhhhhhhhhh! Ahhhhhhhh! Ahhhhhhhh!" Just constant screaming! It is soooo annoying. I am trying to teach her to be a little more considerate of others especially when you want to get their attention. She is having a rough time lately as well. I know this past year hasn't been easy for her either. She was shifted all over the place from Grandma and Grandpa's to friends houses back to us while Lily was in the hospital and that is hard for a 3 year old. I feel like I have been neglecting her needs in a lot of ways. Ironically, she has problems with eating too much and it has become a major issue in my house. I calculated how much she ate the other day and she was up near 1500 calories for the day. I looked online to see how much a child that isn't very active and age 4 should be eating and it said 1200 calories. Whoa! So this concerns me. I have been trying to cut back on what she gets and give her more healthy alternatives. I also may take her into the doctor because I am concerned there may be some underlying problem such as inactive thyroid or juvenile diabetes. Bill and I were saying that we have two kids with eating problems both on totally different ends of the spectrum. One eats too much and the other doesn't eat enough. I also in my spare time (what's that?) have been looking at preschools for her to go to starting this fall. I actually think I found one and I think I am going to send her 5 days a week instead of 3 since she is very head strong and does not like to sit down with Bill or I and work on different skills. I hope this isn't too much for her. I think it will be good for her to become more independent and in the mornings I can focus on Lily's issues and if she has any doctor's appointments I can try to do them in the morning. If anyone has any feedback about preschools or how much you should send your kids I would love to hear what you think.

Well, as usual I have to get moving so I can be ready to take Lily to outpatient OT this morning then hopefully this afternoon we can go to the pool for awhile since it has been very hot here this week. Lily did get the ok to go in the pool yesterday when we were at her follow-up appointment with her GI doc. Also she is scheduled to get her tube changed to a button on August 11th. So we have a few more weeks of dealing with this crumby tube but I know it will go fast. Oh, and she is now graduated to Pedia Sure. Hopefully, she will tolerate the transition from formula to that. I am trying her first feed right now with it. More to blog about later...

It's a Love/Hate Relationship

2009-06-23T09:11:00.003-04:00

Ok, so I haven't been actively involved in the blogging world. Sigh. I apologize. I really have been feeling pretty overwhelmed with life lately. To be completely honest I haven't felt like doing anything related to therapy, doctor's appointments, and well having to deal with a child with Ds. I'm sick of it. I'm having a hard time keeping a positive attitude about things lately. It's like I feel if I don't think about it then it will go away. I know I have not completely come to grips with the whole Ds thing. I know I always sound cheery and positive on here most of the time, but honestly things have not gone at all as I thought they would. Here we are Lily is now 1 year old and it's like every time I turn around we find out some more bad news about her, as if having a congenital heart defect wasn't enough. I keep asking God, why me? Why am I the one that you chose to take on this HUGE endeavor? Then I say, "It's not fair!" All I wanted was to have one more child, one more normal child. This stinks! Sob, Sob. Part of me thinks maybe I should have never had kids. I was 39 when I had Gwyneth and 41 almost 42 when I had Liliana. Maybe I had no business having kids that late in life, knowing full and well the higher risks involved in having a baby with some kind of problems the older you are. Well, too late to turn the clock back now. What's done is done and as they say, "You made your bed so now you have to lay in it!"

I kind of look at this whole thing as a Love/Hate relationship. I love the fact that Liliana is so sweet and adorable and very good-natured, period. Now for the Hate part, I hate the fact that she is sooo floppy still that she can't even hold her head up. I hate the fact that she can't sit up so she is stuck sitting in a bouncy seat or laying on the floor all day. I absolutely despise the fact that we were told she would start drinking fantastically from the bottle after she had her heart surgery. Lie! No more drinking from a bottle for this girl. I hate the fact that I have to do mouth exercises with her every time before I can feed her baby food and then she can barely take 2 teaspoons on any given time. I have been told this is GREAT! Snicker. Great is if she were eating the whole entire jar! Let's see what else! Oh! I hate the fact that she has to be feed through a tube in her stomach that was obviously designed by a complete idiot! I hate the fact that she is near-sighted and will require glasses down the road, oh and did I mention she has nystagmus, wooohooo! What else? Oh the latest that I did not blog about that I found out about 2 weeks ago. She went in on June 9th for an ABR hearing test in which she had to be sedated (that's a whole other story), and the result of that...she has mild hearing loss in her right ear! Wow! all this great news is just killing me! I can't stand anymore bad news! I wish I could accept the fact that this is, what it is, and I will always have to go to lots of doctor's appointments and I will always be the one that has to look out for her. She will always need my support and help. That's huge! I don't know if I am capable of taking on all this responsibility. I feel like I have been trying to keep myself busy to keep from thinking about it and in the same respect I am exhausted. The past few weeks we had a garage sale at my in-laws and I am having another one here this weekend. Last week, we got up early everyday and participated in VBS at church. In between all of that I have been doing Weight Watchers, going to the pool, working out, going to therapy appointments with Lily, and just trying to keep up with things around the house. I can't wait for vacation! We leave on July 2nd and it can't get here fast enough! I wish I could just get past all these feelings I am having and feel ok about things but I can't. My whole world has been turned upside down since Liliana came along. I have always been a career-oriented person not a stay-at-home mom. I have always been part of the bringing home a paycheck and now I have nothing. I have to worry constantly about how we are going to make ends meet and if we will have enough money to put food on the table. It's a lot of pressure. I literally sit here daily and try to think of ways that I can bring money into this house so that we will not have to worry anymore. It makes me sick to my stomach thinking about it! It's soo difficult to completely put into words all the emotions I have been feeling lately. I think this is part of the reason I haven't felt like blogging. If you don't write about it you don't have to think about it. Well, I guess I needed to get some things off my chest even though it still feels like I am carrying around this HUGE weight that needs to be lifted. God help me to find something good in all of this and bring me back to a better place in my life. I need your help and guidance right now. Thank you for listening.

Too Busy For Blogging

2009-06-14T21:20:00.003-04:00

Hi Everyone! I haven't blogged lately, well, because I haven't really felt like blogging. I have been so busy with therapy appointments for Liliana, garage saling, going to the pool, etc. etc. that I haven't had much time to blog and when I do I am too tired to care. I know that sounds pathetic but it's true. I usually get more satisfaction out of reading about everyone else's happenings so most of the time I just come on and read everyone else's blogs. So, if you don't hear from me much I apologize but I'm just not into it right now. Hopefully, I will get out of my funk and get blogging again soon.

G-tube: Pros and Cons

2009-06-05T11:21:00.000-04:00

Pros

1. No more checking placement of the tube to make sure it's in the right spot. Yeah!
2. No more trying to put in a new tube down the nose, because it doesn't go in her nose and she can't pull it out. Hip Hip Hoorah!
3. No more taping up her little cheeks and making them all sore! Awesome!

Cons

1. She doesn't like to be on her stomach right now. Bummer!
2. The tube they placed has no clamp so you have to clamp it off with your fingers and pray for the best! With that I mean pray that nothing squirts out at you. Get the picture, not a pretty one.
3. The plugs on the ends of the ports do not always stay closed especially when you tuck it up in her shirt or if she is very active. Result: More stomach contents all over her clothes! NASTY!
4. No bathing for 3 weeks, only sponging!
5. No swimming pools for 3 weeks, oh and when you finally do make sure that you have those plugs covered really good with tape that's waterproof so they don't open up. I think you can figure out the result if that happens.
6. Last, depending on your GI doctor depends on when you get the tube removed and graduate to the mickey button. Our GI doc says not for 12 weeks! Let's see...she had the surgery on June 1, 2009...you do the math. That puts us at September, the whole summer will be gone. It's not fair!

Am I venting, YES! Am I a little upset, YES! Is it really that bad, probably not, and I will have to learn to live with it. I'm sure it will get easier as time goes on. Done venting for now. Have a good day!

G-tube! It's time!

2009-06-01T17:29:00.000-04:00

Today we arrived at the Cleveland Clinic's P20 Family Surgical Center at around 9:45am. Lily had nothing in her belly except Pedialite since 4am. She was calm and acting her normal self. After checking in and waiting for almost an hour I received a phone call on my cell. The woman asked me if we were coming to Liliana's MRI appointment. I just said, "You've got to be kidding me?" I called the clinic in the morning to get the time of surgery and they told me that she was to come to P20 for surgery first. She was not having the MRI first. Well, that was a huge mistake. She was supposed to to have the MRI and then the G-tube surgery. Obviously the right hand did not know what the left hand was doing. Well, once that got all straightened around we were finally on the road to getting the MRI done. We were escorted into a room where we had to answer all those millions of questions and then I went back with Lily and stood by her side while they put the mask on her face and began the sedation process. Once she was drifting off into "LaLa Land" I left and Bill and I began the waiting process. We did the usual, went potty, played on the computer, read, ate some lunch, played on the computer some more and then our pager went off. Well, the message said, "Surgery was in progress". It was approximately 1:15pm when it went off. Well, we knew that the MRI had to be done and now it was just a waiting game till the tube surgery was complete. At approximately 2pm they paged us again and said to report to the M20 desk. Dr. Mohr our Gastro doc was their and she told us everything went very smoothly. She lead us back to Lily and of course she was crying. She was definitely in some pain. They gave her some fentynal (sp?) to help with this and then they watched her vitals and got her cleaned up. Let me add that throughout the day we saw many old friends. It was almost surreal. It made me think back to the heart surgeries and how we practically lived here for 3 months. The sites the sounds and everything just bring me back to that time. Well, thank goodness we are only spending one night here.

So here we are once again back in the poooooooodddddddd life again! Makes me want to sing. Just kiddin'. Well, when we first arrived in M40 bed 8 (many of you can relate to this section of the hospital LOL!) Liliana was very fussy! We couldn't tell if she was in pain or if she was hungry or a combination of both. They will not allow her to eat for 6 hours so that is just plain rough for a baby. They gave her at least 5 doses of fentynal (sp?) before she even came up here to the floor. She just seems to blow right through pain medications, always has. They tell me it's a Ds thing. They then gave her some tylenol (yeah, right?), didn't even phase her, then they finally ordered more phentynol (give me a break here I'm trying) and gave her another dose around 6:00pm. She finally fell asleep in my arms and woke up about 7pm. Whew! Now maybe we could try to get a bite to eat. Nope! Daddy had to bring it up to the pod. Didn't want to risk putting her down and then her waking up.

So, we just talked to the 3rd shift nurse and we are anxiously awaiting her return with Lily's first feeding by G-tube! Granted it will not be her high calorie Nutramigen milkshakes she gets it will only be Pedialyte to start but at least it's something. They are also going to start her continuous night feeds at 10pm. Can't wait hopefully she will go to sleep. This day can not end fast enough for me. Bill is planning on going home at some point, while I am going to tough it out here on this very uncomfortable couch for the night. Hope I can get at least a little sleep! More updates soon...

Decorations from Lily's Birthday Party

2009-05-27T14:22:00.001-04:00

Here are a few pictures of some of the centerpieces and the banner we had at Lily's party!

Baby Dedication/First Birthday Party

2009-05-26T09:56:00.000-04:00

Well, it was a long but exciting, fun-filled, special weekend. I am tired and we have a therapy packed day ahead of us. Anyways, I didn't post last week because I was sooo busy getting ready for the party. My house was such a mess because after spending 3 1/2 months at the Cleveland Clinic I kind of let things go downhill. I had a lot of catching up to do. I sent Gwynny to my sitter's house a couple days and to my in-laws one day and that really helped me to get things ready. Anyways, everything went off with pretty much no glitches. The Baby Dedication was soo touching. We had our friends Scott and Kathie read the poems " Welcome to Holland" and "Heaven's Special Child". It was soo moving. As Pastor prayed for Liliana and annointed her little head with oil I realized once again how lucky we are to have been given the opportunity to raise such a wonderful child as her. Many of our family and friends were there in church to celebrate and the speaker that morning was excellent. Everyone came back to our house for the birthday celebration and we had a great time. Lots of good food, good conversation, and just plain fun. Lily never did get to enjoy her birthday cake because by that time she was so tired she feel asleep on her great grandma's lap. I saved her little smash cake for her actual birthday so we can have some fun with that. She got a couple of toys, money, and a gift card. I see shopping in the future! LOL! All in all it was a great time had by all. I will post a link to the pictures since there will be sooo many of them. Now where the story begins...

I can't believe it has been almost a year since we had Liliana. I remember when I went to my OB's office and he told me that they needed to schedule a C-section because the baby was continuing not to grow well in the womb and they needed to take her now. I was about 37 weeks when he told me this. I remember thinking I'm not ready for this baby yet. She wasn't supposed to be born until around June 17th, but God had another plan. A completely different plan in store that I never dreamed I would be living out. She was born on June 6, 2008 and weighed 5 lbs. 10 oz. and was 17 1/4 inches tall. She was the most beautiful baby! The C-section went very well, except for a few problems giving me the spinal that didn't want to go into my messed up spine. Anyways, they cleaned her up and I got to hold her and they wheeled us off to recovery. They then took her and eventually once I was settled into a room the news was broke that they thought she may have Down syndrome and that we needed to take a blood test and wait almost two weeks to get the results back. I was devastated. Why me Lord? What did I do to deserve this? I am not capable of taking care of this child? I don't think I want this child? (Yes, I actually thought that at the beginning), but God has a way of working in us and through us and helps us to see that things are going to be ok and that he is in control. As if finding out that your child has Down syndrome wasn't enough, the following day we were told that she was born with a congenital heart defect that would require surgery between the ages of 4-6 months of age. Oh my gosh! Are you kidding me? I broke down and cried hysterically! After a lot of reflection and whining and crying I decided that the most important thing of all was that my child had to live. The heart issue was much more serious than her having Down syndrome. I decided that I was going to make the best of things and that I was going to accept things and move forward and try to be the best advocate I could possibly be for my child. So, I started to read a bunch of those books about parenting a child with Down syndrome until someone told me not to read it anymore, that it would just make me more emotional and stir up a lot of unwanted emotions that I really didn't need at that time. So I stopped. Instead I sought help from a local group Down syndrome Northeast Ohio and I found that there really are a lot of families out there just like me. They offered advice, support and anything else that I needed and it was perfect timing. You see, that is how God works, in his perfect time. He gives us what we need, when we need it. Liliana then spent 2 1/2 more weeks at Fairview Hospital learning how to suck from a bottle. She came home to lead a somewhat normal life until it was time to prepare ourselves for the open heart surgery she required. Liliana began to go downhill with her bottle feeds and was admitted to Cleveland Clinic Children's Hospital to start her on an NG tube and learn how to feed her this way. We never dreamed that things would come to that but the doctors assured us that she would do so much better with the bottle after she had her heart surgery. So we learned the ropes and feed her in this manner until November 4, 2008 when she went in for her first surgery. What was supposed to be a 7-10 day hospital stay turned into about 101 days if I remember correctly. It seemed like it would never end, but looking back on it now it seems so long ago. Liliana has come soo far! She definitely has a long ways to go but she really has come soo far! I remember sitting in her room day after day just asking God when it would come to an end. I had doubts and fears fill my mind at times and I still do today sometimes. I just knew I had to stay strong for my baby! I had to keep believing! I had to keep on striving to stay positive and every day that I did the Lord blessed me in more ways than you can imagine. If I was having an extremely bad day he would send someone across my path that would give me words of encouragement, or just simply a "hello" or a smile. I took advantage of the free rakki (spelling) massages they gave at the clinic and made a lot of new friends along the way. It was an experience that I will never forget as long as I live. My baby that came sooo close to death was spared by our marvelous creator. The ultimate healer, made my baby's body whole again. For this I am thankful, and for this I will praise the name of the Lord.

God used a lot of people in a lot of ways in our lives. He used our friends Scott and Kathie to minister to us when we felt like no one really cared. Their love and concern definitely made a difference and it helped lead us to the church we now attend. CTK church became a huge support system for us. They had a prayer chain going, they helped us financially, and they gave us food at Thanksgiving and Christmas. They reached out to us with open arms and accepted us willingly. We had several visits and phone calls from Pastor Tom and each and every time he came to visit or call it lifted our spirits and let us know that people really cared. Liliana has no idea how many people were praying for her and how many people love her. She is such a lucky little girl!

So as I look forward to the future. I feel very optimistic. I feel hope. I feel like Liliana really has a chance. She has a support system. She can be whatever she wants to be and the Lord has given me the tools I need to help her succeed. I hope to have many, many more birthdays with Liliana celebrating her successes and celebrating her wonderful, marvelous life!

Just being cute!

2009-05-21T09:05:00.000-04:00

Wordless Wednesday...NOT!

2009-05-13T10:11:00.000-04:00

Well, I was going to take some candid shots of my girls this morning and post them for all to see but of course went to turn on my camera and it said to change the batteries and I don't have back-up. :( Oh well! So now you get to listen to me blab for awhile. Let's see what is new and exciting here. I am busy getting ready for Liliana's Baby Dedication/Birthday Party. One would think that party planning and preparations are supposed to be fun and they are except when you have a ton of cleaning to do. My house is in a bit of chaos! We have been doing some remodeling around here over the past few months since Lily came home from the hospital so certain rooms have been neglected. Also I just haven't cleaned as well as I should. I hate cleaning so now I am forced to do major cleaning. Not easy with two kids and Lily with all her medical issues.

Well, we only have about 2 and a half weeks left and Liliana will be going in for her G-tube surgery. I have been trying to prepare myself mentally for it but it is hard. I know it is a very common procedure and Lily will really only be in pain the first night after placement. They will give her morphine for pain to which I know she will probably need more. Anyways, they called yesterday to go over all the details so now it is just a waiting game. I am trying to just focus on the party and Baby Dedication and all the fun of that and try not to worry about the surgery. The GI doc did say that there may be a slight chance that when she goes in with the endoscope to find an appropriate place to put the tube she might not be able to find the right spot. If this is the case then Lily would have to come back in and the surgeons would have to make a much bigger cut in her abdomen and open her up to find an appropriate spot. I pray that all goes well the first time. We have been down the surgery road before and have not been so fortunate. I told the doctor we are going on vacation around the 4th of July and that I didn't want anything stopping that from happening. WE NEED A BREAK! Especially Bill, sometimes I think he is going to explode if he doesn't relieve some stress. We also haven't been on a vacation for over 2 years. She assured me that if there was a problem that they would not do surgery until after we came back from vacation which would be sometime in July. I certainly do not want to wait that long since we are sooooo done with this NG tube.

On another note, my theme for Liliana's party is teddy bears. The plates and napkins I got have little teddy bears on them so I thought it would be appropriate. Also when Lily was in the hospital she got a lot of teddy bears. Every time a child has an open-heart surgery they give them a teddy bear in the PICU. So I am going to use some of those bears to help decorate my house. My aunt in Alabama is going to make an outfit for the Build-A-Bear she got that will match the outfit the bear is wearing on the plates and napkins! Sooooo cool! Well, I better get my butt up and start cleaning. Have a great day!