The Kang Family

The Kang Girls

2011-01-21T21:24:00.001-08:00

I can't believe how quickly time continues to fly by us. As cliche as it sounds I truly can't believe how quickly my girls are growing up. I absolutely love watching them grow together and begin to create the amazing bond between sisters that will last them a life time. Madi LOVES her baby and continues to smother her with hugs, kisses, love pats and even licks. Ella is completely enthralled with Madi. She loves to watch her and laughs easily when she sees Madi. It has been so long since I posted so here is a brief update on each of the Kang girls:

Little Baby Ella,

You have become a sweet and mellow baby. You really only fuss when you are tired or hungry but that fuss can quickly turn into hysteria if you don't get what you want. You still are not the best sleeper but I am not sure if that is because you truly are hungry or you just want a little private cuddle session with Mommy. You usually go to bed around 7:30 or 8, wake up at 2 and 5 to eat and then are up at 7 for the day. Although last night you only wole up at 4am to eat...mommy is praying that this will continue! You like to take cat naps in the morning but will take a 3 hour afternoon nap (at the same time as sissy...mommy loves this). You eat every 3 hours during the day and have finally begun to take a pacifier. You are now 4 months old and are growing so fast. At your 4 month checkup you weighed 13lbs, 4oz (50th percentile) and were almost 26 inches long (95th percentile). You are very long and are finally starting to fill out.

You adore your sister and watch her every move during the day. You love to sit in your bumbo chair and exercauser and take it all in. You are constantly sucking on your fingers or chewing on toys. You are a very smiley baby and love to be snuggled. You are a chatty little one and make all sorts of sounds. You are the perfect addition to our family and you bring so much joy to us all. Having you has been a completely new experience for us. We have been able to just enjoy you and not worry about weight gain, heart issues, feeding issues, and all the health issues that had become our reality. Your birth was a breath of fresh air for us. I was able to keep you by my side from day 1 and never had to leave you at the hospital...something I had dreamed about. I fell in love with you the instant I met you. I am amazed at how our love as a family just grew the day you were born. You truly do complete us. I love spending each new day with you...slowly learning more and more about you. Many people have told me that you seem to be a very wise baby...an old soul and I couldn't agree more. I love you sweet baby girl and am excited to get to know you more every day.

To my Madi,

You amaze us each day with all that you have accomplished. The most exciting news is that you are now walking...everywhere. We waited TWO years for you to reach this milestone and the long wait seemed to make it that much sweeter. When I sit back and reflect on all that you have endured, all the setbacks and extra struggles, I am even more amazed at what a strong and independent little girl you have become. I sometimes forget that a year and a half ago you were recovering from a complicated open heart surgery. It wasn't that long ago that you needed the help of oxygen to drink your bottle...and now you are walking! It truly blows my mind. You had a rough start my dear and yes, compared to your typical peers you are a very late walker...but that is okay. The most important thing is that you are doing it! You are happy, healthy and learning new things everyday. You are doing it all at your own pace ans we couldn't be more proud of you.

You hit the infamous "terrible two's" a little early and (knock on wood) it seems that you may be through the tough part. You still have your strong opinions, tantrums, and sassy moments but you have a heart of gold that shines through. You truly have the sweetest spirit I have ever met and bring so much joy and laughter to everyone you meet. You love to say Hi to EVERYONE and are always the greeting committee anywhere we go. You make so many people smile...complete strangers constantly comment on what a sweet girl you are.

You were a picky eater for a few months but are now back to the old Madi...eating lots and loving just about everything. Here are some of your favorites: berries of all sorts, oranges, grapes, ham and turkey, hummus, cottage cheese, avacado, cheese, eggs, rice, pasta, edamame, asparagus, bananas, pizza, goldfish crackers, pirate's booty...the list could go on. You love to sing songs and know the hand motions to: patty cake, itsy bitsy spider, 5 little monkeys, if you're happy and you know it, the more we get together, and row row row your boat. You love reading books, stacking blocks and playing with your play kitchen. You like to play with your baby dolls and make them dance and clap their hands. You still love to empty out your toy boxes and throw your toys across the room...I'm patiently waiting for that to get old. You have quite a few naughty things you like to do on a daily basis when mom is tied up with Ella. A few that come to mind are: playing in the toilet, pulling out all of the baby wipes from the container, dumping out the diaper bag, climbing on the fireplace, getting into the pantry.

You have become a very independent 2 year old. You hate to have your diaper changed and try to swat at me every time I lay you down to change you. You demand that you feed yourself with the fork and spoon and get very angry when I try to help you which usually ends with food being flung on the wall. You quickly swat my hand away when I try to help you walk. Although it may be frustrating to me sometimes, I love how independent you are. I love that you want to do things for yourself and although it may take you longer and may not be very graceful, you are always very determined to succeed. I love you so much Madi Lou and can't wait to see what you have in store for us!

Guess Who's 2!!

2010-11-16T14:21:00.000-08:00

Our little Madi girl turned 2 on October 29th. I can't believe it has been 2 years since she came into our lives. She is turning into such a big girl and brings so much joy to our lives. I truly can't imagine life without her. We celebrated her birthday at the Tacoma Children's Museum surrounded with friends and family. Madi decided that she would fill the role as a 2 year old and was a little grumpy at the beginning of her party but cheered up as the celebrating went on. I think she was enjoying all the attention I was able to give her since there were plenty of arms to hold Ella!

We are truly enjoying this stage of Madi's life. 2 definitely has it's challenges...Madi has perfected throwing tantrums when she wants something and has definitely learned how to test the waters when we tell her no. She is sweet and sassy...all rolled up into an edible little girl. She makes us laugh constantly and loves to be the center of attention. She loves music and whenever she hears it will break into some sort of jig...and I must admit, the girl has rhythm! She loves to read books, throw balls, stack blocks, play with her baby dolls, talk on the phone, Skype with Nonna and Papa, push her wagon around, pet (sometimes hit) our dog Oliver, play outside, cruise the furniture, climb our fireplace, empty all the baby wipes out of the container, imitate us and give her sister kisses! She is so much fun and it is so amazing to watch her learn new things each day. She has accomplished so much in her short 2 years of life and is such a blessing to us all. We love you Madi and I am so proud to be your Mama!!

Here are a few pics from her party:

Catching Up With Some Photos

2010-11-16T13:59:00.001-08:00

We had a fun Halloween with our monkey and banana! We took the girls up to Proctor where all the shops and restaurants hand out candy.

We also went to the pumpkin patch a few days earlier. Madi had fun playing in the patch and Ella slept through the whole thing!

She's Here!

2010-09-26T14:49:00.000-07:00

Our family of three is now a family of four and we are loving every minute of it! Ella Lynn was born on September 17th and weighed in at 8lbs1oz and 20.5 inches long. She is absolutely perfect! She is a mellow baby who really only cries when she is ready to eat. Ella is a nursing champ and is quite the little piglet! She is now eating every 2 to sometimes 3.5 hours so Mama is able to get a little more sleep at night.

Madi is adjusting to this big change pretty well. She gets very upset when Ella cries and ends up having a small tantrum herself. She has always been very sensitive to other kids crying so this was to be expected. She is slowly getting better with it but we still have a ways to go. It will be nice when one baby crying doesn't turn into two babies crying! Other than that Madi loves to hold, kiss and hug Ella. She tries to be as gentle as she can but we still have to watch her every move. A nice touch quickly turns into an eye poke around here! Madi does get a little jealous when I am nursing Ella and my lap isn't all hers anymore but she is already adjusting to that as well. My parents are staying with us for 3 weeks and have been a huge help! Madi is getting very spoiled with all the attention and is having a great time with Nonna and Papa.

Here are a few pictures from the past week.

Ella meets Mila (my best friend's daughter born on 9/23...Ella is on the right)

Loves giving her sister kisses

Catching Up

2010-08-02T14:15:00.001-07:00

I am way behind on blogging these days. I often have things that I want to write about but by the end of the day (when I actually get time to sit in front of the computer) I am way too tired to blog. Life is great here in the Kang house. We are enjoying summer and all that it entails...walks, playing outside, swimming, bbq's, picnics, the farmers market, and spending time with neighbors and friends! We are definitely busy but I wouldn't have it any other way. We have added water therapy to Madi's list of appointments and she absolutely loves it. She is definitely our little fish!

I am now a full time stay at home mom. After Madi was born I went back to work (pharmaceutical sales) part-time. It was a good balance for me and I didn't mind working 2.5 days per week. Ever since Madi's heart surgery she has struggled with separation anxiety. She is so social as long as mom or dad are in sight. So I knew it was good for Madi to get used to being away from mom a little bit. We have an awesome nanny that came to our house on the days that I went to work and Madi LOVES her...it only took a month or so of crying to get there! In the beginning on June, the pharmaceutical company I was working for had their first lay-off (something that is super common in the industry). They laid off over 30% of the company and I was one of those to go. They actually laid off 70% of my district here in Seattle...it was crazy. As weird as this may sound...I wasn't too bummed to be let go. It was perfect timing for me as we are getting ready to add another little one to our family next month. So, I am home and loving all the extra time I get to spend with Madi before her sister arrives. It is also allowing me to add more therapy and playgroups into our already busy schedule.

We spent the last week of June on a cruise to Alaska. We went with my parents, brother and his family, my uncle and aunt, and some close family friends. We had a great time together and the cruise was absolutely beautiful. We went to Glacier Bay, Sitka, Juneau, Ketchikan and Victoria B.C. Madi did really well on the ship. She is a very busy girl so it was a little tough as there wasn't a lot of space for her to freely crawl around. We enjoyed all of the port towns we stopped in and spent most of the time walking around and enjoying the scenery. Glacier Bay was amazing. The water was so clear and the glaciers were enormous. We saw tons of whales, seals, sea otters, bald eagles, and dolphins. It was definitely a relaxing trip...something that was much needed.

Madi and I also made a quick trip down to Sacramento to visit my family. We had a great time as usual and Madi enjoyed spending time with her Nonna and Papa. By the end of the week she was waking up every morning asking for her Papa...my dad loved it!! We also were able to meet up with local DS group of babies and moms (The Sisterhood) that we always see when we are in town. We even got to meet Sofia! For those of you that remember, Sofia was an orphan with Down Syndrome living in Ukraine. She is now home with her awesome family...and she is sweet as can be! I absolutely love getting together with this group of moms and genetically enhanced kids. I know we will stay close with them through the years and watch our kids grow together! I just wish we lived closer to them so we could see them all more than a few times per year.

I am now in my 33rd week of pregnancy and still feeling good. I am definitely tired at the end of the day and the baby seems to enjoy squirming around once Madi is in bed and no longer climbing up my belly. She literally tries to climb my baby bump when I am holding her...she thinks it is the perfect step for her to get a little higher in the air. It is definitely getting a little harder to carry Madi and chase her all over the house. The is keeping me busy!!!

Here are a few photos from our cruise to Alaska

Celebrating my brother's birthday at a bar in Sitka

A shot of one of the glaciers

Relaxing on the deck

Orthotics

2010-06-22T20:37:00.000-07:00

Here are Madi's Jump Start orthotics and shoes that her PT recommended she wear while working on standing. I am not the best at using these but we do try to put her in them each day for a bit while she is standing. The shoes are pretty heavy and solid so she has a hard time pulling to stand in these. She does have quite a bit of pronation in her feet when she is standing so the orthotics help to properly stabilize her ankles. When she is barefoot, she is now pulling to stand on EVERYTHING and (dare I say it) starting the beginning stages of cruising while holding on to the furniture. This is a big step for her as until recently, it seemes that Madi thought her feet were cinder blocks that were not to be moved. So, we finally have some progress. I was originally hoping that Madi would be walking when the baby is born (in September) but given how BUSY this girl is that may not be such a good thing! :) It's all on her time and I am totally fine with that! Until then, we will keep working on getting stronger and enjoying every minute of this sweet girl!

Showing me how big she is

Baby Signing Times

2010-06-22T20:25:00.000-07:00

Baby Signing Times has a new fan. We are working on teaching her that she doesn't need to sit so close to the TV to learn all of the signs.

No matter how far away she starts out, she always ends up right there...silly Madi! She is not much of a tv watcher in general but she absolutely loves Baby Signing Times. I love watching her sign with the video. She (and I) have actually learned quite a bit from these videos. Madi is now consistently signing at least 25 different signs. Her signing has taken off over the past few months and she seems to be learning a few new signs a week. Signing has definitely been giving her a way to tell me when she wants something and has cut down on the frustration on both our parts. She is using more and more signs without me prompting her. She gets so proud of herself when she randomly signs drink and, voila...mom presents her with a straw cup full of water. Way to go Madi...keep up the good work but try not to strain your neck so much!

Madi's Heart Day

2010-05-23T21:20:00.000-07:00

May 21st was Madi's Heart Day...1 whole year post surgery!! The morning was actually a little emoitonal for me as I spent some time reading old blog posts and looking at pictures from our hospital stay. I am still amazed at how incredibly well she has done this past year especially given the complications that arose.

I remember waking Madi up very early that morning for our 5am check in time. We loaded her in the car and she of course was all smiles the whole way there. My stomach was in complete knots but I was trying to stay as calm and relaxed as possible. We waited in pre-op for a while and met a ton of people from the surgical team...anesthesiologists, ICU personnel, the team of surgical nurses, etc. Finally it was time for the dreaded moment. We left the ICU room and headed down the long hallway to the surgical area. We hit the double doors where we had to say our goodbyes. I tried so hard not to cry in hopes that I wouldn't worry my happy girl. We handed her to one of the nurses and watched as they walked back to the OR. They had to turn a corner before they were out of sight...I will never forget what happened next. As they turned the corner, Madi popped her head up over the nurses shoulder for one last glimpse of her teary eyed parents and just like that they were gone. My heart literally fell into my stomach and I lost all composure. We made our way down to the waiting room and there we sat for hours...literally 6 hours! The surgery was supposed to take 2 hours but ended up taking 6. A nurse called my cellphone every hour with an update...all she would say is he is still working and she is doing fine. That was the longest 6 hours of my life! We read magazines, played cards and games, told stories, looked outside...anything to keep our mind off of what was going on. Finally it was over and we met with the surgeon to explain how everything went. He said that it took a lot longer because of some unknown complications. It was the most difficult AV Canal he had ever seen. She was doing well and it appeared that the surgery was a success. He said there was a chance that she may need another surgery in the next few days...only time would tell and the first 48 hours were the most critical. We had to wait for a bit while they got her situated and stable in the ICU before we could see her. I remember walking into her ICU room...it was so overwhelming. It was like something out of a movie. There were at least 10 people in there, machines everywhere, alarms sounding, orders being called out, IV's being hooked and un-hooked, and a sweet little girl laying peacefully in the middle of so much comotion. It was very hard to see her intubated and totally sedated. The days that followed absolutely blew my mind. Each day tubes and wires were being removed and she became more and more alert. She showed us what an amazing fighter she is.

We spent a total of 10 days in the hospital. Her lungs had a hard time coming around and her valves were still leaking a bit. After being home for 4 days were back in the hospital with a staph infection in the incision site. The surgeon had to reopen the top of her scar (all the way down to her sternum) and let it heal from the inside out. She was placed on IV antibiotics for a few days and once her white bllod count returned to normal we were released to go home. Dave and I had to pack the wound with gauze and change it twice a day until it healed ( a few weeks). It was awful! I literally didn't lok at it for a week until I finally got the courage. The truth is, Dave wasn't home one night and the dressing needed to be changed so mom had to toughen up.

It was quite the journey for us and we are so grateful for such an amazing outcome. We had a few setbacks along the way but 1 year later our girl is THRIVING!! Prayers were answered and a family grew stronger! We don't know what the future holds for Madi in terms of more surgeries. There is still is a chance that she will need another repair down the road but for now, everything looks great. We are holding on to that and just enjoying every day with our Miracle Madi!

Happy Heart Day Madi! Of course we had to celebrate with a Heart Party this year. It looked like Cupid made an appearance at our house. I didn't get many pictures of the evening but we had heart decorations, a heart cake, and some close friends to help us celebrate Madi's big day. Here are a few pics from last year and this year. WOW...what a difference a year makes!

No words.

2010-05-20T22:20:00.000-07:00

There are no words. Not even one...to try and explain how lucky I feel...how blessed Jenn and I are. Madi muscled her way through a tremendously difficult day a full year ago. I am still frightened out of my mind when I recall what that experience was like...the event was clearly necessary, but scary nonetheless. Now, I think back to the tears, the blank stares, the dreadful passing of time; I recall holding my tiny daughter's even tinier hand while she was in the PICU with chest tubes, IVs, and a large assortment of monitoring equipment that I am still unfamiliar with (and, I wouldn't mind never being acquainted with that environment again)...the memories still bring back tears - tears of fear AND tears of joy. Yes, I am babbling. Partly recalling memories that I have subconsciously repressed and also finding joy that I AM remembering a day that brought a new and profound sense of appreciation for life...not just "life" in general, but the most important kind...my daughter's life. For those families that have yet to put this type of day in their "rear view mirror," there is no way to sugar coat this experience...I will be the first to tell you that this is the most difficult thing that you will experience. However, take solace in the fact that we were also a family on pins and needles-a regular family just like yours. Worried. Emotional. Had nothing to hold onto but each other and a fistful of prayers. We got through the day. The first year. And, our beautiful Madi is thriving. Our prayers are with you as well...wherever you are and whoever you are.

Sweet Little Madi,

I love you. I love you, I love you, I love you. How infinitely wonderful that I get to raise you and spend time with you. Watch you learn, grow, throw fits, laugh, smile, wave, hug me, kiss me, pat my back when I hold you and pat your back, make faces at me, light up when you see your beautiful mommy. Daddy is the luckiest daddy in the world...really. I am looking forward to all the years I get to spend with you and watch you grow, laugh, and live. Give thanks everyday because I always give thanks for you.

Love,
Daddy

A Year Ago...

2010-05-20T16:34:00.000-07:00

A year ago today marked the beginning to the most difficult day of our lives. I remember the day so clearly...we were preparing for our daughter's open heart surgery that would be taking place the next morning. How does a parent prepare for that? I remember trying to only think positively but of course the "what ifs" managed to sneak their way into my thoughts. I kept reading and re-reading the packets of information the surgeon gave us. We tried our hardest to act like this was an ordinary day as we packed our hospital bags and tried to think of the most comforting toys to bring for our sweet 6 month old. I was dreading the moment we would have to let go of her and hand her over to the medical team that was going to give her a second chance at life. I remember staring at her chest after her bath that night, knowing that it would never look the same. I soaked up every inch of her beautiful, perfect and pure skin. I of course took a million pictures of her bare chest wanting to record exactly how it looked. I knew that this surgery was necessary. Without it, her life expectancy would only be into her teenage years if that. Still, knowing that didn't seem to be making this night any easier. We had been waiting so long for the day to come. We had known about her heart defect since she was 2 days old and was told that surgery was necessary. There was some relief in knowing that finally we could put this dreaded day behind us and move on. I couldn't wait for the time when we didn't have to worry about blue lips, oxygen sats, weight gain or heart failure.

I knew we had so much support behind us and that meant the world to me. My parents were in town, we had visitors bringing over blankets, meals, hospital survival kits, toys for Madison, magazines, games...anything and everything to help us get through the next few weeks. It was so amazing to feel the love and generosity that was pouring all over our family. Dave and I quietly escaped for a little bit and just sat on our bed and cried...and I mean cried. We talked about our fears, how helpless we felt and how we wished we could switch places with our sweet girl. It was such an amazing moment filled with so much love and honesty. I remember thinking that our little girl was peacefuly asleep for the night and had absolutely no idea what was about to happen to her. I knew our girl was a fighter and that her strength and resilience would get her mama through. I had no idea how profound the impact would be on us. Watching her fight was amazing and I fell deeper in love with my sweet girl...something I didn't know was possible!

20100423-_KSB5385.jpg

2010-05-20T16:30:00.001-07:00

Click here to view these pictures larger

It's A???????????????????

2010-05-01T20:54:00.000-07:00

I have been so horrible about keeping up to date on our blog recently. I am seriously going to try and be a better blogger these days. I have also not been the best at taking pictures recently. I seem to forget my camera all the time. It is my goal to work on both of these things...hold me to it! :)

I do want to let everyone know that we just found out what Baby #2 is. It's a .........................GIRL!!!!

We are so excited for Madi to have a little sister. It is also very convenient since we have an enormous amount of pink around the house. Everything looked great on the ultrasound. Although her heart looks perfect so far, we are going to have a fetal echo done in a few weeks just to get an even better look.

Madi is doing fantastic! She is full of personality and makes us laugh every day. We are having so much fun with her. I love watching her explore and learn new things each day. She has completely mastered army crawling and is super fast at it. I can guarantee you it would be much easier on her if she would just get up on her hands and knees to crawl...but she still refuses. She has started pulling herself up to stand and is quite proud of herself these days. Her new favorite game is "where is Madi's...(fill in the body part). She points to her eyes, ears, nose, mouth, feet, hands and hair. She loves to say "Hi" with a southern accent (it is too cute) and wave to EVERYONE. She has 12 teeth and has begun to use them on things other than food...usually my shoulder! She has started feeding herself with a spoon recently and is still working on her manners with that. She has decided that just putting her hands in the bowl of food and playing with it is way more fun than using a spoon. We are still dealing with the throwing phase so her spoonful of food usually ends up on the floor a few times. Having a dog has really come in handy for cleaning up.

I will try and post some pictures soon from our recent trip to Mexico. It is time for mama to get some rest!

Madi's BIG News!!!

2010-03-07T13:34:00.001-08:00

Yep...Madi is going to be a big sister!!!! I am just about 12 weeks along and am starting to feel better each day...I am definitely ready to be out of the first trimester. Being pregnant with a busy little toddler around is a whole new ball game. We are very excited and can't wait for Madi to have a little sibling in September. We know she will make a great big sister. They will be 23 months apart and I know they will have so much fun together. We are going to be in for it! :) I am excited to finally share the news with everyone.

Love This Video

2010-02-24T12:09:00.000-08:00

Saving Sofia

2010-02-21T19:48:00.001-08:00

This beautiful little girl is an orphan with Down syndrome living in Eastern Europe. She turned one today and we all prayed that someone in the orphanage showered her with love. The greatest gift that anyone could give this little girl is the gift of a forever family...and she is getting just that!!! My friend Jennifer (at Three's A Charm ) and her family are adopting Sofia. The Sanchez family has 3 adorable boys and their youngest, Joaquin, has that special extra chromosome. This family truly knows the joy and love of raising a child with Down syndrome. Jennifer and Joaquin were the first family that Dave and I met after Madi was born. Joaquin absolutely stole my heart and Jennifer has been such an inspiration. I found so much comfort in meeting her and seeing what a happy and normal life they led. Although they live in Sacramento, we always get together when we are back home visiting my family. Sofia is joining an amazing family and I only pray that they can get her home soon.

The international adoption process is not easy and costs a pretty penny. Please check out the blog dedicated to Saving Sofia and read about the many ways that you can donate to help bring this beautiful girl home. For those of you local in the Sacramento area, there is a Crab Feed and Auction being held on March 19th in Rocklin. Please feel free to contact me if you have any questions or need more info. We are so excited for the Sanchez family to add a little pink in their lives and Madi can't wait to meet her new friend!!!

Madi at 15 Months

2010-01-25T19:39:00.000-08:00

So finally we are back with an update. I obviously took a little break from blogging but am planning on making a better effort to keep everyone updated.

I can't believe it but Madi is almost 15 months...time sure does fly! She continues to amaze us everyday. She really is learning new things almost daily and it blows our mind to watch all that she is accomplishing. She is definitely a toddler now and has recently started throwing little fits and expressing her opinion more (and it is not always in the sweetest ways). Don't get me wrong...she is still a sweet, happy girl but she is not afraid to yell at I mean tell you when she doesn't like something. She is very into imitating now and will imitate noises, faces, motions that we make. She literally makes me laugh all day long! She has mastered the commando crawl and is into EVERYTHING! She is soooooo busy. She still hates to be on her hands and knees and quite honestly I am fine with that because we are going to be in for it when she is truly mobile. She is already getting pretty fast at the army crawl...it must be the Army Ranger blood in her.

She has really been picking up on signing. She now consistently signs: mommy, daddy, dog, eat, please and more. She is also a great eater and loves to eat whatever we are having. Some of her favorites right now are: blueberries, strawberries, oranges, avocado, oikos greek yogurt, quinoa, veggie booty, chunks of bread and multigrain pancakes, and cheese. Just in the past few days I have started letting her try to feed herself with a spoon. She has done pretty good so far...she brings the spoon right into her mouth but then leaves it in her mouth. It is pretty cute. She holds her own straw cup and when she is through she places it back on her tray. She used to just toss it when she was done. Oh and speaking of tossing...she loves to throw her food. Ollie the beagle is her new best friend whenever she is in her highchair! She has also recently started spitting chunks of food out only to pick them back up and eat them...hence the toddler phase I referred to earlier. I am trying to teach her that it isn't very ladylike to spit food out and re-eat it but she really can care less.

This little girl is growing, thriving and melting our hearts each day. We just love watching her learn new things and master new skills. She is staying healthy minus the recent sinus and ear infection. Madi is also on her last year of getting Synagis shots (prevents RSV). They recommend that kids with heart or lung conditions get these shots once a month during the RSV season for the first 2 years of life. It is a big shot and Madi is definitely not a fan! We also got the results of her blood panel we had done and found out that Madi has hypothyroidism. So, we go to see an endocrinologist next week to see what the next step is. Her pediatrician doesn't think it is a huge deal yet as she is not symptomatic. I know it is very common in kids and adults with down syndrome and I truly am not too worried about it just curious to see what the endocrinologist says. I will keep you all posted. Here are Madi's stats from her 15 month checkup:

weight - 18lbs 10oz
height - 29 inches

I hope all of you are doing well and enjoying the new year. We are staying very busy around here but I will try my best to be a better blogger! :)
Of course we need a few pictures from the past few months!

Happy girl on Christmas morning

Madi and cousin Mia already learning about Nordstrom...yikes!

Funny Christmas hat

Teething Monster and Updates

2009-12-07T22:45:00.000-08:00

Madi has been a teething monster lately. She has 4 teeth now and is working on numbers 5 and 6. She has had the front 4 (2 on top and 2 on bottom) for a few months now but last week I noticed that she was a little fussy and drooling like a champ. I tilted her back and looked around and noticed that she is getting her 1 year molars...ouch. She is handling it pretty well but you can tell it is not the most comfortable thing. She also had double ear infections (her first ear infection ever) at the same time...poor baby. We had a few rough nights (one with a 103 fever) but she is much better now.

We have had a busy few weeks. We had a great Thanksgiving with some good friends (the Garces family) and then headed up to Whistler, Canada for the weekend. After living in Seattle for 10 years I finally made it up to Whistler (only about a 5 hour drive). Madi and I had a great time shopping and strolling through the village while Dave went skiing. This was Madi's first real time in the snow and she seemd to enjoy every minute of it. We got quite a bit of snow here last winter but she was too little to enjoy it.

We spent the next weekend at the Alderbrook resort on the Hood Canal. The resort is beautiful and the weather was cold but sunny and clear! We relaxed on Friday evening, hiked on Saturday morning and then went to my work Christmas party on Saturday night. Madi had a great time and was an easy traveler as usual! Santa made an appearance and gave the kids presents. Madi stared in awe and waved to Santa but when it came time to sit on his lap she wanted nothing to do with him. We finished up the weekend at the Shilter Farm in Olympia where we cut down our Christmas tree. We had a great time and found the perfect Noble Fir. It was a beautiful, sunny day but it was freezing (literally the high was around 28) so we were all bundled up and Madi was in her full snowsuit! She had a great time even in the cold.

This past week Madi and I spent some time with a few of my friends I played soccer with in college. There are a few of us that try and get together every few months for dinner. This time we got to meet baby Cole (Heather's new little guy). He is such a sweet and easy baby...we had a lot of fun. Of course it was also great to see Nichole, Beth and Kai'o as well. Madi also got her frist Synagis shot on Friday. Synagis is a shot that helps prevent RSV (a horrible respiratory virus). Kids that have heart and/or lung conditions are all at a higher risk of having major complications if they get RSV. So, we will be going to the infusion clinic once a month through probably April to get the shot.

Other than that we are busy preparing for Christmas and are definitely enjoying "the most wonderful time of the year"! :) We will be heading down to Sacramento to spend Cristmas with all of my family. I am so excited!!! I willl post some pictures from the past few weeks tomorrow. It is time for bed. :)

Madi in Action

2009-12-01T21:33:00.001-08:00

I think it is always so fun to see kids in action. So, here are a few videos from the past few weeks of Madi in action. One is of her playing with her favorite game and the other one is of her showing off some new tricks she has mastered over the past month or so. She has definitely developed her own goofy personality. She is a very social little girl and loves to make people laugh. There are times when we are out in public and I notice that Madi is doing everything in the book to get the attention of a stranger sitting next to us. Most of the time people respond but a few times they simply didn't notice her and she was literally forcing out some loud giggles/coughing noise to get them to notice her. We think she is pretty funny!

Make video montages at www.OneTrueMedia.com

6 Months Ago

2009-11-22T21:07:00.000-08:00

6 months ago yesterday Madi underwent open heart surgery. It literally was the worst day of my life. I can still remember the sheer fear, pain, anxiety, sadness and hope I felt as I watched the OR nurse take Madi down the hall to the operating room. I carried Madi all the way until we hit the double doors and that was where we had to say our goodbyes. I remember thinking that she has no idea what is about to hit her...and thank God for that! The wait was the longest 6 hours of my life. Unknown complications arose and all we could do was pray...pray for God to be with her surgeon as he did his work. 6 months ago Madi's heart was repaired and she was given a second chance at life. During that time I felt as though my heart was being stretched and was becoming more full of love for her...more than I thought was possible. Watching her fight for her life absolutely blew me away and gave me the strength and courage that I know I will need to continue to always stand up and fight for her.

We came away from this experience with so much more strength, love, faith, patience and humility. Madi continues to amaze us! 6 months later she is doing awesome. Sure her heart is not perfect but right now the doctors are all very pleased with the outcome. I am so thankful for the care, love and prayers we all received. The world of congenital heart defects is not one that I ever wanted to be a part of. I can only feel blessed for our postivie outcome and all that we gained through this experience.

Our 1 Year Old

2009-11-12T11:01:00.000-08:00

So I am finally getting around to posting about Madi's first birthday party. We had a great time and miss social butterfly didn't skip a beat. She enjoyed every minute of her party and loved being the center of attention. I think we have a little princess in the making...yikes! :) Before the party started we did a traditional Korean 1st birthday celebration with family. Madi was dressed in a traditional Korean dress that Dave's dad bought for her in Korea after she was born. We took lots of pictures of her in front of food. I'm not sure of the signifcance of the food but that is the tradition. We then placed 4 objects in front of Madi (string, money, a pencil and paper) and waited to see what object she grabbed first. Each object symbolizes something. Madi first grabbed the string which means she will live a long life...after the year she has had that is awesome! She quickly then grabbed the $20 bill in front of her which means she will be rich. The best part was when she picked up the pencil (which means you will be a scholar), she looked at it and very deliberately threw it on the ground... Madi, I think you made your point!

We want to hank everyone who was there to celebrate her big day with us. I know many of you celebrated with us in spirit and we want to thank you as well. Your love and support for our family and especially Madi is such a blessing and we appreciate each and every one of you.

On her birthday Madi had an appt with the cardiologist to follow up on her leaky valves. We have GREAT news! The leak has gotten much better and the function of her heart looks great! They want to check her out in 3 months again but for now she looks fabulous...yay Madi! Madi also recently had her 1 year check up. She is a healthy, happy little girl that is catching up on the growth chart. She wighed in at 17lbs7oz, and is 28.5 inches long. That is 50th percentile for weight and 95th for height on the down syndrome growth chart. She has mastered eating finger foods, is drinking regular milk without a problem, and loves to drink water from her straw cup. We are so happy that she is a healthy, happy, growing baby...what more can you ask for. Here are some pictures from her party:

Happy Halloween

2009-11-01T21:18:00.000-08:00

Madi had a blast on her first official Halloween. Last year she was 2 days old and spent her Halloween relaxing under the warmer in the NICU at St Joe's Hospital. This year Madi went to Athan's 2nd birthday costume party and then went "trick-or-treating" at Proctor Treats. All of the little shops in Proctor open for trick-or-treating, so we took Madi out and strolled around looking at all of the costumes. I was shocked to see how many people there were trick-or-treating in our little neighborhood...literally there were thousands. It was a lot of fun and our little ladybug was pretty cute I must say. Here are some pictures from the day:

Happy 1st Birthday!

2009-10-29T21:24:00.000-07:00

Happy Birthday my sweet Madi. A year ago you made a dramatic entrance into our lives and you have blessed us more than we could have imagined. You were full of surprises and we were very unsure of what the future held for us. Although we were scared at first, you have shown us that everything is just fine. You bring peace to our sometimes crazy world and comfort to our hearts. You are such a joy and you have impacted so many people in your short year of life. You have opened our eyes to a world we didn't know much about but are eager to learn more each day. You have brought Daddy and I closer together and strengthened our love and marriage. You have taught us what it means to be strong and continue to fight. You have shown us how to truly smile from the joy deep within your soul. You have strengthened our faith. You have given us purpose and make us want to be better at all that we do. Thank you for the enormous impact you have had on us...and we are supposed to be the ones teaching you! :)
It is kind of crazy...I can't believe that you are already a year old but at the same time I feel like I have known you forever. I can't imagine life without you in it! You are our world, our inspiration and our dream come true. It is my promise to you that we will do everything in our power to support you, protect you, fight for you, and give you all you need to succeed. You are amazing! You will continue to defy the odds and exceed our expectations. It is my goal to make sure you always know that there are no limits...you can achieve what you put your mind to...you will do it all at your own pace. We love you Madi Lou...more than you know. Thank you for being you!

A few hours old

A few days old

A few days ago

Pumpkin Patch

2009-10-28T19:06:00.000-07:00

Last Sunday we took Madi on her first trip to the pumpkin patch. It rained quite a bit the day before but the weather stayed dry for us. The ground was still pretty wet out so we didn't get too many photos in the patch. Madi would have had a field day in the mud I'm sure. It was so much fun and I loved watching her observe everything going on and laughing in delight as we walked around searching for her perfect pumpkin. She really had a good time and managed to clap, smile and talk to everyone around us. Here are some pictures from our little adventure:

Down Syndrome Awareness Month

2009-10-23T22:19:00.000-07:00

October is Down Syndrome Awareness month and although I waited until the end of the month, I definitely want to write a post. For those of you reading our blog who do not have a child/family member with down syndrome I want to take this opportunity to provide some info on down syndrome. Before Madi blessed our lives I really did not know anything about down syndrome except for the few encouters I had with people who have down syndrome. When Madi was 2 days old and the Dr's told us they suspected that Madi may have down syndrome I was so scared and literally felt like the world was crashing down on me. I was in shock and prayed with all my heart that they were wrong and the blod test would come back normal. It took a little while but we soon realized that Madi is perfect and exactly who she is supposed to be. She is not a chromosomal mistake but in fact a perfect creation and we are so blessed that God entrusted her to us. Here are some facts on down syndrome for those of you who would like to learn a little bit more:

Down syndrome (also known as trisomy 21) occurs when individuals have 3 copies of the 21st chromosome. Typically people have 46 chromosomes (2 copies of all 23 chromosomes). People with down syndrome have 47 chromosomes. This happens at conception and is not a result of parents' activities during or before pregnancy.
There are more than 400,000 people living with Down syndrome in the United States and it occurs in people of all races and economic levels.

The incidence of births of children with Down syndrome increases with the age of the mother. But due to higher fertility rates in younger women, 80 percent of children with Down syndrome are born to women under 35 years of age.

People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer's disease, childhood leukemia, and thyroid conditions. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives.

A few of the common physical traits of Down syndrome are low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm. Every person with Down syndrome is a unique individual and may possess these characteristics to different degrees or not at all.

People with Down syndrome attend school, work, participate in decisions that affect them, and contribute to society in many wonderful ways

All people with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses.

Please know that Dave and I are always open to talk about Down Syndrome and our experiences with Madi. We have learned so much in the past year and have met so many amazing people who have helped us in our journey. We hope that we can give back and educate the world on how special it is to have an extra chromosome.

Please take a look at this video from the National Down Syndrome Congress. I had to share...it's awesome!

Happy Girl

2009-10-18T20:36:00.001-07:00

We are back from Hawaii and I will be sure to post all about our trip (with pics) very soon. We had an amazing time and Madi was great. She was completely off of her schedule but was still very easy to travel with and truly was a trooper the whole time.

Over the last few weeks Madi has been perfecting clapping. She immediately starts clapping as soon as we start singing her new favorite song "If your happy and you know it clap your hands". I caught it on video tonight and had to share...I think she is hilarious. The best part was after I shot the video. I was showing the footage to Dave on the camera and Madi heard me singing on the video and started clapping and laughing. It was too cute! More updates soon.

Please excuse my wonderful singing! :)

i did it!

2009-10-05T20:01:00.000-07:00

My friend Jennifer from the blog Three's A Charm has created an amazing "i did it" campaign in honor of her son (and Madi's buddy) Joaquin. She created these " i did it" tees and is selling them for $21 in honor of Trisomy 21 (down syndrome). For every tee purchased she purchases a copy of the book Gifts 2, signs it with the name of the child who it was purchased for, and donates it to a local hospital, pediatrician office or genetic counselor in Sacramento. How cool is that! You can read more about the campaign on her blog Three's A Charm. The book Gifts 2 is an amazing compilation of short stories written by parents, grandparents, etc that share personal stories of how people with Down Syndrome enrich the world and Jennifer is a contributing author.

So, Madi has her i did it tee and I finally took some pics of her. We are so proud of her and all that she has accomplished. Having a child with down syndrome really has opened our eyes and made us truly appreciate all of the small victories in life! She is such a blessing and has introduced us to a community that we never knew we wanted to be a part of but are now so grateful that we are. Madi is now 11 months old and has done so much in that time! In honor of the "i did it" campaign, here are some of Madi's i did it's:

Made it through and quickly recovered from open heart surgery and a staph infection
Learned to roll very early and now rolls all over the house
Sits up all on her own
Has learned to drink from a straw
Feeds herself
Has learned the pincer grasp and uses it to carefully pick up her blueberries, cheerios, etc (her determination is so cute!)
Gives kisses
Is starting to wave
Has done the sign for Mommy a few times (I think she is getting it!)
Plays peekaboo
Puts her arms in the air when you ask her "how big is Madi"
Says dada, baba, lala, has said mama a few times...I'm obviously pushing for that one
Has mastered the prone position and is now working on getting up on her knees
Pivots in circles while on her tummy and is trying to scoot/crawl to get places
Is the perfect yoga student and is more flexible than you can even imagine
Manages to steal the attention and hearts of everyone she meets...she is quite the social butterfly!

We can't wait to watch her grow and develop and see all the "i did it's" she has in her future. I know she will accomplish all that she puts her mind to...she is an amazing little girl! Thanks Jennifer for this awesome campaign and giving us all a way to show the world that together we can do it!

A Little Behind

2009-09-29T21:16:00.001-07:00

We have been a little behind on updates these last few weeks. We have had our fair share of illnesses make their way through our house...and it is only September! Hopefully we are done for the year. All three of us got the stomach flu a few weeks ago...starting with Madi, then me, then Dave. Thankfully Madi didn't seem to get it as bad as Dave and I (or maybe she is that much tougher than we are). I honestly don't think I have ever been so sick in my life...it was awful. We did all get it at separate times so we were able to rotate taking care of Madi. Once we all recovered from that I then got a sore throat/sinus infection that is just hanging around. I can't seem to kick it. I finally got some antibiotics after a week of suffering and am now starting to feel better. I have no idea what is going on...I am not usually one to be constantly sick. Oh well, such is life. Of course I am completely freaked out that Madi is going to get a cold which can easily cause more respiratory issues and trips to the ER again...but she has been doing well so far. It is pretty ironic that I am back to telling all of our friends and family how careful we need to be with Miss Madi during the flu season while Purelling their hands before they touch her...and I am the one who is sick! Ha! So the past few weeks have been fairly uneventful in our house. We did venture out to Sierra and Jason's engagement party last weekend. We are so excited for them and looking forward to the wedding in Mexico next April!! We also made it to Beth's 30th birthday party for a little while as well.

We are looking forward to participating in our first Buddy Walk in Seattle this Sunday. The Buddy Walk was started to promote community awareness and acceptance of people with Down Syndrome. There are going to be more than 280 walks taking place all across the nation this year. We have quite a few friends and family that will be joining us in "Walking With Madi"! If you are in the area...please let me know if you would like to join us...it is going to be a lot of fun! Of course I have to add a few pics of our sweet girl!

Starting her early

Oops...did I push the wrong key?

Madi and Ollie working on tummy time

Daddy's Mini-Me

We love football season...Go Seahawks!

Wordless Wednesday

2009-09-09T14:32:00.000-07:00

Cowgirl!

2009-09-05T10:06:00.001-07:00

Roadtrip to Montana!

2009-09-04T09:36:00.000-07:00

Here we are in Great Falls Montana preparing for the Francisco-Kangas wedding. We decided to drive and turn this into a fun family road trip. Madi truly is an easy baby and great traveler so we figured it wouldn't be too bad. It's about a 10 hour drive to Great Falls and we have done one road trip with Madi to Sacramento when she was about 3 months old. Dave decided he had enough energy to start the drive so we left at about midnight on Wednesday. Madi literally slept the first 6 hours straight and woke up around 6:30 to eat (like I said she is a dream baby). We stopped at a rest stop and fed her and she immediately vomited all over me. Not too uncommon since she has reflux, but it has been well managed for a long time and we have had no problems. So we got all cleaned up, changed our clothes and hit the road again. She fell right back asleep for about another hour and then we decided to stop for breakfast in Missoula. When she woke up she puked again...hmm. As soon as she was done she was a happy little girl and acting like her normal sweet self. We then noticed that Dave's front tire of the truck was only half full. We had the truck serviced the day before we left so we figured it must have a leak. We decided it would be best to have it checked out at Less Schwab. They couldn't find a leak and figured the coil in the valve must have been stuck when they checked the pressure which caused a slow leak. So a quick stop for breakfast turned into a 3 hour delay in our trip. No big deal...better to be safe than sorry! We only had about 2 hours left in our trip but poor Madi had a rough time. We had to stop about 3 more times as Madi continued to vomit. I have come to the conclusion that she was car sick. As soon as she would get out of her car seat for a bit and get some fresh air she was fine. She has never had car issues before so I am not sure what was going on. We did decide to take Dave's truck which is an extremely bumpy ride. For those of you who have not seen the truck it is a F350, diesel, super duty, monster of a thing...a little too beastly and bumpy for our little princess! :) We are going to take our time going home and stay overnight in Spokane, so hopefully Madi will have an easier time. Needless to say, we may have to hold off on long trips in the truck for a little while! The truck does fit in quite well here in Montana.

We finally made it here and everything has been great ever since. Dave bought some sweet Wal-Mart style cowboy gear (pics will come soon) to wear around town and to the country themed rehearsal dinner tonight. Last night we went to a bar called the Sip-N-Dip. It is a dive bar that is attached to a hotel. The hotel swimming pool has a glass wall that it shares with the bar. At night the pool is closed and there is a girl dressed up as a mermaid that swims by the window for tips. It is hilarious and so weird all at the same time! There will be more to come of our adventures later!

Cardiology Update

2009-08-27T22:32:00.000-07:00

Madi had a follow-up appointment with her cardiologist today. Here is a quick review to catch everyone up on Madi and the status of her heart:

Madi had open heart surgery on May 21st to repair a complete AV Canal defect. The surgery was much more complicated than they thought but they were able to repair her defect. Lots of prayers, some miracle working by Dr Woods, and a tough fighter for a daughter got us through! A few days after surgery the valves began to slightly leak (no big deal...this is common). They were only SLIGHTLY leaking so we were told they would just monitor the situation and there was a good chance that she would never need surgery again as long as there was not an increase in the leaking. She has had quite a few echo's done in the past 3 months and all looks great...until today! Today we received some good news and some bad (well, we'll just say not so good) news. The valve on the left side (the most concerning side) is now actually leaking less. This is great news because the left side of the heart is the side that pumps blood to the body. We obviously want that fully functioning! :) Looking at her echo today, the leak on the right side has gotten a little worse and her heart is actually enlarged now...something that we have not seen. There is a slight VSD on the right side that has started to leak more. It could CLOSE ON IT'S OWN (I am putting that in caps because I truly believe in positive thinking) but if it doesn't they will need to go back in and repair it. The surgery would be less involved than the first time as they would only need to go into the right side but it would still be open heart surgery with the bypass machine, ventilator, and chest tubes...the works. Her Dr did say that if she does need to have surgery, they probably wouldn't do it for at least another 6 months.

So here we are again. I am not freaking out yet. Actually I think it is odd that I am staying somewhat calm about this. Maybe it's because we knew there was a chance this would happen. Maybe it's because we've been through it (and although it was the worst day of my life) we know what to expect. Maybe it's because we truly are helpless in this situation and can't do anything to influence the outcome either way. Maybe it's because I have seen what my little girl is capable of and I know she will make it through with a smile on her face. Who knows! The fact of the matter is I am on my hands and knees praying that it will CLOSE. I am hopeful that it will and until I hear differently, I am hanging on to that glimmer of hope. So, I am asking to once again start the prayer chains for Miss Madi. I truly appreciate the support and prayers that are sent our way. They have helped us get to this place today and they will help us get through to tomorrow. So we have a follow-up scheduled for 2 months and they will do another echo to see how the leak looks. The appointment is actually scheduled for October 29th...Madi's 1st birthday. Maybe that will bring us some luck! :)

Our Angel

2009-08-26T23:40:00.000-07:00

I am just so in love with this little girl!!! I feel so blessed that God trusted us to be the parents to such an amazing, "special" child. She has enriched our lives more than we could have imagined. The three of us have been through so much together already and we have come out stronger and more in love with one another. Thank you Madi for all that you have given us!!! We couldn't have asked for anything more.

Summer Fun

2009-08-22T21:30:00.000-07:00

Sorry to leave everybody hanging...Madi is doing much better! Her cardiologist bumped her lasix up to 3x a day and that did the trick. Within a few days she was breathing easier. I am so glad it didn't turn into a bigger issue. I have definitely learned that we still need to be germ freaks when it comes to Miss Madi. A typical cold to you and me is a lot worse for a heart baby with an underlying lung condition.

Madi now officially has 2 bottom teeth. They are both crooked and slant in opposite directions making an upside-down v! They are so cute...I will try and get a picture of them!

Madi has been a busy girl these past few weeks. She went swimming, took her first boat ride, floated on American Lake, went blackberry picking, and has gone on many walks and runs! We also went and spent the day with Aunt Sarah and cousin Mia. The girls actually play now and are constantly trying to poke, pull or suck on one another. Mia is scooting all over the place and Madi continues to steam roll across the room. It is pretty funny to watch them go. Madi did begin to "army crawl" a few days ago. It was very brief but she DID IT! I was not expecting it so it definitely surprised me. I swear this girl is going to scoot/crawl before she sits up on her own. I am so proud of her!

I do want to point out one thing that I absolutely LOVE about Madi that I often take for granted. She is such a cuddly little girl. When I pick her up she loves to just melt into me and literally wrap her arms around my neck and give me a huge hug. I know someday this may end so I am trying to make sure I appreciate every moment of it while I can. Oh how she melts my heart!!!Here are some pictures from a few weeks ago:

She is ready for the boat

Love the hair!
Madi with Aunty Amy

Floating on the lake

She LOVES the water

Trip To The ER

2009-08-16T21:20:00.000-07:00

Yes that is right...we spent yesterday in the ER with Miss Madi! She came down with her first cold last Monday and was getting much better as the week went on. She woke up Saturday morning and was having a hard time breathing...something that is not totally uncommon for Madi. She was diagnosed with chronic lung disease after her heart surgery (which sounds much worse than it really is) but it has been getting better with time. On Saturday I knew she was working really hard to breath and you could hear the fluid built up in her lungs. We took her to her pediatrician's office and they checked her oxygen sats which were reading 85%...yikes! They have never been that low and since surgery she has been around 98%. The Dr recommended we take her straight to the ER. They were concerned she may have pneumonia. The ER had a more accurate sat machine and there she was reading 87-93% which is better than we thought but still not great. That was definitely a relief! They did a chest xray and ruled out pneumonia but her lungs do look worse. They are enflamed and have more fluid in the space surrounding the tissue. They gave her some IV lasix and after talking to her cardiologist, decided they felt comfortable letting her go home. When she was released from the ER her diagnosis was pulmonary edema and heart failure. WHAT...heart failure?!?!?! The Dr explained that heart failure sounds horrible but really it just means that her heart is overworked and therefore not functioning to it's full capacity. I thought the fear of heart failure was behind us now that she has had surgery! So, we will most likely be visiting the cardiologist and possibly pulmonologist tomorrow. She seems to be breathing a little easier today but is still struglging and has quite a bit of fluid in her lungs. Of course, Madi is still her happy little self. Even as she is struglging to get a good breath, she continues to smile and laugh. She amazes me everyday and is so much tougher than I could ever be!

I am so grateful she is okay and was able to come home but honestly I am a little frustrated right now. Just as she seems to be making great strides forward, we have to take a few steps back. When will she just get to be a HEALTHY baby?!?! I thought these issues would be resolved after her heart surgery...which I guess was wishful thinking! She has already been through so much...it just doesn't seem fair. I know it could be much worse and I truly am grateful for the health and happiness that she does have. Of course this also has an effect on her development. We were making huge strides with her gross motor development and I have noticed a setback just in the past few days. I know I need to be patient and focus on her health but it is hard to see her take steps backwards. I am trying my best to stay positive and focus on the fact that she WILL hit all the milestones at her own pace. I just sometimes wonder where she would be if she didn't have to deal with hear defects and chronic lung disease! I will keep you posted on how she is doing over the next few days. Please keep her in your prayers!!!

I will also post some fun summer pics from the past few weeks very soon.

9 Months Old

2009-08-01T21:43:00.000-07:00

Madi is now 9 months old and is doing great! She just got her first tooth yesterday. I knew it was close to coming in for a little while now but it finally popped its way through. So far she has done great with teething. She woke up once last night and once a few nights ago but was easily consoled and put back to sleep. It was either due to teething or the record setting heat we have experienced here...yes 104 last week. Don't forget that we don't have AC so we camped out downstairs for a few nights. Our upstairs ws at least 90 degrees at 10pm!!!

So Madi had her 9 month check up and here are her amazing stats:
Weight - 15lbs 6oz
Height - 26.5 inches

She is still our little peanut but is steadily growing! She IS starting to put on weight and grow...amazing what having a fixed heart does! Now that she is all healed up we are focused on working on her gross motor development. We knew she would have some motor setbacks from surgery but she has done so much better than I expected. We are still working on sitting and she is getting pretty close. It is amazing to sit back and reflect on all that she has been through in her short 9 months of life. She continues to amaze us and steal our hearts every day. She has developed such a fun personality...she really is a goofball these days.

Here are a few of her favoite things:
- Oliver (our 5 year old Beagle). She cracks up when she sees him and does all she can to grab him.
- Playing peekaboo! She puts a blanket over her own head and pulls it off, then cracks up when you say Boo.
- Any sort of clicking, popping, smacking noise you make with your mouth. She laughs and stares intently trying to mimick the noise you are making.
-Showing off how big she is. When you say "How Big is Madi?" she will put her hands in the air and smile to show you just how big she is!
- Singing...she even loves Mommy's voice!
- Sophie the Giraffe. For those of you who have no idea what I am talking about...Sophie is a rubber giraffe that pretty much looks like a dog toy. It is the absolute best teething toy I have found and she loves it.
- Drinking water out of a glass although most of it gets spit/drooled right back out.
- Cellphones...if one is anywhere in reach she will grab it
- Water...she is a water baby!
We have spent the last few days trying to stay cool. Madi has gone swimming a few times and absolutely loves the water. We need to get her into a swimming class! I was talking to her physical therapist and they are thinking of putting together a water play group for his early intervention kids. It would be taught by a physical therapist so it would be fun and therapy all in one!

Of course I had to post a few pics of Madi. She is getting cuter by the day!!!

Finally...We're Back!

2009-07-18T22:39:00.000-07:00

It's been a while and quite a lot has happened in the past month. Madi took her first plane ride to Sacramento to visit family and friends over the 4th of July. Dave had to stay back and coach a baseball tournament so I decided to take Madi on her first plane ride...ALONE! One word describes Madi...awesome! She was amazingly perfect. She literally ate right when we got on the plane and then slept almost the entire way (both times). She woke up as we started our descent and put on a show for everyone with her babbles and giggles. Multiple people commented on how lucky I am to have such an easy baby...and they are right! We had a great time in Sacramento and enjoyed the Lichtenberger BBQ and firework show on the 4th. Madi and her cousin Mia also starred in the infamous "Govan Parade". For those of you who have no idea what I am talking about and never saw pics of Jason and I all decked out on the 4ht for the parade when we were kids, here is a brief explanation. There is a neighborhood parade every year on the 4th at the end of the block I grew up on. The kids decorate their bikes, strollers, skateboards, scooters, etc and race down the street and back while music plays and parents line the streets. It is amazing how many kids now participate. It was fun to have the girls together in their first parade. My brother and I were in the parade every year from age 5 to whenever we were too cool...who knows when that was! :)
It has been very hot here in the Northwest...I love it! We have been enjoying the summer and spending quite a bit of time outside. The running stroller is getting some good use these days. This morning Madi and I walked up to the farmer's market and got some peaches and butternut squash. I have been making Madi homemade baby food for a while now and she loves it. So far she has tried and loved: avocado, peaches, sweet potatoes, mango and squash. It is so easy to make her food and since we only feed her organic it makes it more affordable...gotta love that. Not to mention it tastes SO much better!
Madi is also fully recovered from her staph infection. It only took about 3 weeks or so to completely close and heal all the way. The scar is slightly wider at the top of the incision but it looks great. It is amazing how the body heals...it was a huge open wound and then just closed up on its own. They recommend that we keep it out of the sun for a full year so it doesn't stay dark forever. I massage it every day and rub vitamin E and a cream for scars on it which she seems to like.
Madi is changing and getting stronger everyday. She is "talking" and yelling a ton these days. She has found her voice and loves to make all sorts of noises. She now likes to growl which is pretty funny. She laughs all the time and truly is a happy baby. We can't imagine life without her. Here are some recent pics:

Madi at physical therapy

Having fun on the 4th

Ready for the parade

The "old man face"

Grandpa Larry loves the Giants!

She already knows karate!

Do you see a slight resemblance?

Great Video

2009-06-17T21:54:00.000-07:00

Check out this awesome video

http://www.youtube.com/watch?v=t_0K-gPlyb0&feature=player_embedded

Wait...who had surgery?!?!

2009-06-17T20:58:00.000-07:00

Here she is!!! Does it look like she had open heart surgery a few weeks ago???

Well Madi continues to amaze us and is doing great. She has a lot more energy now that her heart is fixed and is definitely on the mend. The staph infection is gone and the incision is healing nicely. It is still open and we are continuing to change the dressing twice a day but it's closing up well and is much smaller now. It doesn't bother her at all. She is back to rolling all over the place and doing tummy time like a champ! It is amazing to see how much more stamina she has already. I still worry a little bit when she is on her tummy but she will let us know if it is too much too soon. Plus, it is impossible to keep her still!

We are very excited to get on with life now that the surgery is behind us. We have a lot of fun to look forward to and are excited for the summer! We spent last Sunday watching Daddy play in his Triple Play alumni baseball game. Triple Play is a competitive baseball team that he played on in high school and now coaches for. It was a lot of fun to watch. Daddy definitely still has it but paid for it a bit the next day. Oh the pains of getting older!!! :)

Dave and Madi had a lot of fun spending time together while I went back to work this week. The transition wasn't too bad...Madi definitely had more fun than I did! :) She loves being with Daddy and they bonded even more these last 2.5 days. I am very excited to be back home with her until next Monday!

Settling In

2009-06-10T20:58:00.000-07:00

We are back at home now and trying to settle back in to a "normal" routine. We were released from the hospital on Sunday are are definitely glad to be back home. Madi received quite a few doses of heavy antibiotics by IV while in the hospital and is now on oral antibiotics for the next 2 weeks. We still have to change the dressing on her wound twice a day and it is definitely getting better each day. I finally looked at it a few days ago! My stomach still turns a little bit when I see it but I am getting better each time as well! :) Madi is feeling great...she is happy, looks healthy and is having lots of fun playing at home. She is very active and squirmy and doesn't seem to be in any pain or bothered by the massive amounts of gauze on her chest. She even keeps rolling over onto her tummy (which they said to try and avoid) but I can't seem to keep her from doing it unless I sit next to her all day long and basically hold her down! She is used to taking her medicine and does it for the most part without a fuss. Her antibiotics don't taste good so she does end up spitting it right back in my face every once in a while (which is how I know it tastes awful). The biggest challenge now is getting Madi back into a routine. She has been sleeping through the night for months but got pretty off schedule when we were in the hospital. She also got a little spoiled while we were there (which I think is well deserved) and now likes to be held and rocked to sleep. She has also been waking up at 2am wanting to be held and when I try to put her back in bed she just keeps waking up. So I have given in the past 3 nights (mostly out of pure exhaustion) and brought her into bed with us. Of course, she sleeps great there and literally rolls over to snuggle up as close to me as she can...I love it! I also think she deserves a little extra cuddling after all she has been through but I don't want to get in the habit of this so hopefully she will just stay asleep tonight!!! :) I am planning on going back to work next week and Dave will stay home with her the days that I work. I now work part time so I will only be away from her on Monday, Tuesday and half the day on Wednesday. I think this is going to be rough on both of us.

Dang!

2009-06-06T16:59:00.000-07:00

Well we are back in the hospital...taking residence here at Mary Bridge. Madi woke up yesterday morning at 2am and just didn't seem right. She was super clingy all day and by the afternoon she was starting to get a fever. I looked at her incision sight and the top was starting to get a little red and was oozing...yuck. I called the cardiologist and they prescribed an antibiotic in case there was an infection. A few hours later her fever spiked to about 103 and she was absolutely miserable. I couldn't set her down...she laid on me all afternoon and basically moaned and whined. We finally made the decision to take her to the ER. The ER was packed but she was top priority and we got right back. Her surgeon met us there and immediately knew she had an infection. The solution to the infection is not pleasant! He had to sedate her and literally cut open half of her incision, drained it, and packed it with gauze. I didn't watch but Dave said the hole is pretty big (he said you could fit a golf ball in there) and you can actually see her sternum...yuck! :0 Needless to say, Dave is gong to be the one responsible for changing the dressing. I don't think I can handle seeing my baby's chest opened up. The Dr said we will be surprised how well it will heal. He said we will probably need to pack it with gauze for about 2 weeks and then it will be small enough to just put a bandaid on it. The hole needs to heal from the inside out.
They also started her on IV antibiotics. She is currently on the strongest antibiotic there is and we are waiting for the culture to come back to see what type of infection it is. We do know it is a "staph" infection but they want to see what type so they can prescribe the best antibiotic for that specific type of infection. Despite this setback Madi is doing great. She continues to absolutely amaze us. She woke up from the sedation with her chest open and she was smiling and giggling at everyone (and it was 2am). She has been a happy baby all day and only cried a little bit when they changed the dressing this morning. It is such a relief to see her feeling better. I have never seen her so miserable as she was last night. Even though we are sick of being in the hospital, we know this is where she needs to be and seeing her feel so good has made it easy to be here. So, once again we are asking for prayers...prayers for quick healing! We truly appreciate all of the love, support and prayers we have received. We feel so blessed to have such amazing family and friends.

We're HOME!

2009-06-03T16:54:00.000-07:00

We were released from the hospital Sunday morning and are loving being home. We have been spending most of our days relaxing outside on the deck. Madi loves being outside and really had a hard time being cooped up in a tiny hospital room for 10 days! Those of you in the area know how nice the weather has been for the past few weeks...and it is nice to finally get to enjoy it. Madi is doing great. She was on a little oxygen when we first came home which proved to be a little challenging logistically. We have a HUGE oxygen tank set up downstairs and we also have a few travel tanks in a little backpack. When she was hooked up to the big tank downstairs you would hav to unhook her and use a little travel tank just to take her upstairs. She went to the cardiologist yesterday and we were able to take her off of the oxygen now...yeah! No more toting around an oxygen tank everywhere we go. They did another chest xray and echo of her heart and it all looks good. Her chest xray is actually starting to look better. She has been on prednisone since Saturday as she had some fluid build up around her heart. They put her on prednisone to get rid of that inflamation and it also seemed to have helped her lungs out...woohoo! The fluid around her heart is gone as well...so things are looking good for Miss Madi! She is in a much better mood at home and giving her medicine is not an issue at all! :) She still has a little bit of a temper that she never had before...it could be from the prednisone which they warned us may make her more irritable or it could be that she actually has more energy to get mad and cry! Her cardiologist said a crying baby is a good sign of a helathy heart and lungs. She still is pretty happy...we are down to about 1 minor meltdown a day...not bad for 2 weeks after open heart surgery. Grandpa and Nonna are still in town from Sacramento but are leaving on Saturday. :( They have been a huge help and Madi has had fun with them. She thinks Nonna is pretty funny and constantly giggles at her. She loves to play with Grandps and pull on his hair and face. We will be sad to see them go but Madi and Mommy are planning on going to Sac for July 4th so we will see them soon! I will get some more pics posted soon of our pretty girl with NO wires or tubes...I just wanted to post a quick update while I have a sleeping baby!

Our Happy Baby Is Back!

2009-05-30T16:45:00.001-07:00

We have our happy girl back!! Madi has been a completely different baby today...no meltdowns and lots of smiles and laughs. It is so great to see her back to her happy self again. Her potassium levels are back up so she doesn't need to take potassium anymore...thank God! We also switched her blood pressure medicine to one that is a much smaller volume so it is much easier to give to her. She has taken all her meds today like a champ with not a tear shed...so much different from the past few days. I think the main difference is the potassium which I think burned/hurt and set her up for a horrible day. She is now also on a steroid as she has a little build up of fluid around her heart. It is not the best tasting but she did pretty well with it and I made sure she had a bottle close by for a chaser! She will only be on this for 5 days and I am hoping this will also help her lungs out a bit. The best news of all is that we are going home tomorrow!!!!! Madi will go home on a little bit of oxygen (1/8 liter) and will probably only need this short term. It is just going to take some time for her lung pressure to balance out. We will most likely have to go to a pulmonologist eventually to work on her pulmonary hypertension. Other than that, not much new to report. Her heart still looks good and her surgeon and cardiologist are happy with the repair. A huge thanks to the awesome medical team who did a great job...especially Dr Woods who worked his magic and repaired what he said was "the most complicated AV Canal he had ever seen"!

It is amazing to sit back and think about what has happened over the past week. I look at my little baby and can't believe that she had open heart surgery 9 days ago...she is amazing! If you looked at her today you would never know (well, minus the oxygen she is hooked up to). I have gained so much strength from her and watching all she has gone through. I feel so bad for her, but know that this will only make her stronger. Here are some pics from the past few days:

Madi plotting a way to escape from the hospital

Playing with Nonna and Grandpa

Showing off her tough-girl scar

Reading books last night

Rough Day

2009-05-28T21:40:00.000-07:00

It has been a pretty rough day here for Miss Madi (and just about as rough on Mom). I think Madi is completely done with being in the hospital. She is tired of choking down medicine and being messed with every few hours. She was quite the grumpy girl today with multiple meltdowns that turned her blue. I think I am going to need to take some of her blood pressure medication! Speaking of medicine, here is Madi's list of meds she is taking: Lasix 3 times a day (a diuretic), Captopril 2 times a day (for blood pressure), Prevacid once a day, Potassium 2 times a day, and tylenol as needed for pain. She is now taking all of these orally and it is torture to give them to her. The potassium tastes awful and ever since she started taking it she has no interest in taking any medication. She literally screams, turns blue and sucks in tons of air which later gives her gas pains...it is awful! I am at a loss of how to make this situation better. If anyone has any suggestions please let us know. She used to take medicine like a champ but seems to have lost all patience. I hope and pray it will get better once we are home but who knows...I see no end in sight right now. Speaking of going home, we may be getting released tomorrow or Saturday! Madi may have to go home on oxygen as she still is having a hard tiime getting completely off of oxygen...hence the meltdowns that turn her blue. Her lungs still have some fluid in them. So, we may have to go home with oxygen for a bit until her lungs get better. They told us this is fairly common and it just takes some time. Her lungs still look fairly crummy on the chest xray which may be why they are taking some time to adjust. So again we are trying our best to be patient. It was just so hard to see Madi so upset today. I literally spent half of the day holding her and cuddling (which I love) but that was the only thing to keep her from screaming. So tomorrow we have another busy day with an echocardiogram, chest xray and bloodwork to make sure she is responding well to the meds. Please pray that her potassium levels are back up so we can stop giving it to her...that would make us all so much happier!!! Thank you again for all of the love, support and prayers...we truly appreciate it.

So Far So Good

2009-05-25T16:37:00.000-07:00

So today has been a busy day for Miss Madi. She had a good night and rested peacefully. She even cracked a few smiles for me at 4am!!! I was so happy that I had to wake Dave up so he could see our smily girl. It was so good to catch a glimpse of the Madi we know and see her feeling well enough to smile. She has been taking tylenol with codine for the pain and that seems to be keeping her comfortable. She has had some major constipation issues and needed some help to get things moving! We'll just say that she has found some relief and is a much happier baby.

This morning we had the echocardiogram of her heart as well as a chest xray. We were very nervous to se ethe results of the echo as this will tell us whether or not the repair was still successful. We were just praying that the valves were not leaking excessively! Everything on the echo looks good. Her left valve has a minimal leak which is very normal. She can have a nominal leak like this forever and never have any problems. The right side did have a larger leak but that is due to pulmonary hypertension (high blood pressure of the pulmonary artery which is a blood vessel that carries oxygen-poor blood from the right ventricle to the lungs). Her cardiologist said it is very common to have higher lung pressures post surgery and that this is all in the realm of normal. He also said that it is very common in kids with down syndrome. He said it usually just takes time to get the pressures lower and oxygen helps. So, we will not be weaning Madi off of oxygen for a few days. There are some medications that can help pulmonary hypertension if it doesn't get better with oxygen and time. The main one used is Viagra. Yes, you read that right...I did say Viagra. He said that Viagra was initially used for pulmonary hypertension and they found a great side effect to make them millions! :) So, our little girl may be on Viagra...hmmm! They are going to do a repeat enchocardiogram on Friday to see how it all looks. This is all good news and we are no longer concerned about the need for another surgery immediately!!! Woohoo

Maid is pretty worn out this afternoon and has not been the happiest girl today. Every time anyone in scrubs comes near her she makes a sour face and starts to whine. She has already figured out that someone in scrubs = getting prodded.

Happy Memorial Day!!! Please take a moment to honor the true meaning of Memorial Day and remember those who have served our country and especially those who have given their life! Thanks Daddy and rest in peace Rick and Dale.

Out of The ICU

2009-05-24T14:10:00.001-07:00

Today Madi was moved out of the ICU and onto the regular floor...yeah! This is one step closer to home! I am now able to stay with her overnight...I even have a chairbed (chair that pulls out to a bed) and our own bathroom with shower. We are set...it is like our own little apartment. :) Dave said he is going to bring in his sleeping bag and camp out on the floor...not the cleanest idea but I'm sure he's been through worse.

Madi is still doing well today. She is much less sedated but is in some pain today. She is squirming around quite a bit and can't get comfortable. She has been crying out today...which is good to get her lungs moving but hard for us to watch. She is definitely not her normal happy self. Even when she is awake she is not the happiest camper so we have been trying to get her to sleep as much as possible. She did have a bit of a fever this morning but is responding well to tylenol. Her cardiologist will be doing a follow up echo (ultrasound of her heart) to look at the repair and make sure everything looks good. They did hear a slight murmur today so please pray that it is nothing major!!!! We will continue to keep you updated. Thank you again for all of the prayers...and please keep them coming! :)

Pics From Today

2009-05-23T21:28:00.000-07:00

Here are some pics from today...no more ventilator or chest tubes!!! :)

Our sweet girl

She still loves to hold Daddy's hand

Daddy's Little Ranger

2009-05-23T16:28:00.000-07:00

Well, Madi is having another fantastic day! This morning the Dr's decided to take out her chest tubes, pacer wires, catheter, and arterial line. The pacer wires were hooked to a machine that would pace her heart if it got into a funky rhythm. The chest tubes are tubes that drain the excess fluid around her heart. They had to sedate her to pull out the wires so she has been pretty sleepy today. If she hears our voices she tries so hard to wake up and look around but she is still pretty out of it. The good thing is that she seems very comfortable. Now that the wires are out she is off of the heavy pain meds through the IV and is getting pain meds by mouth as needed. This will help to wake her up more so she is not so out of it...she is definitely still in her "happy place". Getting these wires out is a huge step and she is doing great!!! They said as long as everything continues to go well tonight she will most likely be out of the ICU tomorrow and on to the regular floor for the next few days.

I was also able to hold her today!! It has been so hard for me to not get to hold my little girl and finally after all the wires were out...the moment came. It was almost as wonderful as holding her for the first time after she was born. I was a little afraid of hurting her but she seemed very comfortable back in mommy's arms!

We are just so incredibly proud of her. She has been such a trooper through all of this and she is doing so well. She truly is our little fighter...she is Daddy's little Ranger! :) I will post some more pics of her once we get back home. It is so nice to see her sweet face without the ventilator!

Thank you again for all of the love, support and words of encouragement through this tough time. We already feel like she has come so far and we are so close to a full recovery. It is so nice to know that the surgery is behind us and we can move forward and get her feeling better.

Our Tough Cookie

2009-05-22T15:08:00.000-07:00

Madi is having a great day! She had a busy but good night and she is doing wonderful. She did spike a temperature over night but they put a cooling blanket on her which did the trick. Obviously, it is very common to have a bit of a fever after surgery but it is important to keep her blood pressure down right now, so they have tight perameters for where they want her temperature to be. When we arrived at the hospital this morning Madi was awake. She is still pretty sedated and sleepy but definitely wakes up and looks around a lot. She is squirming all over but is not fighting the tubes. It is great to see her doing so well but was hard to see her awake and squirming to try and get comfortable. She is still on the ventilator so she is unable to make any noise. She looked at me a few times and I could tell she was trying to cry by the look on her face and it literally tore my heart out!!! I can only imagine what she must be thinking...mom, why aren't you picking me up...what is going on. I keep reminding myslef that she will not remember this...thank God! It is so reassuring to see her doing well and to get positive updates from the nurses and doctors. Currently they are weaning her off of the ventilator and plan to have her off of it sometime this evening!!! Her lungs are a little "wet" so they are also working on trying to loosen the fluid and suction it out. Every hour they lower the amount the ventilator is helping her and she is handling it beautifully. She is our tough little cookie!!! Dave just helped give her a sponge bath and change her bedding. She is now resting peacefully...awake but definitely comfortable! We will continue to keep you posted. Thank you again for all of the prayers...they are working!!!

The Longest Day...

2009-05-21T19:28:00.000-07:00

Wow, what a day for the Kang family. Madi's surgery was a success and she is doing well as we speak. The surgery ended up being a lot longer (about 6 hours) and much more complicated than originally anticipated. Here is a quick explination (to the best of my abilities) of the complication that was found:
Madi's heart needed a patch between the two (right and left) ventricles. Once the surgeon was inside her heart he noticed that her chordae tendinae (chord-like tendons that connect the muscle of the heart to the valves) were crossed through the center of her heart where he needed the patch to go. At that point he had two decisions...he could not repair the heart and she would always have one ventricle, or he could give it a shot and do his best to continue with the repair. He told us that if it was his child he would have wanted her to have a shot at it so he went ahead with the repair. He literally had to weave the patch through the tiny tendons in order to close the hole and repair the valves (which is why the surgery took so long). They did an ultrasound once he was done and as of now the valves are functioning and not leaking!!! This added complication does increase the risk of the valves eventually leaking and possibly needing another repair (10 years down the road). All in all (and despite the ulcers formed by mom and dad) things are looking good so far. Madi is doing well and continues to be a strong fighter!

Madi is resting comfortably and is heavily sedated. They are going to definitely keep her on the ventilator through the night and therefore they are keeping her very sedated. It was so extremely hard to see her with all of the wires and tubes. It amazes me how much strength I have gained from her. Watching her literally fight for her life is incredibly inspiring and moving for me. I would do anything to switch places with her. I feel so completely helpless! As her mom it is my job to protect, care for, comfort and provide for my baby. It is so hard to just stand by and watch as doctors, nurses, respiratory therapists etc tend to her. We just lef the hospital to try and get some sleep and it is so odd to be home without her. I know she is in great hands and she has an a amazing team working on her. It is insane how chaotic her room in the ICU is...there is constantly someone monitoring or doing something. I keep telling myslef that each minute that passes is a minute closer to a healthy and happy life for our sweet girl. We know she is on the road to recovery and we pray that she has a good night!

We will be back at the hospital by 7am so we can catch all the doctors on their rounds. Thank you again for all of the support, love and prayers. It means so much to us! Here are some before and after pics. Just to warn you...the after pics are a little tough to look at! :( One day we will be able to show her how strong she was, even as a tiny baby!

Surgery Day...

2009-05-21T09:33:00.000-07:00

It has been quite a while since I personally wrote in this blog...in fact, the last entry I scribed was during the first few weeks of Madi's life while in the NICU...

Pins and needles. NO. More like, spikes and knives...

Wow, the day that we have been anticipating (in both a positive and fearful way) has arrived. So, this morning/today has quite literally been the hardest day of my life thus far-hands down. The starvation, sleep deprivation, and physical challenges of Ranger school, two combat tours in Iraq, being wounded, losing comrades, being broken up with Jenn for 3 days in college :) , ALL the emotional and mental challenges of life up to this point...none can compare to watching your 6 1/2 month old daughter being carried off into the OR for open heart surgery. I was nothing but helpless at that point...

Utterly helpless...

A moment in time that will never escape the memory of my heart played out like this: after Jenn and I allowed one of the OR nurses to take Madi from us and start heading to the OR area, we both noticed that just before Madi disappeared around a corner, she was straining over her shoulder to look around the nurse and catch one last glimpse of mommy and daddy-tearing up and trying to maintain composure in the hallway. That event yanked at my heart...almost right out of my chest.

As a father, the emotional challenges of this event revolve around the premise that I am completely powerless to protect her...to shield her from the pain and discomfort that this lifetime is sure to produce. Because the procedure is a MUST, to enhance the quality of her health and life, what else can I do but humbly deal with the emotional shackles to which I am currently bound...?

At this very moment, we are sitting in the surgery waiting room, whispering our prayers and making every effort to keep thoughts positive and our minds elsewhere. Through the windows we can see a clear and sunny day; blue skies and green trees litter the picturesque background...a scene that has become a trademark for the changing season in WA. Today IS a beautiful day, indeed. Madi is currently being operated on to repair and strengthen her heart, and, we have endured yet another emotional hurdle that will strengthen our spirits and hearts as well. Life is a beautiful thing...and even more beautiful when you take the time to look at it through the eyes of your own child. All the introspection in the world cannot help you fully appreciate the fragility and the power of life better than the eyes of your flesh and blood.

Yes, Jenn and I are scared. Unbelievably scared. But we will get through this together...and more importantly, little Miss Madi will get through this. We will continue to keep you all in the loop with how things turn out...

Thank you for all the blessings, prayers and well wishes from our family and friends. Bless you all. Also, a special thanks to Grandma and Grandpa Lichtenberger for making the trip up from Sacramento and spending time with us at the hospital. Also, thanks to Beth (a great friend and Madi's Godmother) for taking the time to keep us company at the hospital and for always managing to help keep a smile on our faces. AND, a huge thanks from me to the Triple Play Stinger family. Thank you players and parents! The gift bag that Joy dropped off was VERY thoughtful and much appreciated. Thank you so much for your consideration as well as your individual places in my life. It really means a lot...

All Our Love, Dave, Jenn & Madi

Where does the time go??

2009-05-15T21:01:00.000-07:00

Wheeeew we have had a busy few weeks. I can't believe May is already half way over!! Quite a lot has happened over the past few weeks so I will do my best to summarize.

On May 2nd Mommy had her alumni soccer game at Seattle U. It was a lot of fun to get together with old teammates and lifelong friends to kick the ball around and see if we still have it. I literally had not kicked a soccer ball since I found out I was pregnant so I knew the first few minutes would be pretty entertaining. It took a bit but eventually it all came back to me...just in a much slower and more painful pace. All in all it was a great time and I came away with no injuries and was surprisingly not too sore! Madi enjoyed wtching Mom play soccer for the first time and hopefully she learned a few tricks...she will be up and playing in no time!

Madi has also started going to physical therapy once a week. She still has some stranger anxiety but took to her therapist Larry really well. She had a good time and really works hard for us. We are so excited to see what the difference will be after she has recovered from heart surgery. Everyone is always surprised at how well she is doing and how much energy she does have despite her heart defect. We are still focused on lots of tummy time (which is a huge workout for her now), getting her to use her arms to push herself up, and sitting up. She has come such a long way and we are so proud of all she has accomplished already. The great thing about kids with down syndrome is that they will reach all the milestones that other kids reach, it will just be at their own pace. As of now she is not too far behind and it is our goal to do all that we can to help her reach those milestones!

On Wednesday we had Madi's pre-op appointment for her sugery that is scheduled for next Thursday. It was a long afternoon that consisted of a tour of the hospital, meeting with the surgeon and his team, bloodwork, echo cardiogram, chest x-ray and an appointment with the cardiologist. It was a lot on little Madi but she was definitely a trooper. The surgeon spent a lot of time with us explaining the procedure, rattling off a lot of statistics, discussing possible complications, and helping to prepare us for what to expect. We both really like him and feel confident that he will do a great job! He assured us that the success rate for this procedure is extremely high. They also helped prepare us for how Madi will look after surgery. She will have a pretty large incision down the center of her chest as they have to go in through the sternum. She will most likely come out on a ventilator, will have chest tubes for drainage and quite a few IV's...I think I am forgetting some things. Needless to say it is going to be extremely difficult to see our little girl like that. She should only be on the ventilator for a day or so and slowly as she becomes stronger they will be able to start removing the wires. He also said to expect a 7-10 day hospital stay. If you are interested in learning more about an AV Canal defect here is a link with some info

http://www.americanheart.org/presenter.jhtml?identifier=132

I had an amazing first Mother's Day (well the first one with her here with us)!!! The day started with breakfast in bed with my two favorite people! We then went for a walk in the afternoon and had a picnic at the park near our house. It was such a fun day to spend as a family. I absolutely love being a mom and I feel so blessed every day to have such a sweet and loving baby. Madi got me a new BOB jogging stroller so we can get out and go running together. I am definitely ready to get back into running but was unable to when it is just Madi and I at home. I was very excited for the new stroller and have already enjoyed a few runs with her.

Growing Girl

2009-04-30T09:37:00.000-07:00

Well 3 weeks and counting until Madi's sugery. Despite her heart condition Madi is doing great. She is gaining weight (as you can see from the pics) and her energy level is still pretty good. We are so excited to see how this surgery will change her. We have heard that she will be a different baby. We met with Teacher Barb (Madi's early intervention teacher) yesterday and she said Madi will just "take off" once she has recovered. Everyone that has worked with Madi is always pleasantly surprised at how well she is doing and developing...we are so proud of our little angel. When we work with her you can just see how much she enjoys learning...it's almost as if you can see her little brain firing and trying to take it all in. We are working on teaching her sign language right now. We are starting out with: mommy, daddy, change diaper, dog, milk, eat, and water. Hopefully Dave and I can remember all of that! :) We are also still focusing on teaching Madi to sit up on her own and use her arms to support herself. Our main goal now is to get Madi to sit up on her own and be able to reach for toys while she is sitting. She is definitely well on her way! We will be working with Teacher Barb once a week and will obviously have to take some time off once Madi has surgery. Here are some recent pics of Madi...she is definitely starting to fill out.

Trying to feed herself

Reading books before bed with "Coach D"

Our happy girl

6 Month Birthday

2009-04-30T09:19:00.001-07:00

Yesterday was Madi's 6 month birthday and I figured we should celebrate with a little cupcake...a trial run for the big day! So I sat Madi in her chair and put a delicious cupcake on her tray. She wasn't quite sure what to do with it at first and was more interested in smiling at me but she did eventually stick her hand in it. She was looking at her hand covered in pink frosting and of course I cleaned her up before she could stick it in her mouth...I thought it may be a bad idea to introduce sugar already! If she takes after mom she will love sweets! Here are a couple of pics capturing the moment...isn't she adorable?!?!

I can't believe it has already been six months since this sweet little girl entered our lives. It truly has flown by and she has changed so much. We are so blessed to have Madi and we thank God every day for her.

Almost 6 Months Old!

2009-04-10T08:44:00.000-07:00

Since I have not been the best about keeping the site updated I will try and sum up the last month of Madi's life the best I can:

Madi has ben eating rice cereal for about a month now and she loves it! I wasn't sure how she would do with eating from a spoon (honestly, I was expecting it to be more of a challenge for her than usual) but she did great! She is already showing me not to expect any less from her! :) She totally got it from the start. She gets so excited when she sees the spoon, opens her mouth and swallows it all. She was definitely ready! I love feeding her each night. She has recently learned to blow spit from her tongue and she does it every now and then. She recently tried it with cereal in her mouth and literally sprayed it back in my face. I couldn't help but laugh and then of course she thought it was so funny! It is fun to watch her get so excited for her cereal. We are planning on adding in some other foods in a week or so. I'll let you know how that goes.

Madi battled through her first cold/cough. She really just had a touch of something but it did start to set in to her lungs as a bronchial infection so she was put on her first dose of antibiotics. She also received an antibiotic booster shot which really helped clear out all the fluid. She is doing great now and her lungs sound clear! We are happy it cleared up and now the biggest challenge is to keep her healthy between now and her surgery (May 21st). Eventhough she was sick, Madi was still her happy self. She did get a little more clingy to mom and stopped sleeping through the night. She would wake up coughing so of course I would go in and pick her up and hold her until she fell back asleep. Well, miss Madi decided that she likes that and continued that routine even after her cough was gone. She has just recently (the last few nights) started sleeping through the night again...and boy am I loving it!

Madi is still going through a little stranger anxiety every once and a while. There are just some times when she decides that she wants mom and that is that. She has develpoed quite an opinion and will let you know what she wants. Uncle Jason was actually impressed at hearing her cry...she is usually so even-tempered.

Here are a few stats on Madi:

weighs 13lbs 8oz
is our little peanut (wears 3-6/6 months clothes)
is rolling all over the place
has a sparkle in her eye when she smiles (reminds me of Grandma Rita)
loves to suck on/drink water out of my glass and gets mad if I take it away
is a cat napper most days (45 mins) but sometimes takes a 2 hour nap
talks/babbles constantly and is pretty loud (gee I wonder where she gets that from)
loves to watch and grab at our dog Ollie
loves it when I sing to her (yikes!)
has us wrapped around her little finger
loves to be outside
is still so cuddly
has crazy hair (she definitely has the comb-over look going for her)
has gotten much stronger and much better head control
is working on learning to sit up on her own
is definitely the best thing that has happened to us!!!!

We hope all of you are well and had a very Happy Easter. I will do my best to keep the site updated more often. We will definitely keep it updated throughout her surgery and recovery...many of you have requested that. We ask that you all keep Madi in your prayers. She is our tough little cookie and we have faith that she will do great and everything will go well!!!

Madi Giggles

2009-03-29T21:33:00.000-07:00

A Busy Month

2009-03-29T20:44:00.000-07:00

Wow March proved to be a busy month for the Kang family. Jenn went back to work on March 2nd and was working full time for the month. Thank goodness I start part-time in April. The first few days were met with some tears (on my part not Madi's) but I didn't have a complete breakdown! :) Madi spent some time with Dave and some time with Aimee (our good friend and neighbor). Aimee is going to be watching Madi for us while I am at work. The month definitely flew by but I am so looking forward to only working part-time from now on.

We just finished up a busy but fun filled weekend. On Friday night we spent the evening with our neighbors Anna, Toni and Aimee. Madi was her easy, sweet self as usual. She hung out for a bit then when right to bed at her usual time and we just carried her home when the night was over. When we got to our neighbors, I realized that I forgot to bring her swaddle blanket with me for bed. I decided I would just try putting her to sleep without it and I could always run home (well...send Dave) if I needed it. Madi was a champ...she went right to sleep without being swadlded and has been sleeping that way ever since! Yay Madi! On Saturday our friends Becky and Sam came over for lunch and spent the afternoon with us. It was great to see them and introduce them to Madi. Today Madi and I went to Beth's house for brunch with Nichole, Beth and little man Kai. Kai is definitely into Madi and wanted to sit next to her (or on her), hold her, read to her, show her his toys, etc. It was so cute...he takes very good care of Madi. Kai is 19 months and is our godson and his parents (Beth and Brett) are Madi's godparents. of course, I forgot my camera so Beth will have to send some pics our way! This evening Jason (my brother) Sarah and Mia came down for dinner. It was so fun to let the cousins play together. We even got on the webcam with my mom and dad so they could share in the family fun. Thank goodness they are coming up to visit in 2 weeks...I'm sure it was killing my mom to not be there in person!

We have also set a date for Madi's heart surgery. She is going to have surgery on May 21st. We are all so anxious to get it over with. I know it will be the worst day of my life but I can't wait for the moment it is over! Thank god she will have no idea what is going on. Other than that, we have been enjoying life. We are waiting for the rain to stop and the sun to warm us up so we can spend more time outside on walks etc. Madi loves to be outside!

Madi is officially 5 months old today. She has gotten much stronger recently. She nows has a lot better head control, is sitting up in her bumbo chair and has started giggling/laughing. It is just the cutest thing I have ever seen! Here are a few recent pics:

Guardian Angels

2009-03-17T21:20:00.000-07:00

On March 18th, 2006 two of our dear friends/brothers were killed in action while serving in Iraq. Dave served with both Rick and Dale in 2nd Ranger Battalion, 75th Ranger Regiment. They are more than just friends...they are our family. We miss both of them very much and not a day goes by that we don't think about them and the sacrifice they made. We have already told Madi stories about Rick and Dale. There are times when Madi is playing and staring up at the ceiling and she will crack a few huge smiles at what appears to be nothing. We know that Madi is in fact smiling at her guardian angels and we can only imagine what kind of show they are putting on for her! We find so much comfort in knowing that Rick and Dale are looking down on us and protecting our sweet girl. Here are a few pics in honor of our heroes.

Dale and Rick

Their memorial in Iraq

Rick

Dale The gang at our wedding

Fun times with Rick and Meghan

Answers to some common questions

2009-03-14T12:01:00.001-07:00

I wanted to write this post to answer a few common questions that people have asked us since Madi was born. I have been asked quite a few times if we had any idea when I was pregnant that Madi may have down syndrome. We chose not to have the prenatal blood test done which screens for chromosomal abnormalities. We made this decision as there are often false positives on this test and the only way to confirm if there is an abnormality (and it is still not 100% accurate) is by amniocentesis. I knew that I did not want an amniocentesis done as there is a small risk of miscarriage and we knew that no matter what, we would not terminate the pregnancy. At our 20 week ultrasound they did notice that Madi's kidneys had a slight elevated level of fluid in them and there was a tiny "light spot" on her heart. What that meant is that the tissue on that spot was a little thicker. Both of these are very common issues in healthy babies but both also happen to be very light markers for down syndrome. It was never really brought up that there was anything to worry about. I also did a ton of research and found that both issues are very common in babies without DS. I have a good friend whose daughter had the same issues on her ultrasound, she had an amnio done, and everything turned out normal. We also were told that the light spot is something that is more common in Asian people so we assumed since Madi is half Asian then that explained it. Since we are so young and had no family history of genetic abnormalities I didn't even think twice abbout it and continued to blissfully enjoy my pregnancy.

Many people also ask me if I regret not having the testing done and ask my opinion if I would recommend having the blood test done. This is a very difficult question for me to answer. I personally have no regrets and am glad that I did not know of her condition before she was born. I personally am not a fan of amnio's and the truth of the matter is that 92% of positive amnio tests (for down syndrome) result in termination. I was shocked at how high this number is and quite frankly it saddens me. That means that 9 out of 10 Madi's are not given a chance at life. 9 out of 10 families are never going to experience the extreme joy this loving baby brings to our lives everyday. Honestly, before Madi, the idea of having a baby born with down syndrome was so frightening to me. I have always had a special place in my heart for people with down syndrome but I never imagined having a child with the condition. Whenever I saw a family with a child with DS I would think "Wow, what an amazing family. I can't imagine having to go through that. They must be so strong." But the idea of being that family seemed so distant and the thought was so scary. Now, after having Madi for such a short time, I am not scared but am so hopeful for her and for our family. Some days I feel so lucky to have a "special" child that has opened my eyes and changed me in a way that I never thought possible. Other days, I am aware of the challenges that we are going to face and know that it is not always going to be easy...but ask any parent and I'm sure they feel the same way. Yes, we are going to have challenges. But what parent isn't? Although our challenges are going to be different who's to say they are going to be harder? I would not change who Madi is...she is perfect and is exactly the way God intended her to be. I know she was sent to us to change our perceptions, and she already has. I hope to also change poeple's perceptions on being a parent to a child with special needs. Yes, there were many tears shed when we first learned the news and I'm sure there will be more to come over the years. But, those tears are such a tiny, tiny fraction of the joy and happiness this little blessing has brought us. We are so happy and can't wait to watch our little girl grow and develop. I know she is going to continue to teach us so many important lessons in life.

Please know that Dave and I are both always willing to talk freely about our life and Madi's condition. If you or anyone you know has any questions or concerns, please feel free to contact us. I hope to one day be a resource for parents who have a prenatal diagnosis or a new baby born with down syndrome. I want to be there to tell them....it is going to be okay. We love all of you and hope that life is smiling on you.

4 Months Old

2009-03-10T21:32:00.001-07:00

I can't believe it has been a month since I last updated the site! Things have been a little crazy around here. I also can't believe that Miss Madi is already 4 months old...time flies! Madi has recently had quite a few Dr appointments and all have gone well. She currently weighs 11lbs 13oz and is 24 inches long. She is still 50% for weight on the down syndrome growth chart and 85% for height. She is growing well so the addition of extra calories to my breastmilk is doing the trick. Madi also had an appointment with her cardiologist and all still looks well. It looks like she is going to have surgery the last week in May (don't have the exact date yet). It is great that she will be 7 months old (the goal was for her to be at least 6 months old). I have to admit that narrowing down a timeframe has made it a little more real. We will have a pre-op appointment in May where we will meet the entire surgical team, tour the ICU and surgical floor, and have a chance to ask any questions we have. It is all so overwhelming that I still sometimes feel like I don't even know what to ask or where to start! We also recently met with our Family Resources Coordinator who will assist us in finding all the resources that are available to Madi based on her diagnosis of down syndrome. Today we toured the Childrens Therapy Center in Tacoma to see if that may be a place we would like to have Madi's therapy (physical therapy, occupational therapy, speech therapy, etc). She will also be starting early intervention at A Step Ahead. We are not sure when therapy will start (most likely in the next few months). We do have a few exercises that we do with Madi each day but right now she is just enjoying life as a typical happy baby...soaking in the world around her.

Developmentally Madi is doing great. She is "talking" a ton, smiling, rolling over, and mastering the use of her hands to grab toys, etc. She is like a little crab with pinchers that manages to grab onto anything in her reach (especially my hair)! Miss Madi is also sleeping through the night...woohoo! She has been a good sleeper from the beginning but she is now sleeping 10-11 hours a night! She still goes to bed a little late (around 9pm) and sleeps until 7am (but the last few nights 8am). We moved her into the crib in her nursery about a month ago and she has been sleeping great ever since. Here are some pics from February...enjoy!

Some Pics from the Wisner/O'Shea Wedding

2009-02-11T15:38:00.000-08:00

Here are some pictures from Stacey and Darryn's wedding last weekend. We had a great time!!!

Madi is Rolling Over!!

2009-02-10T21:19:00.000-08:00

Madi has learned a new trick...she is now rolling over. Of course, I haven't caught it on film yet but will have the camera ready tomorrow! I was so excited the first time and Madi just looked at me with a look of wonder on her face...she was probably wondering why I was clapping and yelling with excitement! Dave and our good friend Claire were there to catch the big moment as well. It is amazing how much joy and excitement you find in watching your child accomplish something new! Hopefully we will have it on video soon.

Enjoying Life

2009-02-08T17:11:00.000-08:00

Love that contagious smile!

Hanging out with Daddy in her camo

Visiting Teresa and Andrew

Madi loves her tummy time

Jut wanted to write a quick update on what has been going on with the Kangs. Madi attended her first wedding last night. Stacey and Darryn tied the knot and all three of us were there to share in the occasion. We had a great time and Madison was quite the trooper. She was all dressed up in her charcoal and pink dress. She slept through most of the reception but was awake enough to stare at the beautiful room and she even made an appearance on the dance floor with Daddy! She met quite a few new people and had a great time.

Madi also went to the Dr last Friday for a weight check. She now weighs 10lbs 10oz...she gained 10 ounces in a week!! I guess the extra calories we have been adding yo my breastmilk did the trick. We have also gone on a few walks over the past couple of days and have enjoyed the sunshine we have been blessed with!

Our New Blog

2009-02-07T13:11:00.000-08:00

Thanks for bearing with us while we make the switch to using blogspot. It is an easier blog to use and will keep our entries more organized as time goes on. Sorry it has taken us so long to update our blog...I can't believe it has been a month since we wrote something!

Time sure does fly by...especially once you have a baby ruling your universe. We wouldn't have it any other way! :) I can't believe Madison is already 3 months old. She is doing great and is continuing to grow and develop. She is a very active little girl and has become quite the squirmy little baby. Madi just had her 3 month check up and all is well. She recently has not been gaining quite as much weight as she was before so her Dr recommended that we add some formula to my breastmilk. We had been doing this when she was in the NICU and a few weeks after and it worked wonders. She is eating enough volume but seems to be burning too many calories to pack on the pounds. That is most likely attributed to her heart condition and is not a major concern. She weighed in at 10lbs and 22.5 inches long. Children with down syndrome have their own growth chart so according to that chart she is 50th percentile for weight and 75th for height (definitely didn't get that from her dad)! :) She also saw her cardiologist in January and he was pleasantly surprised at how well she was doing. They did an ultrasound on her heart to check the structure and functionality of her heart and all looked well right now. She does not need to go back to see her cardiologist until March 2nd and most likely she will be having surgery in April or May. We will know more in March. Other than that, Madison is enjoying life as a typical 3 month old baby. She is smiling more and more each day. She is also quite the talker with lots of cooing and grunting. She is a very expressive little baby with so many funny facial expressions. She has recently decided that her fists are about the coolest things...she loves to play with them and suck on them. She has even started to suck her thumb...it is just about the cutest thing I have ever seen! She even rolled over from her tummy to her back. She was laying on the soft bed, so that may have helped her out a little, but she did it nonetheless!

We recently made a trip down to Sacramento to visit Jenn's relatives. We packed up the truck and 12 hours later we were there. Madison did great on the drive down and back. While there, Madi met her aunts, uncles, cousins, great grandmother, friends, and Nona's co-workers. She was quite the social butterfly! Baby Madison also accompanied her mom, dad, Nona, Grandpa, Tom, Dawn, and Lauren while wine tatsing in Amador County. The weather was beautiful in Sacramento...68 degrees the first few days we were there. Madi and Jenn went on a lot of walks and Madison was introduced to the sun. She loved it! Dave even got out for a few rounds of golf with Jenn's dad. It was a great trip and we loved sharing our little angel with everyone.

Many Thanks!

2009-02-06T18:37:00.000-08:00

We just want to take the opportunity to thank all of our friends and family for their love and support. The holidays are always a time of reflection for me and this year I feel so blessed to have so many great people in our lives, especially Madison. They say it takes a villag to raise a child...and I see truth in that statement. Madison is so lucky to have so many amazing people who will influence her life in such a positive way. She is already so loved by many and I know she will grow to love all of you (she still has to meet most of you)! :) I find comfort in knowing there are so many people who will take part in her growth both spiritually and emotionally...she is one lucky girl. I also know that Madison will bless our lives and teach us so many things...she already has taught us a thing or two. As her mom, Madison has already taught me to appreciate the little things. She has taught me to notice and cherish little ordinary things that I may have otherwise overlooked. I have also learned to live in the moment. That has proven to be the most challenging thing for me thus far. I don't worry about Madi as an infant or a child but I do tend to worry about life as an adult with down syndrome. What will school be like, will people tease her, will people judge her before they even get to know her, will she ever marry...it can go on and on. I worry about the times that I won't be there to protect her and stand up for her. In these times, Dave reminds me to take one day at a time. It is also during these times that knowing all of you are supporting her (and us) means so much to me. I know Madi is so loved and she will always know how special she is to each and every one of us...and I want to thank you for that. You all mean so much to our family and I find comfort knowing Madi will be surrounded by so many loving people. I know Madi has a bright and exciting future and I am excited to see what God has in store for us. We love you!!!

"Welcome To Holland"

2009-02-05T18:29:00.000-08:00

We were given this by a friend in the immediate days after Madi's diagnosis. I immediately found comfort and read it many times...usually while I was crying, smiling and thinking of how much I love our little Madi. Although we have only known sweet Madi for 6 weeks, I already see the beauty in Holland and am so excited to explore it even more! I wanted to share this with you and hope you enjoy it...

"Welcome To Holland" by Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michaelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome To Holland."

"Holland?!?" you say, "What do you mean "Holland"??? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around...and you begin to notice that Holland has windmills...Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of you life, you will say "Yes that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very significant loss.

But...if you spend your life mourning that fact that you didn't get to Italy, you may never be free to enjoy the very special, the VERY lovely things...about Holland.

Our White Christmas

2009-02-04T22:20:00.000-08:00

Sorry for the late postings but we still want to fill everyone in on Madi's first Christmas. We had a few big snow storms the weeks before Christmas so we had a beautiful white Chrsitmas...what a great first Christmas. Jenn's parents were in town for the Holidays so Madi spent a lot of time with Nona and Grandpa. We spent Christmas Eve with our neighbors (the McDonalds). Chrsitmas Day was spent with Aunt Amy (Dave's sister) and Uncle Jason, Aunt Sarah and Mia (Jenn's brother and family). Madi and Mia had a lot of play time together on Madi's new play gym. Madi even noticed Mia and very intently stared at her wondering who she was. They also cooed at eachother a few times and even held hands (well I think they both grabbed on to eachother at the same time). It was funny to see them laying on the ground next to eachother, kicking away, arms flailing and very excited about all the new toys around them. It was such a wonderful Christmas full of great friends and family...we are so blessed! Madi slept through opening her presents but we know she is loving all her new toys...especially the play gym! She loves to stare at herself in the mirror...well who can blame her, she is pretty cute! We have spent the past few weeks relaxing at home and avoiding the cold snow. Mommy and Madi stayed inside and watched Daddy and the neighbors have a huge snow ball fight! We have been enjoying a lot of family time before Grandma and Grandpa have to go home (on Jan 4th) :( Below are some new pics from the past few weeks. We hope all of you had a very Merry Christmas and Happy New Year! We pray that 2009 continues to bless you all!

Madison's Story

2009-02-01T22:09:00.000-08:00

She was sent to us three weeks early but we are joyful that we FINALLY got to meet our little Madison. Madison was born during the early morning hours of October 29th 2008 at 3:43 am; 19 inches long and 6 lbs 15 oz. The last week before Madison was delivered proved to be a mentally, emotionally, and physically exhausting time for us. For those of you who we have yet to chat with, the following is an update regarding Madi:

Madi started her life as a fighter. Even before she was born, Madi fought to stay healthy in the womb. About a week before Madison was born, we found out via ultrasound and pure luck that Jenn's placenta was abnormally mature for being 36 weeks pregnant. This meant that there was a possibility that Madi wasn't getting all the nourishment she needed and that there was potential for her to be stressed In-Utero. Jenn was hooked up to several monitors so that Madi's vitals could be observed...this was last week, October 24th. After a couple days of monitoring, Jenn was admitted to the hospital on Sunday the 27th and the medical team that we were working with kept their eyes on her and Madi. After several more tests and bio-physical profile ultrasounds, the peri-natologist, mid-wives, and nursing staff all agreed that it was time to get Madison out. Jenn was induced on the evening of the 28th and Madison was born early morning on the 29th. *The above is the abbreviated version of recent events.

The day after Madi was born, we met with several doctors and found out several things about Madi that have recently proved to be emotionally challenging based on the unexpected nature of the findings. Madison has a heart condition called a Atrio-Ventricular Canal (or AV Canal). This means that she has two holes in her heart that are allowing oxygenated blood and unoxygenated blood to mix inside the heart. This condition will not significantly effect her at the moment, but she will have to have open heart surgery sometime during her 6th to 9th month of life. This heart condition is very fixable and is deemed to be 'routine'...compared to many other types of invasive heart surgery. Additionally, we have been informed that children at this age are surprisingly resilient when it comes to recovery post-surgery.

Additionally, after having discussed some other topics of interest with our doctors and nurses, we have recently been informed that there is a very good possibility that Madi has Down Syndrome (Trisomy 21). The doctors are suspicious that she has Down Syndrome because she currently has very poor muscle tone (Hypo-Tonia) and the heart condition mentioned above is apparently predominantly associated with children having Down Syndrome. Madi had some blood drawn for a chromosome test and we are awaiting the results to determine whether or not she will be officially diagnosed with Down Syndrome. So, this is the current update with Madison's status at the moment.

We want to thank everyone for their love and support and for taking interest in our lives and Madison's new life. Regardless of outcome, we have truly been blessed and we thank God for the gift of Madi in our life. She is a beautiful little girl and one thing is certain: she will be one of the most loved (if not the most loved) child in this world. Jenn and I are appreciative of your thoughts and prayers and would be grateful for your continued prayers so that Madi will be healthy enough to come home with us very soon....and, that her heart surgery will take place without issue sometime in 2009.

Many people have told us that there is nothing like the birth of your own child...that the event and the little child changes you. We now understand. The instant we met this little girl, we became different people...the change was much more profound than starting out as a married couple and becoming parents. The change we acknowledge is the kind that begins from the inner workings of your soul. This is a spiritual and life changing morph that leaves you wondering how you ever managed to travel through this world without this other little person in your life. Simply stated, Madison has become our purpose...we couldn't imagine loving someone or something any more than we love her...she is our Miracle Madi and our resilient little angel. We can all learn something from young Madi's will and desire to live. She has certainly taught us a thing or two already... :)

"Grazie mille" (a thousand thanks) to all of our wonderful family members and friends who have poured out sooo much love during this uncertain yet infinitely fruitful time. Many of our blessings are certainly the result of our beloved friends and family...we love you all.