Sunday, March 29, 2009

Madi Giggles

video

A Busy Month

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:












Tuesday, March 17, 2009

Guardian Angels

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

Saturday, March 14, 2009

Answers to some common questions

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.

Tuesday, March 10, 2009

4 Months Old

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!