Monday, December 7, 2009
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. :)
Tuesday, December 1, 2009
Sunday, November 22, 2009
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.
Thursday, November 12, 2009
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:
Sunday, November 1, 2009
Thursday, October 29, 2009
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
Wednesday, October 28, 2009
Friday, October 23, 2009
- 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!
Sunday, October 18, 2009
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! :)
Monday, October 5, 2009
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.
- 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!
Tuesday, September 29, 2009
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!
Friday, September 4, 2009
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!
Thursday, August 27, 2009
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! :)
Wednesday, August 26, 2009
Saturday, August 22, 2009
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:
Sunday, August 16, 2009
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.
Saturday, August 1, 2009
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!!!
Saturday, July 18, 2009
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: