Meeting Santa

Madelyn met Santa this week! She got to sit on his lap for a picture after her cousin Luke's music program.

This week we gave Maddie an empty cup to hold and she brought it right up to her mouth to drink from it. Then she acted mad because it was empty. So we put a little water in it and she was able to drink from the cup- even though most of the water spilled out. It was cute to watch and she looked like such a big girl!



Today we heard back from the doctors at Children's Mercy Hospital in Kansas City. Madelyn needs open heart surgery to repair two holes in her heart. It was not the news I was hoping for, and we are really worried about her. Her surgery will not be as complicated as some children with Down syndrome need. The doctor told Richard they were really busy this week, so I have no idea when they will want to schedule it. I have decided to not do any research on the internet and we are trying our best to stay positive about the surgery. I know God will keep her safe and this surgery is what is best for her. It doesn't make it any easier, and I hate thinking about my little baby laying on the operating table with her chest open. I have heard that babies with Down syndrome typically do well with heart surgeries and recover quickly and fairly easily possibly because of their low muscle tone. Please pray for Madelyn. That her surgery goes well and she doesn't have any complications. We are so blessed to have so many family and friends here to support us.

6 month pictures

Yesterday Madelyn had her 6 month pictures taken. They turned out so cute! She was a happy girl for the most part, and she had lots of smiles for the camera. We haven't heard from the cardiologist yet. Hopefully we will hear this week. Here is a video of Madelyn during nap time. She gives me her "look" when I tell her she is crazy.

6 months

We have been busy around here! After Thanksgiving, we put up our Christmas tree as a family. Maddie really likes the lights on the tree! She even has her own ornament already.




It always seems that when I say that Madelyn isn't doing something, she starts doing it shortly after. Her teacher, Ms. Brenda, said to encourage Madelyn to touch her feet- something she wasn't doing. Within a week, she started playing with her feet all on her own! Now she is constantly grabbing her feet and sometimes even pulls off her socks.



On Saturday, we had a surprise 50th birthday party for Maddie's grandma. Maddie's Aunt Tisha planned the party and Richard, Maddie, and I were responsible for getting Debbie to the party location. We asked Grandma Debbie to babysit Madelyn in the morning and then took her out to lunch. It took a little effort, but we got her there and she didn't suspect anything! It was a great party and Madelyn had fun dancing with her relatives. She also got to meet her great Aunt Judy and spent some time getting to know her.

Madelyn is still going to OT and PT at Wesley. She is going once a week to PT for now and is starting to go every other week for OT. She is improving with her neck strength and tolerates sitting or tummy time for longer periods now. (She used to just roll over right away!) During OT this week, Maddie grabbed a toy with each hand and played with them for a little bit.

Madelyn was born with a heart defect. She has two holes in her heart- an Atrial Septal Defect and a Ventriclar Septal Defect. While heart defects are rare, about 50% of babies with Down syndrome have heart problems. When Madelyn saw the cardiologist when she was 1 month old, the holes were small, and we were told they might close on their own. If not, she might need surgery one day (around 4 years old or so). She said she should come back at 6 months. On Monday afternoon, Madelyn had an EKG and an echocardiogram at the cardiologist to monitor her heart. Both holes are bigger and the cardiologist sent the pictures and report to Children's Mercy. She said she wanted their opinion if it needed to be repaired soon. So now we are waiting to hear from them. I am so worried about her. I want her heart to be healthy, but I am scared for her to have surgery. It makes me realize how nothing else in this world really matters if I don't have Maddie. She is everything to me and truely makes my life complete. Please pray for Maddie- that God will fix her heart and keep her healthy.

Madelyn turns 6 months old tomorrow (Wednesday)!!! I will leave you with some pictures from the last couple weeks.

Happy Thanksgiving!

Yesterday we celebrated Madelyn's first Thanksgiving. We lounged around in the morning and then went to visit Grandma Debbie. After that, we went to Grandma and Grandpa's house to eat dinner. Everyone had a nice day, and I could tell Maddie enjoyed her first Thanksgiving. This year I am thankful for so many things- our family and friends, our home, our jobs, my faith; but especially for Madelyn. I love her more than I ever thought possible, and I love her more every day.

Big Girl!

Madelyn is getting so big! Her 3 month clothes are getting too small so we moved her into 6 month outfits this last week. As I folded up and packed away some of her small clothes, I was a little sad that she is growing so fast! Everyone tells me all the time that they grow up too fast.. and they are right. My mom reminded me tonight that we are almost half-way through needing to buy formula.. where did the last 5 1/2 months go?

Happy Halloween!

Sunday we celebrated Madelyn's first Halloween. She wore a ladybug costume and looked super cute. First stop for trick or treating was Aunt Tisha and Uncle Cody's house. We spent a few minutes with them and then it was off to Grandma and Grandpa's house for dinner. Madelyn took a short nap and then it was back in the costume and off the Grandma Debbie's house. She was really tired when we got there, but she was a trooper and stayed awake to spend time with her grandma and great-grandparents. She was their first trick or treater! Last stop was Papa and Grandma Janet's house. She was asleep by the time we got there and refused to wake up- even though her Papa tried to wake her up. Overall, she had a great holiday.

Willing

Madelyn had her Physical Therapy, Occupational Therapy, and Speech Therapy appointments at Wesley this week. It was a long day for her. We started at 2:30 and didn't leave until 4:45. She is doing pretty well- her OT and SLP want to see her in a month. Her PT wants to see her weekly for awhile to work on strengthening her neck muscles. Her right side is weaker and she often leans her head to the left when sitting up. I never even noticed this before. We have some stretches and exercies to work on at home. During OT, she worked on reaching for a toy and bringing both hands together to hold a toy. She was able to reach for the toy and grab it with both hands, but it was uncoordinated. It was fun to watch her work (play) during therapy. When Madelyn is thinking really hard she will pucker her lips- it is so cute! Her SLP gave us a few things to do to help with feeding. I don't have any experience with feeding, so I thought it would be good to have another SLP give us some help with that. Yesterday, I spent some time making a list of all the things we need to work on that we have learned from the therapists at Wesley and Rainbows. It is a long list- filling up 1 1/2 pages. I felt overwhelmed today looking at it. I started stressing about all the things we have to get in- in such a short amount of time. I wished that I could just play with Maddie and snuggle and not stress and worry about getting everything in. So I just might put away the list for a few days... While we were waiting for Madelyn's therapy appointments, we met a couple of moms there with their kids. One actually goes to our church and has two children with special needs. She made the comment that God gives children with special needs to special parents. I don't feel "special" or believe that God chose Richard and I because we are amazing people. Another mother of a baby with Down syndrome once made the comment that God didn't give her a baby with Down syndrome because she was "special" but because she needed to be fixed. I know that Madelyn has a lot to teach us- I am learning to be more patient, to take one day at a time, to celebrate the small things. I have learned more about acceptance and unconditional love in the last few months than I did in the last 27 years. It's always been hard for me to stand up for myself and to correct others. I also let people walk all over me sometimes because I can be too nice. I know that along this journey, being Madelyn's mom will require me to change- to be more assertive to get her services she needs, to educate others when they say things that are offensive, and to stand up for her. I know it will be a change for the better, and I think that God sent her to "fix" me- probably in more ways than I will ever know. She has already brought more love and joy into my life than I could ever have imagined. I read a quote the other day that sums up my thoughts about being a parent of a baby with special needs- "God does not call the qualified; He calls the willing and then He qualifies them." I am so blessed to have her in my life. I ask Richard all the time- How did we get so lucky to have the cutest baby EVER?! We have started teaching Maddie sign language- After watching this video, we noticed she did some signing! Here she is signing "eat" after Richard says "eat" and then she signs "mommy" after Richard says "mamama"- she spreads her fingers and brings her hand up to her chin.. we think she did it on purpose!

Smiles

Madelyn started smiling almost 2 months ago- when she was around 11 weeks old. I am lucky to see her smile two or three times in a day, but today she was smiling a lot! It made me so happy to see her face light up over something her daddy or I did. I even caught some smiles on camera.




Madelyn turned 4 months a week ago. At her 4 month appointment she got a bunch of shots and cried of course. She weighed 11 1/2 pounds and was almost 24 inches long. On the Down syndrome growth charts, she is in the 65%ile for weight and 75%ile for height! She definitely has some rolls on her legs. This week she started eating baby food. Today she ate 26oz of formula, some rice cereal, and some green bean baby food. That is a lot for her, since she has been eating around 22 oz for the last few weeks. I don't think she likes green beans so we are trying some fruit tomorrow.



We bought Madelyn an exercise ball to work on improving her muscle strength. Here she is doing some Physical Therapy exercises.

Buddy Walk 2010

Yesterday our family attended our first Buddy Walk! It is an event to raise awareness of Down syndrome and raises money for the Down Syndrome Society of Wichita. Madelyn's team, Maddie's Marchers, had about 35 people and raised over $700. It was a fun morning, and I even won a raffle basket! The walk itself was 1 mile around the Heartspring campus. Then we had lunch and the kids played games. Maddie slept for about half of the event, but I think she still had fun. It was neat to see so many people with Down syndrome and their families. It was great how everyone is so supportive of these individuals and how much joy they bring to the lives of everyone around them.

What is Down syndrome?

Down syndrome is also known as Trisomy 21, because there is an extra copy of the chromosome 21. People with Down syndrome have 47 chromosomes, compared with the typical 46. At the time of Madelyn's diagnosis, the genetic counselor said that the extra copy of chromosome 21 was a random event that occured at some point when Richard or I was conceived. I don't believe Madelyn's Down syndrome was a random event- but part of God's plan.

Typically, children with Down syndrome will meet all of their developmental milestones, but at a slower rate than other children. People with Down syndromes can lead fulfilling lives. Many are included in regular education classes, some live independently, hold jobs, and even get married.

I see pictures of cute babies with Down syndrome all the time, but I have to say Madelyn is the cutest.