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.