National Down Syndrome Awareness Day!

Today is National Down Syndrome Day. A year ago I would have never have known this but from now on it will always be an important day in our family. I am so grateful that we have Madeline and for all the joy, blessing and humility she has already taught us. I can't imagine life without her.



As a part of celebrating this year, this video was put together by the IDSC for Life. We hope that you take the time to watch this video and remember that all life is precious.









We sent our photo in for the video but didn't make it in with all the other hundreds that were submitted. But we will share it with you. Here is our advice to ourselves 6 months ago. 

Physical Therapy

Now that Madeline is past her 6 week post-op she is allowed to get back to normal physical activity. For her, this includes physical therapy. I was worried about how much the surgery would set her back knowing that no matter what it is going to get any baby back a little. After the surgery she wouldn't lift her head up like she did before and when we were allowed to start tummy time she wouldn't lift her head off the ground or roll over, which she was doing before. After a few weeks of tummy time again she was back to holding her head up correctly but still wasn't rolling over.

Last week her physical therapist came and the first thing she did when he put her down on her stomach was roll over! The little show-off. He then gave us some exercises to help her roll from front to back and then back to front. As well as some to start strengthening her lower muscles to get ready to sit up. None of them are strenuous by any means and really just feels like we are playing with her. James loves it and is always asking to help Madeline roll and cheers her on. I love it. He is the best PT in the house.

That was one week ago. Since that visit she is back to rolling over from her tummy and is very, very close to rolling over from her back she just can't quite get the last pull to get herself completely over. It is amazing what just a little extra help can do. I am so grateful to have some awesome professionals to work with and that Madeline is really above and beyond. She is still technically right on track of any other baby her age who doesn't have Downs and who didn't have heart surgery. I know that as things get harder, like crawling, and walking, she will probably be behind for a bit but it will be great to know that we will have some awesome people to make sure she gets there sooner rather than later.

A conversation with Madeline

A week or so I posted about how I love cooing and talking with Madeline. I had a video that I wanted to post but our internet wouldn't allow at the time. Well we have now upgraded so I am trying again. This is a typical days conversation with Madeline.

Madeline is off of oxygen (part-time)

Well after 6 days of calling the doctors office we finally got word that Madeline's oxygen levels (95% saturation) that she can be off of oxygen during the day!!! Yeah! She is getting better every day. We found out she had an ear infection this past week and will need tubes. Hopefully we get those in soon. Everything else is looking great.

Hearing it

Last week we had an audiologist appointment for Madeline. Children with Down Syndrome often have some degree of hearing loss. We had her first audiologist appointment when she was a week and half old. I think of all of her appointments this was the one I was most nervous about. The thought of her not being knowing that singing her to sleep wasn't going to work, or that I couldn't just jabber to her and see her smile at my funny sounds. The audiologist spent about 3 hours running different tests on her to determine where her hearing was. He said that although it may be a little low it was close to average for a newborn. I can't explain my relief, joy, excitement. It seemed that with all the other medical stuff that was being thrown at us to know that she could hear me seemed to make everything else more doable.

Over the past few months I love to see her react to sounds. Sometime is jumping she James knocks down his block, or to watch her calm down when I sing. She loves to mimic you, she isn't a big talker but if you sit in front of her and talk to her, she will coo and babble back. It is an interesting thing that you don't really think about the small things until something makes you realize how wonderful they are. I never had a second thought about singing James to sleep when he was a newborn or watching him learn to talk. I think that Madeline will be a great teacher in appreciating the small gifts and accomplishments of life. I know that she may still need hearing aides, glasses, braces, etc. but in the end we will love her for who she is and be grateful for all the little blessing we get.

Down Syndrome Awareness - Maddox Lucille

This video is amazing. It is worth the 6 minutes to watch. Be an advocate for Down Syndrome and other's with special needs. It starts with you and me if we want to make a difference for these kids.

Cardiologist check-up

Today we drove down to Primaries for Madeline's post operation check-up. She had a chest x-ray, ekg, blood pressure, and oxygen stats taken. We met with the nurse practitioner and two cardiologists. They said everything is looking great. They don't hear any murmurs, which is wonderful. We hope that that means any residual holes left are healing. They took out her last stitches (She gets to take baths again!!!!). And we are taking her off of her lasik (medicine to keep fluid out of her lungs). All really good signs on the road to recovery.

The only thing she didn't pass was her oxygen check. Her numbers lingered around 88-92 and they want them above 96/97 consistently. So we are still on oxygen, bummer I know. It is interesting to me that her numbers were above 96 (out of 100) before the surgery when she had a gaping hole in her heart and now that it is fixed her levels are lower? Crazy I know. They said it mostly had to do with her lungs adjusting to the new pressures and such.

But overall we are thrilled with her progress. She now gets to have tummy time again, take baths, and wear normal clothes (she was only in zip up pajamas for the past two weeks to avoid pulling clothes over her bandages)! We are excited for all three and look forward to getting rid of the oxygen sometime in the future hopefully soon.

Madie after her first real bath in a month, in a onesie, after tummy time, and playing with her favorite toy!