Therapy...therapy... therapy. Finally progress in sight.

Today was our first day of in-home therapy through Fairfax County early intervention. I was actually very impressed with the therapist, and for the first time in a long time, I feel confident that Evie will be making a lot of progress, and SOON! For the past 5 months Evie has been making tiny, tiny steps in her gross motor development, but nothing like we had hoped or anticipated. She is literally just "sitting" at a plateau. The private therapists we have been taking her to haven't been able to accomplish anything with her, and beyond that, I don't think they even really get her at all... what motivates her, what she does and why, her personality type, what sets her off, etc. Its very frustrating. I have been so close to just stopping PT all together because I honestly feel like I can do better at home what she is getting at therapy, and she definitely responds better to Mom, of course.

With that said, our first visit today with Stacey went really well. Of course Evie did spend a small portion crying, but at least we were making progress. She was the first person in a long time to comment on Evie's lack of abdominals or lack of using her abdominals and the effects of that it has on her willingness and ability to crawl. Evie absolutely LOVES to stand, so we are going to use that to her benefit by beginning with crawling up the stairs, rather than across the floor. This way she gets a reward of standing after being briefly on her knees. It was tough for her the first time, but I can envision real progress here. And at least it's something new for her. We are also going to work on building her stomach muscles and rotating across her body.

I hope that in a few weeks I can report some real accomplishments in this area :) Wish us luck!!!

Cardiologist Update

The past 14 months have been pretty good health-wise for our family, including Evie. We have been blessed with almost no sickness except for a few colds and runny noses. No ear infections, no hospital visits, no vomiting, no fevers and thank god no broken bones. With that said, we have a lot to be happy about when it comes to the health of our little girl. However, when she was born, she had 3 holes in her heart. It was a very scary thing for new parents to understand, nevertheless finding out your child has Down Syndrome. I just wanted more than anything for her to be healthy, and I still feel that way today. Well... we went to the Cardiologist last week and got some not too great news. We knew when she was about 7 months old that two holes had closed and she has one hole left. The cardiologist seemed very positive about Evie's condition and her hope for a healthy life in the future. Honestly I have barely even thought about that remaining hole over the last 7 months- I was so positive that it would close up on it's own. She is such a strong and healthy little girl. Well, unfortunately the hole is still there. Her heart is having to work harder to pump blood and her heart is becoming slightly enlarged on one side. With that said, it looks like the very thing we were confident would NEVER have to happen, may just have to happen. Surgery.

I am doing my very best to be optimistic and think of only the best case scenario, but even that makes me sick to my stomach. If she is a good candidate for a device to close the hole, they will deliver it via catheter through her leg and into her heart. If that doesn't work, its open heart surgery. Even thinking about my little girl going into surgery and under the knife is the hardest thing to imaginge and I dont know how I am going to get through it.

We have 6 more months to wait before we know anything. We then will go back and the cardiologist will take another look. At that time they will decide what type of surgery she will have and then we have to think about when. She is so small, so helpless and my little angel.

Please God- bless us and make a miracle happen.