Word"full" Thursday

Evelyn's expressive and receptive language has taken off lately...here are just a few of her recent language accomplishments :)

Mama= Mama :)
Duh-duh= Dada, Doggy, Cat (pretty much all animals)
Buh-ba= Bye-bye, Bubbles, Bottle/Drink
Mmmmm= "Moo" (for what does a Cow say)
A-Dah= All done
Clap Hands 2 times= More, Yes, NOW! :)

I just love hearing her little voice!

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.

Things Are a Changin....

It's been a little over a month since I last made a post on this blog... yes, that is pretty sad. But I guess I never really called or considered myself a real "blogger" anyways. I just cant think of original and interesting things to post on here, nor can I find the time to even get on the computer outside of work. With that said- I am going to do better now that we are getting close to our 2nd child coming into this world and there are so many of my family and friends that I never get to see.

So... for updates on baby Sarah are concerned, we had a sonogram this morning for and thanks be to God, everything looks great. She is weighing in at about 4lbs right now and is already head down. We have exactly 7 more weeks to go until she is scheduled to join our family (unless she decides to come early)and I can't wait. I can't wait to see her beautiful little face and to take the first photo of Evie and her little sister together :)

Happy World Down Syndrome Day!!!!!

May god bless my little angel Evelyn and all the other angels across the world!!!

Doctors, Doctors, Doctors

Everytime I feel like I am staying on top of all of Evie's needs medically- I find myself booking her another Dr. appointment. She currently has a pediatrician, geneticist, pediatric cardiologist, ENT, two therapists and now a pediatric opthamologist. Well, she will soon. I am not sure how you check the vision of a 12 month old baby, but we'll see. I guess the good news is that by getting everything checked so often we always stay on top of anything that might be a concern. So far we have been extremely lucky with Evelyn's general health. She has never been "sick" really in her life, other than a 99 degree fever once and a bad cold. She had her ENT check up a few weeks ago and her hearing test was 100% normal! The lady checking her even said she is a really great booth tester :) Anyways, its kind of scary as a mom to have to be so proactive about possible health issues for your baby, as I always get nervous and imagine the worst. I am just very thankful to God that he has blessed us with such a healthy little girl!

Taylor Joins the Family

After you have had a child of your own and have gone through the experience of brining a new life into the world, your perspective on friends and family doing the same completely changes.

I went to visit my brother, his wife Shannon and their new baby boy on Wednesday night who was born at 5:57 pm and I couldn't help but get choked up. Not only because I was extremely excited and happy for them, but the memories of brining Evie into the world just one short year ago were still so fresh and vibrant in my mind. It might sound strange but I still vividly remember the smell of the sanitizer on my hands each time I entered the NICU to see my little angel so tiny and fragile. It is funny how the mind works.

Well I guess the good news here is that if I am really missing the smell of sanitizer on my hands- I only have 3 and a half short more months before I will be in that hospital room again bringing Evie her little sister :) Crazy.