What's Emmy up to now?

Whew! What a four months it has been with this girl.

She radiates joy. She loves  to "talk." She has a little sass to her. She proves stereotypes wrong everyday.

I haven't been on here in a while, and since a lot has happened recently and I'm headed back to work this week, I wanted to write an update.

------(Side note: I know these blog posts probably get long and redundant, but I love having all of this written down for myself to look back on our journey. And if one scared momma that just received a DS diagnosis reads this and finds her feelings validated and/or a little bit of hope, that is my goal. So, sorry if there is too much rambling. ha)------

Therapy, therapy, therapy. As you know, I had such a love/hate relationship with this in the beginning. While I was pregnant I began researching therapy for children with DS and early intervention. I knew Emmy needed it and I wanted her to have every advantage she could have. I guess I just had to swallow my pride and throw a quick pity party to get where we are today. Emmy currently does 3 hours of therapy a week. She does physical, occupational, and speech therapy.All of her therapists have been WONDERFUL. They have become like a second family, and I am so thankful for them.

Emmy LOVES physical therapy. Even the day she was born, my doctor commented on how great E's muscle tone is. (People with DS have hypotonia-weak muscle tone.) Her therapists have all reiterated that. She is meeting all of her gross motor milestones on time at this point. We love her physical therapist and are so thankful she is going to be able to travel to daycare and keep seeing Emmy when I go back to work. She brags on Emmy every week and tells me that she is "amazing!"I have to agree ;) We know that delays are possible and will be more evident among her peers as she continues to grow and develop, but for now we celebrate each victory, and boy have there been a lot lately!

Here are some recent PT sessions of hers.

Emmy also does occupational therapy weekly. She mostly enjoys that as well, but isn't very fond of the stretches she has to do to remedy her torticollis- Torticollis is one of a broader category of disorders that exhibit flexion, extension, or twisting of muscles of the neck beyond their normal position. This can happen to anyone. Emmy is showing a little bit of a delay in OT simply because she isn't reaching as well as she should be for her age. Honestly she hates for anyone to try to make her arms do anything she doesn't want them to do. So much sass. lol

Lastly, speech. I always get the "What does someone that young do at speech therapy?" Honestly, I had no idea either, before having Emmy. Right now this therapy is just working on eating. E had such a hard time eating and gaining weight in the beginning, this was so helpful and she is now doing GREAT. Low muscle tone affects everything, even the ability to eat without getting too tired. She eats during every session and does some mouth work to strengthen those muscles. 

Emmy will continue all her therapy at an in-home daycare starting this week. This is such a relief and time saver for Wes and I not to have to take her after we get off work. Have I mentioned how awesome her babysitter is for allowing them to come there?! Seriously, a life saver. 

Now, other than therapy, the other big news is about Emmy's heart. We went today for our monthly cardiology appointment where they performed another echocardiogram. As you recall, my last update around the time she was 2 months old, we got exciting news that the VSD was closing on its own. She went again at 3 months where her doctor said things seemed to be about the same, and he wasn't overly happy with her weight gain. I guess I had just gotten my hopes up after that previous appointment and assumed everything would be perfect this next time. Her cardiologist just had to be honest and realistic and remind us that we can't rule out surgery until the hole closes completely. Which at that time it had not. So, back to today. The results of this echo showed that the hole is even smaller! YAY. Emmy also went up a little in weight percentiles for girls her age with DS. Her breathing was great, too. All of this led her doctor to believe that we may avoid surgery altogether. He still isn't 100% certain but he is very pleased with how things looked. He even looked back at one of her very first echo's when she was 11 days old and said, "The way her VSD looked back then really led me to think it was one that we would definitely have to do surgery on, but after looking today, I think we can avoid it." Thank you, Jesus. 

So, we've had a good couple of months with our best girl. When I had her 4 months ago, August 8th seemed like a long way away. But, its here, and I know Emmy is in the best hands. Please pray with me for a smooth transition for us both. I am overwhelmed by the prayers that have been prayed over her life, and we rejoice with all of this good news. In the meantime, I am going to enjoy the next day and half with my girl, soak in the cuddles, and wrap up our Summer with a 4 month check-up and shots tomorrow. Yuck :(

Thanks for loving us and praying for us.

And, because I take too many pictures, I'll add a few here :)

-Morgan