Sweet Community and Lots of Appointments

We have had a busy and fun couple of days!

First, I am so excited to see that my most recent post, “Dear Richard Dawkins,” has had over 11,000 different people view it so far! That’s amazing because however you found that post – whether you initially agreed with Mr. Dawkins or agreed with me, hopefully your mind was opened to the fact that Down syndrome does NOT equal suffering. Pretty much the direct opposite.

Thank you for sharing that post. As I wrote in my Facebook status when I shared the blog, “I’m a mama bear and advocate and hope that through our family’s life and our sweet Gracie, people see the precious value that people who happen to be born with Down syndrome possess. Richard Dawkins, you know nothing.”

TailgateChallenge

On Saturday, we attended The Bell Center Tailgate Challenge. The Bell Center is where Gracie gets therapy twice a week and the Tailgate Challenge is one of the fundraisers they do each year. There are tons of tents set up that people sponsor to support their favorite college football team. The tents all have awesome food that is themed around their team! Our favorites were the Auburn tent’s Toomer’s Corner lemonade and the Alabama tent’s white sauce pork sandwiches. Gage loved the Kentucky tent’s cotton candy!

Hottest day in the summer meant daddy put our cold water bottles around Gracie to try and give her some relief!

The hottest day in the summer meant daddy put our cold water bottles around Gracie to try and give her some relief!

We also got to see my friend Mollie. My friend Haley got me together with Mollie and another friend, Tesney (both of whom have sweet kiddos with Down syndrome), after I got the prenatal diagnosis that Gracie would have Down syndrome. At that point, I was still at a place that was very fearful and anxious about the news. I remember getting home that night, so excited after meeting them, and telling Les that I had met some young, cool mommas who had some really precious kids. It made a lot of the fear of the unknown go away. I’m so grateful for this community that has accepted us and walked with us.

Mollie and I holding each other's sweet girls! Can't wait to hang out again.

Mollie and I holding future besties! Can’t wait to hang out again. Aren’t Wren’s pigtails the best?

On Sunday afternoon, we attended a get together for the Down Syndrome Alabama group. We got to meet some other families in Birmingham and I really look forward to getting together with them again. We will do fun stuff throughout the year and they will also bring in experts in the community to help us understand different things that we may encounter – medical, laws, trusts, etc. My notebook with all things Gracie is really coming in handy with all of these doctor visits and information we are learning!

notebook

Speaking of doctor visits…today was good, but a little rough! We had an early ENT appointment this morning. Sometimes babies with Down syndrome are born with narrow ear canals. This can cause chronic ear infections, hearing loss, etc. Gracie is one of those babies, and while she has not had an ear infection (praise the Lord!), she does have some fluid in her ear and we learned today that they recommend Gracie go ahead and get tubes to eliminate the fluid and make sure it is not impacting her hearing.

They were not able to perform a hearing test today because of the fluid, but Gracie’s ENT doctor feels good since she passed the test when she was three weeks old. He just wants to be proactive, and we agree. We don’t want Gracie to have any unnecessary hindrances as she develops.

We will have that procedure in 3 weeks. We will have to go back to the hospital that Gracie had heart surgery, instead of the outpatient place Gage went with his tubes, because she is higher risk. They want to make sure that if anything didn’t go according to plan, they would have every doctor they would ever need around. We are good with that!

After that appointment, we had to get some blood drawn for some labs our pediatrician ordered. I think any parent with a baby leaves these appointments saying, “surely there is a better way to draw blood.” The attempts today did not go well, but they finally got what they needed from her tiny little veins. Her bruised arms make me want to cry! Let’s also note that since Gracie’s heart surgery, she can REALLY cry.

When you have an ENT appointment, one unsuccessful and one successful blood draw, and a cardio appointment, you sleep when you can.

When you have an ENT appointment, one unsuccessful and one successful blood draw, and a cardio appointment, you sleep when you can.

Finally, after no naps and lots of tears, we headed to Gracie’s cardio appointment (for parents out there who are trying to fit a million appointments into one of your days off work, do not do three appointments. Too much. Way too much).

We love our cardiologist and his office. We got an EKG and another heart echo to check the repair. He is very pleased with the awesome work our wonderful surgeon did and doesn’t want to see us back for another 9 months!

So next up is the surgery to get tubes. But before then, we will be taking Gage to his first home Auburn football game. He’s been talking about it for weeks!

 

Posted in Every Day Stuff
3 comments on “Sweet Community and Lots of Appointments
  1. chismael says:

    You are in my prayers.

  2. Ginger says:

    I just love your “stories”….and, oh yes, the wonder of hearing a baby cry after surgery, or some other medical treatment!!! Abbey was almost 18 months before she cried and could let us know if she was hurting, etc.!! I’m so thrilled for Gracie’s marvelous progress…and so glad you have a GREAT support network!! All of you are always in my prayers!

  3. I love your blog SO much. My two-month-old also has DS and we are anticipating OHS next year. Thank you for sharing your experiences–they give me hope.

Leave a Reply, We'd love to hear from you:

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: