We Hate Petechiae

I mentioned in previous posts that Gracie has been having a tough ride on the sickness train the last few months. In addition to not feeling well, she wasn’t eating a lot, and not napping well at school, so she was exhausted and dropping weight. It’s been a pretty stressful time as we make decisions about what is best for Gracie right now.

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The other week, I took Gracie to the doctor to have an ear checked and to show them a random rash that had shown up. Her pediatrician wasn’t in town on that day, but I was able to see another great doctor in the practice. As soon as he walked in and saw her, he said, “well, that’s petechiae.” Immediately my heart sank.

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When I first found out Gracie would have Down syndrome when I was 16 weeks pregnant, Google and I had a horrible relationship. It seemed to only show me the most terrifying and negative information about Down syndrome. One thing I remember reading was that children with Down syndrome seem to be more prone to get leukemia, and that one of the signs of leukemia is petechiae.

The doctor immediately did a physical exam to check for other things and then called for blood work.

Friends, aside from handing my baby over for open heart surgery, waiting those 10 minutes was the most terrifying time I have had with Gracie.

I’m so happy to say that he came back and said her platelet count was good and based on previous blood work we had, he felt good about it and decided the petechiae was popping up because she was sick and that was part of her body’s response. After a few days, the petechiae disappeared, and Gracie seemed to feel a little better.

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This journey and these moments sometime seem like a lot. It is so much for my mind to process and comprehend. So much to keep up with. So much to decide. So much. For someone who is already a bit of a control freak and overanalyzes things to the best of my ability, this journey with Gracie fights those things in me every step of the way – and I am so grateful. As much as I hate the lack of control sometimes, I am truly grateful because I know these are ways that God is showing Himself faithful in all things and showing me that He is the only one in control. He’s showing me that I need to do more resting and trusting – the things I am so bad at doing.

I had a Bible study last night and we were talking about the Exodus and how God’s people were wandering for 40 years. I was reminded that I am to trust in God’s character more than my circumstance – and God’s character is good, true, and loving. I am grateful for moments like I mentioned above so I can have them to look back on and see God’s faithfulness. Even if the doctor would have come back in with different news, I pray I would have still responded with remembering God’s faithfulness in my life, even when the circumstances are difficult. This is probably the biggest lesson God has used my Gracie to teach me. I was so upset and confused when we initially got her diagnosis, wondering how it could be part of God’s perfect plan – but here we are, and as I look back and feel so ridiculous for ever questioning Him, I am so grateful His plan was bigger than me and what I can comprehend.

If I could ever go back, I would beg for Gracie over and over again. He truly gives perfect gifts and knows what is best for His children.

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So here is the blog post reminding me of this. Here is my reminder that I can look back on and remember in times when I forget.

We have decided to pull Gracie out of school for now. I am so grateful my mom is able to watch her while I work three days a week, so Gracie can get well, eat well, sleep well, and get a lot of one-on-one therapy time. We will get her around other kids in the future for some peer modeling, but I am very confident that this is the right decision for her right now.

And to end on a really precious note, here is Gracie realizing that I just turned on her sign language DVD (which she clearly loves)! My favorite part is her little wave when the DVD says, “hi!”

Tagged with: ,
Posted in Down Syndrome, Gracie
5 comments on “We Hate Petechiae
  1. Brooke McCollum says:

    Sweet Gracie’s face could get anyone through any bad day!

  2. Ginger says:

    God always reminds us in the most powerful ways that He is always in charge and has all of you in His arms!! I am SO thrilled that Gracie is doing well…and all of you are taking care of each other!!

  3. Stephanie says:

    So glad she’s doing well. We had a similar petichiae last summer… that was awful!

  4. Cheryl says:

    Jamie, Your faith inspires me…thank you.

  5. zavanagor says:

    enyoing get better wen the years pas

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