Saturday, October 13, 2012

Rainy, Gloomy Heart Day/Birthday

Today, we celebrate Katherine's 7th birthday and Charlotte's 2nd healthy heart day. However, right now, the weather mirrors my mood.

Worrisome things are going on in our household. For the past three weeks, on and off, Charlotte hasn't been feeling well. Lots of intestinal stuff going on and just all around lethargy. When she is awake, she often signs "sleep" and rarely wants to leave her little chair in the living room. She repeatedly signs "baby signing time" (meaning she wants to watch TV) and is incredibly hard to engage in play. At therapy, which she loves, she has been withdrawn and hard to motivate, often folding herself in half on the floor and refusing to participate.

I have tried to figure out what is going on--at first I thought a virus, then maybe a food allergy? I took her in last week for a strep test after Katherine had been sick with strep, maybe that was it? Nope.

Yesterday morning, I knew it was something more. This behavior is not typical of Charlotte. I took her to the pediatrician, and they did a blood draw (what a mess that was!) to check various levels.

As a parent to a child with Down syndrome, the big scary medical issues are never far from your mind. You are always waiting for the other shoe to drop. Children with Down syndrome are 10-20 times more likely to develop leukemia than typical children. I know the signs to watch for, I follow blogs of children currently facing this awful disease, and I have often thought to myself that I can handle everything that comes with Down syndrome--but that.

The oncology clinic at Children's hospital called yesterday afternoon to schedule an appointment. Apparently, while they assured me they are not diagnosing cancer, Charlotte's blood work was wacky, and coupled with her crazy behavior, warranted a trip to the oncology clinic to explore things further.

Our appointment is Tuesday. To say that I am a nervous wreck, is an understatement  I have visited a lot of clinics at Children's during the past couple years; I truly thought oncology would be one we could avoid.

It is ironic that two years ago, on October 12th, I was a crying, nervous wreck as cardiology called and had to move up Charlotte's heart surgery. Yesterday, on October 12th, I was a crying, nervous wreck as the secretary from the oncology clinic called to set up an appointment for Charlotte.

This could be other things--a virus, some sort of infection, etc. We are trying not to jump the gun, but that is easier said than done.


However, until then, we have some celebrating to do.

Seven years ago, my little red-headed peanut came into this world and made me a mom. Today, she is a strong-willed, independent girl with a zest for life. We often butt heads; mostly because we have a lot of personality traits in common, but as much as she stresses me out at times, I am so proud of who she has become. She has grown so much over the past year (I think elementary school does that to kids!), and has done so well. Her first-grade parent/teacher conference was on Thursday, and her teacher had nothing but good things to say. She loves reading/writing, and is a great asset to their class. At home, there are the fights between siblings, but for the most part, I can always count on her to help me out with Charlotte or around the house. She really is a "typical oldest" child and possesses a boatload of maternal traits.

Two years ago, I handed my younger daughter, who was in heart failure, over to a team of doctors/nurses who repaired her heart and made it a possibility that she will never have to have another heart surgery. Charlotte came home healthy, and full of life after only five days in the hospital. The amount of joy she brings to our lives is astronomical, and I cannot imagine life without her.

I said it last year, and I will say it again, October 13th will always be about my girls.

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Happy 7th birthday to my eldest and happy 2nd heart day to my youngest! Love you girls so, so much.

Off to make chocolate chip pancakes and open presents, have a good Saturday!


  1. Happy day to my two favorite girls! I love you!

  2. Wow. That's a lot of worry for a happy day. I'll be keeping Miss Charlotte in my thoughts ad prayers that you get good news next week.


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