Most days are good days


We celebrated our 10 year anniversary of our diagnosis day on May 16, 2018. It’s crazy how time flies. Parker just finished 3rd grade, and we are enjoying our summer. When she began the year, her reading was assessed at a 1st grade, 4 month level. We know she’s delayed in every academic area. And, we were thrilled that she had begun to read. Over the year, her teacher, Sped, Para Pro and our family noticed that she began to flourish. At the end of the year, she wound up testing at a 3rd grade, 4 month level! Her reading improved two complete grade levels! It does take a village, and I’m so grateful for the precious souls that help in Parkers’ progress.

Most of our days are good. Parker is my quirky, funny, happy girl. During Sunday School, her teacher was asking the kids what they do when they are sad. Parker emphatically stated she never gets sad. Not ever. Of course, that’s not true. But, I love that she feels so optimistic about her life. She recently asked me if she could live her live all over again because it’s been so awesome. Her spirit is infectious, and I adore her.

Like our other snowflake brethren, Parker is unique. She list of diagnosis is long and would make anyone gasp once they started plugging them into Dr Google. However, she pushes along and is my sunshine.

At this point, the bad days center around seizures. She has had them since 10/26/2009. Over the years, they have been well controlled with one here or there. In the past year or so, we have seen them increase to 2-3 a month. Her postictal migraine is actually worse than the seizure most of the time. It’s so difficult to not be able to take pain away from a loved one. We have friends whose kiddos have many seizures a day. Epilepsy is so unpredictable.

We are headed to Seattle to spend time with family – by blood and some my favorite hydro families. Parker had a seizure going through security and had a migraine during our first leg. Some times suck. But, my girls resilience and smile pushes us through.


4 responses »

  1. Hello! I’ve been reading through my story as my own little girl is being monitored for possible hydrocephalus (ventricles measuring around 14mm at 20+5 weeks). In utero, did she have any other unusual anatomical cranial markers? My little girl so far has all of the normal developmental markers, but they haven’t been able to visual her cavum septum, and I can’t find a lot of research on the internet about it. Just curious if you had any experience with things like this during your pregnancy. On another note, I’m so glad your family had such a positive outcome! She looks so happy and beautiful, and it’s giving us a lot of hope.

    • It’s more likely your little one has Ventriculomegaly and not Hydrocephalus if she’s missing (or a thin) SP and/or Corpus Callosum. I would recommend a MRI around 30 weeks to get a better idea if the SP and CC are there.

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