Saturday, November 6, 2010

An agonizing U-turn

I will spare you all the majority of the details of our last month. It has been hard. It has been exhausting. It has been emotional. Caedyn had her first seizure in four months on October 14. I never was a real germaphobe before that date. Sure, I had the boys wash their hands before dinner and after using the bathroom, but never was I as manac about it as I am now. Caedyn's plethora of seizures started after she got the stomach flu. She couldn't keep her meds down and you can all guess what occured after that. She was in the hospital four days and had a multitude of episodes. Too many for me to remember. It was very reminiscent of the last time we stayed at HDVCH. So, yes, in order to prevent any more illness and quite possibly seizures in my house, I am officially what one would call a germaphobe. I think you would be too.

We are all on the mend now and Caedyn is doing much better. The newest turn of events in regards to her development is a diagnosis any parent would dread: Cerebral Palsy. We met with our CSHCS nurse, Diane last week. She has been following Caedyn since her epilepsy diagnosis and monitoring her development. Unfortunately, this visit was not pleasant. Caedyn's motor skill set has widened and not narrowed. Out of probably 25 developmental milestones children her age should be doing, I could attest to maybe one. While she has finally started crawling, it is quite wobbly and insecure. She is still uncoordinated in most of her movements and her hand gestures have gotten more prominent. While deep down in our hearts we knew that there may be something else going on with Caedyn, the diagnosis is likely clear. Jeff and I have decided to pursue this possible diagnosis as soon as possible. We feel like if we jump on more therapy, Caedyn has a good shot at being able to live with her disabilities, though hopefully mild. Interestingly enough, 50% of children with CP have seizures. We are starting to wonder if she was born with this and not the epilepsy and maybe her seizures arise from the CP. The neurologist has started a referral to the neuro-developmental clinic at Helen Devos Children's Hospital and we should have an appointment asap. We are anxious to hear the diagnosis, outcome and how to better help our child grow.
We ask that you continue to pray for our family. This possible diagnosis, in addition to the seziures, is quite overwhelming. We know, as always, God has a plan!


  1. Oh Jen, I am so sorry to hear about this possible diagnosis. I can't imagine the agony you have gone through this past year. I do pray that you find answers quickly so that you are able to get ahead start on whatever therapies might be needed in order to give her the best quality of life. My prayers are with you. I hope that God is able to bring you a hope and new understanding in his steadfast love, and of course healing in Caedyn's life. Take care, and hopefully this month will be better!

  2. I am not going to say all the typical things that mom's like us don't want to hear. Just know that I love you both and our kids are miracles. They will do great things in their lives!
    Love you lots!

  3. We love you and wish we could do more to help! My heart goes out to you and Jeff and know that Caedyn was given to you as a gift and you are a gift to her as parents. We will be praying for you as you take new steps and directions with from our fam to yours - Susie