Wednesday, July 20, 2011

So what is Harper Kate's Diagnosis?

I wanted to pause in the story for a day and let many of you know, who don't already, what Harper Kate's official diagnosis is.  Harper Kate has a lot to overcome, but I know God has made her exactly as she should be.
  Before Harper Kate was born, she was diagnosed with something called Dandy-Walker malformation..  Dandy-Walker is a cyst (a pocket of fluid) in the cerebellum part of her brain.  This makes gross motor skills very difficult because her muscle tone is very low.  In some cases it can affect intellectual development, but for the most part it is the gross motor/fine motor skills that are the most commonly affected.  She gets physical therapy and occupational therapy once a week, and feeding therapy every other week for now.  Hopefully all of these will work together to allow her motor skills to develop quickly.  She has already made huge amounts of progress.  Her eyes track a lot better than they did when she came home from the NICU, her neck is slowly getting stronger and she is starting to turn her head toward sounds.  These are all huge accomplishments.  Many Dandy-Walker patients end up having to have a shunt put in their brain for swelling from excess fluid.  Luckily, and through the grace of God, she has not had any swelling yet.  We go for head ultrasounds every 3 months to get it checked.  God has been very gracious to us so far.  It would be a wonderful thing for her to get through life without having to have a shunt since she has so many other struggles.
  Harper Kate also has something called agenesis of the corpus collosum.  This is commonly diagnosed with dandy-walker patients as well. The corpus collosum is a strand of fibers that connect the left and right brain.  Information travels back and forth over these fibers developing them so that our brains can develop abstract & critical thinking.  It also helps with social skills.  For example: being able to see someone's facial expression & know what is appropriate or not appropriate to say.  Missing these connections will make it difficult to bring the left & right brain together, but it's just something else she must overcome.
  After she was born she had a MRI.  The MRI showed that she has something called polymicrogyria in the front right part of her brain.  She has extra "folds" in this section of her brain.  Basically, what that is causing for Harper Kate right now are her seizures.  Her seizures are called "focal seizures" where only her left eye & sometimes corner of her mouth twitches.  They are not full body seizures.  Polymicrogyria, as the other abnormalities all have a very wide range of developmental issues.
  These are her main 3 abnormalities of her brain.  She also has something called a molar tooth sign which is almost always associated with something called Joubert Syndrome, and the hospital geneticist had her tested for this.  It is extremely rare and so the doctors don't know all of the genes that contribute to it, but the ones that they do know of they tested HK.  The results were inconclusive, so I guess we won't ever know for sure if she has this genetic disorder, but I'm trusting God that she doesn't.  One thing we do know is that many Dandy-Walker patients and Joubert patients have associated heart and kidney problems and thankfully Harper Kate does not have any other problems from the brain down.  Jarod & I just really didn't want her to have anything genetic, although I guess it is always a possibility.  She also has a micro-deletion on her 16th chromosome.  There really isn't much information about the actual deletion she has at all, so for now, we just know it's there. :)
  All of these seem to be extremely overwhelming and believe me for a while they were.  I didn't know what I was going to do when I got all this information.  How would Harper Kate overcome all of these?  How will she function with so many parts of her brain formed abnormally?  It took a little bit, but I came to this conclusion.  God has formed her in His image.  He, and ONLY He knows what her prognosis will be.  Doctors can give me information, but they do not know what she will be able or not be able to do.  I have chosen to believe that God can help her develop perfectly or develop as He chooses.  Maybe God has just stacked so much against her so that she can amaze the doctors!  We really won't know what her development will be until she is older, so for now, we're loving life with our little peanut.  With Harper Kate smiling all the time and starting to talk to us brings Jarod and I the joy and strength to get through each day with her. 
  I'd like to thank you all for reading.  This has been a difficult journey I'd never wish on anyone, but for some reason God has us going through it.  I feel like He wants us to share this story with everyone so they can see His power.  It means a lot to me that so many of you would take the time to share in our story.  I pray it will be blessing to you or someone you share the blog with.
  "For you created my inmost being, you knit me together in my mother's womb.  I praise you because I am FEARFULLY & WONDERFULLY made.  Your works are wonderful, I know that full well."
                                        Psalm 139:13-14


  1. Courtney,

    Your faith is truly inspiring. I can't even begin to imagine the struggles you face daily as HK's mom. Thank you so much for sharing your story. The Lord is certainly being glorified through her life!

  2. Perfectly written. And now I finally know what HK's diagnosis is. Sad that I had to learn it on here :) Clearly it didn't matter bc she's the cutest thing ever but now I know! Everyone is so thankful you are writing this. I share it with everyone!

  3. Courtney,

    Jarod and you are such an inspiration and a true witness to Christ. Seeing and reading about precious Harper Kate is such a testimony to how God can perform miracles and is completely in control. I have so much respect for y'all, and your story and faith truly is inspiring!

  4. Courtney your faith and this story is so inspiring! I pray that God will give yall comfort and strength. I pray that Harper Kate will overcome all of this. God is the great physician, so keep your faith strong! Love, Abby Casj

  5. Courtney...I think that your blog is perfectly written in a way to explain what is really happing with Harper Kate. I pray daily for her and you and Jarod. I believe God is showing what trust he has in ya'll as parents to share His miracle through Harper Kate. What a testimony that she will someday be able to share with so many. Thanks so much to you and Jarod. Much Love....Ann

  6. Courtney, we met briefly awhile back at a medical function, I think. I hope this isn't weird for me to be writing this since we don't know each other well, but my husband, Rory, had this page open on his computer, and I read it, too. I fought back tears reading, both because of how hard I know this must be for a new parent and because it is so evident that God is working through you. We have an "HK," too (Hallie Katherine), so that will help me remember to pray for your little one. Anne Myer

  7. Thank you all so much for your sweet comments, love & prayers. We know that God alone can heal our little angel, and that the prayers of the righteous are being heard by the Great Physician. It means so much that you all take the time to pray for us. We are truly blessed.