April Update

     It's been awhile since I've updated.  Really not much has changed.  Madalinn is still doing well and her body seems to be responding well to the medications.  She has such great stamina that you wouldn't even realize that she has Pulmonary Hypertension.  We are so thankful that this is our current reality.  

     This week we reached an amazing milestone.  Since she reached her goal dose of Remodulin last month we were able to change concentrations.  Instead of having to change her pump and tubing every night, we now get to change it every 3 days!  Tonight was our first night of not changing it and she said, "it feels like what life was like before I knew I had PH!"

    Upcoming appointments:

Starting after Easter we will be having an uptick in appointments again.  Monday, April 18 she will have a chest MRI.  After her chest MRI, her case will presented to the Heart Cath committee for review.  They will decide if it is safe for her to have a heart catheterization.  The importance of a Heart Cath is that it is the only way to really know the exact pressures in her heart and lungs.  It will tell us how her body is responding to the medications.  We also need to know this information because her ENT wants to sedate her to be able to do some injections in her nose to stop her frequent nose bleeds.  Currently it is not safe for her to be sedated until we have Heart Cath results.

Tuesday the 19th an over night sleep study.  Thursday the 28 an appointment in Cincinnati with the PH cardiologist.  Monday May 2 an appointment with Dr. Phelps our Columbus Cardiologist.  

Josh and the boys will be in Cincinnati on Friday, April 29 to have tests to see how HHT has affected their bodies in their brains, lungs, and livers.  

How are we doing?  This is a frequent question.  And the real answer is that for the most part we are doing well.  Life feels normal and we are able to do everything we did before she was diagnosed.  We try to live in the present and not worry about the challenges of the future.  However, we are still learning what it is like to parent a child with a life threatening illness.  A question we've received numerous times recently is, "is this something that will go away or she will grow out of?"  The answer is that Pulmonary Hypertension does not go away, unless the Lord does a miracle healing.  Living in the tension of that is challenging.  How do you believe for a miracle while still facing reality?  

We are currently getting ready to put our house on the market and move to a quieter, more peaceful location.  I have found myself getting emotional while thinking about our next home and the future of our family there.  It causes questions to arise in me about Madalinn's future.  “How long will she live?  Will we get to enjoy her in our new home into adulthood?  Will our dreams for her to be a wife and mom come to be?” Preparing to move has really challenged my ability to live in the present.  However, I was reminded this week that God can handle my emotion.  He is there to walk with me through those dark moments of fears of the future.  I have realized that I have a belief that if I become emotional about our situation it is because I am living in fear and not trust.  In Spiritual Direction and in my conversations with Josh, I am undoing that lie and leaning into the fact that he created emotions, he has and does feel emotions, and he is my steady support.  He brought this verse to my mind this week, "Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me." -Psalm 23:4

So with all that said, how are we doing?  We are trusting God with each day.  No matter the future, He will be glorified.