Bless Madalinn's Heart

 We hope you all had a very nice Christmas.  We traveled to Auburn, Indiana to visit Chloe's family Christmas weekend.  It was such a lovely time!  Josh and I performed Behold the Lamb of God (album) with my sister and her husband for their Christmas Eve service.  It was fun to share God's story through song with everyone and give them a peek into our yearly family Christmas tradition that we have done for the past 10 years in a living room.  As this year draws to an end, we are continually thankful for the vast amount of people who have prayed, given (food, money, childcare), and cared for us so well.  In the midst of such trial we were so thankful to be surrounded by so many people from different parts of our lives.  It was amazing to see the Church (capital C) work together so well.  This month I started monthly Spiritual Direction.  Basically, I meet with a Spiritual Director who helps me listen to what God wants to teach me.  S...

  Yesterday we had our first post hospital check up with the cardiologist.  It was a big day that started bright and early.  She had an echocardiogram, EKG, 6 minute walk test, lab work, and a 24 hr halter monitor. The great news is that her Echo showed signs of improvement in her heart which is a direct result of her medications working!  Thank you for praying for that.  Her heart is still seriously sick, but things are moving in the right directions!  Praise to our God who heals! She did great during her 6 minute walk test.  She walked more steps with fewer symptoms! She didn't have to stop at all and her heart rate only got up to 120.  When she was the in the hospital going from her bed to the bathroom made her heart rate soar to 145, so 120 after six minutes of walking is SUPER!   We knew she was going to rock this test because we have seen a difference in her endurance in normal daily living.  She can go to the grocery store or for ...

This week the boys went in for their Echocardiograms and EKGs.  They were excited to get to experience a little of what Madalinn has done.  It was an early 7:15 visit and they did amazing.  The great news is that neither of them have any signs of Pulmonary hypertension!   Soon we will be getting gene testing kits in the mail for the boys to be able to submit spit samples.  It will be about a month before we get those results back.  The test will be specifically looking for the gene that causes HHT. Speaking of genes, we had an appointment with the genetics person on Tuesday.  She mainly knew of this gene as it relates to HHT.  I'm looking forward to speaking with a cardiac genetics person about how it relates to PH.  What we do know is that severe forms of HHT can cause Pulmonary hypertension because of causing too much blood flow to the heart. This happens is about 13% of people with HHT.  That is not what is happening with Madalinn. ...

As I remember back to the first week in the hospital I realize how much we didn't know.  Doctors were doings CT scans, MRIs, heart catheterization, and so much more to discover what was going on inside her body and what was the root cause of her Pulmonary Hypertension.   At first we thought it was one thing causing it, but after more tests that was ruled out.  At that point they said it was idiopathic (no known cause) but we were still waiting for genetic results to come back.   This week we were informed that Madalinn has the ACVRL1 gene.  This gene causes HHT ( Hereditary Hemorrhagic Telangiectasia) and in some people it also causes  Pulmonary hypertension.  This is the answer of the Why.   Many people remember that I mentioned that some genes are not receptive to medications.  This is what our doctor said, "it is one of the genes that has been found to be not AS responsive to medications.  We will still be  aggressive with her me...