Bless Madalinn's Heart

"I 've still got joy in chaos I've got peace that makes no sense I won't be going under I'm not held by my own strength 'Cause I've built my life on Jesus He's never let me down He's faithful through every season So why would He fail now? He won't" These lyrics from the song Firm Foundation (He Won't) have been our anthem for the past month.  We have often been asked, "How are you dealing with everything?"  My answer is always, "It is the Lord's grace and strength only that is sustaining us."  He really has given us a strength and peace that is beyond anything that we can conjure up on our own.  We are so thankful for this! Here are a few updates: - Crosby has his CT scan in Cincinnati and no AVMs were seen in his lungs.  In April this bubble echo was positive for AVM so now we know they are all small, too small to see on a CT, and he will just need to follow up in 2-3 years.  We are thankful for these results.

This blog has been mainly focused on Madalinn and her health journey since late October last year.  We have loved that so many of you have followed along and are praying regularly for her.  In my last post I shared about how the boys went to Cincinnati for HHT scans, but I left out one of the boys...Josh, my husband.  At the time we were not ready to share about his findings yet.  Today I am sharing with you this new journey that we are on.  This might be a long post, but I think I should start at the beginning. All of his life, Josh has known he has HHT (Hereditary Hemorrhagic Telangiectasia) a blood vessel disease. It runs in his family and they affectionately refer to it as "the bloody nose disease". When Madalinn was diagnosed with Pulmonary Hypertension she was tested for the genes that cause HHT and was positive for ACRLV1.  It has been determined that that gene is what caused her PH because of disease in her pulmonary arteries.   Once she tested positive, Josh and our

  Let's see.  Since the last update Madalinn has had an MRI, a sleep study, echo, lab work and visits with 2 cardiologist.  On Thursday, April 27 we went to Cincinnati to meet with Dr. Hirsch who is a Cardiologist who specializes in Pulmonary hypertension and HHT.  He showed us side by side photos of her heart from an echocardiogram from November and that day in April.  "The results are astonishing," he said.  The Lord used the medications to lower her pressures and allow her heart to heal.  In November her Right Ventricle (RV) was severely dilated and caused the Left Ventricle (LV) to be smaller than normal.  On the current echo her RV was much more proportionate and the LV was looking normal.  This was such encouraging news.   He says he looks for three things in his PH patients.  1. They are able to function during daily routine living.  2. Their tests are looking good  3. They are tolerating medications fine.  He said she pass all three and he was pleased!  He also sa

     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 catheteriza

  Goal 1: Last week Madalinn finished up her Pulmonary Cardiac Rehab.  She had 12 sessions of physical exercise therapy, 6 sessions of occupational, recreational, massage, nutrition, and psych therapies.  She worked hard and grew in strength and confidence.  On the final day of Rehab she did repeat endurance tests to see how far she progressed.  In the 6 minute walk test she walked 490 feet farther than she did in December.  In the cardiac stress test she lasted 2 minutes longer on the treadmill and her stats all showed improvement. Goal 2: After waiting a few months, last Thursday we met with Dr. Hirsch, the Pulmonary hypertension cardiologist from Cincinnati Children's, via Telehealth.  Our main goal was to get a second opinion.  He said he agreed with our Columbus team's choice in treatment, but had a few other suggestions.  We will meet with him in person at the end of April.   Goal 3: The final goal that we accomplished was reaching Madalinn's goal dose for her Remodul

Madalinn presenting about Pulmonary hypertension  at our homeschool co-op academic fair. So many of you continue to pray for Madalinn and us and we are so very thankful for that!  I want to share  a few updates with you. 1. Yesterday (Thursday, Feb. 17) Madalinn had another echo (heart ultrasound) to prepare for our Telehealth visit with the Cincinnati Cardiologist coming up March 3rd.  From reading the results on MyChart, it looks like her pressures have lowered significantly and the hypertension has decreased from severe to moderate!  This is huge (if we understand it correctly).  Her right heart still has severe dilation and dysfunction, but things seem to be going in the right direction! 2. Due to a bit of a covid quarantine delay, we are finally wrapping up Pulmonary Rehab next week.  She has come so far in her physical ability and endurance.  They will do another 6 minute walk test and repeat the exercise test she did before starting rehab to see how much progress she has made.