"Incredibly better than I expected"

 


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 said he thinks our Columbus team is doing an excellent job and he'd be happy to just consult.

Thursday evening we got to have dinner with a mom and daughter that we met in the PH Facebook group we are in.  The girl is 11, has the same diagnosis as Madalinn, and living in Cincinnati.  We had a great time sharing stories and learning from them.  She was diagnosed at age 4 so they have been on this PH journey far longer than us.  

On Monday, May 2 we met with our regular Cardiologist, Dr. Phelps.  She went over the results of the MRI with us and said that Madalinn's results are "incredibly better than I expected."  She said her heart is looking almost normal and there is no scar tissue in her heart.  This is all such great news and we praise the Lord for his work.  Dr. Phelps did say that her pressures are still higher than normal and eventually the heart will tire out again and begin to fail.  This could be in a few years, in her 20's or even in her 30's...we don't know.  For this reason, she will continue to be on the lung transplant list as inactive that way if she ever needs it the process will be easier.

This weekend we went to a park and hiked a little over 2 miles.  Madalinn did amazing!  Just 6 months ago she couldn't even walk half of a city block.  We are amazed and so thankful!


The boys had their HHT scans in Cincinnati too.  Hosea passed them all and looked great.  He will just need the suggested routine follow ups ever few years.  Crosby did not have any brain AVM (vein malformations) but does have some in his lungs.  He will return to Cincinnati Children's on June 9th to have a CT scan to see how many and what size the AVMs are.  Both boys still show no signs of Pulmonary Hypertension.

During our trip to Cincinnati our house had 13 showings and we were in contract by Monday afternoon.  We have until July 7 to be out of our current house which gives us time to find a home and get moved.  We are looking to move to Josh's hometown of Centerburg, OH just northeast of Columbus.  Josh will continue to work in Columbus and we will continue to see doctors at Nationwide Children's in Columbus.  

Ways to Pray:
- Praise God for Madalinn's restored heart.  Pray for continued stability in her body.
- Pray for God to provide us a house in Centerburg and pray for us to trust and be patient.
- Pray for us to continue to trust God deeply.

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