Wednesday we went for Nolan's post surgery cardiology follow up visit. This is the visit that last time we ended up staying 22 days! Not this time!!! We are at home by the fire and just finished watching church on tv. We have had a nice relaxing weekend with his big brother and cousin. I did not get him out in the snow! It wasn't enough at our house to claim! The appointment was long. Nolan went through all the emotions he knows all in one visit. Happy, hungry, tired, mad, REALLY mad, and back to happy. Praise God everything looked good on his echo and EKG. The plan is to go back in two weeks to make sure everything still looks ok and them we will have another heart cath at the end of March. This scared me and I find myself really worrying lately. He went through so much last time we did the cath. The pulmonary hypertensive crisis really almost took him from us. This time we will be more prepared for it and take precautions to prevent that from happening. No one saw that coming last time. Of course, I still worry. I watch his every breath and constantly assess his color. Asking brent and my mom, "does he look ok? I look at him so much I can't tell right now!" They always say yes he looks fine. A verse I learned at a very young age popped into my heart and mind last night while I was laying in bed praying. Create in me a pure heart, O God, and renew a steadfast spirit within me. Psalm 51:10. I know I need to stop worrying and keep praying. Brent texts me this verse (even when we are in the same room sometimes)
This week is congenital heart disease (CHD) awareness week. I really want to become an advocate for Nolan and raise awareness so that we can help people in the future as well as promote research. There is no known cause for these defects in most cases. The treatment for CHDs has come along way in the past 20 years. I would love to see it do the same and more in the next 20 years. 20 years ago, there wouldn't have been much hope for Nolan, but there is now and that is amazing. I entered Nolan in a photo contest called #RockYourScar. It is put on by the little mended hearts association. It's purpose is to raise awareness and support families of children with CHDs. There are four days left to vote! You can find the link on mine or Brent's Facebook page or you can google the rockyourscar photo contest and search for Nolan Williams. You can only vote once!
Also, Nolan has a team in the color me rad 5k in Jackson on March 22. A percentage of the proceeds go to Blair E. Batson children's hospital. If you would like to join us the captains last name is Pentecost and the team name is strollin' for Nolan. We are scattered through the different time slots.
Sorry such a long post today! I had a lot to put out there! Please continue to pray for Nolan! Please say an extra prayer for his buddy, John Pearson.
Joshua 1:9
No comments:
Post a Comment