I wanted to give you a brief update on our family and ask that you would continue to keep us all in your prayers. This has been a looooooong journey and we want to thank those of you that are still checking in and lifting us up in prayer.
Noah- Monday I dropped Noah off at golf camp and explained to his instructor all about Noah's condition. A few hours later I get a call that Noah is not doing well. Noah was dizzy, his breathing was labored, he had rapid heart beats, and was finding it difficult to keep up with the walking on the coarse. I was super nervous when I got to the coarse. Noah was emotional and crying that he just wanted his new heart. It was very hot and humid and that alone can do a number on cardiomyopathy patients. Noah has learned over the last two years to self regulate. This means he can run around but the minute he feels anything he stops. This was a situation that he could not do that and unfortunately the instructor was not listening to Noah. He knew his body needed to stop but the instructor was not letting him. He will be seen at UCLA tomorrow for a full work up and we would appreciate your prayers. As Noah is getting more and more fatigued and not feeling great he is also getting inpatient. He has broken down a few times and wants more than anything to feel better. It makes me anxious and it breaks this mommas heart.
Jonah- Because of our family history Jonah sees the cardiologist once a year for a work up. Since we found out a few months ago that Jonah tested negative for the rare disorder Noah and I share, I was expecting todays appointment to be uneventful. Well I should have known that is never the case with our family. Jonah's EKG came back showing some slow abnormal rythmns. He left the office wearing a 24 hour holter monitor. Hopefully this is no big deal as this momma is reaching her limit on how much more she can take.
Hannah- Praise the Lord this sweet girl is doing amazing. Her oxygen levels were 98 today. she is not getting out of breath and has more energy than I can handle. The doctors couldn't be more pleased at this point.
Jason- My sweet husband carries the weight of this family on his shoulders and it is a heavy load. Please pray that God would give him the strength he needs to endure each day.
Mel- I recently went to UCLA for a swallow test. We found out that my tounge and swallowing muscles have been affected by this wonderful MD disease. It is mild now and nothing I can do except eat small, slow, and often. I will be having pulmonary testing next to check my breathing. The danger with this disease for me is that eventually it could effect my respiratory muscles. Other than that I have been focusing on trying to do things I have always wanted to do before this disease progresses any further. We recently had fun renting segways, and I even tried horseback riding for the first and last time. Hey some things just aren't for everyone :)
We trust in God's perfect plan but friends there are days when we are weary. Days when the journey seems long and we don't have much steam to press on. Pray that we would be obedient to press on in faith, that we would be consumed by his love, and that we would experience his peace that transcends all understanding.