Today should have been an incredible milestone and the day my family was to be united for the first time. We were supposed to take Nathan home from the hospital, but Isaac got sick 2 hours before were supposed to leave. At first I was angry with God, everything has to be so hard. I had looked forward to this day for so long. But then I realized he answered prayers by keeping us here, to keep Nathan healthy. God allowed Isaac to get sick while Nathan was still in the hospital instead of when we were home. Even though it wasn't the best circumstances, God protected Nathan.
The last week has been a flurry of activity still trying to get the house ready, I had to go back to the ER last Friday because of pain. I'm sorry I haven't been good about posting, emailing, or calling people back.
Nathan is a sweet boy. His smiles and dimples still melt everyone's heart. When people come to his window to talk to him, he breaks out in a huge dimple grin. He is getting very close to turning over. He is getting so vocal, and making lots of new noises. Isaac is filled with joy. He makes up his own songs to sing. Last night he was singing about how he loves the moon, and that the cow goes moo. He has A LOT of energy, and is filled with laughter. He is compassionate to other people. The other day when I was hurting, he brought me a bottle of water and said, "Here Mommy, take a drink. It will make you feel all better." I am thankful for both of my boys.
Last week, Nathans heart dramatically got better. There was months without any change to his condition. The Dr.s are amazed how from the last test 2 weeks ago there is such a dramatic change. I give all credit to God, who was answering many prayers. He still has a slight thickening of the ventricle wall, and will continue on medication, but it is significantly improved. He still is not eating very well. They say if he loses weight we will have to do a tube again.
I am overwhelmed by so many emotions. I am sad, it will be hard to leave. There are many friends we are leaving behind. Many who have supported us through a very difficult journey. There will be a big transition for everyone. I am a little worried. I have been praying for Isaac. He will no longer be the only one at home, and will have a little brother requiring a lot of care. I know do not be anxious about anything right. That is a sin I still struggle with. Emotionally this journey has been very hard for me, it will be a long healing process. I am dealing with Post Traumatic Stress Disorder , social anxiety, and many other things.
We will be released to my Mom's house in Saint Louis. We are be required to stay in the area for 6 months for follow up treatment. We will still go into the hospital 2-3 times a week for outpatient care. Everyone's outside activity will be severely limited. Nathan cannot leave the house but to go to the hospital. Isaac cannot go most places, since he could transmit a virus to Nathan. I even have to do grocery shopping in late hours to reduce exposure. We will be setting up Nathan's IVs and medications at home, which is a little overwhelming.
If you could still stand with us in prayer, this journey is not over. Pray for Shawn to be head our household according to God's word. Please pray for our marriage. Pray we would submit to God, and lovingly serve each other. Pray for me to be the wife God has called me to be. Pray for Nathan to eat so he will not need tubes. Pray for protection for Isaac's spirit in this time, that he will still get the positive attention he needs.
This has been a disappointing and roller coaster of a day. God is good, and he will continue to answer prayers.
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