This weekend was good. Samuel was still doing well. He has been nauseated still off and on, but ever since the mountains he has been more like himself. We were so thankful for the wonderful time and memories with Samuel and our family. This weekend he enjoyed watching the tractors and concrete truck come to our house! He is excited about his new space! Saturday his buddies Knox and Nash came to play with him and Micah. They had fun with legos! Sunday he was able to go to part of church and after that our dear friends took our family on their familys pontoon boat! It has been years since our family has been on a boat! We enjoyed it so much! Monday, Samuel had a good day and we were all sad to say goodbye to his sweet nurse. She will be working at St. Francis in the NICU. The babies there will be in wonderful care! Samuel even played on his eyegaze! We also had a fun visit with my sister Hope and her baby Chloe Bekah! The day was good.
Monday around 6 we were all in the living room and Samuel's arms and legs became very stiff. My sister, Melody and I were immediately by his side. He had 10 second seizures (petit mal) in March and went on some anti-seizure medication. After a few weeks of him being lethargic and warn out, we decided to wean him off and see how he did. He did great! no seizures for the past 3 weeks!! We were familiar with these, so we thought he was starting to have them again.
After a few seconds of the familiar stiffness and his eyes staring into space he didn't come back like normal. Instead he stopped breathing, and his body became limp. Melody quickly gave him oxygen and he was breathing again. But his eyes were bigger than I had ever seen them, his pupils were dilated and then he started blinking continually, like in a pattern. We cried out his name and he was not changing. I ran to get the seizure medicine and tried to dial Tim while running back to him. He was still having it. I quickly picked him up to hold him close. By this point Melody and I were both sobbing and calling his name and praying. I am so thankful for my sister, that she was here. My other 3 children were also in the room crying and scared. This was terrifying. I know that Samuel has a degenerative disease and we have tried to prepare for his going home (heaven). But to actually see before your eyes this happening is so hard. I know God is good, all the time. I praise him for each day, but in that moment it is difficult not to panic.
I was holding him and then his eyes stopped blinking and his eyebrows started to twitch. His eyes were still huge and staring. I decided to call the kids around us and we started to sing to him the lullaby I always sing and my mother sang to me ” Jesus, Jesus, Jesus in the mornin', Jesus in the noontime. Jesus, Jesus, Jesus when the sun goes down.” During this song he finally stopped and looked around. It had been the longest 8 minutes of our life (it felt like hours). Tim walked in and I felt a wave of relief. I really thought we were going to loose him. I feel like I should be more prepared, but I don't know how to prepare.
I passed him to Tim and Samuel looked as though he was going to sleep, but his arms and legs started to move everywhere. He did this for about 15 min. And then he became nauseated and threw up. After all of that he was so tired and still. Tim called his wonderful neurologist, who has seen Samuel since he was 5 months old. He said to give him some more anti-seizure medicine and go to the er if it happened again. He also wanted to see him at 2 today.
Last night I slept near him and he did not have another seizure. He was uncomfortable and needed some extra pain relief.
Today, he was back to being tired and lethargic. We went to see Dr. Morales and he wants to try some different medicine. We are praying that this will help and not make him lethargic. We also weighed Samuel and he has gained 3lbs. this month! :-)
Please pray for Samuel. Also, pray for our family. It is so hard to see your child suffering and not be able to do anything to help. We trust in God and His plan, but pray He will
Comfort us. Also, I pray to respond to the scary times with grace and peace. The other kids are ok, but I know it scared them all. They cried and after he went to bed we snuggled and Melody read Anne of Green Gables out loud to us. It was good to laugh and enjoy this together. We all need the Lord and I am thankful for the peace He has given. Thank you for praying for our family and reaching out to us, we are so blessed!
I want to share this hymn a sweet friend sent to me a couple of weeks ago. I pray that He will still our souls.
Be Still my Soul
Be Still, my soul; the Lord is on thy side Bear patiently, the cross of grief and pain; Leave to thy God to order and provide In every change, He Faithful will remain. Be still my soul; Thy best, Thy Heavenly friend Thro’ thorny ways leads to a joyful end.
Be still, my soul; Thy God doth undertake To guide the future as He has the past. Thy hope, Thy confidence let nothing shake; All now mysteries shall be bright at last. Be still, my soul; the waves and winds still know His voice who ruled them while he dwelt below.
Be still, my soul; the hour is hastening on When we shall be forever with the Lord, When disappointment, grief and fear are gone, Sorrow forgot, love’s purest joys restored. Be still my soul; when change and tears are past, All safe and blessed, we shall meet at last.
Enjoy the pictures from our good weekend.:-)