Well....life got crazy and my blog got left behind. But I'm back...for right now at least ;)
I feel that life has gotten even harder these past several months...but the pieces are starting to come together. Seth is in the process of getting diagnosed with mitochondrial disease. Devasting. This is not what we ever expected in life. At all. But it is making more sense as to what Seth has been dealing with the past few years. Around age 3 he started having fatigue, leg pain and muscle weakness. His naps were longer and he didn't have the stamina he once did. He had just learned how to really run. He loved to have races. His legs began buckling under him when he tried to run. He told me his legs were "tired." At age 4, He started preK at 4 days per week for 21/2 hours per day. Just to put his fatigue into perspective, this year, age 6, we are hoping to make it to school 2 days a week for an hour. His progression has led to new symptoms as well. His latest OT eval has him "below age 4" in his skills. His learning is delayed. His weakness is making it hard for him to hold himself up when sitting. He has severe heat intolerance and can't be outside at all in the heat. He has extreme fatigue and sleeps for 14 hours or more each day. His muscles are getting weaker and he's having respiratory issues. My boy used to ride around our neighbor hood on his bike. Now I push him in a stroller. There is nothing more heartbreaking than watching your baby decline. Now we know why Seth never wants to leave the house, what we once thought was anxiety..we now know is fatigue. We thought he had transition issues when arriving home from outtings, but it was exhaustion. Him not wanting to go outside to play...wasn't anxiety..now we know it's heat intolerance. Seth resists anything that will take the very little energy he has. Getting him to his therapy sessions is so hard. We have also decreased the time and activity level of therapy as well. We are learning and researching more everyday about how this diseases affects our Seth. It's a learning curve, like when we first learned of his sensory issues and autism. he has many other issues facing him but this covers the just of it. We have a lot of learning and processing to do with this on our plate. I literally give everything to my Seth and making sure he has all he needs in life. He is my life. He has made me who I am today. He continues to amaze me with his heart for Jesus, his sweet soul and his strength. Just yesterday we went to the grocery store with his new stroller....he told me "my legs didn't get tired at the store, I love my stroller." I'm so glad he can tell me things like this...I know we are doing what it right for him. The biggest thing is conserving his energy, letting him rest and keeping him healthy. This new road is scary but I know God will lead us where we need to be and show us how to care for our extra special boy.