I did not mean to be MIA for so long. It's just that things are crazy here. Ridiculously, gloriously crazy. And I am loving it! Our family is smack dab in the middle of a move of God, and we are buckled in hanging on for dear life. I am just dieing to write every single detail, but I cannot. I do not want this to be a teaser, but I do want your prayers. We are fighting with all our strength in prayer. And while I have always thought "unspoken prayer request" were silly, this is mine. I want to scream the request, but I cannot for fear that it would jeopardize what we are fighting so hard for. So with that cryptic message, which I do apologize for, if you feel led will you just pray as the Spirit leads you? God knows all about this. Thanks for all of the sweet messages over the past week. You are simply the best, and I appreciate each and every one of you.
Last week was a very busy week for us. We had to take Jamesy to the children's hospital again to visit with his neurologist and opthamologist. I believe that I have mentioned here that Jamesy has been having seizures and that they were increasing in intensity and frequency. We are often frustrated with the level of medical care Jamesy is given in our hometown, and have not been taken very seriously here about our concerns for him. So I went to this neurologist appointment (5 hours from our hometown) just begging God to allow Jamesy to seize in front of the neurologist, so that we could get help for him. Jamesy had a few seizures in the waiting room, and I was hopeful. We met with the neurologist, and he listened to us and believed that Jamesy was indeed experiencing seizures. Because we came from so far, and Jamesy really needed to start a treatment plan for the seizures, the neurologist admitted Jamesy for overnight evaluation with a 24 hour video EEG. We had expected to travel 1.5 hours back to my sister's that night and then back to the hospital the next day for Jamesy's opthamologist appointment. So we were not at all prepared to spend the night in the hospital. However, God was gracious, and overall it was a great experience (minus the wearing the same clothes as the day before and Jim and I sleeping squished side by side on a couch part - ha!). Jamesy had hundreds of seizures while being monitored. There is no doubt that that is what he is experiencing. The neurologist said he was having many different kinds of seizures, and that his brain waves works in a very abnormal way. Basically Jamesy's brain is always ready to seize at any given moment. He has started on anti-seizure meds, and we are noticing less seizure activity but a lot of tummy upset. The hope is that some day he will be off of these meds, however the neurologists told us this would be a long road of trial and error for Jamesy because of the significance of his seizures.
At the children's hospital we were also given a final and definitive diagnosis for our Jamesy. If you remember in this post I had said that there was a lot of confusion about Jamesy's initial diagnosis. The radiologists at the children's hospital finally examined carefully Jamesy's MRI results from this summer and concluded, that without question, Jamesy does indeed have Septo Optic Dysplasia. So that is that. Now we proceed forward knowing this is his diagnosis. Jamesy also has significant developmental delays. We have finally gotten him enrolled in Early Intervention, and he will soon be receiving therapies during the week. He is delayed in every area except gross motor - this makes us laugh, he is such a monkey running, jumping and moving constantly. Jamesy also has a sensory processing disorder, and we are in the process of learning whether or not he also has a hearing impairment. Jamesy did go to the opthamologist last week while we were at the hospital, but nothing more was able to be determined regarding his visual acuity. We continue to wait as he grows to determine what he really can and cannot see.
At times Jamesy's diagnosis can seem overwhelming. We are still in the very beginning stages trying to figure out exactly what his SOD is impacting, and it may be years before we fully understand that. We do not know his future, and that can make me fearful at times. But really, none of us know our future. Jim and I continue to raise this boy, our precious son, in the nurture and admonition of the Lord, as well as our other children. We pray daily for his salvation and that God would make much of his life for His glory. Jim and I are carefully learning how to balance Jamesy's special needs, while at the same time not holding him back from his full potential in Jesus Christ. This is all new to us. We chose Jamesy knowing he had special needs, but Jim and I are so clueless in this. Everyday is new, and we beg God's grace to pour over us and cover all of our mistakes.
Sometimes I still get so overwhelmed and choked up thinking about how God would entrust us with this responsibility of raising these precious children. His ways are so far above our ways. I am blessed to be written into Jamesy's story. I am so, so blessed.
As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts. Isaiah 55:9
Taken on Jim's ipad.