Yesterday, two amazing Family Care Coordinators came from our county Early Steps offices. They were at our house for almost two and half hours and they did several forms of evaluation/assessment and pre-screenings to determine whether or not Grady would qualify for therapy services offered through our county, and if he did qualify, which services they could recommend. I was really hoping for speech therapy in particular, but wouldve gladly taken any other therapies they thought would help get Grady talking more.
So imagine how confused we all were when Grady knocked all the assessments outta the park. He not only met the county goals, but exceeded them. Motor, Communication, Social, Adaptive, and Cognitive. All five areas. He killed it. I wasnt sure whether to be THRILLED with his awesome results, or bummed that he wouldnt be eligible for any help!! Hard to be disappointed with your kid when they score well on a test!
He had a great day at church on Sunday, playing with his nursery friends, tenderly giving a baby the binky that fell out of reach, and enjoying the Fall Festival at our church. He was happy and not whiny or pulling on his ear, though he did blink several times and he is still struggling to maintain his balance. But overall, he had a great day!
I had been looking forward to yesterday's Early Steps visit since they said it sounded like he would qualify, based on what I was telling them re: his vocabulary. The two coordinators arrived and were GREAT! They got right down on the floor with him and gave him time to warm up, though we have always joked that he's never met a stranger, so that didnt take more than 30 seconds. He didnt want to cooperate the way they wanted him to, but he was exceeding their expectations. For example, they wanted to see him stack cups of varying sizes inside each other. Instead, he flipped the cups over, pretended to take a sip, handed another cup to the coordinator, made "cheers" with her cup, and then smiled taking a pretend sip. Sigh. Over-achiever. He didnt want to play peek-a-boo (something he LOVES to play with Eric), so he was marked down for that, but the coordinators agreed that "he's so smart, he probably just thinks peek-a-boo is stupid or childish" and we laughed! He showed them everything they needed to see, and more.
I was stunned when the results came back and he had passed all the sections. They also did an MCHAT autism screening (since he was walking on his toes and has lost some vocabulary), and he passed that, too. From there, I tearfully asked them what I needed to do next since he clearly is struggling with some issues with speech and his balance is terrible and I just KNOW something is going on, and the both agreed that they would be sending us a referral for a neurologist if we werent already headed there on the 15th. They said they both witnessed his eye-blinking and while he didnt walk on his toes at all while they were here, he did hold his head as though he had a headache and he rubbed his eyes excessively. He also pulled on his ear and put his ear to his shoulder a few times. They agreed with the SLP that he is showing signs of neurological concerns. I was torn. I am glad that he passed the tests and glad to be on the right track, but scared that his issues are stemming from his brain.
Last week I made an appointment to meet with our regular pediatrician. I have mentioned Grady's balance at his ear appointments and Ive mentioned the blinking thing, but that was at the stitches appointment. ive never sat down and laid out all my concerns or all of his symptoms to one pedi in one appointment. Today, I met with her to discuss the referral and to get her understanding of the situation. She agrees that his speech and balance should have improved greatly when the tubes were placed in July. And she believes his tip-toe walking happens when his ears or eyes feel a headache coming on and he is looking to lessen the amount of information sent to his brain. Crazy how the vestibular system works. The ears, eyes, and feet work together to keep you balanced. When the ears or eyes or feet are getting too much information, it can cause a headache. So Grady is adapting and trying to decrease the headache by giving his brain less information. Incredible how adaptive he is. The nausea and vertigo and eye aches associated with cerebral abnormalities can easily explain why Grady has spurts of energy and "toddler boy behavior", but often prefers to lay down or sit and calmly watch a movie or play the ipad. He gets nauseous just walking and that's why he likes to be carried more than he likes to walk long distances. (Thats also why my back is a wreck!) He has managed this issue for God-only-knows how long, and Im hopeful that we can treat it and give him relief.
Neither Eric's nor my family have any history of brain tumors or brain cancer and we feel really confident that the pediatric neurologist will be able to give us answers and a plan of attack to help our otherwise-healthy Dude live a long and happy life. Grady is such a miracle, and I really think this is just God's way of kickstarting Grady's future career as a brain surgeon :)
We got this. He will be fine. He is happy and silly and as I just keep saying, he has NO IDEA the amount of stress he is creating in our lives :) And that is perfect :)
Our appointment is next Friday. We are not sure if we will get the EEG and MRI and other testing done that day, or if we will even have any more information that day, but I am grateful that each day has brought us another piece of the puzzle and is bringing us closer to a VERY happy thanksgiving this year :)
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