Maksim had his first neurology appointment yesterday. It was at Utah Neuro Rehabilitation in Murray, UT. Let me preface this by saying that we are the one who initiated the neuro consult due to concerns of ours, so most of what we were told did not come as a complete shock. We were told that Maksim has sensory processing disorder and spasticity consistent with cerebral palsy. We will have to return to Primary Children’s Hospital in Salt Lake next week for him to have a sedated brain and cervical MRI along with a hip x-ray. Due to his chronic lung disease, they may have to intubate him for the procedure. We are hoping for just the sedation. With the brain MRI, they are wanting to check for the location of cerebral palsy, so treatment and therapy can be more customized to what he needs. He also has a large hemangioma on his neck, so the cervical MRI was ordered to see if it is growing internally and putting pressure on his brain stem or cerebellum. The hip x-ray is to check for hip dysplasia.
Although we were not completely caught off-guard with most of this information, the reality of it all has started to set in, along with the feelings of inadequacy as parents and overwhelming concerns for the future. We definitely have a long road ahead; nonetheless, we are so grateful to be blessed to be the parents to this sweet, smiley, miracle boy, who will undoubtedly continue to astound us.
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We are always inspired by your love and dedication to this miraculous little Maks. I've thought many times how your nursing knowledge has blessed all of you. Continue to rely upon a loving and kind Heavenly Father who knows our needs and has a plan for each of us. These miracle children come to teach us and bless everyone around them. We will keep you in our prayers.
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