The title of this post is exactly what I told a guy in the grocery store when he asked for my number. Yesterday after I dropped my son off at his dad's house, I went to Hannaford to pick up a few items and cash a check. The line as I walked to cash the check was soo long that I opted to go shopping first. As I went down the aisles I noticed I was wondering and my mind was empty as to what I needed from the store. I slowed down and remembered what I needed but still seemed to struggle to find what it was I wanted to purchase. I think I just have so much going through my head at the time I am really having trouble functioning in society and life. I can't relate to "typical" parents any more and I find it frustrating to even try and discuss what is going on with anyone. That is half the reason I haven't blogged., I can't seem to put my thoughts into words. I don't remember what it was like, before I entered "Holland" , to have a regular conversation. I always seem to be talking about my children or helping someone else get through the beginning stages of acceptance. I need to find myself again, I need to take that time. I am overwhelmed with grief and anxiety that I haven't felt this strong in a long time.
I guess I should update you as to what has been progressing or in better terms regressing. Chucky Cheese has been struggling a lot. It started with his physical therapist calling about concerns and me being the Mama Bear, getting protective. I almost went down the path of denial but.. that would not have helped so I pulled myself together and brought him back to the doctor's. As you might have read in previous posts here, here and here, he has had some muscle issues going on. This problem has now exasperated into a huge problem. It has gone beyond the typical "autism regression" and is portraying itself as a Muscle Atrophy now. Boy. that sounds pleasant eh? Charles' right leg is visually bowing in. It curves at the hip, at the knee and at the ankle. He is losing complete function of his right leg and has much difficulty doing normal everyday tasks let alone regular six year old boy stuff. I find him constantly falling and he is so unsteady. He is even having trouble riding his bike which I was proud to say that he mastered last summer. I have brought him to the pediatrician, neuro-developmental pediatrician, neurologist, orthopedic, urologist, and a neurosurgeon. Why so many you may ask? My son is currently a medical mystery. No one can figure it out.
He went for a 2 hour MRI which showed a syrinx, cyst of fluid, on his spinal cord from T6 - T10. That is a pretty large span and at its widest point measures 5 mm in diameter. Doesn't sound so big but... Your spinal cord isn't all that huge. He did amazing through the procedure and woke up in a pretty decent mood.
Lately his eating habits have decreased, he lost weight, is losing upper body strength, hand eye coordination and has been having some serious behavioral issues. He is also urinating the bed and himself. This is happening at home as well as school. He was 100% potty trained!!! Can you understand why I am so overwhelmed? The neuro-surgeon does not want to remove the syrinx at this time and suggested a urologist and neurologist. So, I followed his suggestions and still have not found any answers. I am completely frustrated.
I need to tell you how ignorant these doctor's can be and how traumatized I am as a mom and my son as their human guinea pig but I think I have to start a new post for the rest. So.. If I haven't traumatized you already, there is more in my next post.
I guess I should update you as to what has been progressing or in better terms regressing. Chucky Cheese has been struggling a lot. It started with his physical therapist calling about concerns and me being the Mama Bear, getting protective. I almost went down the path of denial but.. that would not have helped so I pulled myself together and brought him back to the doctor's. As you might have read in previous posts here, here and here, he has had some muscle issues going on. This problem has now exasperated into a huge problem. It has gone beyond the typical "autism regression" and is portraying itself as a Muscle Atrophy now. Boy. that sounds pleasant eh? Charles' right leg is visually bowing in. It curves at the hip, at the knee and at the ankle. He is losing complete function of his right leg and has much difficulty doing normal everyday tasks let alone regular six year old boy stuff. I find him constantly falling and he is so unsteady. He is even having trouble riding his bike which I was proud to say that he mastered last summer. I have brought him to the pediatrician, neuro-developmental pediatrician, neurologist, orthopedic, urologist, and a neurosurgeon. Why so many you may ask? My son is currently a medical mystery. No one can figure it out.
He went for a 2 hour MRI which showed a syrinx, cyst of fluid, on his spinal cord from T6 - T10. That is a pretty large span and at its widest point measures 5 mm in diameter. Doesn't sound so big but... Your spinal cord isn't all that huge. He did amazing through the procedure and woke up in a pretty decent mood.Lately his eating habits have decreased, he lost weight, is losing upper body strength, hand eye coordination and has been having some serious behavioral issues. He is also urinating the bed and himself. This is happening at home as well as school. He was 100% potty trained!!! Can you understand why I am so overwhelmed? The neuro-surgeon does not want to remove the syrinx at this time and suggested a urologist and neurologist. So, I followed his suggestions and still have not found any answers. I am completely frustrated.
I need to tell you how ignorant these doctor's can be and how traumatized I am as a mom and my son as their human guinea pig but I think I have to start a new post for the rest. So.. If I haven't traumatized you already, there is more in my next post.
4 comments:
Hugs from far away.... Wishing you all the strength in the world. I have no words just wish the best for you and your little boy.
Sounds like a tethered spinal cord?
Your strong and will get through this. Love you! :)
You are an AMAZING woman and mother! As impossible as it sounds at times, keep loving yourself...even if it feels like a fleeting moment, it WILL grow!
Post a Comment