Solivagant is defined as a solitary wanderer and although he will never walk this journey alone, Autism, by definition, makes communication and social interactions difficult.
November 4, 2019 was D-day, Diagnosis Day. But lets start 3 years, 4 months, and 10 days ago...
June 26, 2016, Andrew Ezra was born by emergency c-section at 12:10am. He was 6lb 12oz and 20in. Drew was born 4 weeks early. We ended up staying in the hospital a week due to Jaundice. Once home, we had a happy, smiley baby! He had blonde hair and blue eyes and everyone thought he was adorable!
Now, while I was pregnant with Drew, I had gestational diabetes and had to go down to Pittsburgh to get a fetal echocardiogram, since there was a risk of heart defects with GD. Thankfully, Drew did not have any heart defects. After, I was approached to be a healthy control participant in a research study which looked at brain development and heart defects. It entailed a MRI in womb, a MRI at age 1, and a developmental assessment at 18 months. I agreed to participate in the study. As a result of participating in this study I learned 2 things. First was during the MRI at age 1 and second was during the developmental assessment at 18 months. The results from the MRI showed "a small amount of extra-axial CSF is seen around the frontal area" and during research about that, I found research studies linking extra-axial CSF and autism. At the 18 month developmental assessment, it was suggested that Drew was more than just a late walker and talker and that we should contact Early Intervention services to get him some support. And so it began.
January 2018 we had our early intervention consult and we started speech services. By April we had a physical therapy consult and later that month an occupational therapy consult. We started speech out weekly, ot bi-weekly, and pt monthly. Eventually we added special instruction and increased speech to twice a week for a hour and a half. We also fit in horse riding therapy, swim lessons, and dance lessons. Then came the doctor appointments.
July 2018 our PCP recommended we start with a neurologist consult. Drew was diagnosed with hypotonia (low muscle tone) We have seen that Dr every 6 months since. We have had a full MRI of the brain done and genetic testing. Prior to the MRI we had to consult with Audiology to check his hearing (which was great). While making the rounds, we saw a Optometrist in May 2019 and discovered he was far sighted and needed glasses. After all that testing was complete, we were referred to a developmental pediatrician. We saw him August 2019. It was a very detailed visit and we spent a couple of hours with the Dr. That appointment lead us to the Autism evaluation. That was scheduled for November 4, 2019. The results from that evaluation concluded that Drew met enough of the criteria for an Autism Spectrum Disorder diagnosis. Which is where we are today, 1 day post D-day.
Is Drew amazing? Absolutely!
Is he smart? Um, yeah.
Does he talk? Nope, but he sure can communicate.
Is he quirky? Who isn't?
Is autism going to define him? Most definitely not.
Is this a learning process? Yep, but so is parenthood, and life for that matter.
Is this blog going to help his Momma process all our trials and successes? I hope!
I don't want Drew to walk this path alone, and neither do I. Please stand by us and support us as we continue this journey.
November 4, 2019 was D-day, Diagnosis Day. But lets start 3 years, 4 months, and 10 days ago...
June 26, 2016, Andrew Ezra was born by emergency c-section at 12:10am. He was 6lb 12oz and 20in. Drew was born 4 weeks early. We ended up staying in the hospital a week due to Jaundice. Once home, we had a happy, smiley baby! He had blonde hair and blue eyes and everyone thought he was adorable!
Now, while I was pregnant with Drew, I had gestational diabetes and had to go down to Pittsburgh to get a fetal echocardiogram, since there was a risk of heart defects with GD. Thankfully, Drew did not have any heart defects. After, I was approached to be a healthy control participant in a research study which looked at brain development and heart defects. It entailed a MRI in womb, a MRI at age 1, and a developmental assessment at 18 months. I agreed to participate in the study. As a result of participating in this study I learned 2 things. First was during the MRI at age 1 and second was during the developmental assessment at 18 months. The results from the MRI showed "a small amount of extra-axial CSF is seen around the frontal area" and during research about that, I found research studies linking extra-axial CSF and autism. At the 18 month developmental assessment, it was suggested that Drew was more than just a late walker and talker and that we should contact Early Intervention services to get him some support. And so it began.
January 2018 we had our early intervention consult and we started speech services. By April we had a physical therapy consult and later that month an occupational therapy consult. We started speech out weekly, ot bi-weekly, and pt monthly. Eventually we added special instruction and increased speech to twice a week for a hour and a half. We also fit in horse riding therapy, swim lessons, and dance lessons. Then came the doctor appointments.
July 2018 our PCP recommended we start with a neurologist consult. Drew was diagnosed with hypotonia (low muscle tone) We have seen that Dr every 6 months since. We have had a full MRI of the brain done and genetic testing. Prior to the MRI we had to consult with Audiology to check his hearing (which was great). While making the rounds, we saw a Optometrist in May 2019 and discovered he was far sighted and needed glasses. After all that testing was complete, we were referred to a developmental pediatrician. We saw him August 2019. It was a very detailed visit and we spent a couple of hours with the Dr. That appointment lead us to the Autism evaluation. That was scheduled for November 4, 2019. The results from that evaluation concluded that Drew met enough of the criteria for an Autism Spectrum Disorder diagnosis. Which is where we are today, 1 day post D-day.
Is Drew amazing? Absolutely!
Is he smart? Um, yeah.
Does he talk? Nope, but he sure can communicate.
Is he quirky? Who isn't?
Is autism going to define him? Most definitely not.
Is this a learning process? Yep, but so is parenthood, and life for that matter.
Is this blog going to help his Momma process all our trials and successes? I hope!
I don't want Drew to walk this path alone, and neither do I. Please stand by us and support us as we continue this journey.
Thanks for sharing this Trish! Drew is an awesome kid and he's lucky to have you and Larry as parents 😊
ReplyDeleteWe love Drew and know he is a special guy! You have our family's support and friendship!
ReplyDeleteWe love you all and I know GOD has been preparing you for awhile now, just didn't know why. Drew is going to be alright just a different path.
ReplyDeleteWhat an awesome and thoughtful way to cope, find support, and teach the world about Autism. I think your blog could help out other parents also. Been thinking about you.
ReplyDeleteHi Trish! Drew is so lucky to have a mama like you whose already gotten him the support, resources, and involved in activities that will allow him to flourish :) Thanks for sharing with us his/your story. He seems like an awesome kid!
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