Cason from the day we first got him (top left) over the course of the last 2 years until just a couple of weeks ago (bottom right)...
Have I talked much about Cason and what he has been through? Honestly, my memory has become a blur since the addition of our 2 youngest! Ha. My brain is mush and I could have gotten into detail about this already and maybe I've left those of you who I don't know personally wondering! This week was rough...we got some unexpected diagnosis and we were caught off guard. Let's start from the beginning...
At 7 weeks of age, Cason suffered a severe brain injury as a result of being shaken. He went untreated for almost an entire day and became unresponsive. He suffered seizures and a couple of strokes over the course of the next couple of days and it did not look likely that he would survive. He was life flighted to IA City and treated there for a month. He was deemed blind. Over the course of the next month, he made a miraculous recovery, though he was left severely fragile do to his brain injury. He started to regain his sight and was placed in the care of an incredible family who we love and are so grateful for. They cared for him for almost 9 months and he made great strides. His sight continued to improve and he started interacting more. When we took him into our care with the hope of being able to adopt him, he was 11 months old and developmentally around 3 months of age. He was happy all the while!
We got him a helmet and continued with the therapies he had been receiving since being released from the hospital...he continued to grow and develop and learn new things what seemed like every day! His head growth has been a concern from the get go. It simply wasn't growing. He has microcephaly and severe developmental delays and a traumatic brain injury. Those were his diagnosis. Due to his strokes, he had obvious weakness and tone on the left side of his body. This has consistently improved over the last 2 years...it's actually amazing how much improvement he has shown in this area!
Doctors and therapists didn't know in the beginning if he would ever walk or talk or sit up or crawl...they didn't even know if he would LIVE, so the fact that he is walking and jabbering and definitely WILL talk is so incredible. Aside from his consistent lack of head growth, I have had so much hope and been so impressed with everything he has overcome! We are so proud of him!
Cason has many self stimulating behaviors...banging his head, spinning, shaking his head, licking, spinning toys, flailing his arms, etc. These have progressively gotten worse as he's become more mobile and developed more. It has been clear that he needed a certain type of educational instruction due to his unique behaviors and with him starting school in January (EEK!), we have been exploring these things a bit more. So on Wednesday, he had an appointment with a Pediatric Neurologist from the CDD (Center for Development and Disabilities). I went into that appointment with an expectation that it would go as all of our appointments often go. We hear the same old, "Oh, he's made so many improvements! Look at him walking and babbling...he's doing great!" I was wrong...
I was not prepared for any diagnosis, let alone 2 unexpected ones and possibly 3 (pending xrays). He was diagnosed with Autism Spectrum Disorder and Cerebral Palsy...Spastic Left Hemipligia Cerebral Palsy to be specific. Lastly, they believe he has Hip Dysplasia and so we took him to the hospital for xrays and have not yet heard. Obviously the Hip Dysplasia is fixable and possibly could even correct itself, but the other 2 diagnosis shook me.
I know they are just words and those words don't change him, but they change things. They just do. You know, some of those things will be for the better...I do believe that these diagnosis will benefit Cason when it comes to school, but I have this icky feeling about the label. I don't know, I just don't like it. It is so upsetting to me. It breaks my heart and as wrong as this sounds (hopefully this will change!), I feel like I lost a little bit of hope with those diagnosis. We love Cason so much and just want him to be happy...and he IS! He is SOOO HAPPY!
Selfishly, these diagnosis mean more appointments, new doctors, new therapists, etc. We are busy with our boys' needs...all THREE of their needs. I wouldn't change for a second having our 3 boys, but man, it's hard and busy and trying...emotionally, mentally, physically...did I mention emotionally?! My heart is broken...and it breaks for them every day. It does. I love them so much and hurt for them so much.
We were already told about a treatment that our therapist wants him to get that will take us away for 2 weeks for an intense therapy...and we will do it. We will do whatever we can for our boys. We will sacrifice whatever we need to, but it's been 2 days and this has already been talked about...because he needed a diagnosis in order to undergo this special therapy...and now he has one. So in 2 days, we are already researching the possibility of spending 2 weeks away to address his needs. And we will GLADLY take part in any necessary therapy that will better him. It doesn't change that it's overwhelming and trying and scary though.
I am still letting these diagnosis settle in...and I always feel like I am strong when it comes to these things, but this week I was shook to the core. Not sure if it was in part because of my lack of preparation of even having a diagnosis or what, but I am struggling. I will be okay, Cason will be amazing...he ALWAYS is. I am sad for him though, and scared and worried and angry and feel almost like I am grieving. Yet really, HE hasn't changed one bit. I'll accept it and take the bull by the horns after it all sinks in...I guess it just hasn't all sunk in yet!
Have I talked much about Cason and what he has been through? Honestly, my memory has become a blur since the addition of our 2 youngest! Ha. My brain is mush and I could have gotten into detail about this already and maybe I've left those of you who I don't know personally wondering! This week was rough...we got some unexpected diagnosis and we were caught off guard. Let's start from the beginning...
At 7 weeks of age, Cason suffered a severe brain injury as a result of being shaken. He went untreated for almost an entire day and became unresponsive. He suffered seizures and a couple of strokes over the course of the next couple of days and it did not look likely that he would survive. He was life flighted to IA City and treated there for a month. He was deemed blind. Over the course of the next month, he made a miraculous recovery, though he was left severely fragile do to his brain injury. He started to regain his sight and was placed in the care of an incredible family who we love and are so grateful for. They cared for him for almost 9 months and he made great strides. His sight continued to improve and he started interacting more. When we took him into our care with the hope of being able to adopt him, he was 11 months old and developmentally around 3 months of age. He was happy all the while!
We got him a helmet and continued with the therapies he had been receiving since being released from the hospital...he continued to grow and develop and learn new things what seemed like every day! His head growth has been a concern from the get go. It simply wasn't growing. He has microcephaly and severe developmental delays and a traumatic brain injury. Those were his diagnosis. Due to his strokes, he had obvious weakness and tone on the left side of his body. This has consistently improved over the last 2 years...it's actually amazing how much improvement he has shown in this area!
Doctors and therapists didn't know in the beginning if he would ever walk or talk or sit up or crawl...they didn't even know if he would LIVE, so the fact that he is walking and jabbering and definitely WILL talk is so incredible. Aside from his consistent lack of head growth, I have had so much hope and been so impressed with everything he has overcome! We are so proud of him!
Cason has many self stimulating behaviors...banging his head, spinning, shaking his head, licking, spinning toys, flailing his arms, etc. These have progressively gotten worse as he's become more mobile and developed more. It has been clear that he needed a certain type of educational instruction due to his unique behaviors and with him starting school in January (EEK!), we have been exploring these things a bit more. So on Wednesday, he had an appointment with a Pediatric Neurologist from the CDD (Center for Development and Disabilities). I went into that appointment with an expectation that it would go as all of our appointments often go. We hear the same old, "Oh, he's made so many improvements! Look at him walking and babbling...he's doing great!" I was wrong...
I was not prepared for any diagnosis, let alone 2 unexpected ones and possibly 3 (pending xrays). He was diagnosed with Autism Spectrum Disorder and Cerebral Palsy...Spastic Left Hemipligia Cerebral Palsy to be specific. Lastly, they believe he has Hip Dysplasia and so we took him to the hospital for xrays and have not yet heard. Obviously the Hip Dysplasia is fixable and possibly could even correct itself, but the other 2 diagnosis shook me.
I know they are just words and those words don't change him, but they change things. They just do. You know, some of those things will be for the better...I do believe that these diagnosis will benefit Cason when it comes to school, but I have this icky feeling about the label. I don't know, I just don't like it. It is so upsetting to me. It breaks my heart and as wrong as this sounds (hopefully this will change!), I feel like I lost a little bit of hope with those diagnosis. We love Cason so much and just want him to be happy...and he IS! He is SOOO HAPPY!
Selfishly, these diagnosis mean more appointments, new doctors, new therapists, etc. We are busy with our boys' needs...all THREE of their needs. I wouldn't change for a second having our 3 boys, but man, it's hard and busy and trying...emotionally, mentally, physically...did I mention emotionally?! My heart is broken...and it breaks for them every day. It does. I love them so much and hurt for them so much.
We were already told about a treatment that our therapist wants him to get that will take us away for 2 weeks for an intense therapy...and we will do it. We will do whatever we can for our boys. We will sacrifice whatever we need to, but it's been 2 days and this has already been talked about...because he needed a diagnosis in order to undergo this special therapy...and now he has one. So in 2 days, we are already researching the possibility of spending 2 weeks away to address his needs. And we will GLADLY take part in any necessary therapy that will better him. It doesn't change that it's overwhelming and trying and scary though.
I am still letting these diagnosis settle in...and I always feel like I am strong when it comes to these things, but this week I was shook to the core. Not sure if it was in part because of my lack of preparation of even having a diagnosis or what, but I am struggling. I will be okay, Cason will be amazing...he ALWAYS is. I am sad for him though, and scared and worried and angry and feel almost like I am grieving. Yet really, HE hasn't changed one bit. I'll accept it and take the bull by the horns after it all sinks in...I guess it just hasn't all sunk in yet!
1 comment:
hugs. you're an amazing mama. he is an amazing little boy.
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