Becoming Comfortable with the Unknown
The day after our long, but "at-peace" day at Children’s (see 1-25-17 entry), I received a call from the Neurologist explaining that Caleb's MRI in conjunction with his observation of Caleb’s function caused him to lose sleep. He actually told me he was sitting on his couch and stressing about it the night before. Although slightly concerned with his remarks, I was so thankful that he took time to call me and express his thoughts. His request was that we further investigate the spine to see if that is having any impact on his movements. The good news is the spine results were normal, the bad news is we don’t have any more information to combat the Neurologists sleepless night, or ours for that matter.
So we continue down the therapy route. We had our initial evaluations with Speech Therapy and Physical Therapy and will continue to see them on a weekly basis.
Speech Therapy indicated the following concerns:
moderate fluency disorder (aka stuttering)
mild receptive/expressive language disorder
Physical Therapy indicated the following concerns:
varied muscle tone in legs, most notably in the calves
decreased range of motion in right ankle
other items related to his abnormal gait (still waiting for assessment form in order to better articulate).
PT also recommended Caleb wears his AFO (leg brace) nearly full-time or at a minimum during the day. Minnie (my mom) came with us to this appointment and I told her the second we left that I already was boycotting those instructions. There is a fine line between what is medically necessary and allowing Caleb to be Caleb. I’m choosing the Caleb be Caleb until we talk to his Orthopedic Surgeon further about this in March.
We have started to move into a phase of being more comfortable with the unknown. We are starting to come to terms that we may not ever have all the answers to the why or the what, but that we are so blessed to have this beautiful miracle child with us each and everyday. Dan is very good at grounding me and realizing when Caleb needs to just be a kid.
Below is a picture of Caleb playing his paint sticks. He knows exactly the order that they “need” to be in.
And a picture of him and his little brother Duncan chasing each other. My favorite part of this picture is capturing Duncan’s desire to drag Goldy Gopher around.
And lastly, Caleb loves his bath time where he can play alphabet without Duncan getting near his letters or numbers. Tonight he picked up all 26 letters separately with this phrase:
“Hi letter A. Can you trace letter A?” he says while tracing the letter with this finger. “Good job. That is letter A.”
“Hi letter B. Can you trace letter B? he says while tracing the letter with his finger. "Good job. That is letter B.”
“Hi letter C…………………..”
At dinner tonight Caleb said, “1, 2, 3, 4…….you are a square” while counting the sides of his veggie stick.
This little dude does new things everyday that make me so proud to be his mom. I know God chose Dan and I specifically to be his parents and we couldn’t be more thrilled to have that “job” while here on earth. It’s the most important one we will ever have.
Thanks again for all the love and support.