To this point in Knoah’s short life…no pun intended. We have had to prepare for a number of medical issues that could come up. Fortunately all of them can be ruled out through testing.

 

No sooner was Knoah born; they had to use the rescue breather because he wasn’t breathing. Then they whisked him off to the NICU to attach him to all of these wires and tubes. Some 12 hours after he was born, I was allowed to see him. My husband told me to be prepared. I was. I knew that he would be hardwired like a computer; no one told me he would have an IV, let alone where they have to place it. My son had this tube coming out of his head. I was horrified. I stared at him, he was huge.

 

*Thought* How are they going to tell me he is going to be a dwarf, but he weights 9lbs 6ozs? He is 21.25 inches? Apparently God does have a sense of humor.

 

They lifted him up out of the crib and told me to sit down. I did and they placed my third child in my arms.

I had my son and he had survived. My mind was racing, was he healthy, are there any complications. I looked at his feet.

 Club foot could be an issue. Nope, his feet were small but fine. His ventricles, was the fluid elevated? They had not done the head ultrasound yet, but they were going to. Hydrocephalus is a concern. We had detected prenatal his fluid to be elevated. “Water on the Brain” is a complication of the dwarfism. The tricky part is, if he was born with a slightly elevated level and it remained there later, it is just what his brain needs to bathe and to remain healthy. If it has increases, he would have to undergo surgery to have a shunt placed in his head. The thought of him having surgery as soon as he left the womb was not a thought I liked to contemplate. We needed to have a full skeletal exam to receive the diagnoses. Was it Achondroplasia, was it Hypocondroplasia, could it be Diastrophic Dysplasia? We didn’t know. Based off my medical knowledge and everything I had read to this point, he looked like he had achon, but I am not a doctor. He needs to be evaluated for an apnea study. His spinal cord and foramen magnum may not be an adequate size and could cause spinal compression, which in turn could cause him to stop breathing. To find out if spinal compression is an issue we need a CT scan and an MRI. His growth needs to be charted on a special achon chart. He would fall off an average height chart soon enough.

 

So many concerns. We haven’t even gotten into the complications from the height. Modifications we will have to look at for our home. Adaptive devices, to help him live a self sufficient life.

 

Then I realized, let me just enjoy the time I have with him. We can deal with the rest later or in a few hours. That was good enough for me.