Yesterday I spent 5+ hours at Children's for some dr appointments with B. Toting around a 26lb fussy sleepy baby....it was exhausting.
B saw his Ortho Dr and we got a spine x-ray. She said his scoliosis has no change. GREAT NEWS!!! Best thing I could have heard. He will get another x-ray in 5 months.
After B saw his special needs-rehab Dr. She said he looks great, she is happy with him. She put him on a day dose of the baclofen (a muscle relaxer to help with high tone in his arms and legs). He was just taking it at night so now we can see how he dose with an added dose per day. We talked about looking into a chair for him since he is outgrowing his stroller. When we return in 5 months there will be a vendor there to go over some options with us. She gave us a Rx to get him night braces for his feet. This will help stretch his tight ankles. She gave us a new overall diagnosis of Cerebral Palsy. A scary word but I knew it was coming. This will also be helpful with insurance. In the end it doesn't change anything....it's just a word. So the official diagnosis is: Spastic Quadriplegic Cerebral Palsy. The quad just meaning all four limbs are effected.
I snapped a pic of B's x-ray. The tube is his shunt drain that goes into his abdomen. The reason it's so long and coiled is so it can grow and expand with him. I thought it was pretty cool looking. If you look close you can see the small curve in his lower spine. His curve is only at 8* right now, very small.
My sleepy man passed out in the waiting room.
Being silly on the exam table. (Dad dressed me so I look like a blueberry, LOL)
We are still letting the CP diagnosis sink in. It's definitely a scary word but it doesn't change how I feel about B. He is a special little guy. All his nurses and Drs certainly adore him and his little flirty personality. Of course I do too.