Noah

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A Grandma’s Story

Noah was born at 35 weeks, apparently healthy, but had trouble regulating his body temperature. He was a very happy, beautiful baby, but he wasn’t meeting his benchmarks. We also noticed he had torticollis, which involves the muscles of his neck. The torticollis made his head flat, but by wearing a helmet, it helped this to resolve.

After many tests, Noah was diagnosed with GRIN1 and febrile seizures. Loads of therapies began like PT, OT, Speech, andABA. He alsoo wears ankle foot braces so he isn’t walking on his toes.

Noah is now 9 1/2. There is a lot he can’t do, but so much more that he can do. I am the glass 1/2 full grandma. He speaks a language all his own! He walks, runs, jumps, swims, and does a sort of gallop. He can climb the stairs by slowly holding the rail. He can get drinks from the refrigerator. He hangs in the kitchen signing for food, which he LOVES and can feed himself. He follows simple one step directions often. He gives hugs and kisses when he feels like it and smiles and giggles.

He loves books and “reads”upside down and frequently destroys them. He likes music and Bluey. He is my heart.

He babbles and sometimes we hear a single word, but he can’t tell us if he is hurt, sick or just really angry and frustrated. He has meltdowns when he is tired and sometimes he decides to walk around, be carried or be in his stroller.

We have to hope that someday he will be able to let us know just how much he understands. Until then it’s a guessing game. He rocks and stims and occasionally chews through chewies. We worry that fever will trigger a seizure. We worry, we pray, we hope.