Larkin had a check up today with her Neurologist at St Louis Children’s Hospital. I LOVE HIM!! We got up early and drove to STL and on our way into the building ran into the Neurologist who had crushed us with the diagnosis of Lennox Gastaut back in August of 2007. She is someone I really like as a person and the fact that she is an amazing Neurologist is a bonus. We stopped and she asked about L and the fact that a doctor remembers us is either scary or really really nice. 🙂
Larkin is almost back to her fighting weight. She is 29lbs and almost 36 inches long. Her head circumference is what I an always most worried about. Champaign WE HAVE GROWTH!!! 46.5 centimeters!!! WOOO HOOO. Head growth is so important. I preach all the time about how people take their ability to move for granted but brothers and sisters y’all can’t even take your brain for granted cause you never think about it.
Brain growth can be stunted not only from Down syndrome and seizures but the medications can cause slow growth or lack thereof. We hit the lottery my friends. We got hit by lightening twice in the same spot. But we are still standing so the seizures can— for lack of better words —- “suck it”.
I noticed Dr. Zempel watching Larkin carefully. How she must fill him with joy the same as she does us. He met her when she wouldn’t look at us. She couldn’t smile. She couldn’t stand. She couldn’t stop seizing. I realized that his day is filled with children going through such difficult journeys. I had gone to the restroom when Larkin was called back so I had to go looking for her and Andy. I found them but not before peeking into another room where there was another family. A father carrying his son. A father holding his son who I guessed to be about age 9-10 but I could be way off base. I was going by size. A family that is walking and carrying their child through a journey.
Larkin will continue on her same medications. She will continue on the Ketogenic diet for another year and then we look at weaning her off. She looked at Dr. Zempel. She smiled at him. She stood for him. She hasn’t shown clinical symptoms of seizures since last October. She then tried to get me to flip her into a somersault. I like where we are compared to when we met him a year ago. I will blog again about a really awesome drug that has brought our sweet girl out of the fog of seizures. Felbamate. Felbatol. Meda Pharmaceuticals. I have their poster child.
I went into our room humbled and grateful that I can be humbled. We need to remember that right now someone is being diagnosed. Someone is leaving a hospital with a baby and a brochure. Right now someone is being injured in a car accident. Right now someone is taking a mis-step. We are all this-close to needing to be carried by our family and friends in a physical way. Our family has been carried by all of you in a spiritual way for a very long time. We’re heavy but I promise you that we are a lot heavier in person.
And we are blessed for knowing you guys. Yay Larkin!
So when are we going to do the somersault photo?
Great visit ` Great News
Rory, NADS *I hate writing that acronym* is looking for pictures of kids with Down syndrome to put up on the Times Square Billboard. I am thinking we need to do a photo session with all of us!!
lets set it up. I’m in that would bee neat Larkin in NYC.