Wednesday, June 26, 2013
6-26-2013
We took Xander to the geneticist today. She was quick to tell us that Xander does not have EDS. What?! But, for the last two months... Moving forward. We received a lesson on chromosomes. Everyone has 46 chromosomes - 23 with 2 legs each. They are numbered and each one has a specific purpose... That's all I have for the lesson. Chromosome 1 and 9 (for Xander) are the problems. If he had EDS Chromosome 1 and 9 would only have 1 leg each. Xander's chromosome 1 and 9 have 3 legs. The geneticist isn't sure what that means. Chromosome 9 is the one that effects the connective tissue... (I believe I got this right- there are legs and numbers and so many things). Anyway so he has 3 copies instead of 2. Scott asked what all this meant and the Dr commented that she had no idea.
She did refer us to an Orthopedic doctor for Xander who walks with a funny little jerk. He favors his right hip and lifts his little knees as though he were a soldier marching to the beat. His skin is a little softer than normal and his skin has more elasticity which are signs of EDS, but... Basically no answers taking us forward but one syndrome taken off the table.
On the way home we picked up some supplies and set Xander up with a little sandbox on the back patio.
Xander LOVES it...
Daddy's Day was wonderful. Xander got his daddy a superman watch and we spent time as a family...
Xander dressed like daddy- they were such a wonderful couple of men.
Xander found the trail mix and fell in love with it. He dumped it on the floor and ate his favorite pieces...
Xander has been walking more than not. He has more words in his vocabulary. He still loves to tell everyone "no". He loves to talk on the phone. We can be in a store and, if a phone rings, Xander perks up and looks around saying, "Hi. Hi.." He loves to put all kinds of toys and objects up to his ears and saying "Hi" even putting the item to our ears so that we can talk into that item. Xander is very articulate. He will take his daddy's hand and place it on his waist when he wants to sit by Scott. He places items in our hands to let us know what he wants.
He absolutely loves to play with his great-grandma. They will play hide-and-seek. She taught him how to knock on the door. He loves to sit really close to her in church and hold her hand. He brightens up every time she comes out of her room and he hears her walker.
He loves to see how things work. He will turn on the vacuum and then get down on all fours to look under it and see how it works. He examines everything he can, trying to figure it out. He loves buttons and switches and always wants to turn the lights off or on. The other day I watched him turn the switch on and then walk over to the light and look up into the shade then back over to the switch, turn it off and wander back over to the light to see that it was out. He did this several times before moving onto something else.
He's pulled his crib apart a little at a time as he figures out the screws and ways to get them out- we still aren't sure how he does that. He love to help mommy load the dishwasher. He helps put the silverware in the basket and has enjoyed putting a plate in here and there. He is always cleaning. He'll get in the bathtub and pull all the shampoo and conditioner bottles down and run the washcloth over all the surfaces, cleaning. Today, after the appointment, we went to the Olive Garden to eat. Xander cleaned the table and his plate with a napkin as soon as he was done eating his food.
His character is growing and he is becoming strong and wonderful and bright.
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