I just posted some pictures of Maddy and the things that trisomy 18 has affected her in appearance. There are also things going on inside that are different than they would be if she wouldn't have been born with trisomy18. We had out first neurology appointment and while it was more of a meet and talk kind of appointment we learned some new information. The doctor ordered a MRI to be sure but he thinks that she has something called Dandy-Walker syndrome.  Dandy-Walker is a congenital brain malformation involving the cerebellum and the fluid filled spaces around it. A key feature of this syndrome is the partial or even complete absence of the part of the brain located between the two cerebellar hemispheres. This diagnosis explains alot of the problems Maddy has had with eating, talking, and blinking. From what I understand the nerves from the face, eyes, and neck aren't connected the way they should be. Its not great news but its information that we didn't have before that we now have. Now on to the good stuff. Maddy has been doing therapy for a few weeks now and she's already showing some improvement in areas! Today she picked her head up and held it up for a few seconds looking around at everything! She is becoming more vocal and has found how to get her fingers to her mouth to suck on too. The other night Aaron and I laid in bed listening to her babble and coo. We both had big smiles on our faces. We were told that we wouldn't have this time to get to love and know our baby girl, that she wouldn't make it this far. Well as I watch her swing in her swing ,falling to sleep as she goes back and forth, I thank God they were wrong!

 

 

What Trisomy 18 looks like for Maddy

 Overlapping fingers

Rocker Bottom Feet

Small Chin

 Enlarged back of the head

 Feeding tube in her stomach

Slow growth- At 8 months she weights 8.9lbs and is 22in long.