5 months old

Laynie is actually 5 1/2 months old now! I can't believe in a couple of weeks she will be 6 months old. That is 1/2 of a YEAR!!! Crazy! She weighs about 11lbs 10oz. She really is starting to get chunkier and chunkier! She is still working on holding up her own head. She is grabbing at toys now- it is so cute to watch her play with them. I think she can see really well, which is a HUGE blessing. The C in CHARGE syndrome stands for coloboma of the eye. It causes problems with vision. This was the one thing that they didn't find in her and we are so grateful. I don't notice her making any response to noise, so we are still doing further testing on her ears. We know she has profound hearing loss, we just don't know if she is completely deaf or not. Good thing Drake is still signing up a storm. He loves watching Signing Time... I think he knows more signs than I do. I guess I better start paying attention. Her next surgery is scheduled in a couple of weeks and I am having such a hard time with this one. She is finally happy and I just love her cute smile the way it is. I still have a lot of people ask me what CHARGE syndrome is, so I don't know if I have done a great job at explaining it, so this may help a little...

C- coloboma of the eye (which they didn't find in Laynie, she will keep getting them checked though)

H- heart defects (she was born with 3 holes in her heart... PDA, ASD, and VSD. 2 of the 3 holes have closed on their own. we are so lucky because her heart defects were pretty mild compared to a lot of others)

A- atresia of the nose (she has the choanal atresia in the right side of her nose. it is basically bone that creates a blockage)

R- retardation of growth and/or development (this is something that will take time to know for sure. she is missing her olfactory nerves and this controls smell and growth hormones/they call this Kallmann's syndrome. she is probably always going to be small and need hormones in order to go through puberty)

G- genital and/or urinary abnormalities (she has one small kidney and they aren't sure if she has ovaries or not. we have to wait until she gets bigger to find out more)

E- ear abnormalities and deafness (she has many inner ear abnormalities)

*That is all the MAJOR criteria for CHARGE syndrome and then there is a lot of MINOR criteria. For example, a minor criteria is a cleft lip and palate*

Another thing that I read is that 60% of babies with CHARGE syndrome have trachs. I guess there are a lot of breathing and swallowing problems as well. I am still learning so much every day. It really is a joy to take care of this sweet little girl. She has already changed my life so much. Sometimes it takes challenges in your life to make you realize how fragile and wonderful life really is. I would never want to change a thing about her. She is so precious!