When he isn't feeling well, he gets very unbalanced. He has several new bruises on his head because he has been falling so much. It is like watching a very drunk person trying to walk. He is starting to get very frustrated when he can't do things that he wants to do. It's really hard to watch as a mom. I can't believe he's almost 2 years old! In just a few weeks, on September 5, my baby will be 2!!!
We got more test results back that came back normal. They were chromosomal array tests that were looking for Trisomal 21 and links to autism. I could've told you before the tests, that this wasn't the case with Ryder. Another gene test came back normal for Kearns syndrome. Ryder is now being scheduled for an MRI and a Mic-Key tube placement.
Noah has a scheduled surgery tomorrow morning. He will have a meatoplasy procedure done. He will be under general anesthesia to get his urethral opening widened. He will have stitches. My poor guy! Please pray for a speedy recovery. My first day of full-time nursing school begins tomorrow. Daddy will be bringing Noah to the surgery. I am so sad not to be the one bringing him. I will definitely be cuddling with him all night though once I get home.
September is Leukodystrophy awareness month. I'm sure you have all heard of the walkathon that Renée has worked hard on putting together. Flyers have been sent out, Evite and Facebook messages have been sent. This is the first ever mall walk in Arizona! Please, please, please help us make it a success! I know it is very early...... for those that know me I love my sleep! But it is just one day, and it would mean so very much to me that you make an effort to be there! I want to make leukodystrophy known to the doctors, therapists and community. Not only will Ryder benefit, but other families affected by leukodystrophy will also be helped. The walk is only half a mile. For those of you that can't walk, you could help Renée at registration. We need the numbers! Let's help make this world a better place for our children!
Love to you all,
Ryder's Mama
