eSpecially Ben

After analyzing several more pints of Ben's blood and little bit of mine, there are still no conclusive results to what genetic disorder Ben may have. Both Ben and I have an odd addition to our X chromosome, but since I also have it and show no delays and disabilities, then it may not be the cause of Ben's own delays and disabilities. However, Ben's neurologist, not geneticist, shared that sometimes a combination of chromosomal issues and other genetic abnormalities can be the cause of a disorder. During the summer, the geneticist ran a series of the newest genetic tests, ones recently developed in the past 5-6 years. I have not heard anything and assume there were no findings. I did get a $4700 bill that they assured me the practice would cover. I still stand by my diagnosis - Ben has his own special disorder, unique to him, one they will not find through tests or charts. And the disorder is characterized by sweetness, stubbornness and the ability to stump doctors an

Uncle Brian captured these moments last night and they were too good not to share.

At 3:00 in the morning last Thursday night, Logan ran into our room to tell us that teenagers were yelling outside our house. As soon as I woke up, I heard the yelling too. I quickly ran to the hallway and peeked out. I saw one man, certainly not a teenager, on our front walkway and a cab parked at the end of the walkway. The yelling and screaming was loud and frightening. I should mention here that our house sits about 10-15 feet away from the street. If you are on our walkway, you are very close to our front door, which is mostly glass. Sound penetrates it easily. Ryan woke up and we filled him in as I searched for a phone to call the police. The yelling got louder and someone started screaming for help. I was on hold waiting for a 911 operator. I tried another phone to see if my phone was broken - I had never heard of waiting for an operator. The other phone had the same results. After what seemed like 10 minutes, I was able to ask for police. The 911 operator said the fight had

If you have been holding your breath - here is the update on Disney's new policy for guests with special needs: Disney Update  (This is also another mom's blog - definitely a good read!) Did we really think that Disney would let us down?

My friend Rebecca sent this link to me:  Young Boy Reaches Out It is a great story about a sibling helping his brother who has special needs run a race. The Letter

Many heated arguments, comments and posts began when Disney announced that they wer changing their policy for guests with special needs. Once again a rule must be made because a few fools abused the system and ruined it for the people who truly need the service. My hope is that Disney responds to the uproar by designing a program that deters people from committing fraud and requires medical documentation for those who actually need the service. Here is one blog post from another mom - I like her spunk, but I also like her bigger picture view of this situation: Why We Aren't Entitled CNN has an article on line:  Disney Disabilty Policy Changes

My usual roost for writing. Four years ago, I started this blog. I don't remember all the details now, but I do know I wrote a " note " on Facebook about toileting in August 2009 and then had a conversation with a neighbor about writing and blogging. With a lot of trepidation and a little bit of courage, I decided to try it . The title, eSpecially Ben, came to me that very evening. Thank you to eSpeciallyBen loyal readers and followers. I love your comments, emails and likes - they keep me going. The support is phenomenal, the connections are uplifting and the writing is cathartic.  I know I am learning something in the process and hoping I pass on hard-earned knowledge to other families. So pick up your virtual glass of your favorite beverage and clink it to the screen...Cheers! My inspiration.