A Different Boat

Well Wesley is now 8 months old and still has no teeth. I've been thinking he's teething for months now but none have poked through yet. Every time he drools a lot, is cranky, or is really pacifier dependent, I find myself telling people, "He's starting to teeth." Then months go by and no teeth appear. I even bought him a teething necklace (controversial as it may be) that is supposed to release a natural anti-inflammatory to ease teething pain. I know it's no big deal and all kids teeth at different times. I have a friend whose baby got a tooth a 3 months and another whose baby didn't get her first tooth until 11 months. The average time for the first tooth to appear is supposed to be 4-7 months.  As much as I know it doesn't matter, Wesley's lack of teeth is just nagging at me.  Getting teeth is not dependent on mental or physical capacity, it's purely biological.  I know it's highly unlikely for Wes to crawl, walk, or talk within the ...

In stark contrast with Disney World, I have decided the saddest place  on Earth is Children's Hospital. This may be a bit of an exaggeration when we take into perspective places in third world countries with starving children so perhaps I should revise my statement to be Children's Hospital is the saddest place in America. The hallways, waiting rooms, cafeteria, and parking lots are all filled with parents who look worried, exhausted, and beaten up and children whose lives will be a battle.   When we first started coming I felt incredibly overwhelmed looking around at the other families. I had a feeling of shock that I had ended up here with those people everyone looks at with pity. The longer we've been coming here, I feel less in shock and more a part of a sad comradery. Without speaking a single word to each other, we all share a bond of common experience.  I hope one day to be the person who wouldn't have changed a thing about the life they've been given and ...

Someone recommended in a comment that I should read "Welcome to Holland" and it so perfectly describes what my life has become. WELCOME TO HOLLAND     by  Emily Perl Kingsley.  c1987 by Emily Perl Kingsley. All rights reserved I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...... When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you s...

While Colby is waiting to restart the final phase of his training, he gets nightly phone privileges. It's great to get to talk to him again, although I think it will make the next 3 weeks a lot harder. I will blame my lack of blog posts on the fact that I am able to share about my day with Colby each night so I have less time and need to write blog entries. I fear that when he's back for good I may stop blogging all together. I really don't want that to happen so I will try to continue blogging for the same reasons I started blogging in the first place. So here's the latest with us. After calling the neurosurgeon's office 3 times in one day, I finally got Wesley's CT scan report. It shows partial bicornonal craniosynostosis. Because he has a decreased brain volume and the sutures are only partially fused, the surgeons don't want to do anything right now. The plan is to see him again in October and probably do another CT scan at that point to see if there ...