Attack baby

Ben shows his affection by attacking your head. We like to think he is trying to give us a kiss... he just doesn't quite get the gist of it yet. Lately though, his attempts at kissing us are getting a little more painful because of all of his teeth (16 to be exact). After Ben nearly took a bite out of my head, I've decided to let his dad take the grunt of the head play. Even at the table, Ben still wants to dive in!

New Site & New Games

I'm sure you've noticed that the site looks a little different. We have decided to use a blog format because it is much easier to post pictures and give updates. We realized the other day that you were only able to leave a comment if you had a blogger account. It must have defaulted to that setting. We changed it though and anyone can leave a comment now. Just select anonymous if you don't have an account. We hope you like it!

Mr. Ben sure has been in a good mood lately. Seems like something different cracks him up every day. Today, he was in rare form. We took him outside when it started to snow and he LOVED it! He was sticking out his tongue, bending his head backwards to check it out and even trying to grab at it. He was cracking us up! He is also waving back at us whenever we wave "hi" or "bye" to him. He uses both hands and is really pleased with himself when he does it. For the longest time, we had to get him started with the waving... now he just does it whenever we do. So exciting to see him interacting with us back and forth and imitating. This is a BIG development milestone!

Haircut

Over the weekend, our friend Rachael came over to the house and gave Ben his first true haircut. He watched his Baby Einstein video the whole time and didn't mind a bit. He looks so grown-up now! I didn't realize how bad of a job I was doing cutting his hair until I saw how he looked when Rachael was done.(Ben is wearing his cochlear implant in the "after" picture. )

Surgery is Canceled... For Now

Urology surgery has been canceled. Because Ben currently isn't having any urinary track infections and his kidneys look healthy, the doctor would like hold off on the surgery for now. Ultimately, it was scheduled for now because it needed to be done before ENT would start airway reconstruction. Since that airway reconstruction is on hold for at least this year, no need to rush into it. We are relieved that we don't have to worry about that for now.

Trach Plans Changed

Major change in plans - Ben has had some testing done recently to find out why his airway was inflamed (they found inflammation when he had surgery back in September). We found out one answer and that answer brought some disappointing news. Ben is aspirating his own saliva. This is related to his facial palsy, uncoordinated swallow (which is why he can't eat orally) and abnormalities related with his cranial nerves (common with CHARGE). Although the ENT doc wasn't surprised, he was disappointed with this news. To fix this, four of his saliva ducts will need to be snipped. There is a 25% chance that these ducts can fuse themselves back together at a later time, but it is pretty much our only option. Surgery date for that is scheduled for March 15. And because of this finding, the doc does not feel comfortable doing any kind of airway reconstruction any time soon (definitely not in 2007). He feels that opening up his airway could cause more risk of aspiration (the narrowing and damage may be stopping saliva from traveling down to his lungs and helping him stay healthy). We were very disappointed with the news, but we understand and want Ben to be safe when it comes time to take his trach out and now just isn’t the time for him. Hopefully after the saliva surgery, he won't need suctioned as much - so that's the good news.This also changes things with his urinary track surgery. We don't have to rush since his trach won't be coming out this year... so we may either go for the injection or wait to have the surgery until later in the year. I have a conference call with the doc on Wednesday to discuss.