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.

The Joy of Being One!

Hi! I hope everyone is doing well. It has been a long, long time since I've sent out an email, so I figured it was time. Remember, if you are interested in receiving more frequent updates, I've been using the opening page of my website to pass on that information.

Well, I've hit a huge milestone in my CHARGE life... making it to my first birthday. I really enjoyed my day and LOVED my birthday cupcake. The icing was divine! I'm thinking of celebrating again with another cupcake on the day I was suppose to be born (October 1) since the doctors use that date to calculate everything under the sun. I just know this year is going to be much better than my last. I'm planning on cutting long term ICU stays out of my life from now on.

Now that I am bigger though, that means some long awaited surgeries for me. First, the great docs at Children's hospital will attempt to open my nasal passages again (coanal artresia) and will put those straw like nightmares (stents) in my nose for 6 weeks. When those are removed, hopefully I will be getting my cochlear implant (I've been medically cleared for this surgery, but private insurance has denied coverage so we are praying that some government aid comes through quickly and agrees to pick up the cost of the $80k procedure). If anyone is interested in hearing what the world sounds like through a CI (cochlear implant), check out the following link: http://www.utdallas.edu/~loizou/cimplants/cdemos.htm

Because I don't have a full cochlea, we are hoping to get an insertion depth of half (the 22 mm simulation). Keep in mind that these examples don't take into consideration how the brain interprets the information and once the implant is placed, a LOT of therapy has to be done to train the brain to listen. Our goal with the implant is to make me more aware of my environment and to help me develop to my fullest potential. Some kids with CHARGE end up being non-verbal and there really isn't any way to predict that.

Since we want to do the implant surgery at the same time the stents are removed to avoid an additional procedure/anesthesia, nothing can be scheduled until we have funding approved. If all goes as planned, after the implant has been placed and I've had a few months to recover, my airway reconstruction surgery will be attempted (granted my nose stays open this time. third times a charm, right?). This will be a two step process, but I'm hopeful my trach will be out next summer. I'm thinking positively :)

It was great talking to you! XOXOBen
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BenRusso.com is Updated

Hi!
The day you all have been waiting for is finally here. No, I'm not referring to the Olympics, nor is it the day you hit the lottery! It's BenRusso.com time. Yes, that's right. my website is finally updated. I hope you enjoy it. I think it looks great (much better than my old site, which was child's play compared to this) and luckily, I was able to work in lots of photos. I'm like Brangelina. you can never get too much of me. As they say in Torino, ciao!
Ben

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Hi Everyone!!!
Sorry it has taken me so long to write, I've just been VERY busy (Christmas shopping, New Years, etc.). As I'm sure most of you know, I am finally home. Yes, that's right, I'm home. I miss all my friends at the hospital, but I must say... my new digs are GREAT! I have my very own room and there is stuff to do all the time. It is truly exhausting. Swings, mobiles, toys - so much to do... so little time.
I'm starting to get on a schedule now too. Mommy keeps on trying to get me to take a nap, but I'd rather stay up all day and just sleep for 14 hours straight at night. I'm still on continuous feeds, but all my equipment (air compressor, suction machine, trach bag, etc.) can be brought downstairs during the day so I can play. I am getting weekly visits from OT and PT and those girls seem very nice -1 just wish they would stop pulling on my arms and legs... I like them where they are! The doctors must really miss me because they still want to see me every week. I can't say I blame them... I'm a joy to be around (except when I throw my little baby temper tantrums).
Daddy is going to update my website to reflect my new and IMPROVED lifestyle. I'll send out a message when it's done (Daddy isn't as good with computers as I am so it may take a while).
Thank you everyone for being so kind and thoughtful to my family. And I appreciate all the prayers and warm wishes... they must have worked!!! Talk to you later!Love Ben