Thursday, December 25, 2008

Merry Christmas!

Hopefully Santa was good to you this morning... we've had an eventful Christmas day. It is officially the boys second Christmas, though we're sure they don't remember their first one :) It still doesn't seem as though they're ready for the whole opening presents thing. Luke got very frustrated early on, so we did our best to mitigate by opening all the presents ourselves and showing Luke how fun things were once the wrapping paper was off! Will enjoyed taste testing each toy as it came out of the wrapping paper.
We spent the day with Amanda's mom, Oma, who is living in NC while Opa (her husband Scott) is in Iraq. Not sure if you can read the blog, Scott, but just wanted to let you know that we truly missed you today and are so proud of you. Can't wait to have you back state-side.

Included here are some pictures from this morning. Now we're off for a trip to Binghamton... hopefully you liked the surprise, Papa Joe! Love to everyone, we hope that you have the opportunity to spend some time with your friends and family and enjoy the spirit of togetherness that Christmas brings.

The last picture on this post was the pic I took of Nate when he opened his only present this year... his much-desired, but not-expected Wii! Get ready for an invitation to come over and bowl!

Friday, December 19, 2008

New feature!

New feature alert! I have just added a widget to the side of this blog which allows you to subscribe your email address to a service which will email you when I post an update to the blog. Just like our CarePage! The email will come from my gmail email account -

Once you add your email address to the box on the right sidebar, a confirmation email will be sent to the email address that you listed. In the email is a website link that you must press to confirm your email subscription. After that, you'll get an email alert whenever I publish a new blog post. Cool, huh?!

Wednesday, December 17, 2008

Good news!

The neurosurgeon feels comfortable with the size of Luke's pseudomeningocele... apparently if the shunt wasn't working properly, the pseudomeningocele would be a LOT bigger. Right now, because Luke isn't showing any clinical signs of shunt malfunction (vomiting, lethargy, etc), they feel very very comfortable allowing his body to continue healing. His head CT and x-rays from yesterday indicate that there is no swelling or pressure inside his brain.

Breathe a sigh of relief!!! Thank goodness!!

Wish us luck

Since Luke's proximal shunt surgery in September, he's had what is called a "pseudomeningocele" around the surgery location - basically a lump of fluid between his skull and scalp. After the distal shunt surgery in October, the pseudomeningocele was smaller, but still present. The doctors indicated that it could last for up to about 4 months as the skull grows over the old shunt location. They also indicated that the pseudomeningocele should get progressively smaller over time.

Unfortunately, Luke's pseudomeningocele is getting larger over time, which could indicate that the shunt is malfunctioning. Nate took him to get x-rays and a CT yesterday, and I am leaving now to take him to the neurosurgeon. They'll tell us what the x-rays and CT show them, take a look at Luke's head, and then decide what to do.

Think good thoughts for us... I'll try to post later when we have an idea of what is going on.

Thursday, December 4, 2008

An early Christmas

Now that Thanksgiving... I mean Halloween... I mean Labor Day... I mean the 4th of July is over, its time to start getting into the spirit of Christmas! In a year of belt-tightening and economic unease, most people we know are planning a "less is more" kind of holiday, and here in Slavik-land, the festivities have begun!

Will's sidelyer arrived with a THUD on the front porch yesterday morning. No lie... the box for this thing is 4 ft tall by 6 ft wide by 2 ft deep. Inside was a sidelyer and about 40 gallons of recycled foam packing material. That was fun for Nate to clean up :)

Thankfully for us, our insurance company agreed to pay for the whole thing! So here is a picture of Will in his new sidelyer. Don't let the smile fool you, the contraption isn't a whole lot of fun. Because of his decreased muscle tone, Will has a very hard time bringing his hands to the middle of his body (a key skill in life). The sidelyer puts him in a position where he must hold his head straight and he is able to bring his hands to the middle with the assistance of gravity. This teaches him what having his hands in the middle of his body feels like, thereby increasing the possibility that he will do it when out of the sidelyer. We try to load him up with as many fun, musical and lit toys as possible.

In addition, we (really, Will) were just accepted into a joint program between the UNC and Duke biomedical engineering departments where a graduate level biomedical engineering student team will come into our home, assess our needs, develop a tool or toy or contraption that will make some aspect of our lives easier, build it, and then give it to us (with our agreement that we won't patent the idea). So in essence, we are someone's design class project... but we don't mind because it will be useful and free! We have some ideas for things that would be beneficial to our family and Will, but really as a part of the class, the students are supposed to come up with the ideas. The initial intake with the professors is next week, and the students will be assigned the project in the second week of January.

The last little bit of early Christmas cheer is that Will and Luke received their second of 6 Synagis shots yesterday, and WILL GAINED WEIGHT! He had been stuck at exactly 20 pounds for a long time, and gained 8 ounces in the past month! This is a HUGE deal for us, as we have been working very hard with a feeding therapist and nutritionist to get to this point. We still have a long way to go just to get Will onto the growth chart, but this is clear and documented progress! We couldn't be prouder of Will.