FUN with Finger Paint

On Friday, Ben and I were bored with being in the house all day. Towards the end of the day, I decided to try something new... FINGER PAINT! I was totally expecting Ben to hate it (he has a LOT of sensory aversion, especially with his hands - and won't touch a lot of things and cries when someone tries to make his hands do anything). At first, Ben just tried to avoid the paint. Then, all of sudden he was cautiously touching it (and then trying to eat it). But after I stopped him a number of times and signed "no", he stopped trying to put it in his mouth. He then started playing! It was hysterical. He was wiping the paint off of his tray, over and over again. Then, when I would try to suction him, he would grab me, the catheter, the suction tube and everything. It was the biggest mess Ben has ever made and I loved it. Just felt like such a little boy thing to do.

Cat Scan Results

We heard from the doctor yesterday regarding Ben's Cat Scan. They said his brain ventricles looked slightly bigger, but ultimately not that much difference. The doctor was curious how Ben was doing and I told them he's been - no vomiting, not excessively cranky and not lethargic. Those would all be signs that his brain wasn't handling the extra pressure. I gave them his head circumference (I measure them monthly) and the nurse was going to plot those measurements, talk to the doctor and let me know when he wants to see Ben again. I'm hoping for just another Cat Scan in 6 months, but we'll see. So, overall it was good news that Ben doesn't have anything drastic going on in his brain to require surgery.

Working on Standing

Ben has been showing an interest in standing lately, but only if you pull him up. He is doing SO well, and working so hard to overcome all of his balance problems (due to lack of semi-circular canals, hearing loss and cranial nerve problems). He can lean against some things and stand for a minute without falling (he doesn't really fall, we catch him because he will drop like a bag of potatoes if we don't). This is definitely a start. YAY Ben!

Iced In!

We have been home bound this past week due to LOTS and LOTS of ice that hit Cincinnati. We have been one of the lucky ones that didn't lose power (thank goodness because Ben's equipment needs power to work and the battery back-up doesn't last too long). Over 70,000 houses lost power on Wednesday and some still don't have it back yet. Grandma Deb was over for most of the week to help out since some of the nurses couldn't make it out because of the weather or power outages. It has been so nice having the extra company and help.

Next week, Ben will get another cat scan of his brain (he gets one every three months) to see how his enlarged ventricles look (they are enlarged because he had a stroke at birth). We are praying that everything is stable and that he is able to get the cat scan without any anesthesia - usually Ben cooperates if they have a light show. Let's hope this one works out that way too and that the results of the scan show his brain fluid and ventricles are stable.

G-tube Out - Oh No!

I always figured Ben's G-tube would accidentially be pulled out from his belly eventually... I just didn't know when. Well last night we got to experience this! Our night nurse noticed that Ben rolled over, whimpered a little, then fell back asleep. Shortly after that, she started to smell formula. She checked his bed and it was soaked! After following his G-tube all the way up, she noticed it wasn't in his belly, but laying next to him - water balloon still in tack. It must have pulled out when he rolled over (pretty amazing that all Ben did was wimper considering there is a water filled balloon in his stomach holding the G-tube in and that just ripped out). Because the stomach is such a big muscle, the hole starts closing immediately. I was still up and she came in and got me. We tried to put his current size tube in, and it didn't fit - the hole was already too small. We tried the size smaller and still didn't fit. So I grabed a suction catheter and shoved that into his stomach just to make sure the hole didn't close completely. The last thing I wanted to do was go to the hospital for the night because we were suppose to get bad winter storms starting at midnight (which we did). The nurse and I kept on trying to switch back and forth from the catheter to the smaller G-tube, hoping to get it in. After holding the smaller size G-tube in the stoma and applying a great deal of force, over time we were able to get it in. What a relief! And the best part of all, sweet Ben was so good during the whole process. He only cried a few times, played with his slinky the rest. He is such a trouper. Crisis averted!

Ben's Video

So I've seen a lot of videos on our CHARGE friend's blogs, so I decided to get a few of Ben.
I know people are always curious what noises Ben is able to make with his trach. Since he doesn't make any true vocalizations, it is hard to explain. This video is of Ben laughing. Months ago, when we first heard this, it took a little bit for us to figure out what Ben was doing. But, when you think about your breathing when you laugh and what it would sound like not using your vocal cords, this is it! I love his breathy chuckle! There is also a video of Ben rolling and scooting around our family room. And last but not least is Ben sledding indoors.

Make video montages at onetruemedia.com

2007 Cincinnati Cares for Kids Radiothon

This Thursday, February 8 through Saturday, February 10, Cincinnati Children's Hospital will be having their annual radiothon broadcast on Warm 98 (2007 Cincinnati Cares for Kids Radiothon). It is by far the biggest fundraiser the hospital has every year. Money raised through this effort will support the children and families cared for by Cincinnati Children’s Hospital. This year, we were asked to share Ben's story in a prerecorded radio spot which would be put to a music montage and aired during the radiothon. We were honored to have the opportunity to share a little about Ben, CHARGE Syndrome and also raise money for such a good cause. I tried not to get chocked up during the interview, but she was like Barbara Walters!!! And, of course, they used some of those choked up moments for my spot. If you want to hear "Benjamin's Story" montage or any of the other pre-recorded stories they will be using during the radiothon, visit www.cincinnatichildrens.org/radiothon and click on "Need a Reason to Give" in the orange tool bar. We are so fortunate to have such a wonderful hospital in our own backyard.

Appointment with Dr. Choo

Today we had a follow-up with Dr. Choo regarding Ben's cochlear implant. He was very reassuring and helpful. He said that what we are experiencing with Ben and his implant is very typical with the kids he sees that have a lot of other issues in addition to hearing loss. He reminded us to be patient, work with him a lot and just give him time. He basically said that these kiddos have gone so long without sound that it is a real adjustment to train their brains to let the sound in. Kids that have nothing else wrong but hearing loss are definitely quicker at this adjustment, but kids like Ben can take quite a while. He said letting the sound in is the first step. The second step is consistently detecting sounds. The third is making sense out of them (like knowing that was just the phone that rang). And the forth is understanding speech. He said by 24 months of age (that's typical child age... not someone like Ben), kids develop a much longer attention span and they are more accepting to listening. So, we are hopeful and much more positive that this will come with time. We just have to remind ourselves that Ben is on his own time table - not ours.

Snowing... Snowing... Snowing

Oh my gosh, is it SNOWING! We have been pretty fortunate this winter and we haven't had too much bad weather, so we were due. It started snowing at 1 pm and it hasn't stopped. Right now we probably have five inches of light, fluffy, fun snow. Grandma Deb was here for a doctor's appointment, and has decided to stay over and help out - since we have told our night nurse not to try and drive here. Mike left work early to try and avoid the worst of it, but everyone else was doing the same thing. It took him almost three hours to go 15 miles. Yikes! The snow is suppose to stop by midnight and tomorrow I'm hoping to take Ben out in his sled again. Too bad Ben's sled doesn't shovel at the same time... that would be nice!

Cochlear Implant

We still haven't gotten in to see the aural rehab person yet... scheduling is becoming very difficult because there aren't any availabilities on those days that I either have a nurse or my mom here to help us get there. We still need two people to travel with Ben... one to sit in the back and suction and one to drive. Hopefully we can get in soon. Ben is able to detect some noises, but he still isn't responding to all of them. We try to keep the implant on as much as possible, but because Ben spends 90% of his time on the ground, anytime he turns his head to the right it pops off. He doesn't yank it off as much as he use to though, so that's great news! It is very difficult to tell when he hears something because we have to watch for the slightest change in breathing, eye movement, body movement etc. to tell if he hears it. And, those changes need to be consistent to be sure he did hear it. Turning and looking towards a sound is something that comes later when he really starts to understand. Not to mention Ben will always have trouble localizing a sound due to only having one implant. We do know that sound is getting in (the tests show it is), he just needs to learn to make sense out of it and pay attention for the noises. We have continued to work on talking and signing together so he is getting all means of communication.

Brrr... It's Been Cold Outside

It has been FREEZING here in Cincinnati lately! The wind today is crazy, so we have been playing inside a lot. Grandma Deb got Ben a baby sled and Ben loves it! He sits so well in it... even better than he sits in any of his expensive therapy seats. We had him try it out inside before we took him outside to see what he thought. It was a perfect fit and he looked great in it! Once Ben was outside, all he wanted to do was tip back and look at the snow. Plus, with all of his layers of clothes, he didn't fit as well as he did inside. He looked more like he was doing the luge than sledding. It's so nice because even with the cold weather, we can pull him around the house in the sled.