Our big guy turns 2!

Today is Ben's 2nd birthday! I can't believe he is already 2. We had a nice day of no appointments or therapy. Instead, we made a trip to visit my brother Aaron and his wife Jen at the hospital (Jen was due last Friday and was scheduled for a c-section yesterday because their baby was not head down - but after a quick ultrasound before the c-section, their little one had decided to go head down. Now they are inducing her and it is taking a LOOONGG time. If the baby doesn't come tomorrow, they will have a c-section after all. We are very excited to meet their baby, so hopefully she comes soon! She will be our first niece.)

We spent a few hours visiting with them and when we got home, we had a little birthday celebration for Ben with my mom and dad. I baked a two tier cake for Ben (I'm never doing that again, I stink at baking and cake decorating) and I gave him a piece to dive into. I thought for sure he would taste a little or at least smear the icing around. Instead Ben decided to pick up the cake and just throw it over the side of his high chair -- I shouldn't be surprised, he does this with everything. I then gave him a scope of ice cream because I thought that might go over better with him. NOPE! He also tossed that over the high chair. I'll be sure to post some pictures soon.

Head Catscan Results

Ben's head catscan went smoothly this morning. After his appointment with the neurosurgeon, we learned that his enlarged ventricles weren't any larger than his last scan, so we don't need another one for a year (unless we have any complications in the meantime). We were thrilled with that news. The doctor also had time to pull up his previous catscans and MRIs to show me in detail the lack of changes. That gave me an opportunity to fire away some questions. For the first time since Ben's birth, I feel like I have a good understand of what's going on with Ben's brain. I will try to do my best to explain.

Every spot in a skull has to be completely filled with something. If it isn't brain matter, then fluid or something else must take up that space. Ben's brain is a little smaller than a typical child, so Ben's enlarged ventricles are simply filling up the center space in his brain - but not applying any pressure to his brain. If there was pressure, they would need to put a shunt in to relieve that pressure (which is why Ben is followed so closely - just to make sure the ventricles continue to just fill space, not press on anything).

I also learned that Ben has a small cerebellum. There is extra fluid around that part of the brain just to take up the space the cerebellum isn't. The cerebellum is responsible for trunk tone/strength, coordination between the right half and left half of the body and balance. This makes complete sense because these are the main issues Ben struggles with. Balance is first and foremost controlled by the semi-circular canals in the ears. If you don't have all of the semi-circular canals, you might as well not have any because the balance mechanism won't be able to work properly in the ear. The cerebellum then realizes that and over a long period of time, will eventually take over and control balance. Because Ben is missing semi-circular canals and his cerebellum is small, walking/balance is going to be a big challenge for him (one I do think he will overcome, just will take him a really long time - that's my gut instinct anyway). This also explains why his hands tend to mirror each other (if he itches his head with his right hand, the left hand does the same itching motion in air).

So that's Ben's brain in a nutshell. He definitely has his work cut out for him... but I have faith in his determination.

Same old, same old...

Hi everyone! I know it has been a while since we've posted, but there really isn't anything new going on here. Ben has been very busy attending doctor's appointments these past few weeks (seems like Ben's bi-monthly appointments all fall within the same two week time frame). So far, everything has been status quo.

Thursday is one of his bigger appointments - head catscan and neurosurgery appointment. They are going to check to make sure his ventricles in his brain haven't increased in size and measure the amount of fluid around his brain (he hasn't had a head catscan in 6 months). I feel confident that everything is fine because I measure Ben's head circumference once a month and it has been stable. He also hasn't been showing any signs of pressure on his brain. I always worry before these appointments though because the brain is such a complex organ and this is one of the few areas of Ben's body that has avoided surgery so far (and I'd like to keep it that way). We have to be at the hospital at 7:00 a.m. on Thursday, so it will be an early morning for us! Thank goodness the hospital is only 15 miles away (and hopefully we will be early enough to avoid rush hour).

I'm also happy to report that Ben has been stable enough (and our night nursing care has been really good and reliable lately), that Mike and I have been able to do some leisure activities of our own. Mike's been training to run the Columbus Marathon (which is in October) and I've joined a tennis league. I feel like we are amongst the living again!!

And last but not least, we took Ben to get his two year old pictures taken today. The first one is in honor of his love for books. I like how the page he stopped to look at coordinated with his outfit. Couldn't have worked out better. And the second picture is his vacation shot. We like to pretend we went to the beach for Ben's birthday :)

Pool Date

Today my mom and I took Ben to the pool. The weather was a little questionable, but we already had plans to meet up with another friend for lunch before hand. We made the drive to Dayton and right when we got there, it started to rain. We had a nice lunch and just planned on going home afterwards. The weather held out long enough for us to give Ben a quick dip in the baby pool. He seemed to enjoy himself for the 5 minutes he was in the water. Because of his trach, we had to be very careful that he the water didn't get to close to his neck. I think Ben just thought I was giving him a cold bath in a big tub!


Ben and I were posing for a picture in the car before lunch. I didn't think I would get a picture of Ben in the pool, so I at least wanted one of our "attempted" pool date.


But, the weather cooperated briefly, so we were able to have a pool picture after all.


And this is Ben in his skivvies after we took him out of the pool. I love this picture because I think Ben looks so sweet and innocent - and it shows off his meaty thighs.

Little Miami Bike Trail

Last week, Ben went for a walk on the Little Miami Bike trail. This trail is a nicely paved wide path that runs along the Little Miami River (it is a 72 mile long trail). This trail has an access point five miles from our house, which makes it really convenient. You can also rent horses at this access point and the woman running the horse rental was sweet enough to bring a horse over for Ben to check out. You would have thought Ben had seen a horse every day of his life based on the lack of excitement he showed... he wasn't impressed to say the least. I should have taken a picture, but I forgot!



I did get a picture of Ben peeking out of his stroller though. It was so cute, he keep on pulling open the little spot between the hood and the side of his stroller to check out what we were doing.

Swing was a success!

We had a very nice visit at my parents yesterday (thanks for having us over, everything was wonderful) and the tree swing was a success. At first, Ben looked a little petrified and maybe on the verge of tears, but after a few more big pushes he started to enjoy it. He stayed in the swing for almost 30 minutes and he was really enjoying the scenery at my parent's house (lots of HUGE trees to admire). Luckily we got the swinging in first thing, because it rained the rest of the day. I love the first picture because Ben has his tongue out like he is really concentrating.

In honor of the holiday, we were all decked out in our red, white and blue attire... but at dinner it was taken to a whole new level! (NOTE: those are napkins that Mike and Ben are wearing)

Happy 4th of July!

I hope everyone has a safe and happy 4th of July. Ben, Mike and I will be heading to Dayton for the day to spend some time at my parents house. My brother and his wife (expecting their first baby in a month) will also be visiting. My parents put up a tree swing for Ben, so I'm excited to see what he thinks of that. From what I've heard, they put it on one of their huge trees, so it is sure to give Ben quite a ride!


Is this how they do it in the Color Guard?


I know that Section 7h of the flag code reads, "the union of the flag should be placed at the peak of the staff", but who's Peak and where is his staff?


Ben would like everyone to pause for a moment on the 4th to remember our Troops, past and present, which make protecting our freedom a priority. Thank you to our troops.