A Huge First for Ben and I

This morning Ben and I did something together we have NEVER done before. I drove him to the grocery store and did a little shopping ALL BY MYSELF.

Because of Ben's trach and his frequent suctioning, whenever we go anywhere in the car, we need someone to sit in the back with Ben and suction him. I've always been a little envious of those moms able to take their child out alone.

Today Ben's secretions have been pretty good (only needing suctioned every 5-10 minutes) so I decided to pack Ben up and go to the grocery store about 5 minutes away. I figured if I went early, it wouldn't be too busy and it wasn't too hot outside yet either. I took Ben's artificial nose off his trach so if he coughed hard enough, hopefully he could cough them out. I also knew of a few places on the way that I could easily pull into if I needed to get out and jump in the back to suction him - but I ended up not needing to suction Ben until I was in the parking lot of the grocery store. It took much longer to get Ben, his cart cover and equipment in the cart by myself, but boy was it worth it! I got chocked up a few times in the store just because I was so excited for our independence and also because I've waited over two years for a moment like this. I felt like such a mom... it was wonderful!!! I was so caught up in the moment though, I forgot to get two things on my list (milk and sour cream) and my list only contained about 10 items. I only wish I had a camera or something so I could have documented this moment (and make a nice scrapbook page out of it).

So now in the future, I feel comfortable taking Ben out on my own - given it is only within a three mile radius... anything involving the highway is too dangerous because it isn't safe to pull over on that consistently and it takes too long to get off an exit if Ben needs suctioned. But at least I have the grocery store, Hallmark, and a half-priced book store!

Fishing with Ben

Ben has developed quite the arm lately and really enjoys throwing his toys. At home, daddy has turned it into a fun game we like to call "Fishing with Ben".

Make an on-line slide show at www.OneTrueMedia.com

Sorry it's been so long...

since I've posted. Things here have been so hectic lately. We only have day nursing once a week now, so I haven't had as much time to stay caught up on Ben's blogs or reading others' blogs. I really enjoy spending the extra alone time with Ben, but boy does he wear me out! I don't understand how someone so active can only nap for 30 minutes a day. Ben has also been cutting all four of his two year molars, and that has been making him really junky and more irritable than normal (if only it made him more tired too, but no such luck). He is also developing quite the temper. He is acting like a typical two year old. He won't share, he throws fits when he doesn't get his way and he knows how to push our buttons. We love it! All you parents of special needs kids understand how exciting it is to see them developing like this - even if it is bad behavior, it still shows progress. Hope all is well with everyone and stay in touch!

Our niece is HERE!

Our little niece Elle, was born yesterday, August 10 at 10:15 a.m. by caesarian section. Elle weighed in at 8lbs. 7ozs and is 19 1/2 inches long. Both mom and baby are doing great! Ben is very excited to meet his new playmate when she comes home from the hospital.

Birthday Pictures

I thought Ben was very impressed with the cake I made...

...until I realized that he actually wasn't impressed, he just wanted the candles off. I'm sure he wondered how he aged so fast.



"Wasn't I just one last year?! Let's get these extra out of here" (I put all the candles on because I thought he would like seeing the whole cake lit up - guess I was wrong)


Ben got a big wheel type bike for his birthday from his daddy. Ben is a little wobbly on it (so we tied him on), but he loves it! Seeing the peddles move around and around makes him laugh. The best part about the bike is that the handlebar comes off as he gets bigger and can pedal on his own.

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.