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".
Thursday, August 23, 2007
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!
Saturday, August 11, 2007
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.
Thursday, August 9, 2007
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.
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.
Thursday, August 2, 2007
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.
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.
Tuesday, July 31, 2007
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 :)
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 :)
Subscribe to:
Posts (Atom)