Ben Is Catching On To Sign Language - Kind Of

We continue to sign to Ben every day and for the longest time, the only sign he did back to us was "up" - and he used it when he wanted picked up. We have been working really hard on a lot of other signs, but specially the sign for "more". I noticed about a week ago that Ben was doing this shirt flick sometimes when I asked him if he wanted more. Ben's therapists have told me to be on the lookout for any signs that he seem to be using consistently even if they aren't the real sign (kids sometimes develop their own signs and as long as we can figure out what they mean, we can communicate with them). I'm happy to report that Ben's shirt flick has now consistently become his sign for more. He even does it when he wants more without me initiating it. It's GREAT! I feel like I am finally starting to communicate with him in some way. The only downside is that people who don't know us might think Ben is telling me off when he signs his version of "more".

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Some Great Progress

Ben has been making some great progress lately. He is spending more time on his belly playing with his toys... which is HUGE for him. He hates belly time because up until recently he wasn't able to do anything once he was on his stomach and I think he also didn't like the feel of the trach being pushed on. Now he is strong enough to prop himself up for short periods of time and play with his toys. I feel like he is getting much closer to being able to push up into sitting on his own.

"I can even balance on one arm."

"Come on mom, just take the picture already!"

Not The Wake Up Call We Were Hoping For...

This morning, our nurse woke us by pounding on the door and hollering for help because Ben's trach had come out. This is something that we were trained to handle, knew could happen, but thankfully hasn't happened - until today (this instance is a perfect example of why Ben needs a trach and CPR trained caregiver or nurse by his side 24 hours a day, even when he is sleeping). As soon as I heard the words "trach out", I darted from my bed and ran into Ben's room - Mike was right behind me and for those of you who know what a heavy sleeper Mike is can appreciate how amazing it was that his fatherly instinct overrode his heavy sleeping habits.

As soon as I approached the hall, I could hear Ben struggling to breath - I don't think I will ever forget that noise. It was louder than I would have thought and it sounded like someone having a bad asthma attack. His trach was lying in his bed next to him with his trach ties attached, Ben was starting to turn blue and he was thrashing around in a panic. I grabbed the trach and restrained him the best I could and pushed it in. I asked the nurse to suction and she said the catheter wouldn't go in. Ben was now dusky gray and lethargic. I checked the trach and realized it wasn't in right. I tried again and got it in this time - thank you God! The nurse suctioned while I held the trach and Mike pulled out the oxygen. Luckily, we have a high flow oxygen meter in case of emergency and we started give him 8 liters of O2. We didn't need to give Ben CPR, he was able to come back with the high flow oxygen. He needed O2 for about an hour, but was able to get back to room air after that.

This incident was a reminder to us of how precious every day with Ben is and how quickly something horrible can happen - and not due to neglect or anything on our part... just due to the fact that Ben has to wear a trach to survive and with wearing an external piece of medical equipment to breathe, life or death accidents can happen at any minute. I'm so glad our nurse didn't waste any time and just ran in and got us because she figured we could handle the situation the best. Our hearts go out to those families who have lost loved ones because of accidents with the trach. It only takes a few seconds for a trach to slip out and not all kids make a noise to let you know it is out.

This morning was a reality check for us that maybe we needed. I always take Ben's suction and emergency trach bag with me when we go out - but I don't always take his oxygen... now I will. I am now going to insist any day nurse who may be alone with Ben do a trach change with me so they can see how Ben's trach goes in.

We have no idea how Ben's trach came out. Either the Velcro on his ties got caught on his shirt and pulled apart, or Ben's little busy fingers found them. Either way, we are keeping a even closer eye on him.

Having Trouble Viewing Ben's Site?

If so, try typing in benrusso.blogspot.com instead of benrusso.com. Save that new address in your favorites. We aren't sure why, but benrusso.com isn't forwarding to his blogspot site any longer. If you know of someone still having trouble, please let me know... but if you are reading this message, that means you aren't having any trouble so congratulations!!

Learned Something New

Ben has learned something new today and I think it is hysterical! He has figured out how to pull his arm out of his shirt... and does so over, and over, and over. Ben chews on his shirt sleeve (he started doing this when we began weening him off his pacifier) and holds onto the end of the sleeve with his teeth and then voila', he can pull his arm out! Is he one smart cookie, or what?! Now he just needs to learn how to put it back on.

Thanksgiving Day

For Thanksgiving, we went to my brother's in-law's for the day (thanks for having us Ron and Noreen). We had a great time, enjoyed a wonderful meal and were happy to spend a day with family. Ron and Noreen have a really cool basement with a beautiful bar, lots of TVs, pinball machine, slot machine, real train crossing lights/alarm and an ambulance siren. It is definitely an adults playground!


Ben took a liking to everything their basement had to offer, but was especially fond of the slot machine. It didn't take long for him to figure out how to push the buttons to make it spin and as soon as the machine started spinning Ben started cracking up! He stood there and kept on pushing and laughing until he was too tired to stand (for Ben, this is about 5 minutes on his feet).


So, when Ben's trach comes out... no Disney World for him, we are going to Vegas baby!

Ben's Sleeping Style

Ben has a whole crib to utilize while he sleeps but for whatever reason, he wedges himself right up to the bumper pad. He wouldn't dare leave an inch to spare either! This is a time when I am thankful Ben has a trach... if he breathed through his mouth/nose, this might be a problem.

Isn't it a little early for this?

I got a little behind with Ben's laundry and didn't realize until it was time to get Ben ready for bed. So, we had no choice but to put him in his Christmas PJ's. He looked so darn cute in them I just had to post a picture. I'm sure the nurse thought we were crazy when she took his blanket off in the morning.

Mason Mini Marathon

Last weekend, the city we live in (Mason) had a mini marathon consisting of a 5k, 15k and a kids run. Mike and I participated in the 5k run with Ben. By no means were we the first to cross the finish line, but we had a great time and everyone was very understanding of our constant need to stop and suction him. Ben seemed to enjoy the ride in his jogging stroller and although it was chilly, we didn't have any rain. The whole event was nicely done and the proceeds raised go to Cincinnati Children's Hospital. We decided to make this race a family tradition and maybe next year we can tackle the 15k!

Mike loading the jogging stroller back into the car after the race. Good thing we only lived a few miles away because the trunk didn't close with the stroller and we had to tie it in!


Ben was very tired after the race! The cold air really tuckered him out.

Trick-or-Treat

My mom and I took Ben to a couple houses for trick-or-treating while Mike passed out candy at home. Ben was a little cow this year, with cow bell and all! Since Ben can't eat any candy, we only went to a few houses (otherwise I felt like I was just taking him around to get myself candy - especially when someone asked me what candy was his allowed to eat). We sat outside our house the rest of the night and passed out candy while Ben sat in his car and watched. He seemed to be really interested in all the kids coming up to us. We really lucked out and had great weather. Not too hot, not too warm... just PERFECT!

Ben wants to spend his time swinging!

Ben has been loving his swing lately... so much so that he doesn't want to get off. Since Ben knows the sign for "up", we usually sign "up" and Ben puts his hands up and does the sign too (up is the only sign Ben does and really seems to know). Ben has figured out that just because we sign and say "up", doesn't mean he has to do it back - actually if he DOESN'T sign "up", he gets to continue doing what he was doing before. When he is on his swing, he won't sign up to us no matter how many times we ask (and often it is because he needs to go inside for a quick trach suction). If we pick him up to take him inside before he is ready, he throws a fit until he is put back in his swing - and by fit I mean doing this whole body kick/buck that he has seemed to master lately. I am just so thrilled that Ben knows what he wants, has figured out how to communicate that to us and knows enough to get really mad if he doesn't get his way. It shows some great thinking on his part!

Pudding... YUM or FUN?!?

Even though we have been instructed from ENT not to do any tastes by mouth with Ben (because he aspirates and his airway is damaged from that), I decided to give it a shot today. At our last pediatrician appointment, we discussed how kids that don't eat or have tastes of food lose the desire to eat completely and their taste buds start to dull over time. In addition, I just didn't feel confident that Ben would learn to coordinate his swallow and breathing if he isn't even tested (how do you learn to ride a bike if you never even try - even if you fall you still learn from that, right?!) And, since his airway is already damaged, can it get worse? Plus, we have the luxury of a trach and we know the minute food starts to go into his airway because it makes his secretions we suction tinged that color and we can stop the tastes immediately and suction him really well. The doctor saw where I was coming from and agreed with me. He said I could do extremely small tastes (like the size of a few peas). The first time I tried to give Ben tastes, he didn't want anything to do with it. I think he forgot what it was like to sample food. All he kept on doing was knocking the spoon out of my hand anytime I got close to his mouth. The second time I tried was this afternoon. On the menu was chocolate pudding - very small bites of chocolate pudding. Right from the get go, he seemed more interested this time. The pictures below document Ben's pudding journey quite well. He had more fun playing than tasting, but he did taste a little. I was thrilled. Oh, and nobody tell ENT!


Hmm, interesting. Tastes pretty good, but feels like something I can have fun with!

OK, let's tip this over and start the party.

Better than finger paint because I can taste it too!

OOoooh, this is MUCH better if I just dunk my whole hand in... why didn't I think of that earlier.
I think I'm going to need a bath.

Beautiful Day for a Marathon

We couldn't have asked for a better day for the Columbus Marathon. It was sunny and between 50 and 60 degrees the entire morning. Mike was able to jog the entire race (26 miles) and did so with a smile! We saw him run by at the 14 mile mark and he gave Ben a high five. Although Ben didn't enjoy being in the car for 90 minutes (we found out that one hour is the amount of time he will patiently sit in his car seat), he really got a kick out of the runners once we got there. The first few minutes we were there, Ben was cracking up at the people jogging by. Even when Ben was done laughing, he couldn't take his eyes off of the runners. He loved it! I was glad we were able to be a part of this event.


Ben's front row seat in his car watching the runners go past. We also brought his stroller along to hold his equipment and just in case he didn't want to sit in his car any longer.

Ben and I waiting for daddy.

Ben and Grandma Deb still waiting for daddy.

Here he is!!!

and there he goes!

Sorry it has been so long since I've posted.

Hi everyone. We really don't have anything new to report. We have all been healthy and Ben doesn't have anything new happening in his medical or developmental world. The marathon Mike has been training for so hard is finally here this weekend. It is in Columbus on Sunday and my mom and I are planning on taking Ben to cheer Mike on at the 14 mile marker. Unfortunately, we can't stay for the entire race because Ben doesn't tolerate sitting still in his stroller for long - he wants to spend his time and energy rolling on the ground. Ben gets very grumpy if he doesn't get his way too and that makes for a long hour and a half trip back to Cincinnati. So we are playing it safe and planning the trip around Ben's nap and not spending too much time with Ben in the stroller. If only he slept in his car seat, we wouldn't have to beat it home so fast! Ben is excited though and ready to show his support.

We are also anxiously awaiting Halloween this year. I can't wait to put Ben in his cow costume. This will be the first year we take him trick-or-treating. We plan on going to just a few houses because Ben really won't be eating the candy and I definitely don't need it! I have a chicken hat to wear too so we are going to be a group of farm animals! Ben tried on my hat (yes, it fit him too) and decided he wanted to stick with the cow costume - more his style.

Is this fun or what??!!

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Old habits die hard

So Ben use to have an old habit of nose picking when he was one. He got tired of it after a few weeks and hasn't been picking since... UNTIL yesterday. He is back at again!! At least he is mainly doing it in the privacy of his own home

.

Ben is working so hard to crawl

This past week, Ben has been spending a lot of time laying on his belly, just hanging out. He has also been curling up into a ball and trying to push up. I think he is getting so close to crawling - just isn't strong enough yet. If I try to help him push up, he just rolls over and quits... if I let him go, he will work on it for a while. That is how Ben is with everything though. He will only do it if it is on his terms! He's such a little rascal.

New Bath Seat

I ordered Ben a new bath seat that sits him more upright. Even thought he can sit upright on the floor, he still hasn't mastered the tub (his trach, poor balance and tightness in his hamstrings make it very challenging). Ben's old bath seat was a special therapy seat that reminded me a chaise lounge. Ben enjoyed it, but he really wasn't submerged in the water and I felt like it wasn't helping to eventually transition him into the tub one day without any kind of seat since he would be use to leaning back so far. Ben is learning to like his new seat and he even splashed around with his hands yesterday (that was a first for Ben since his hands never reached the water in his old bath chair and his has a lot of sensory issues with his hands).

Common Grounds Park Fundraiser a Success

I had the opportunity to go to the Common Grounds Park fundraiser last Thursday (thanks for the ticket mom) with my brother, mom and Leslie (the mom of another local CHARGEr I've become friends with). The event was a HUGE success and couldn't have been put on any better. The room was packed and it was heartwarming to see so many people in one room supporting a park for special needs children. The speaker, Dick Vogt, was incredibly moving and inspirational. I felt honored to be in his presence and meet him. Thank you to everyone who spread the word about this park and those who were so generous to send donations and/or buy tickets. Your money is truly going to a very worthwhile cause.

On a side note, please pray for one of my good friends who's water broke this past weekend. She is only 22 weeks pregnant with twins.

Ben met his cousin Elle for the first time

So we took Ben over to my brother and sister-in-law's to meet his cousin for the first time. Ben isn't around babies very often, so I figured he might not be too interested in Elle. We laid Ben next to her on the floor and he looked at her for a few minutes. She was looking at Ben too and seemed to be smiling. Ben wasn't as happy! After a few minutes of staring at each other, Ben started crying. Maybe he knows that he has to share the spot-light now and isn't too excited about it.

"I don't know about her"

My sweet niece - 3 weeks old

In honor of the US Open, Elle supported her tennis attire

Good news regarding Ben's urinary track reflux

This past week, Ben had his follow-up testing to see how his urinary track reflux looked after the deflux injections. We met with his Urologist to discuss the results on Friday. His doctor said that his kidneys were still small, but they looked good (not swollen or anything). He also said that his left side showed no reflux at all and his right side showed Grade 2 reflux (Ben use to have Grade 4 on both sides - so that's a great improvement). And, he said that even though the radiologist reading the results gave his right side a Grade 2, he personally didn't think it looked like a Grade 2 to him... he thought it seemed less than that. I was thrilled to hear this news. With Ben, we are usually always receiving bad news, so I've kind-of started expecting the worst - but hoping for the best whenever Ben has appointments.

The plan is to follow-up again with an ultrasound to look at his kidneys and do some blood work. If all is ok with that, no need to see the doctor until 1 year from now. The week before that 1-year appointment, we will have another kidney ultrasound, blood work and a VCUG (the test that shows reflux). I am hopeful that by then, Ben's reflux will be even less. At that time, we will decide whether to do another injection and address his undescended testes, or just address the testes if the reflux is completely gone. Some good news was nice to receive! We needed it.

Common Grounds Park - Need Your Help

Yesterday I posted an article on Ben’s blog (see below) from the Cincinnati Enquirer about an all-inclusive park being built in Mason (all-inclusive means that the park is equipped and specifically designed to meet the needs of disabled children). I’ve sent an email to the president of the Mason Parks and Recreation Foundation thanking her for taking on this project and explaining how much Ben would benefit from a park like this. She thanked me for my message and told me she shared my email with City Council last night and also conveyed how important it is to sell tickets to their upcoming fundraiser on September 13 at the Great Wolf Lodge in Mason. It is two weeks away, and they still have 400 tickets to sell out of 550.

Tickets are $100/person (tax-deductible donation) and tables of 8 can be purchased at $750. This includes cocktails and a silent auction beginning at 6:00 p.m. Sit-down dinner will follow at 7:00 p.m. Dick Hoyt takes the stage at 8:15. Hoyt's son, Rick, 45, was deprived of oxygen during birth when the umbilical cord wrapped around his neck, leaving him a quadriplegic. Rick also has cerebral palsy. Yet Rick has joined his father as "Team Hoyt" in marathons and triathlons all over the world, including Iron Man Hawaii. Their story is truly inspirational. Here is a link to the clip from the Today Show: http://www.youtube.com/watch?v=flRvsO8m_KI

It is VERY important to prove to City Council and the rest of Mason that this park is something we need and people are interested. To do this, they need to sell out! It would be a terrible shame if this park didn’t come to fruition.

To reserve tickets for the September 13, 2007 Team Hoyt speaking event, send a check made payable to Mason Parks & Recreation Foundation to:Mason Parks & Recreation Foundationc/o Rachel Kopfler6000 Mason-Montgomery RoadMason, OH 45040
Or you can go online to buy your ticket using a MasterCard or Visa. Simply click here: http://www.masonparksfoundation.citymaker.com/page/page/4449590.htm

If you aren’t able to attend the event, but would like to make a tax-deductible donation to this very worthy cause, you can do so by making a check payable to Mason Parks & Recreation Foundation and send to:
Mason Parks & Recreation Foundation
6000 Mason-Montgomery Road
Mason, OH 45040or call 513-229-8550 ext. 5550 and leave a message for Foundation President Rachel Kopfler.
Or, you can donate online by using Visa or MasterCard by clicking here: http://www.masonparksfoundation.citymaker.com/page/page/4449590.htm

Common Grounds Park

We are very fortunate to have a special needs park being built in our town. Ben will definitely be getting a lot of use out of it once it is completed! Below is an article about it from the Cincinnati Enquirer. Also, here is a link to the park's website: http://www.masonparksfoundation.org/home.html

Fundraiser helps disability-friendly park
BY CARRIE WHITAKER CWHITAKER@ENQUIRER.COM
MASON - Parks and playgrounds aren't difficult to find around here for your child, unless you're the parent of a child with disabilities.
Nationwide, only about 100 playgrounds go beyond the bare minimums of federal requirements to be fully accessible to children with disabilities, says Mason resident Rachel Kopfler.
So this mother of five - including triplets who are just turning 4 - is spearheading an effort to build a regional, "barrier-free" playground in Mason to be called Common Ground Playground.
"It's so important that kids with special needs play alongside their peers," Kopfler said. "A lot of people think of playgrounds as a luxury, but it's an important part of a child's development. We see this as something all of Cincinnati could benefit from."
That includes one of her triplets, Grant, who was born with a spinal cord defect.
"He walks on braces and he's tiny, but he does walk," Kopfler said. "We think he's doing so well because he has four typically developed siblings close to his age."
All children with disabilities need that social bonding, she said.
For the last year and a half, Kopfler, her husband Rick and a band of volunteers have been working with city officials to turn a dream park into a reality. The land - 23 acres off U.S. 42 - is already allotted for the park. The design is based on a similar playground in Florida.
The idea is to build a playground that all children want to play in, with features that won't alienate those with handicaps, Kopfler said.
The Mason Parks and Recreation Department helped Kopfler and her group set up a nonprofit entity - the Mason Parks and Recreation Foundation - to raise up to $500,000 for the playground.
"The idea is to raise as much as we can," Kopfler said. "The city has some money earmarked for it, but we want to do more."
She hopes to see kids playing together at the playground by spring 2010. A fundraiser for Common Ground Playground is scheduled for Sept. 13 at the Great Wolf Lodge. The event includes keynote speaker Dick Hoyt of Holland, Mass.
Hoyt's son, Rick, 45, was deprived of oxygen during birth when the umbilical cord wrapped around his neck, leaving him a quadriplegic. Rick also has cerebral palsy.
Yet Rick has joined his father as "Team Hoyt" in marathons and triathlons all over the world, including Iron Man Hawaii.
Hoyt carries his son in a special seat when they bike, pulls him in a boat when they swim and pushes him in a custom wheelchair when they run.
"His whole life has been dedicated to inclusion," Kopfler said, making Dick Hoyt the perfect choice for a speaker.

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".

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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.

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.