Happy New Year

Happy New Years everyone. Hard to believe 2009 is going to be here tomorrow.

On January 5, Ben will be back at school. He is going to be starting to ride the school bus once he goes back. Pretty exciting, isn't it? For preschool, only the special need kids have the option for busing. They ride the bus with only other preschoolers. A typical preschooler can ride the bus if they live on the same street as a special need child and are willing to walk down to their house. I was a little hesitant at first because I knew Ben wouldn't tolerate waiting outside for the bus. But, Ben's teacher called and asked if we had him ready but inside, would they stop and wait for us. They were very accommodating. So, the bus will pull up at approximately 8:45 a.m. and wait for us. I will then carry Ben to the bus and his nurse will carry his equipment (suction machine, trach bag and backpack). There will be a carseat on the bus for him to ride in. I'm really excited and hopeful that Ben enjoys the ride. On the first day, he will just be riding the bus home. If all goes well, he will start riding daily after that.

Quick Update

Hi everyone,

Hope you all had a Merry Christmas. We did. For the first time since Ben's birth, we had a nurse on Christmas Eve and Christmas night. What a nice treat! It was wonderful not having to cut our time together short to rest up. And we got so many nice gifts from each other, our families and our wonderful nurses. Ben even participated in some of the gift opening (with the help of Pap Pap). It was a Christmas to remember forever! This coming weekend, Mike's mom, sister, brother-in-law and nephew are coming to visit and celebrate a late Christmas with us. We are looking forward to it.

Ben is on Christmas break from school until January 5. We have two appointments during break. One is a renal ultrasound tomorrow to follow-up on the cyst they found on his spleen three months ago. The second is an opthamology appointment on Friday. Just the normal annual eye dilation to check the peepers.

Below are pictures of my favorite Christmas gift. Santa surprised me/Ben and left it under the tree. I told Santa once about a little Lazy Boy I saw another CHARGE boy in and he remembered!

Pap Pap Tom or Pap Pap Tim??

You know how they say everyone has a twin somewhere out there in the world? We've thought for a while that we've found my dad's (Ben's Pap Pap). Dr. Timothy Johnson provides on-air medical analysis for "World News Tonight," "Nightline" and "20/20." He has also provided commentary on medical problems and answers for viewers of ABC News' "Good Morning America". He has an uncanny resemblance to my dad and his mannerisms... so much that it is spooky seeing him on TV.

We went to my parent's house today and my mom thought it would be funny to print and laminate a card of Dr. Tim to see if Ben could tell the difference (remember, Ben LOVES my dad and spends most of his time either staring at him or a picture card of him, so he should know better than anyone else the real Pap Pap). Well, not only did Ben not notice the difference between the two, he developed a love for the new "impostor" Pap Pap card. Ben is now carrying around a card of Dr. Timothy Johnson everywhere. It is too funny!

You be the judge, are Tom (Pap Pap) and Tim (the Doctor) twins separated at birth?

Ben's School Skills

Ben has learned so much since he has started school. He is being called "a little sponge" by his wonderful aid. They are truly amazing with him at school and words can't express how thankful I am to have such a great team working with him - his aid, his teacher, therapists and even his nurses have all done so much for him and are the reason for his success.


Over the weekend, I decided to get on tape some of Ben's skills (I'm taping and my mom and dad are Ben's fans). He just loves working if you cheer him on - he is such a ham for a round of applause! He even has them cheering and clapping him on at school. Right now, that is such a huge motivator for him, which works for me because it is free!

The video contains five different clips of Ben - I edited each clip down so the entire video wasn't too long. You'll notice Ben chewing up his shirt collar in the video. The more excited he gets, the more he chews. That is one of his bad habits. We've given him therapy toys meant to provide oral input and he doesn't like them. He would rather chew holes in ALL his shirts and fill his mouth with lint. You'll also notice Ben is wearing his cochlear implant in the video. He is great about wearing his implant when doing school games - I think because he wants to hear the cheering! The best clip is the very last one. He is able to do that whole sheet of letters. Amazing!

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

Great Post

This was a previous post on another CHARGE child's blog. It explains some of the major obstacles of CHARGE so perfectly, I had to post it on my site.

"Recently, I was reminded of my first opportunity to attend a “CHARGE Syndrome 101” training to begin to understand the syndrome of my infant daughter. We did a simulation where we plugged our ears and covered our eyes to simulate the dual sensory impairments of CHARGE. Just impacting those two senses in a relatively small way – ear plugs to cause a mild loss and looking through a plastic bag to blur and distort vision – set all of us behind greatly. We had a hard time carrying on conversations, moving about the room, and engaging in any activity. Most people shut down, tried to disappear, hunched to make themselves small, and stayed in their spots avoiding conversation or contact with others.

After we’d experienced that and realized the incredible impact a small impairment can have, the presenters told us to then imagine that ALL of our senses are impaired. Imagine that you can’t hear or see. Your muscle tone is low and your balance is off or non-existent so it takes lots of energy just to stay upright in your chair and control your body in space. You can’t eat so you’ve never experienced taste and have very limited oral motor skills. You can't smell because your nasal passages have been closed and even once they are open, your sense of smell is probably non-existent. You are tactile defensive so you have had limited touch experiences and the ones you have had are uncomfortable to you. Not to mention the many uncomfortable and painful medical procedures endured from birth on.We learn everything through our senses. If you get poor input from your senses, how do you understand your world? Even if it were you inside, as you are now, with “normal” intelligence, how would you learn? How would you show us what you know?

True Love

Ben has another love other than Mickey Mouse - my dad, his Pap Pap. And it is more than love, it is an obsession. He can't get enough of him. When my dad is around, all Ben wants to do is sit on his lap, look at him and occasionally touch his hair. Ben usually isn't a fan of lap sitting and if he does, it is short lived. But for my dad, he will sit on his lap for an entire day! I'm not kidding. And Mickey Mouse doesn't even have to be on TV. He will sit there without a thing to do for hours on end. My dad can't even leave the room without Ben having a major meltdown.

On Sunday, my mom and dad came down for the day to keep me company since Mike was out. When they left at 7:00, Ben was devastated. He cried for 30 minutes and kept on scooting over to the door. He was heartbroken. Ben even has a matching game of our family members' pictures (my mom made it for him on Thanksgiving to give him something to do). Wouldn't you know that Ben has become super attached to the picture of Pap Pap. He takes it everywhere with him... bed, school, the car, on walks, etc. Tonight he wanted to take it in the bathtub and I had to draw the line there!

So I thought I would share some pictures of Ben and his idol "Pap Pap".

Sleeping with the card of Pap Pap

And enjoying time with the real thing!

Surgery Officially Canceled

I've canceled surgery and I feel like a huge weight has been lifted off my chest (at least until it is scheduled again). I'm actually really happy with my decision especially after I was informed that Monday starts the restricted visiting hours... which means immediate parents only and nobody with any colds/illnesses allowed.

My mom was going to stay over at the hospital with me to help take care of Ben when Mike went home to sleep for the night (my mom and I fit better in the pull out couch than Mike and I do). That wouldn't have been allowed. Also, I've come down with something and have lost my voice. Odds are, I would be better by then but if I wasn't... I wouldn't be allowed. My mom is also starting to feel like she is coming down with something.

So now we have one less thing to worry about this December. A Christmas without surgery and recovery will be nice!

Decided to Cancel Surgery

I've decided to cancel Ben's surgery and will call to do so first thing tomorrow. I just have too many reservations. I hate putting Ben in the hospital overnight during cold/flu season. I worry he is going to catch some nasty hospital bug and with his trach, that is easy to do. Plus, this isn't really something that has to be done now... it can wait until summer when he is out of school and not as many things are going around. This is also about the one year mark from Ben's leg break and I just want him to have an enjoyable holiday season without feeling miserable.

I LOVE Paint

One of Ben's favorite school activities is paint (I tend to avoid painting at home because of the mess). During play time, they give Ben a choice of activities to pick from via picture cards. He ALWAYS picks paint. Ben's nurse sent me a picture from her cell phone this morning of Ben painting in school today. It looks like he is painting with a Q-tip and doing quite well (what a great idea they had to incorporate working on his pincher grasp with the painting). When Ben is painting, he first works on the paper and when he feels he doesn't have enough room left, he moves to the next open canvas - his face!

I sent in this Crayola smock for him to wear during messy activities. It is great because it keeps his clothes clean. Most smocks leave the arms exposed, which Ben gets the most dirty. I highly recommend it! Even Ben's aid has to wear a smock to protect her clothes. He's been known to turn the brush on her pretty outfits.

Surgery Still On for December 15

Ben is still a "go" for surgery on December 15. Our mission now is to keep him healthy until then (not an easy task in the preschool environment). He has had about three colds in the last month alone. These colds have given Ben a runny nose for the FIRST TIME EVER (right nostril only, not sure why). For most this wouldn't be exciting news, but for us it is HUGE! This means his nose is still open from his last coanal atresia repair... information I already knew since I'm still able to pass a tube down his nose twice a day but the confirmation of a runny nose is still exciting when he's never had one before.

The surgery in a week is to bring down the testicles - a pretty involved procedure from what I've been told. He will have to stay overnight in the hospital and will be missing that entire week of school (which happens to be the last week before break). The goal is to do the entire surgery laproscopically, but if they aren't able to see what they need they will have to do an open procedure. I'm praying for a laproscopic procedure and that everything goes smoothly with the surgery and recovery. I also hope he isn't in too much pain. The surgery is slotted for 4 hours. When we have a chance, we will post an update on the blog.

Ben's Doctor's Appointment... good news and bad

Ben had two doctor's appointments this week. One was another follow-up on his nasal opening surgery. I'm still dilating his nose twice a day and every time I dilate, I feel like I'm having to push through some membranes. His scar tissue is trying hard to close over and I'm not giving up the fight. So far I'm winning! The nose is still open on both sides (I was worried the left side closed up before the sinuses because I couldn't get through). This is great news because this is the LONGEST Ben's nose has ever stayed open. We are going down to a smaller size dilating tool. The thought behind this is that maybe the smaller tool won't cause as much trauma and will allow the nose to heal a little but still allowing me to make sure it stays open. Maybe the other one was just too big and his nose isn't meant to have an opening that large. The goal is that I will one day be able to stop having to dilate and his nose will stay open on its own. We will continue twice a day dilations in the meantime and will follow-up again in a month.


Ben also saw his Ortho doctor to follow-up on his femur fracture from last December. The bone is completely healed with only a small amount of scaring. That is the good news. The bad news is the his bone is curved. They seem confident that over time Ben's bone will remodel itself into the correct position. His bone also healed rotated a little, so that too will have to remodel. And, we learned something that we weren't aware of. Ben's hip sockets are not where they should be. They see hips like his in their CP kids. The good news is that when he was put in frog position for one of the Xrays, the hip moved into the correct position. That would have been very bad if it didn't. But, they need to keep a close eye on it and make sure it doesn't slip anymore out of place. This hip socket issue was present even on his original Xray the day he had the break, so this isn't related. They also said that some of their CP kids do walk with hips even worse than Ben... that was my main concern. They didn't say, but I'm sure this hip issue only adds another challenge to Ben learning to walk. Not only does he have weak muscle tone and tight ligaments, a major break to add weakness in his legs, missing semi-circular canals (the part of the ear that controls balance), a small and damaged cerebellum (the part of the brain that helps with balance if the semi-circular canals are not functioning), he also has this hip issue.


I'm still holding out hope that Ben will be able to walk one day, but with all he has to deal with... I'm starting to wonder how he could possibly overcome all of that. It is just starting to seem like I'm holding on to an impossible dream. I just haven't been ready to accept that fact that Ben may never walk, and I'm still not ready to accept that.

He needs to see a different Ortho doctor in 4 months... one who specializes in Hips. There are only two of them. One of them was the previous doctor Ben saw who we really disliked. She seemed too busy to even take the time to look at his Xray. And, she NEVER even mentioned this hip issue and has seen his a dozen times. Needless to say, I choose the other doctor. I also have called to set Ben up for Hippo Therapy come Spring. I'm hoping that may help his hips and balance. Katie Kauffman does Hippo Therapy and her family says it has helped her a bunch.


Here are Ben's Xrays. The notes are more reminders and comments to myself so I remember what I'm looking at. You can click on the image to view it larger.

So Proud

I am so proud of Ben and his progress at school. He is doing amazing and has such a wonderful team working with him. It seems his team really understands the best way for him to learn and is presenting him with new things every day... new things that he is picking up so quickly! He is able to match colors and pictures, hand over the correct picture card when asked for it with sign language, sort the right chip into the same colored bowl and much more. As long as you give him a big applause after each correct answer, he keeps on working away. I'm just thrilled and impressed with our little hard worker.

I also took his cochlear implant in to Audiology today to make some modifications to it. Hopefully with these new modifications, he won't yank it off when someone yells (he hates that) and will wear it more at school.

Itsy Bitsy Spider

Ben was our little itsy bitsy spider for Halloween. I think the costume scared him. He probably thought is was another medical contraption we were putting on him.

"What is this thing I'm wearing? Get it off, get it off, get it off!"
"Oh my goodness, I have 6 arms now"

"Maybe I can chew off the extra four"

"The best defense is to just sit still. I'll mentally go to my happy place."

School Pics

When I dropped Ben and his nurse off at school, I got a bag of stuff from his aid. Mostly it is just papers and things from his missed week of school, but the real treat was his school pictures. I've been anxiously awaiting them for the past three weeks. They turned out great and I just LOVE them. I can't get over how old he looks in them and he looks so sweet.

Back at School

Ben is back at school today and I think he is thrilled to get out of the house. Hopefully he has a good day. He is back to his old self and doesn't seem to be in any pain. He is even tolerating the nose dilating really well. He never fails to amaze me!

Feeling So Much Better

Ben is feeling so much better today. He is amazing with his recovery. We are working towards getting him back to full feeds and his bloody drainage is much less.

One Night Down

Ben had a decent night last night (considering). He rested on and off all night and I was able to manage his pain with Tylenol - I didn't want to give him Osycodone unless he really needed it since it upsets his stomach so much. The bleeding was our biggest problem. He had so much blood running down his face from his nose, pooling in his mouth and coming out his trach. I dilated his nose for the first time this morning with the help of my mom and the nurse. It was every bit as awful as I was expecting - I won't get into the details of that.

Ben is home from the hospital

Ben's coanal atresia surgery went fine today. We were surprised when the doc said he wanted him to stay overnight to give us time to learn how to dilate his nasal passages. I really, really didn't want to stay overnight and after enough pleading and explaining what a quick learner I was, the doctor said that was fine. He had a resident come to recovery and show us how to dilate and had me try on Ben after watching him do it twice. Poor baby. Even with heavy Morphine, that sent him through the roof and caused so much bleeding. I get sick to my stomach thinking about having to do that twice a day for the next 10 days. Ben is hurting pretty bad right now and is a bloody mess. His nose, mouth and trach are draining copious amounts of blood. I don't remember it being so bloody previous times.

Let's hope Ben doesn't have to go through this for nothing... stay open nose! He won't be going to school at all this week. They said he will still be too bloody. We canceled our night nurse for tonight because he just needs people who know him taking care of him. My mom is coming up to help.

Surgery is Tomorrow

Ben is all set for his coanal atresia surgery tomorrow. It will be an outpatient surgery and he is scheduled for 1:04 p.m.

Can't Get Enough of MICKEY!

I've mentioned in previous posts that Ben has developed an obsession for the show "Mickey Mouse Clubhouse". I bought him a few Mickey Mouse books and he LOVES them too. Ben has grown so attached to one of his books that he takes it everywhere with him... walks, to school, holds it during tie changes, in the car, etc. I tried to take him to the grocery store and made the mistake of leaving the book at home. He cried the ENTIRE car ride and time in the store and back home. Sorry Ben.

Last night Ben took the book to bed with him and wouldn't even let go of it when he fell asleep. How cute are these pics. (Ben sleeps with his eyes open because of his facial palsy and the room is actually dark, the flash just makes it seem bright in there.)

Great Day - We Needed One!

Ben had a great day today at school. He had very few crying episodes and seemed to enjoy himself most of the day. The highlight of his day was the visit from the local fire squad and tour of the fire truck. Ben LOVED it and the fireman were SO sweet with him. One of them even asked if he could carry Ben and walk him through the fire truck! How sweet is that?! And Ben loves men, so he couldn't be happier. He actually cried when it was time to leave. We needed a great day like this before surgery.

New Surgery Date

After I didn't hear back again about a new surgery date, I emailed our ENT doctor. I explained the situation and the trouble with the surgery being pushed back. I'm happy to report that I got a phone call a few minutes ago letting us know surgery is going to be on Tuesday, October 21. And luckily, I still took Ben to his physical yesterday just in case surgery was in 30 days and also to get his flu shot.

It's amazing what can be done when the doctor is the one requesting it instead of the parents. Let's pray for a successful surgery and speedy recovery. This will be the forth time we have tried to open Ben's nasal passages, but the first time trying without stents.

Not Ben's best week at School

Ben wasn't in the mood for school this week. He seemed happy to get there, but shortly after school started and he didn't get to do things his way, it all went downhill. He was very grumpy, cried a lot, won't wear his implant much and tried to bite the closest person to him in his anger fits. Poor Helga (Ben's aid), got bit at least once a day and Ben left teeth marks once. So sorry Helga. Hopefully this soon passes and Ben becomes the hard working student again.

Surgery Canceled ... probably

We got a call from Children's today saying that Ben's coanal atresia surgery (opening his nasal passages) scheduled for next Friday is canceled for now, but may be put back on the books. I guess the doc "may" be going out of town and is canceling everything for now, but there is a small chance he might not go at the last minute. WHAT?!? And that was the answer I got after lots of prying.

So, they are rescheduling everyone on that day. For most, no big deal... for us, a huge pain. His big urology surgery was specifically scheduled two months AFTER this surgery... and the next available date for the coanal atresia repair is December 16 - a day AFTER the urology surgery. That obviously isn't going to work. They are trying to see if the O.R. can give them any extra time so Ben can get his coanal repair done sooner. Also, Ben was scheduled for a pre-surgery physical on Monday for this surgery. We've decided to keep the appointment since I've arranged the nurse to stay longer that day. We will have Ben get the flu shot during that visit and in case surgery does happen in the next 30 days, he will have a current physical. Our Friday nurse will now have to be re-scheduled for that day. Hopefully she didn't get booked on another case already.

Misc. School Pictures

Ben's teacher sent me some misc pictures she has taken of Ben at school.

Ben has started wearing his implant at school for most of the day. He goes into the "quiet room" first thing in the morning (the quiet room is also the observation room) and plays with some of his musical toys (we sent his favorite music box to school for this purpose). He is willing to put his implant on to hear his music box. Once the implant is on, he will leave it on until he gets upset or it falls off. He goes into the "quiet room" twice a day to get his implant on. So far, it is working like a charm!

This is Ben getting his foot painted for a special craft they made. Rumor has it that we can order items with his foot print on around Christmas time.

And this is Ben sitting on a wedge at school like a big boy. He only has a little support from Trish, his PT. I love this picture!

Mickey at School - A Dream Come True!

Ben LOVES the show Mickey Mouse Clubhouse. It is all he wants to watch when he watches TV . And the show gets him all wound up and vocalizing like nothing else (he use to have this same obsession with Yo Gabba Gabba but his taste has matured to Mickey).

Ben's school knows about his love of Mickey and today I couldn't even pry his Mickey Mouse Clubhouse book from his hands, so he took it to school with him. His teacher and aid decided to pull out a Mickey Mouse matching folder game they have... and Ben's expression was priceless. I'm so thankful they had a camera to capture that moment! (After seeing this picture, I'm glad I took Ben for a haircut today too... he hair was a tad unruly).

Visit with Ben's Great Grandma

My grandmother is currently in town and we got to visit with her all day on Thursday. It was wonderful having her here. This is the first time she has made the trip to Dayton/Cincinnati since her husband/my grandfather passed away. It was a big step for her. My mom stayed with her in Pennsylvania for a few days then brought her home with her Wednesday. She will go back on Sunday. While she was visiting us in Cincinnati, she got to see Ben in school, paint pumpkins with us and just visit. We enjoyed seeing you Grandma!

Sad News

Our CHARGE friend Lucas passed away today. Our hearts and prayers go out to Lucas' family. I'm so sorry to hear this news.

Pray for Lucas

One of our Charge friends is very, very sick right now. Lucas came down with an awful bug that put him in the hospital. The bug has caused a lot of life threatening problems for him and he is in the ICU right now fighting for his life. Please pray for Lucas and his family. The doctors have told them they don't know if he is going to make it. At this point, they are praying for a miracle.

To read more about Lucas and his struggles, check out the link to his site on the right of this page under "Favorite Sites". When something like this happens, it reminds you how precious every day is with our little CHARGErs and how something like a bug is all it takes to cause so many other complications.

Mum Festival/Parade

The city my parents live in (Tipp City, Ohio) have a big mum (the flower) festival every year in the fall. This year, we decide to visit with them for the day and take Ben to the mum parade. The weater was overcast so Ben didn't need his sunglasses for the bulk of the parade, which he enjoyed. We had a great day! These first two pictures crack me up because Ben is more interested in us then the camera - which is odd for him. And the last picture shows Ben holding his cochlear implant. He wouldn't wear it for the parade, but he was careful not to let go of it because he knew we would try to put it back on.

Calling All Canned Beverage Drinkers

An ongoing project Mason Early Childhood Center (Ben's school) supports is the aluminum can pull tab collection for Ronald McDonald House. Ronald McDonald House is a nonprofit facility where families with critically ill children find housing and support while seeking medical treatment at Cincinnati Children's Hospital.

We were fortunate enough to live so close to Children's Hospital that we didn't need to stay at Ronald McDonald while Ben was in the NICU for four months. But their facility is truly a blessing for so many families like us, but don't live close to the hospital. I can't imagine the additional stress emotionally and financially it is to find a hotel to stay in for months on end while your child is in the hospital.

The pull tabs are recycled by Ronald McDonald and the proceeds go towards providing services for these families. Last year, Mason Early Childhood Center contributed over 100 gallon bags of pull tabs!

Our family is participating in this project and are asking for your help. Please send us the pull tabs from your aluminum cans and we will give them to Ben's school. We will be collecting tabs all year! Thanks for your help. My goal is to collect the same amount of tabs of adult beverages Mike had consumed during his fraternity years... so start saving! That's a lot of tabs!

Our address is:
7713 Alexandra Drive
Mason, OH 45040

Cardiology

Ben had his follow-up with Cardiology today. His previous cardiologist left Cincinnati Children's for a position as head of Cardiology in another Children's Hospital. We were so sad to lose him because he was one of our favorite doctors.

Ben's new Cardiologist seemed very nice and informative. After an EKG, he determined that Ben's irregular heart beat is still stable and unchanged, which is great news. He wants to see Ben again in 6 months for a 24-hour HOLTER monitor. Because it was our first visit with the new doctor, he went over the warning signs of Ben's heart problem and what we would need to do if Ben fainted or lost consciousness. Basically we would have to start and continue CPR if Ben went unconscious and call 911 to be taken to Children's immediately. At that point, a pacemaker may need to be placed. It wasn't anything I already didn't know, but still scary anytime you have to have a conversation about a pacemaker.

That is the worst case scenario and something they don't anticipate happening. The hope is that since Ben has been stable with his rescue beats since birth, he will continue to be for the rest of his life. Ben will continue to have yearly HOLTERs just to keep an eye on things.

Apple Picking and Parade

I've been wanting to take Ben apple picking and decided to do so this past Saturday with my mom (Mike had to work). I found a place about 30 minutes from our house and called to get all the details. We wanted to get there right when it opened at 10:00 a.m. so we left my house promptly at 9:30. However, we couldn't get there due to a parade. We decided to stop and enjoy the parade since we couldn't go any further anyway. It ended up being the Shriner's Parade we saw and it was a very nice unplanned and unexpected activity. Below are some pictures. We never did make it apple picking. When I called to get new directions after the parade (some roads were still closed down) we were informed that apple picking wasn't until 1:00 p.m. that day - an important tid bit of information that wasn't told to me the day before.

So Bored

Ben's school has been canceled all week due to the power outage and we have been so bored! School was the perfect morning activity to break up his day and we have gotten accustomed to that! For the first time this week, I have a day nurse so I get a little break - but I know his nurse is having trouble keeping him entertained too. The only activities Ben enjoys doing is throwing things, watching TV and going for walks. Those three aren't enough to fill up the day. Since school is only Monday through Thursday, lets hope tomorrow isn't canceled.

Horrible Winds - Power Outage

Sunday afternoon most of Ohio received a horrible wind storm causing widespread power outages. Luckily my parents didn't lose power at their house just north of Dayton and we were able to drive up there for the night.

With all the medical equipment Ben relies on, power outages are very scary for us. After five hours without power, we became concerned with the battery life left on his stuff. We called Duke Energy for an update and we heard the message informing us that it will take 3-5 days before power can be restored. That was all we needed to hear to pack up and hit the road. Without working traffic lights and so many people leaving town, travel time was much longer than normal.

This morning I called our home to see if our answering machine would pick up signifying power was back on. And it was! Wahoo. We came back to town around 5:00 p.m. I flipped on the TV and noticed a show tapped last night at 8:00 p.m. so our power must have come on an hour or so after we left. What are the odds! So many people are still without power and I'm shocked we got ours so soon (my brother's family still doesn't have power and they only live a few miles from us). I'm not sure if we got power so fast because we are filed as having life-saving medical equipment in the home, if it is because we live 1/2 mile from a nursing home or if it was just pure luck. Either way, I'm grateful. Ben's school was canceled yesterday due to the outages and is again tomorrow. I think Ben is getting bored at home.


Power loss could last a week
By Dan Horn, Jennifer Baker and Peggy O'Farrell •

For now, those crews are assessing damage and targeting the repairs that will restore electrical service to as many homes as possible. Power went out Sunday as deadly and damaging winds from Hurricane Ike gusted to over 70 miles per hour ripped through the region.
Chip Wood, a Duke vice president, said large swaths of the region will get power back in the next 24 to 48 hours, but some homes could be without service all week.
The longest wait will be for residents who lost lines connecting their home to a main line, Wood said. “We expect power to be out for some through the weekend,” he said.Duke officials say 200 company employees who are working now soon will be joined by at least 200 more within the next 24 hours. The reinforcements include recalled contract crews sent to help the Gulf Coast after Hurricane Ike hit Saturday, and other crews from the Carolinas.“We will continue to see major progress. Crews are out there working now,” Wood said.He said the scope of the damage makes the job difficult. “It’s unprecedented for us in the Midwest,” Wood said.Ohio Gov. Ted Strickland said that about 2 million people across Ohio are without power, and 450 school districts are closed. He declared a state of emergency, which will allow the Ohio Department of Transportation to help local communities remove debris from roads. Hurricane-force winds of up to 78 mph caused damage in 84 of the state's 88 counties. In Kentucky, Gov. Steve Beshear declared a state of emergency.As of 3:50 p.m., about 620,000 Duke Energy customers were without power. Since Sunday morning, there were nearly 1.1 million service interruptions lasting longer than 5 minutes. That includes some customers who had multiple outages.Businesses large and small worked to open today. Some faced the prospect of being without power for days. Food service businesses were especially concerned about refrigeration. Health departments planned to make inspections to be sure food was safe.Cincinnati Health Department inspectors are contacting some of the larger food service operators, including supermarkets and restaurants, to get the safety message out, said spokesman Rocky Merz.The city of Cincinnati inspects some 3,000 restaurants, convenience stores, supermarkets and other businesses that sell food, Merz said.Most larger food vendors have procedures in place to deal with large-scale power outages, he said, and health officials are relying on businesses to follow those procedures.The rule: If the power is out, the business should be closed. When the lights come back on, check temperatures in refrigerators and freezers. If cold food is warmer than 41 degrees, throw it out to avoid the risk of food poisoning.Hamilton County Public Health is sending eight inspectors into the community and has two more working the phones to call convenience stores, restaurants and other businesses that serve food, said spokeswoman Megan Hummel.In Northern Kentucky, where the health district’s main office is also closed because the power is out, inspectors are also relying on most businesses to follow standard guidelines.“We have 15 inspectors and 2,000 businesses,” said spokeswoman Emily Gresham Wherle.Kroger was working to get all its stores open, as was bigg's. Some Kroger stores were open but not their gas pumps. Most of the 135 Fifth Third Bank branches were without power this morning and closed, said Fifth Third spokeswoman Stephanie Honan. "As those come on line, they will be opening," she said. Fifth Third's main offices downtown and operations center in Madisonville are open. Most US Banks are open.Greater Cincinnati Water Works has asked customers to conserve water. Widespread power outages have hampered the ability of the water works to pump water in certain areas. Butler County officials are also asking residents to conserve water. The city of Fairfield has declared a water emergency. Many customers may experience low or no water pressure. As a precaution, Fairfield says, residents should boil water used in cooking or consumption for at least three minutes.The city of Wyoming is going to keep a water advisory in effect until power is restored to all facilities, said Mike Lippert, Wyoming assistant public works director. During the storm on Sunday, Wyoming asked residents to conserve water.Power to the main plant was restored at about 10 p.m. Sunday night, but the city’s water tower generator and one pump station still have no power. Much of Wyoming was still without power at mid-day on Monday.

The Artist at Work

Ben's teacher, Ms. Stephanie sent us these two pictures of Ben at school.

In this picture, Ben was suppose to be gluing felt shapes to the paper. He found it more fun to finger paint with the glue, then couldn't figure out why things were sticking to his hands.

This is Ben using watercolors for the first time. I'm so proud of him!

Urology Appointment

Ben had his follow-up Urology appointment today. We waited almost 2 and a half hours to see the doctor and I so wish I would have brought Ben's portable DVD player. Keeping him happy laying on a table for that long is IMPOSSIBLE! But, we needed answers about his urinary track reflux and his cyst on his spleen.

His doctor said that after having deflux, Grade 1 reflux is considered as good as cured. What great news! And, he said that if the reflux hasn't worsened in a year, odds are the reflux won't relapse. More great news. Next step it to bring down Ben's testicles. They are going to try and do this laparoscopically. They don't want anything combined with this procedure since it is pretty involved, so we are looking at having something down in December after his coanal atresia repair.

The goal is to bring down both testicles in one procedure, but it may take two and depending on the condition of the testes one or both may need to be removed. They won't know until they get in there. There is also a chance that laparoscopically won't work and they will have to open him up. He'll have to stay overnight for this procedure and the surgery is slotted for 3 1/2 hours, which will be a long time for Ben to be under.

Regarding Ben's cyst, this is definitely something time will tell. We will follow-up with another ultrasound in 3-4 months to see what it looks like then.

Space Saver

Ben is our little space saver when it comes to sleeping. He has recently got into this habit of only using the top end of his crib and it just cracks me up!

School, Appointments and Misc.

Ben seems to be doing much better at school. His school nurses, aids, and teacher all seem to be getting to know him better and his likes/dislikes. Ben is definitely a fan of the muscle room (a room inside that has a trampoline, swing and ball pit), recess and painting time. He still has trouble when he leaves the muscle room and recess and has a meltdown when he goes back to his room. His teacher is thinking of adding an additional gross motor activity for him during his day since he is such a huge fan of them. We now have all days at school staffed. Monday was just filled with a new nurse and although it will take a lot of time for her to learn about Ben and all his little quirks... I think she is up for the job. I'll probably just continue to go to school with her and be in the observation room for a few more times.

Ben has yet to put on his cochlear implant at school. He is very controlling about his implant and will listen to ONLY what he wants to. It is selective listening at its best. Right now Ben will put his implant on for a few toys, his own voice when he is wearing his Passy Muir Valve and Mickey Mouse Clubhouse (he is OBSESSED with this show and I'm not exaggerating. He does his sign for wanting TV and when I sign, "No TV, you have to wait", Ben throws a fit. Once he calms down, he asks again and the cycle repeats itself the entire time we are in the house. At least he is in school M-Th in the morning so that cuts down on his TV requesting time). I think school is still very overwhelming to Ben and the addition of his implant is just too much right now. And if Ben doesn't want to wear it, even holding both his hands won't keep it on... he knows how to rub his head on us and pop it off. Hopefully in due time he will start wearing it. He is making the speech therapist that works with him at school be very creative in finding things to do with him. He is wearing his implant for his speech therapist at Childrens though. Ben, Ben, Ben, what are we going to do with you!

Ben had a renal ultrasound and a VCUG (barium is inserted into his bladder via a catheter and they fill him up and watch to see if he refluxes). He did reflux up to both kidneys, but it was very minor... only a grade one. Ben use to have grade four on both sides but he had a defulx injection to help correct this problem. We are meeting with his Urologist on Friday to discuss the results. Hopefully Ben can get another defulx injection when he goes under in October to try and open his nasal passages again. Ben's ultrasound looked good, we were just told that they found a cyst on his spleen. His primary doctor didn't seem too concerned but told us to ask his Urologist about this too and probably have a repeat ultrasound in 3-4 months.

Here are some pictures of my little artist and his wonderful aid (Mason Schools call them Parapro's) Helga. Poor Helga gets more paint on her than Ben puts on the paper. She tries to wear a smock to protect herself, but Ben is good at finding the uncovered spots. And after Ben is done painting, he needs a car wash as his teacher would say.

Transition into school

Ben's transition into school has been difficult for him (and myself), but he definitely made progress from the first day to the second. The structure and rules are new and challenging for him and I'm confident he will get use to them in time. His teacher and aids are wonderful and very responsive to all my concerns and suggestions. I was by his side the entire first day and observed the second day. Tuesday will be the first day I won't be there - I'm stressing a little! It is so hard for me to put all my faith in others. We've just been through so much together and I'm in tune to all his needs like no one else. Ben and I have spent very little time apart these first three years and he has fought so many obstacles to get here. The school transition needs to be done though because it is in Ben's best interest and I just have to keep on reminding myself that. And ultimately I feel comfortable that the nurses going with Ben can handle him in an emergency. Below is a picture from Ben's first day. He transportation around school is this cool wagon. Doesn't he look so grown up!

Ben's Classroom at MECC

This is the singing/reading time mat - this is what you see when you first enter the room

I tried to get the whole room - it is big!

Ben in front of the door

The play kitchen area on the right of the room

Off the room is this other little room - it is the observation room with two way glass and is also used as the sensory room, therapy room, etc.

Ben's Preschool Teacher - Miss Stephanie