Sunday, September 28, 2008
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.
Monday, September 22, 2008
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
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.
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.
Wednesday, September 17, 2008
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.
Monday, September 15, 2008
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.
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.
Friday, September 12, 2008
The Artist at Work
Ben's teacher, Ms. Stephanie sent us these two pictures of Ben at school.
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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.
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This is Ben using watercolors for the first time. I'm so proud of him!
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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.
.JPG)
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.
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.
Thursday, September 11, 2008
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!
Wednesday, September 10, 2008
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.
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.
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