In just a few short days, framers were able to begin work on the shaft for the elevator as well as rough in the bathroom for the main floor. Things are moving very quickly right now and not a moment too soon!
The second day the workers were here Erica was unable to get out of bed all day due to a back injury. The cast on her ankle throws her whole body off and can create problems everywhere. Her back muscles are in spasm and she is in a lot of pain. That same day, Elizabeth had to go home early because she injured her hip at school. She was unable to get out of bed either. So I spent the day going up and down the stairs taking care of the girls. Knowing the elevator will be in soon helped me get through that day.
There really is light at the end of the elevator shaft!
Next the plumbers and electricians will be in to work on the elevator and bathroom. I just can't believe how much is completed already. Last year at this time we were all so desperate and now there is so much more hope!
Much thanks to all of you that helped with the donations for the changes in our house. It is only because of all of your support that we are able to move ahead with the work. More is needed, I will admit, but it is a start. Thanks be to God!
Monday, November 1, 2010
Thursday, October 28, 2010
Tuesday, October 5, 2010
Nick Who?
I am a geek. Just so you know. This was confirmed last week. It is official.
I was selected by Children's Hospital to be a "Champion". This means that you are willing to share your personal story in efforts to raise money for the hospital which is a real honor. I was asked to speak at a golf outing this Friday. This outing is to benefit the Care Fund. The Care Fund was a grant that we received a couple of years ago to help us pay for some of our medical bills. We were nominated by the people in the Family Financial Advocacy department. I have written about them before. We consider them all angels as they help us with our medical bills as well as dealing the with the insurance company.
Anyway, I thought this would be a small event; maybe 50 golfers. I received a call from one of our angels and she said that 15,000 golf balls will be dropped from a rescue helicopter at the "event." I started to think that it might be a little bit bigger than I once thought. Then a got an email from the organizer. She said that there would be a lunch before my speech and I would have a chance to meet Nick and Drew Lachey.
Thinking Nick was some vice president of the hospital I asked Chuck, "Who is Nick (La-chee) Lachey?" He of coursed laughed and corrected me. I am still not too familiar with him or his brother, but it is cool that they are supporting this cause as well.
In thinking what I will say I have come up with some key points I would like to make. The fund is for people that have insurance, but the out of pocket expenses are more than the family can handle. They give the money to people that have children with chronic illnesses or find themselves in a desperate situation because of the bills. What most people do not realize is that there are many different "stressors" when a child is diagnosed or sick. The first stressor is obviously taking care of the physical needs of the child. This can be overwhelming in and of itself. The second is taking care of the other family members needs. Then there are the doctor's appointments, the therapy appointments, managing the medicine and so on.
Eventually you must deal with the insurance company and the medical bills. This can be extremely difficult on its own, despite all of the other issues that need to be addressed. In our case, the ladies in the Advocacy department also had to work around my own physical needs. In the middle of the battle, I had brain surgery!
The insurance company was not paying on certain bills such as physical therapy. I would call them almost every day. In fact, I logged over 100 calls in a year period just about PT. When Kristen and Carrie started to help, they took that responsibility for me. This was a huge relief! We were still looking at tens of thousands of dollars in bills, but any help was appreciated.
They did not stop there, they helped us apply for BCMH which is a state funded program that also helped with medical bills. We applied for financial aid and anything else they could find. They even adopted us for Christmas last year!
One day, out of the blue, they said we were nominated us for a new grant called the Care Fund. This fund would pay some of our back medical bills. I cried on the phone for a long time because what this grant did was not only pay for some of our bills, but it gave us hope. When people inject hope where there was none, it changes everything. This grant did not pay for all of our outstanding bills, but did help a great deal not only with our bills but our hearts.
People often ask us "How do you do it." The answer is we don't, God does. God knew from the beginning of time that we would be here and in this situation. The character of God is trustworthy and endless supply. We don't do it, He gives us what we need. We have to have our eyes open as to His Supply. He has given us just the right friends to understand and support us. He has given us Hearth and COTF to help with changes in the house. He has helped us pay our bills. He has given us friends to help us raise money. All of this supply is what gets us through the day. Without God's support, we would have buckled long ago. We are not that strong.
I am so happy that have been given a chance to give back. I know what these grants do for families. Many miracles happen down at Children's Hospital. Lives are saved, operations done, treatments given, but not all of the miracles have to do with medicine.
If you would like to help with this fund, click on the link to buy a chance to hit me in the head with a golf ball and earn $1,000,
https://giving.cincinnatichildrens.org/NetCommunity/SSLPage.aspx?pid=1036
I was selected by Children's Hospital to be a "Champion". This means that you are willing to share your personal story in efforts to raise money for the hospital which is a real honor. I was asked to speak at a golf outing this Friday. This outing is to benefit the Care Fund. The Care Fund was a grant that we received a couple of years ago to help us pay for some of our medical bills. We were nominated by the people in the Family Financial Advocacy department. I have written about them before. We consider them all angels as they help us with our medical bills as well as dealing the with the insurance company.
Anyway, I thought this would be a small event; maybe 50 golfers. I received a call from one of our angels and she said that 15,000 golf balls will be dropped from a rescue helicopter at the "event." I started to think that it might be a little bit bigger than I once thought. Then a got an email from the organizer. She said that there would be a lunch before my speech and I would have a chance to meet Nick and Drew Lachey.
Thinking Nick was some vice president of the hospital I asked Chuck, "Who is Nick (La-chee) Lachey?" He of coursed laughed and corrected me. I am still not too familiar with him or his brother, but it is cool that they are supporting this cause as well.
In thinking what I will say I have come up with some key points I would like to make. The fund is for people that have insurance, but the out of pocket expenses are more than the family can handle. They give the money to people that have children with chronic illnesses or find themselves in a desperate situation because of the bills. What most people do not realize is that there are many different "stressors" when a child is diagnosed or sick. The first stressor is obviously taking care of the physical needs of the child. This can be overwhelming in and of itself. The second is taking care of the other family members needs. Then there are the doctor's appointments, the therapy appointments, managing the medicine and so on.
Eventually you must deal with the insurance company and the medical bills. This can be extremely difficult on its own, despite all of the other issues that need to be addressed. In our case, the ladies in the Advocacy department also had to work around my own physical needs. In the middle of the battle, I had brain surgery!
The insurance company was not paying on certain bills such as physical therapy. I would call them almost every day. In fact, I logged over 100 calls in a year period just about PT. When Kristen and Carrie started to help, they took that responsibility for me. This was a huge relief! We were still looking at tens of thousands of dollars in bills, but any help was appreciated.
They did not stop there, they helped us apply for BCMH which is a state funded program that also helped with medical bills. We applied for financial aid and anything else they could find. They even adopted us for Christmas last year!
One day, out of the blue, they said we were nominated us for a new grant called the Care Fund. This fund would pay some of our back medical bills. I cried on the phone for a long time because what this grant did was not only pay for some of our bills, but it gave us hope. When people inject hope where there was none, it changes everything. This grant did not pay for all of our outstanding bills, but did help a great deal not only with our bills but our hearts.
People often ask us "How do you do it." The answer is we don't, God does. God knew from the beginning of time that we would be here and in this situation. The character of God is trustworthy and endless supply. We don't do it, He gives us what we need. We have to have our eyes open as to His Supply. He has given us just the right friends to understand and support us. He has given us Hearth and COTF to help with changes in the house. He has helped us pay our bills. He has given us friends to help us raise money. All of this supply is what gets us through the day. Without God's support, we would have buckled long ago. We are not that strong.
I am so happy that have been given a chance to give back. I know what these grants do for families. Many miracles happen down at Children's Hospital. Lives are saved, operations done, treatments given, but not all of the miracles have to do with medicine.
If you would like to help with this fund, click on the link to buy a chance to hit me in the head with a golf ball and earn $1,000,
https://giving.cincinnatichildrens.org/NetCommunity/SSLPage.aspx?pid=1036
Splash in the Face
At the beginning of this week we are all looking forward to the beginning of construction on the elevator. Hearth Professionals found a carpenter to do the work for free! We are also looking into having the material donated by Home Depot. The installation of the elevator will change many things in our house for the better. A year ago we could not even imagine that we would be so blessed as to have these changes in our house!
Erica continues to do well. She did have a little trip to the ER while on the bus due to a spinal chord "stinger". This is similar to what happens to some football players. The spinal chord gets a ding and the arms and legs go numb, an electric shock goes through the body and the muscles cramp. Despite my efforts to tell the fire department that this happens frequently and she would be fine, they had to transport her. She was in and out very quickly. It did take a couple of days for her to walk again, however.
CJ has undergone more tests for his asthma. It is still unclear what is causing his breathing problems. Some medications were adjusted and new ones given, so we will see how it goes.
Elizabeth has been in some pretty bad pain lately. She went to see the physical rehab doctor. I told him that we are hoping she could go one month without needing her crutches and then we could start to send her to school all day. He told me that it was unlikely to happen that way. It has been a year since her injury. (He tore her hip tendon while sitting in science class) She has done all of her exercises, we are in the process of adapting her environment and surgery is out of the question. There is nothing left to do.
It was like getting cold water thrown in your face. I know it hit Elizabeth hard. The doctor looked upset as well. What do you say to a comment like that? My heart just broke. Have I been pushing her too hard? Am I expecting too much of her? This caused me to really sit back and evaluate our approach.
In the mean time, Elizabeth seemed to just give up. She did not want to go to school, she was in pain all of the time. She did not want to do anything. I think this is understandable, but we cannot stay here. She cannot give up. Okay, there is nothing more the doctors can do, but that does not mean we sit in the corner and cry. Well, maybe a couple of days.
We pushed her to return to school on Friday. She said that she cried through school. She had an appointment to go to swim therapy and we forced her to go to that. By the end of the day she was walking again. She is still in pain, but she was much better than before. She needed a couple of days to lick her wounds, which is okay. This cannot be a permanent state of mind, however.
Erica continues to do well. She did have a little trip to the ER while on the bus due to a spinal chord "stinger". This is similar to what happens to some football players. The spinal chord gets a ding and the arms and legs go numb, an electric shock goes through the body and the muscles cramp. Despite my efforts to tell the fire department that this happens frequently and she would be fine, they had to transport her. She was in and out very quickly. It did take a couple of days for her to walk again, however.
CJ has undergone more tests for his asthma. It is still unclear what is causing his breathing problems. Some medications were adjusted and new ones given, so we will see how it goes.
Elizabeth has been in some pretty bad pain lately. She went to see the physical rehab doctor. I told him that we are hoping she could go one month without needing her crutches and then we could start to send her to school all day. He told me that it was unlikely to happen that way. It has been a year since her injury. (He tore her hip tendon while sitting in science class) She has done all of her exercises, we are in the process of adapting her environment and surgery is out of the question. There is nothing left to do.
It was like getting cold water thrown in your face. I know it hit Elizabeth hard. The doctor looked upset as well. What do you say to a comment like that? My heart just broke. Have I been pushing her too hard? Am I expecting too much of her? This caused me to really sit back and evaluate our approach.
In the mean time, Elizabeth seemed to just give up. She did not want to go to school, she was in pain all of the time. She did not want to do anything. I think this is understandable, but we cannot stay here. She cannot give up. Okay, there is nothing more the doctors can do, but that does not mean we sit in the corner and cry. Well, maybe a couple of days.
We pushed her to return to school on Friday. She said that she cried through school. She had an appointment to go to swim therapy and we forced her to go to that. By the end of the day she was walking again. She is still in pain, but she was much better than before. She needed a couple of days to lick her wounds, which is okay. This cannot be a permanent state of mind, however.
Friday, September 10, 2010
The Ball is Rolling
Last night we had a meeting with representatives of our groups of friends and Hearth and COTF. It was a wonderful meeting but overwhelming as well. It is overwhelming to see the support and love from so many people. We got together to plan an event that will bring more attention to the fundraising event.
We learned that $6,500 as already been donated. We are already a 10% toward our goal with nothing more than a newspaper article! God is moving so powerfully!
In a matter of just a few hours so much has been accomplished! Not for a moment do I think that any of my efforts or efforts of individuals is bringing all of this together. It is the supply of The Almighty and His provision!
The coolest part of this is, not only is God blessing us, but He is also allowing us to see other's eyes opened to the miracles that are happening.
Prayers are answered, faith restored, joy is infectious!
We learned that $6,500 as already been donated. We are already a 10% toward our goal with nothing more than a newspaper article! God is moving so powerfully!
In a matter of just a few hours so much has been accomplished! Not for a moment do I think that any of my efforts or efforts of individuals is bringing all of this together. It is the supply of The Almighty and His provision!
The coolest part of this is, not only is God blessing us, but He is also allowing us to see other's eyes opened to the miracles that are happening.
Prayers are answered, faith restored, joy is infectious!
Friday, September 3, 2010
Surgeries
In the last month, I have had two surgeries. The first was my nose. You would not think this would be high on the list of priorities, however, I could not breath through my nose, so I could not use my CPAP. Most people with EDS have obstructive apnea. Because our soft tissue is really soft, the back of the throat collapses while we sleep causing the apnea in even tiny 100 lb women. (I am not nor will I ever be 100 lbs.) I am exhausted all the time since I have had to stop using my machine.
Anyway, my nose was "out of joint" so I had a septoplasty to fix the deviated septum. Unfortunately, lead to a 13 hour nosebleed. Not to go into too many details, but if you do have to have this surgery be very cautions of the words "nasal tampons". After a night in the hospital, I was sent home.
Two weeks later I had surgery on my left arm. I was unable to use my fingers reliably. I would lose function dramatically through the day. It got to the point that I had to reserve using my left hand for important tasks.
I was sent to a orthopedic hand specialist. He determined that I needed carpel tunnel surgery as well as having the radial nerve released in both arms. The pain was worse on my right but it is still functional so I decided to have the left helped first. The surgeon is very good, but he was doubtful it would restore function.
I am happy to say that I think the surgery not only reduced the pain, but it also help me regain use. I am only a little over 3 weeks out, but I am already very pleased with the results.
My mom dropped by yesterday. She had a pre-op appointment with her spine surgeon. He plans on operating on her lower back to give back some of the function of her legs, but he thinks that she has broken her back again, in the middle. This is devastating and we are unsure what she will do.
Anyway, my nose was "out of joint" so I had a septoplasty to fix the deviated septum. Unfortunately, lead to a 13 hour nosebleed. Not to go into too many details, but if you do have to have this surgery be very cautions of the words "nasal tampons". After a night in the hospital, I was sent home.
Two weeks later I had surgery on my left arm. I was unable to use my fingers reliably. I would lose function dramatically through the day. It got to the point that I had to reserve using my left hand for important tasks.
I was sent to a orthopedic hand specialist. He determined that I needed carpel tunnel surgery as well as having the radial nerve released in both arms. The pain was worse on my right but it is still functional so I decided to have the left helped first. The surgeon is very good, but he was doubtful it would restore function.
I am happy to say that I think the surgery not only reduced the pain, but it also help me regain use. I am only a little over 3 weeks out, but I am already very pleased with the results.
My mom dropped by yesterday. She had a pre-op appointment with her spine surgeon. He plans on operating on her lower back to give back some of the function of her legs, but he thinks that she has broken her back again, in the middle. This is devastating and we are unsure what she will do.
Wednesday, September 1, 2010
Great News
The kids got back to school last week. Along with the normal anxiety, there was some added drama. CJ is in the fourth grade this year. This means he's the big man on campus. This also means much more homework an added responsibility. I'm happy to report that he is a very nice teacher and I think he will have a great school year.
Erica is going to school on a regular bus without her wheelchair! Though this is a miracle as last year she was in her chair when she was able to go to school. She's in a regular second grade classroom with another great teacher. For the most part he would not be able to pick her out as being different at school which is amazing. I think we can attribute the successes to her hard work both in the pool and out of the pool with her support staff. She was able to strengthen her core which keeps spinal cord steady.
The only complication she has right now is stomach pain. She is on an adult dose of Nexium and is still having problems with acid reflux. She went in for a scope yesterday and it appears she does not have any damage. The doctor will probably double her dose.
Elizabeth is also going to school. Because of her hip injury as well as the POTS being out of control, she must stay in her wheelchair. This means she also can only attend half of the school day. She was able to create a unique schedule meeting most of her needs. She takes advanced math class, social studies and choir. She also eats lunch at school. She will start aquatic therapy in October. The goal is for her to return full time to school by December. But, as we all know if we want to make God laugh, make plans for the future. We will take this one day at a time.
Going to school has lifted her spirits. In the last two years she has massed close to 10 months of school. The fact that she had peace as she wheeled into the middle school for the first time that shows God's grace.
I agree with the old back-to-school commercial, "It's the most wonderful time of the year!"
Erica is going to school on a regular bus without her wheelchair! Though this is a miracle as last year she was in her chair when she was able to go to school. She's in a regular second grade classroom with another great teacher. For the most part he would not be able to pick her out as being different at school which is amazing. I think we can attribute the successes to her hard work both in the pool and out of the pool with her support staff. She was able to strengthen her core which keeps spinal cord steady.
The only complication she has right now is stomach pain. She is on an adult dose of Nexium and is still having problems with acid reflux. She went in for a scope yesterday and it appears she does not have any damage. The doctor will probably double her dose.
Elizabeth is also going to school. Because of her hip injury as well as the POTS being out of control, she must stay in her wheelchair. This means she also can only attend half of the school day. She was able to create a unique schedule meeting most of her needs. She takes advanced math class, social studies and choir. She also eats lunch at school. She will start aquatic therapy in October. The goal is for her to return full time to school by December. But, as we all know if we want to make God laugh, make plans for the future. We will take this one day at a time.
Going to school has lifted her spirits. In the last two years she has massed close to 10 months of school. The fact that she had peace as she wheeled into the middle school for the first time that shows God's grace.
I agree with the old back-to-school commercial, "It's the most wonderful time of the year!"
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