Today was Good Friday. Our first one in the public school arena. Denton ISD was originally closed today, but had class due to the bad weather days that we took earlier in the year.
Yesterday, I had some things to do and mom came over and picked up Michael for me. Well after a long turn of events, I decided that my boys could take off today, as long as they would discuss the true meaning of Good Friday. So of course they wanted to go to Honey's house. I think at first Michael wanted to go by himself, but Honey said "its all or nothing." So all three of them went.
I had a glorious day. I slept late, went shopping to complete my Easter ensemble,got a pedicure, made all the boys Easter baskets, did some laundry, and paid some bills. It was really nice to get so many things off my to do list.
I also applied for a small home improvement loan. We (more me then anyone) are considering putting a pool in. Swimming is supposed to be excellent therapy for people with arthritis. And, I have always wanted a pool. I am praying that if we are not supposed to put a pool in that for some reason we won't get the loan. I told God, "Now God, you know me. I need black or white. If we should do this let it work, if we should not, don't let us get the loan." I told the banker that was my prayer, so if it didn't work out I wouldn't be mad at him because it is a God thing. He laughed and said "I wish all my clients felt like that!"
This afternoon, I also looked at our last four bank statements. I was trying to make sure that we could afford a loan payment. Well, I know we can. Mark is supposed to be getting a little pay increase and we just paid off my car. But I wanted to see if there were things I could cut out that are just wasteful. I am totally embarrassed to admit, but there is in excess of $500 per month that is just wasted - BY ME! It is horrible! So, I am vowing to stop wasting money. Yep, you heard it here first - I am no longer wasting money. Between what I waste and my car payment, our family just got a $1,000 a month raise! Anyway, I am keeping my fingers crossed and my mind open and praying for good decisions and God's will.
Friday, April 22, 2011
Sunday, April 17, 2011
Some GREAT news!
When I got home from taking the boys to Camden's house for the sleepover I checked the mail. GREAT! GREAT! GREAT news was waiting for us there. We had a letter from Texas Scottish Rite Hospital for Children. Michael had been accepted to their Arthritis clinic and they had set his first appointment for May 27th.
While this whole disease (it is very difficult for me to say that my child has a chronic disease - and it sucks!) has taken some time to diagnose and get in to see people, in the world of Juvenile Rheumatoid Arthritis, we have been blessed and have sped through the process. Once we had a pre-diagnosis of JA, we were seeing a specialist in 8 days. Then a week later we got an appointment at TSRHC which is just a little over a month away. I have spoken to and read about children that it has taken YEARS to get an accurate diagnosis and in to Scottish Rite. So, with out doubt, we are blessed to have things moving along so quickly.
Scottish Rite is one of the top Children's Hospitals in the world. I have never met anyone who had a negative thing to say about them. And the most amazing thing is that once you are accepted, there is no charge for their services! I don't even think I can wrap my head around that yet! When I picked up the boys today, I told Michael that I had received the letter with his appointment. Mavrick said "what does that mean?" Michael said "it means that I'm going to get better."
While this whole disease (it is very difficult for me to say that my child has a chronic disease - and it sucks!) has taken some time to diagnose and get in to see people, in the world of Juvenile Rheumatoid Arthritis, we have been blessed and have sped through the process. Once we had a pre-diagnosis of JA, we were seeing a specialist in 8 days. Then a week later we got an appointment at TSRHC which is just a little over a month away. I have spoken to and read about children that it has taken YEARS to get an accurate diagnosis and in to Scottish Rite. So, with out doubt, we are blessed to have things moving along so quickly.
Scottish Rite is one of the top Children's Hospitals in the world. I have never met anyone who had a negative thing to say about them. And the most amazing thing is that once you are accepted, there is no charge for their services! I don't even think I can wrap my head around that yet! When I picked up the boys today, I told Michael that I had received the letter with his appointment. Mavrick said "what does that mean?" Michael said "it means that I'm going to get better."
A Busy April Saturday
Yesterday I knew was going to be busy. As soon as my feet hit the floor, which was before anyone else in the house, I was busy preparing for Major's 3rd birthday party. I can not believe that child is 3! The last 3 years have flown by. So much has changed - it's just amazing. Anyway, pick up some, set up, off to pick up balloons and a cake, then the party. It was a busy morning indeed.
Major had a wonderful party. His cousins and his neighborhood friends were all here. It cracks me up that he doesn't even realize that he is the youngest! I swear he thinks he is at least 8! He was exhausted after the party, so I got to lay down with him for a little bit while he was taking his nap.
Then it was time to take Michael and Mavrick to a friend's birthday party. The party was at the Community Activity Center in Flower Mound. They ate pizza and cake, then went swimming for about two hours. I stayed because it was Michael's first event where he was having difficulty walking. The swimming was great and felt wonderful to him. There was a moment when I could tell that he was not happy. I went and talked with him and he said that he wasn't feeling included because he was not able to do all the things the other boys could. WOW how that breaks my heart. So we talked for a while about how he will have this for the rest of his life, but he won't always feel the way he feels today. He cried a little. I cried a little.
After swimming, they went to Camden's house to spend the night. There were 7 boys in all. His mom is a brave woman! Michael had already expressed concern that he would not be able to run around like the other boys, so I pulled Mavrick aside and told him that he needed to be mindful of Michael and his inability to do all the things that he used to, right now. I asked him to encourage the other boys to do things that Michael could do. Mavrick is being such a good help to Michael. Mark and I have been so blessed to have the amazing, caring and loving children that we do! I kept my phone by me all night, just in case Michael needed me to go get him. When I woke up this morning I kind of had a proud feeling for him. I knew he was going to be exhausted, but he stuck it out. I feel like that was the first of a few social hurdles that we will face, and I think we are both glad to have it behind him.
Major had a wonderful party. His cousins and his neighborhood friends were all here. It cracks me up that he doesn't even realize that he is the youngest! I swear he thinks he is at least 8! He was exhausted after the party, so I got to lay down with him for a little bit while he was taking his nap.
Then it was time to take Michael and Mavrick to a friend's birthday party. The party was at the Community Activity Center in Flower Mound. They ate pizza and cake, then went swimming for about two hours. I stayed because it was Michael's first event where he was having difficulty walking. The swimming was great and felt wonderful to him. There was a moment when I could tell that he was not happy. I went and talked with him and he said that he wasn't feeling included because he was not able to do all the things the other boys could. WOW how that breaks my heart. So we talked for a while about how he will have this for the rest of his life, but he won't always feel the way he feels today. He cried a little. I cried a little.
After swimming, they went to Camden's house to spend the night. There were 7 boys in all. His mom is a brave woman! Michael had already expressed concern that he would not be able to run around like the other boys, so I pulled Mavrick aside and told him that he needed to be mindful of Michael and his inability to do all the things that he used to, right now. I asked him to encourage the other boys to do things that Michael could do. Mavrick is being such a good help to Michael. Mark and I have been so blessed to have the amazing, caring and loving children that we do! I kept my phone by me all night, just in case Michael needed me to go get him. When I woke up this morning I kind of had a proud feeling for him. I knew he was going to be exhausted, but he stuck it out. I feel like that was the first of a few social hurdles that we will face, and I think we are both glad to have it behind him.
Wednesday, April 13, 2011
What's normal?
Maybe it is a season I am in, but I have to wonder, "What is normal?" and "Am I normal?" I think I am obsessive. I think I am in denial about several things. I think I am an exhausted mother of three wonderful boys. I think I am co-dependent. I think I love the life I have.
I was talking with my neighbor, Kelly, today and we were discussing how we are tired, and have absolutely NO motivation. We agreed that in our minds we should not be allowed to own homes or care for children. LOL! OK, so I am being a bit dramatic, but this whole adult thing is not what I thought it was going to be. Don't get me wrong. Given the opportunity, I can't think of a thing that I would really change. Well, I would probably triple Mark's salary, but other than that, I'm in a pretty good place.
What I am trying to say, I guess, is that my car has french fries in the floorboard... my house is dusty... I hate to clean toilets... There is always more than one load of laundry that needs to be cleaned... I wear my hair in a ponytail because I would rather sleep an extra 20 minutes than use the flat iron... my floors need to be mopped...I think I still have a few Christmas decorations left out...I eat like a college student...I feed my kids too many fast food meals...I spend money on wasteful things...I am so not perfect! I am not even near the person I thought I would be.
And that brings me to...Are any of us? Are any of us who we thought we would grow up to be? And is that normal? Is my idea of normal just something that the media and society helped to create? Is my idea of normal just another idea that should be put on a shelf with the airbrushed body I will never have? Or am I normal - Are we all somewhat screwed up? Did we all had these visions of perfection and have fallen short of what/who we thought we would grow up to be? Maybe we haven't fallen short, but just totally different. What is normal?
I was talking with my neighbor, Kelly, today and we were discussing how we are tired, and have absolutely NO motivation. We agreed that in our minds we should not be allowed to own homes or care for children. LOL! OK, so I am being a bit dramatic, but this whole adult thing is not what I thought it was going to be. Don't get me wrong. Given the opportunity, I can't think of a thing that I would really change. Well, I would probably triple Mark's salary, but other than that, I'm in a pretty good place.
What I am trying to say, I guess, is that my car has french fries in the floorboard... my house is dusty... I hate to clean toilets... There is always more than one load of laundry that needs to be cleaned... I wear my hair in a ponytail because I would rather sleep an extra 20 minutes than use the flat iron... my floors need to be mopped...I think I still have a few Christmas decorations left out...I eat like a college student...I feed my kids too many fast food meals...I spend money on wasteful things...I am so not perfect! I am not even near the person I thought I would be.
And that brings me to...Are any of us? Are any of us who we thought we would grow up to be? And is that normal? Is my idea of normal just something that the media and society helped to create? Is my idea of normal just another idea that should be put on a shelf with the airbrushed body I will never have? Or am I normal - Are we all somewhat screwed up? Did we all had these visions of perfection and have fallen short of what/who we thought we would grow up to be? Maybe we haven't fallen short, but just totally different. What is normal?
More "what if's"
Michael and Mavrick are going to a birthday party this weekend. Their best friend from Temple, Camden, is having a party on Saturday, and then the boys are going to spend the night at Camden's house.
It occurred to me that EVERYTHING is different from the last time they went to a party or spent the night at a friend's house. I was talking to Camden's mom on the phone tonight and asked if it would be ok if I attended the party with the boys. Really, I don't know how Michael will be feeling. What if he is in pain and is in his chair? What if he feels fine and has the chair and doesn't need it? What if he is sick from his injection? So many "what if's" I have been saying that for weeks now.
One good thing is that I really trust Camden's mom. She is a nurse, so if there were problems I know that she could handle things until I could get to him. They live with her parents in Flower Mound, so it's not like I am sending them off. All of this seems new again. WOW! So many changes.
It occurred to me that EVERYTHING is different from the last time they went to a party or spent the night at a friend's house. I was talking to Camden's mom on the phone tonight and asked if it would be ok if I attended the party with the boys. Really, I don't know how Michael will be feeling. What if he is in pain and is in his chair? What if he feels fine and has the chair and doesn't need it? What if he is sick from his injection? So many "what if's" I have been saying that for weeks now.
One good thing is that I really trust Camden's mom. She is a nurse, so if there were problems I know that she could handle things until I could get to him. They live with her parents in Flower Mound, so it's not like I am sending them off. All of this seems new again. WOW! So many changes.
Tuesday, April 12, 2011
Major Surprise is turning 3!
I know the last several posts have been to get everything off my chest about Michael, BUT there are a few other men in my life!
Major will turn 3 this Saturday. It seems like yesterday when I put on my fat jeans and they were tight, picked up a pregnancy test, and cried my eyes out in my boss' office because I was pregnant. And now, I can not, and would not, want to imagine my life without that fantastic little man. He fills my days with joy and laughter. He fills my nights with kicks and bulging diapers. He makes us all happy, and has given Mark and I another chance to appreciate this gift from God. He is the most amazing surprise of my entire life! Thank you God for giving me what I didn't know I needed!
Major will turn 3 this Saturday. It seems like yesterday when I put on my fat jeans and they were tight, picked up a pregnancy test, and cried my eyes out in my boss' office because I was pregnant. And now, I can not, and would not, want to imagine my life without that fantastic little man. He fills my days with joy and laughter. He fills my nights with kicks and bulging diapers. He makes us all happy, and has given Mark and I another chance to appreciate this gift from God. He is the most amazing surprise of my entire life! Thank you God for giving me what I didn't know I needed!
The story continues...
So, picking up where I left off in the last post, the ER doctor made us an appointment with a Pediatric Rheumatologist at Children's in Southlake. We went last Friday, the 8th. She confirmed Juvenile Arthritis. Michael has been prescribed a once a week injection that we will do at home. We will start it this Friday.
Everyday, we try to make him go to school, at least for a short time. I take him to the office, usually between 10 and 11. He gets into the school's wheelchair and wheels himself down the the hall to class. The first day he went back he was pretty nervous. Who could blame him? One of the office staff took him back that day, and said that the whole classed applauded when he came in. I cried when she told me that. I usually cry every morning when I drop him off. He is just so amazing. He is so brave and strong. He doesn't complain or ask why did this happen to me. He is amazing!
Yesterday, we had to take him for a blood draw. Apparently his veins are small and deep. The nurse stuck him once with no luck. Another one stuck him again with no luck. Finally, one of the Dr.'s got a sonogram machine and found a vein and they stuck him there and it worked. Another time he had to have blood drawn they had to stick him three times. He just wants someone to hold on to when they stick him.
Yesterday, I also went and got him a handicap tag for the car. Yes, I stood there in the Denton County Tax Office, crying at the counter. It just seems like the whole world is changing - again. Like everything is moving forward and I am standing there watching it pass by. You never imagine standing in line to get your child a handicap parking tag. You never imagine watching your child wheel himself down the hall. I admire him so much. I think I love him now more then I ever have. He amazes me!
Everyday, we try to make him go to school, at least for a short time. I take him to the office, usually between 10 and 11. He gets into the school's wheelchair and wheels himself down the the hall to class. The first day he went back he was pretty nervous. Who could blame him? One of the office staff took him back that day, and said that the whole classed applauded when he came in. I cried when she told me that. I usually cry every morning when I drop him off. He is just so amazing. He is so brave and strong. He doesn't complain or ask why did this happen to me. He is amazing!
Yesterday, we had to take him for a blood draw. Apparently his veins are small and deep. The nurse stuck him once with no luck. Another one stuck him again with no luck. Finally, one of the Dr.'s got a sonogram machine and found a vein and they stuck him there and it worked. Another time he had to have blood drawn they had to stick him three times. He just wants someone to hold on to when they stick him.
Yesterday, I also went and got him a handicap tag for the car. Yes, I stood there in the Denton County Tax Office, crying at the counter. It just seems like the whole world is changing - again. Like everything is moving forward and I am standing there watching it pass by. You never imagine standing in line to get your child a handicap parking tag. You never imagine watching your child wheel himself down the hall. I admire him so much. I think I love him now more then I ever have. He amazes me!
Monday, April 11, 2011
Getting to the bottom of it - kind of
Michael had been complaining about his legs hurting for a few weeks before we went on Spring Break. At first, Mark told him that his body was not built to be carrying the weight that it was and the he needed less food and more exercise. Then we thought maybe his shoes were not giving him enough support, so we got him new shoes. Then we went on Spring Break, and when we got home his ankles were swollen. I took him to the Dr. the week after we got home. The Dr. sent us for blood work, and then sent us to an orthopedic. The orthopedic said that Michael had severely flat feet and to purchase some good insoles to give him support. So, we did, and the next day I took him to join his class at camp.
This was THE camp that the 5th grade looks forward to all year. He missed the first day, so I drove him down on Thursday, he spent the night and then they came home on Friday. As soon as I found him, the first thing out of his mouth was "Mom, I shouldn't have gone! My feet and legs hurt so bad!" Come to find out, one of the father's had pushed him around in a wheel chair for most of his stay. He was pretty much miserable. It was disappointing for him, but I think he matured a lot during that time.
So, he stayed off his feet for the entire weekend trying to recover. He still was not ok to walk on his own very long, and by Tuesday, we had to find some answers. That was when I took him to Children's Hospital in Allen. The ER doctor, Kelly Phillips, was amazing. She said that our pediatrician had wanted her to try to rule out Juvenile Arthritis, but because of the symptoms, the presentation, and some blood test, she was not able to rule it out at all. Dr. Phillip was amazing and immediately took the bull by the horns. She found us a pediatric rheumatologist and made us an appointment. As a side bar, apparently there is a HUGE shortage of this specialty and to be able to get us in anywhere in 8 business days was no less than a miracle! She also completed and submitted all the paperwork to have him be "put on the list" at Scottish Rite Hospital in Dallas. In the waiting time, she prescribed an anti-inflammatory. We left with a fairly certain diagnosis of Juvenile Arthritis
This was THE camp that the 5th grade looks forward to all year. He missed the first day, so I drove him down on Thursday, he spent the night and then they came home on Friday. As soon as I found him, the first thing out of his mouth was "Mom, I shouldn't have gone! My feet and legs hurt so bad!" Come to find out, one of the father's had pushed him around in a wheel chair for most of his stay. He was pretty much miserable. It was disappointing for him, but I think he matured a lot during that time.
So, he stayed off his feet for the entire weekend trying to recover. He still was not ok to walk on his own very long, and by Tuesday, we had to find some answers. That was when I took him to Children's Hospital in Allen. The ER doctor, Kelly Phillips, was amazing. She said that our pediatrician had wanted her to try to rule out Juvenile Arthritis, but because of the symptoms, the presentation, and some blood test, she was not able to rule it out at all. Dr. Phillip was amazing and immediately took the bull by the horns. She found us a pediatric rheumatologist and made us an appointment. As a side bar, apparently there is a HUGE shortage of this specialty and to be able to get us in anywhere in 8 business days was no less than a miracle! She also completed and submitted all the paperwork to have him be "put on the list" at Scottish Rite Hospital in Dallas. In the waiting time, she prescribed an anti-inflammatory. We left with a fairly certain diagnosis of Juvenile Arthritis
February and March
Ok, I have been away. And as usual, my head is so full of stuff that I don't even know where to begin. So, forgive me if I ramble! The last time I posted was the end of January, right after Mav's accident and Mark's accident.
What did February bring us?
Mark's wonderful Grandmother passed away in February. She had been sick on and off for several years. She was 94, and had been married to Mark's Granddad for 77 years! I know she is in Heaven with a crown of jewels. And even though she always seemed to ask me if I had gained weight, I thought she was precious! I can only hope and pray to live such a long and beautiful, blessed life.
February also brought us a planned weekend for Mark and I to get away. I booked a hotel in Dallas, had the kids going to mom's, etc... and Major got major sick! The whole nine yards - vomit, fever, nasty poo! It was bad. So, Michael and Mavrick went to mom's and Mark and I spend the weekend taking care of Major.
How about March you ask?
Let's see, March 1st was mom's birthday - her first one without daddy. March 3rd was the 21st anniversary of my brother's death. March 6th was my dad's birthday. The boys had spring break and I turned 40 in the same week also.
The first week of March Mavrick spent two nights in the hospital with pneumonia and breathing issues. Funny, that sounds really bad, but our insurance is refusing to pay for the stay because it "wasn't necessary."
For Spring Break, Mom and I took the boys to Memphis and Nashville, TN. It was really a nice trip. We drove to Memphis the first night and spent two nights there. We saw Graceland, ate some Memphis Bar-B-Q, and walked Beale Street. Then we drove to Nashville. Mom and I both agreed that we could live in Nashville. It was a very nice city. Mavrick and I took a ghost tour one night. We all went to the Country Music Hall of Fame - which was amazing! We walked around downtown and just really enjoyed the city. Michael had been having some issues with his ankles and feet and used Mom's walking stick a lot of the trip.
What did February bring us?
Mark's wonderful Grandmother passed away in February. She had been sick on and off for several years. She was 94, and had been married to Mark's Granddad for 77 years! I know she is in Heaven with a crown of jewels. And even though she always seemed to ask me if I had gained weight, I thought she was precious! I can only hope and pray to live such a long and beautiful, blessed life.
February also brought us a planned weekend for Mark and I to get away. I booked a hotel in Dallas, had the kids going to mom's, etc... and Major got major sick! The whole nine yards - vomit, fever, nasty poo! It was bad. So, Michael and Mavrick went to mom's and Mark and I spend the weekend taking care of Major.
How about March you ask?
Let's see, March 1st was mom's birthday - her first one without daddy. March 3rd was the 21st anniversary of my brother's death. March 6th was my dad's birthday. The boys had spring break and I turned 40 in the same week also.
The first week of March Mavrick spent two nights in the hospital with pneumonia and breathing issues. Funny, that sounds really bad, but our insurance is refusing to pay for the stay because it "wasn't necessary."
For Spring Break, Mom and I took the boys to Memphis and Nashville, TN. It was really a nice trip. We drove to Memphis the first night and spent two nights there. We saw Graceland, ate some Memphis Bar-B-Q, and walked Beale Street. Then we drove to Nashville. Mom and I both agreed that we could live in Nashville. It was a very nice city. Mavrick and I took a ghost tour one night. We all went to the Country Music Hall of Fame - which was amazing! We walked around downtown and just really enjoyed the city. Michael had been having some issues with his ankles and feet and used Mom's walking stick a lot of the trip.
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