I can't even begin to tell you how tired Doug and I are. Dougie's sleep this week has been getting progressively worse. He went from tossing and turning ALL night to a WIDE awake state that lasts about 4 hours. For example, Dougie went to bed last night at 9pm - this was after our American Idol had put him in a deep snooze (I think Steven Tyler scares him). He woke up at 10:30 where I transferred him to our bed at 10:30pm - Back to sleep he goes. Around 12:30 he began his show. It first began with his usual tossing and turning. 1:30 still up, 2:30 still up, 3:30 still up which also included a major explosive poop episode. This forced to me to actually get out of bed and work and go downstairs to throw the stinky thing out! I think I even made me poop exit more interesting saying, "mother f****er!" ( I am again, not the brightest person in the middle of the night). Finally the time hit 4am. Dougie was still wide awake and wanting to play. At one point he was laying sideways in between us and kicked Doug right in the nose. He was in PAIN! I think he thought Dougie broke it. He was even checking for blood. During this time, I laid in bed balling. You know when your son or daughter is soooooo tired, all they do it cry? Yes, this was me....all night long. My bubble of okay-ness had been officially broken. I bursted and couldn't help it. I was emotional yesterday too and all I wanted to do was cry - it took me walking into the side of my closet door and hitting my head, hard, to start the morning off crying.
Doug finally gave in knowing I had to be awake in 2 hours for work and took Dougie downstairs. I could hear the little night owl crawling all over the place - fast. He is scheduled for another sleep study next Wednesday March 2 in Chicago. I am praying to GOD that we figure out what the heck is wrong and start working on a plan to fix this. He literally only slept 4 hours last night and maybe a couple 1 hour naps during the day. That is not enough for a kid his age. Other than our lack of sleep, I am worried about how this will effect his growth. It's hard knowing your son has DiGeorge syndrome, but it's still a huge and wide spectrum of possible problems in the future. I think working and being so busy with two jobs helps keep me from feeling overwhelmed on trying to fix everything at once with him. I almost feel like he has some sort of ADHD, but he plays very well and focuses on everything - he plays with toys for long periods of time - but the not sleeping at night has to be something. This is not normal.
Things are really picking up at the Bullpen too! It's a great thing, but means more time away from my kids - at least until I am done working this maternity leave (7 more days). But is it weird that I enjoy working? I don't enjoy being away from my kids, but its easier to breathe knowing they are with their dad then a daycare. I love teaching and feeling needed and important. Sometimes I feel extreme guilt because I go from one job to the next, but I love it. I guess I think about the long run. We are working hard to build our business, build our athletes and make our business stronger - for our kids! At first I was trying to keep two days a week where I do not work at the Bullpen - now I am working all 7 days of the week!
I guess I can only look at one day at a time - like we have since the day Dougie was born and just get through as best we can. Good things are in our future. I can feel it. We are doing everything in our power to make sure of that. Our goals include getting a new job for the next school year, a new house and just live as the Bedinger's do...family, family, family.
Thursday, February 24, 2011
Thursday, February 17, 2011
Bieber Fever and Children's to the Rescue!
So yes, it has been quite a while since I have blogged. I feel like I say this every time. It just goes to show how incredibly busy we are. It's crazy. Lessons at the Bullpen are really starting to pick up - especially as we head to our last week before our high school kids have tryouts. First day of tryouts is like a holiday at our baseball facility. You will be surprised to know that one of our busiest days is the the day before tryouts. Our regular athletes or one time shows always come in for a refresher or pep talk before the big week. We love it too. We finally get to let the kids go and fly solo - at least for a while.
With the hours I am gone from home now and working at school - and being away from my kids, I'm not going to lie, sometimes I dread going to work. But then I think about our family and how much we need to support our children ; that keeps me going. And when I get there, I enter into this crazy pitching obsession that I have ALWAYS had. Sometimes I think my girls look at me like I'm this crazy lady who is crazy about pitching....well, I am. "Hello, my name is Mary, and I'm a pitch-aholic. I am constantly trying to make myself a better coach. Every year Doug and I intensely watch the Women's College Softball World Series. We analyze everything from hitting to pitching and fielding. We take mental notes on the strategies coaches use to what consistent things girls are doing with mechanics - especially pitching. Every year you will see ALL different kinds of pitchers and motions and even hairstyles! It's great. We stay up late talking about everything and dreaming of the day we head out to Bailee's first game.
Oh and Bailee! So I am at work one day and get a text from Doug saying, "we have Bieber Fever going on in the house" Now I have never been a Justin Bieber fan and I could not figure out why he was so popular...until I saw the grammy's. Bailee had watched a show prior in the day with Doug - it had music videos, including the song where he sings, "baby, baby, baby ohhhhhh" - which now happens to be Bailee's favorite song other than Lady Gaga's Bad Romance - or acutally her whole CD. So the Grammy's are on and we happen to start taping it right at Justin Bieber's perfornance...RECORD! We have now officially watched this episode more than 50 times in the matter of 4 days. It is crazy. Bailee will sing with the song, dance, clap, takes a bow at the end...everything! One night she even got her Karaoke machine out (A christmas present) and sang on the microphone with him - strobe light and all! It was FABULOUS! Coming home to her every night and seeing what she is going to do makes me so happy and love life. She also loves Lady GaGa - but now mommy said her CD is broken (we listened to the same songs on repeat for many many many car rides home) so I now introduced her to Madonna! She loves it. Even on our way the other night Bailee says, "mommy, Madonna sings really good. She's good mom." Oh yes, she is very very good and making millions of dollars. I have no idea what the future holds for my little Bailee, but she is going to be something big - I've had this feeling since she was born. (although doesnt every mom have that feeling?)
Dougie, my sweet Dougie. He is still not sleeping through the night. It is getting a little better though. He will sleep for about an hour or so soundly (next to us with either of our hands on his head) and then roll around and kick his legs for a good amount of time. The only thing that tends to calm him down is a bottle. I hate resorting to it, but it really is the only thing that will sooth him. He's not hungry, just uncomfortable.
Last week, we had his cardiology appointment. Luckily for me it got rescheduled for a Saturday I was able to make it. Again, the nerves were killing me. Long story short, it went really well. He gave the nurses a hard time and some evil stares, but all his results came back great. But the one thing that concerned out doctor was Dougie getting his tonsils and adenoids removed by someone who was not familiar with his history. She was worried about putting him under anesthia with his heart defects. She insisted we go through Children's. I felt sick to my stomach that I didn't make this decision myself. I have had a feeling in me for quite some time questioning my decision to seek treatment outside of Childern's. I was trying to believe and trust our pediatricians suggestions and referrals. For a long time, I have always been the cinic and second guesser - but when it comes to your child...especially your child who has had two heart surgeries and numerous problems, a second guess isn't a bad thing. Upon leaving our appointment, we had our Heart Doctor already email and call our pediatrician and an ENT through Children's. It was all set. All we had to do was wait for them to call us and make an appointment!
A couple days later it was scheduled. Dougie's appointment with his Children's ENT doctor was during the week and in the morning - meaning Mommy would have to sit this one out. I was devastated and very nervous. Luckily, my mother was able to meet the Dougs at the appointment. I was on pins and needles all day long waiting to see what was going to happen. I was still thinking surgery. I got a text from Doug and it read " No surgery - we almost f*cked up." What did this mean? Oh my gosh! I felt like I should have received the worst mother of the year award. I ended up finding out that the doctor was shocked that another ENT was going to take out tonsils and adenoids of a 12 month old. This could have resulted in major bleeding - let alone not knowing if his heart would be okay coming off the anestheia. We were also worried about his addiction to pain meds coming back. It took us quite a long time to get him weaned off his methadone when he left the hospital. My heart sank into my stomach. I felt a huge relief, but sick knowing that my son was probably in the wrong hands. Had we not had his cardiology appointment, we could still have his operation this coming Monday. I kept it together all day at work/schoool but the minute I left there, I cried. I immediately called one of my sisters - not so much to tell them about Dougie's doctor's appointment, but to just cry and let it out. I needed reassurance that I was not a bad mother. I needed the guilt to go away for a bit. I could have not lived with myself had something happend to my lilttle man.
Our new ENT at Children's decided to start at square one and get another sleep study. Yes, it was back at square - a phrase I had placed many time on my facebook status during Dougie's post-op recovery a year ago...but this was a GOOD square one. Just today, I made the appointment for his official sleep study to be done. Unfortunately, the will not do it at a closer site. We have to go to the city to have it done. Because of his heart conditions and other possible problems, they want him there. Fine by me. I actually prefer it! Now I have something to look forward to...being back at our first home for a little visit. I pray to God that we are on the right track to getting this fixed and helping my lil Dougie. He deserves a good nights rest -as we all do.
Just the other night on tv, I was reminded again on how I am able to get through things - The Shawshank Redemption was on. It's probably mine and Doug's favorite movie and one of my favorite books/movies to teach in class. Things always seem to pop out at me when I need them to. I used a quote from this movie on Dougie's t-shirts we made for his benefit and I needed to be reminded of this quote more than ever right now - again...."Fear can hold you prisoner, Hope can set you free."
Have Hope everyone! HOPE HOPE HOPE
With the hours I am gone from home now and working at school - and being away from my kids, I'm not going to lie, sometimes I dread going to work. But then I think about our family and how much we need to support our children ; that keeps me going. And when I get there, I enter into this crazy pitching obsession that I have ALWAYS had. Sometimes I think my girls look at me like I'm this crazy lady who is crazy about pitching....well, I am. "Hello, my name is Mary, and I'm a pitch-aholic. I am constantly trying to make myself a better coach. Every year Doug and I intensely watch the Women's College Softball World Series. We analyze everything from hitting to pitching and fielding. We take mental notes on the strategies coaches use to what consistent things girls are doing with mechanics - especially pitching. Every year you will see ALL different kinds of pitchers and motions and even hairstyles! It's great. We stay up late talking about everything and dreaming of the day we head out to Bailee's first game.
Oh and Bailee! So I am at work one day and get a text from Doug saying, "we have Bieber Fever going on in the house" Now I have never been a Justin Bieber fan and I could not figure out why he was so popular...until I saw the grammy's. Bailee had watched a show prior in the day with Doug - it had music videos, including the song where he sings, "baby, baby, baby ohhhhhh" - which now happens to be Bailee's favorite song other than Lady Gaga's Bad Romance - or acutally her whole CD. So the Grammy's are on and we happen to start taping it right at Justin Bieber's perfornance...RECORD! We have now officially watched this episode more than 50 times in the matter of 4 days. It is crazy. Bailee will sing with the song, dance, clap, takes a bow at the end...everything! One night she even got her Karaoke machine out (A christmas present) and sang on the microphone with him - strobe light and all! It was FABULOUS! Coming home to her every night and seeing what she is going to do makes me so happy and love life. She also loves Lady GaGa - but now mommy said her CD is broken (we listened to the same songs on repeat for many many many car rides home) so I now introduced her to Madonna! She loves it. Even on our way the other night Bailee says, "mommy, Madonna sings really good. She's good mom." Oh yes, she is very very good and making millions of dollars. I have no idea what the future holds for my little Bailee, but she is going to be something big - I've had this feeling since she was born. (although doesnt every mom have that feeling?)
Dougie, my sweet Dougie. He is still not sleeping through the night. It is getting a little better though. He will sleep for about an hour or so soundly (next to us with either of our hands on his head) and then roll around and kick his legs for a good amount of time. The only thing that tends to calm him down is a bottle. I hate resorting to it, but it really is the only thing that will sooth him. He's not hungry, just uncomfortable.
Last week, we had his cardiology appointment. Luckily for me it got rescheduled for a Saturday I was able to make it. Again, the nerves were killing me. Long story short, it went really well. He gave the nurses a hard time and some evil stares, but all his results came back great. But the one thing that concerned out doctor was Dougie getting his tonsils and adenoids removed by someone who was not familiar with his history. She was worried about putting him under anesthia with his heart defects. She insisted we go through Children's. I felt sick to my stomach that I didn't make this decision myself. I have had a feeling in me for quite some time questioning my decision to seek treatment outside of Childern's. I was trying to believe and trust our pediatricians suggestions and referrals. For a long time, I have always been the cinic and second guesser - but when it comes to your child...especially your child who has had two heart surgeries and numerous problems, a second guess isn't a bad thing. Upon leaving our appointment, we had our Heart Doctor already email and call our pediatrician and an ENT through Children's. It was all set. All we had to do was wait for them to call us and make an appointment!
A couple days later it was scheduled. Dougie's appointment with his Children's ENT doctor was during the week and in the morning - meaning Mommy would have to sit this one out. I was devastated and very nervous. Luckily, my mother was able to meet the Dougs at the appointment. I was on pins and needles all day long waiting to see what was going to happen. I was still thinking surgery. I got a text from Doug and it read " No surgery - we almost f*cked up." What did this mean? Oh my gosh! I felt like I should have received the worst mother of the year award. I ended up finding out that the doctor was shocked that another ENT was going to take out tonsils and adenoids of a 12 month old. This could have resulted in major bleeding - let alone not knowing if his heart would be okay coming off the anestheia. We were also worried about his addiction to pain meds coming back. It took us quite a long time to get him weaned off his methadone when he left the hospital. My heart sank into my stomach. I felt a huge relief, but sick knowing that my son was probably in the wrong hands. Had we not had his cardiology appointment, we could still have his operation this coming Monday. I kept it together all day at work/schoool but the minute I left there, I cried. I immediately called one of my sisters - not so much to tell them about Dougie's doctor's appointment, but to just cry and let it out. I needed reassurance that I was not a bad mother. I needed the guilt to go away for a bit. I could have not lived with myself had something happend to my lilttle man.
Our new ENT at Children's decided to start at square one and get another sleep study. Yes, it was back at square - a phrase I had placed many time on my facebook status during Dougie's post-op recovery a year ago...but this was a GOOD square one. Just today, I made the appointment for his official sleep study to be done. Unfortunately, the will not do it at a closer site. We have to go to the city to have it done. Because of his heart conditions and other possible problems, they want him there. Fine by me. I actually prefer it! Now I have something to look forward to...being back at our first home for a little visit. I pray to God that we are on the right track to getting this fixed and helping my lil Dougie. He deserves a good nights rest -as we all do.
Just the other night on tv, I was reminded again on how I am able to get through things - The Shawshank Redemption was on. It's probably mine and Doug's favorite movie and one of my favorite books/movies to teach in class. Things always seem to pop out at me when I need them to. I used a quote from this movie on Dougie's t-shirts we made for his benefit and I needed to be reminded of this quote more than ever right now - again...."Fear can hold you prisoner, Hope can set you free."
Have Hope everyone! HOPE HOPE HOPE
Monday, February 7, 2011
Tears for Fears
I'm not exactly sure where I left off - I am actually too lazy to go back and check my previous blog. So I will just catch everyone up on our crazy life.
Dougie still isn't sleeping at ALL!!! He is up / or in his face appears to be sleeping - all night long. He kicks, twists, turns, wines, etc. Feel free to keep him for a night in case you don't believe us. Doug always tells me that no one will ever understand what we go through unless they have had him a for a night. It's actually kinda like our little family secret society. I think it makes us closer and have something unique that we experience nightly as a family! I guess that's a twisted or positive way to look at our sleep deprivation, petty arguments and a moody wife!
Okay, I will admit I have never been one to sleep in. I like sleeping, but I hate mornings. Although I remember being a little girl at about 6 years old, waking up at 5am, heading downstairs, grabbing something to eat, get out the play-dough while I watch episodes of Mr Wizard. But anywhooo...I am the crabbiest person in the mornings. Waking up on the right side of the bed seldom happens - just ask the hubby. He even told me the other day, "Can you wake up one morning and try to say something positive?" Usually when I get up - after a sleepless night, you would think I am pretending to be a sailor with all the cursing I do. Oops.
So, back to our son. Our sleepless nights are getting worse. Dougie seems to be regressing every night. It's a like a bad cold that goes for bad to worse. I am not going to sit here and have all of you throw a pity party for us, but it sucks and be happy you don't have to do it.
Yesterday, was the Superbowl party and my sister was there. After coming home after doing lessons and a clinic, I was even more exhausted. I came home to trying to tend to two needy kids, making my appetizer and everything else. My sister walks over and says, "I could go for a nap right now." Those words hit me so hard! I wanted to scream and unleash all my frustration out on her. I mumbled out my response while walking away, "YOU NEED A NAP?" Then the tears hit me. I started to ball. I have been really trying to hold tight to my emotions and not let them get the best of me, but I collapsed. I went into the next room regretting my words to my sister knowing she meant nothing by it - prayed those four words would not lead into a day of fighting. I was walked back towards the kitchen with my head down and tears falling and my sister grabbed me hugged me. We didn't need to say a word to each other, we non-verbally apologized with that hug and everything felt better. I couldn't believe the power of hug. Not very often does someone grab me and hug me just because - unless your name is Bailee and secretly want a piece of candy. But I have to give major props to my sister for understanding and coming in with the big save!
Back to Dougie - on top of the sleepless nights, that time of the month and crazy hormones came Dougie's 1 year cardiology appointment. I was not worried because I know of signs to watch out for when it comes to his ticker. But for some reason ( I wonder why - *sarcasm) I always seem to get extremely nervous. I think it is because I fear the unknown - like crazy fear the unknown - major anxiety here folks!
Luckily my mother-in-law went with me as my sidekick. Now Dougie is the kind of kid who will never win the "best patient" award. He has been poked and prodded his whole life. It's like when we walk into a doctor's office, his invisible radar is on high alert. "White jacket with a smile approaching" (robot voice). He watches everything and his cardiologist entered the room by saying, "Oh Dougie, I HEARD you were here!"
We discussed with our cardiologist that plan to get Dougie's adenoids and tonsils removed as a result of his apnea and limb movement disorder. She was very concerned that he would be seeing another surgeon not affiliated with Children's Memorial. My concern was the same. She got us pointed into the right direction and we will be getting his surgery done at Children's. I will not list the whole story because it's boring...but we are all hoping this will fix our little guy's problem.
Dougie still isn't sleeping at ALL!!! He is up / or in his face appears to be sleeping - all night long. He kicks, twists, turns, wines, etc. Feel free to keep him for a night in case you don't believe us. Doug always tells me that no one will ever understand what we go through unless they have had him a for a night. It's actually kinda like our little family secret society. I think it makes us closer and have something unique that we experience nightly as a family! I guess that's a twisted or positive way to look at our sleep deprivation, petty arguments and a moody wife!
Okay, I will admit I have never been one to sleep in. I like sleeping, but I hate mornings. Although I remember being a little girl at about 6 years old, waking up at 5am, heading downstairs, grabbing something to eat, get out the play-dough while I watch episodes of Mr Wizard. But anywhooo...I am the crabbiest person in the mornings. Waking up on the right side of the bed seldom happens - just ask the hubby. He even told me the other day, "Can you wake up one morning and try to say something positive?" Usually when I get up - after a sleepless night, you would think I am pretending to be a sailor with all the cursing I do. Oops.
So, back to our son. Our sleepless nights are getting worse. Dougie seems to be regressing every night. It's a like a bad cold that goes for bad to worse. I am not going to sit here and have all of you throw a pity party for us, but it sucks and be happy you don't have to do it.
Yesterday, was the Superbowl party and my sister was there. After coming home after doing lessons and a clinic, I was even more exhausted. I came home to trying to tend to two needy kids, making my appetizer and everything else. My sister walks over and says, "I could go for a nap right now." Those words hit me so hard! I wanted to scream and unleash all my frustration out on her. I mumbled out my response while walking away, "YOU NEED A NAP?" Then the tears hit me. I started to ball. I have been really trying to hold tight to my emotions and not let them get the best of me, but I collapsed. I went into the next room regretting my words to my sister knowing she meant nothing by it - prayed those four words would not lead into a day of fighting. I was walked back towards the kitchen with my head down and tears falling and my sister grabbed me hugged me. We didn't need to say a word to each other, we non-verbally apologized with that hug and everything felt better. I couldn't believe the power of hug. Not very often does someone grab me and hug me just because - unless your name is Bailee and secretly want a piece of candy. But I have to give major props to my sister for understanding and coming in with the big save!
Back to Dougie - on top of the sleepless nights, that time of the month and crazy hormones came Dougie's 1 year cardiology appointment. I was not worried because I know of signs to watch out for when it comes to his ticker. But for some reason ( I wonder why - *sarcasm) I always seem to get extremely nervous. I think it is because I fear the unknown - like crazy fear the unknown - major anxiety here folks!
Luckily my mother-in-law went with me as my sidekick. Now Dougie is the kind of kid who will never win the "best patient" award. He has been poked and prodded his whole life. It's like when we walk into a doctor's office, his invisible radar is on high alert. "White jacket with a smile approaching" (robot voice). He watches everything and his cardiologist entered the room by saying, "Oh Dougie, I HEARD you were here!"
We discussed with our cardiologist that plan to get Dougie's adenoids and tonsils removed as a result of his apnea and limb movement disorder. She was very concerned that he would be seeing another surgeon not affiliated with Children's Memorial. My concern was the same. She got us pointed into the right direction and we will be getting his surgery done at Children's. I will not list the whole story because it's boring...but we are all hoping this will fix our little guy's problem.
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