October 14, 2017
Bradley had one of THOSE days... both wonderful and troubling.
He wan't feeling very good. Any time we left him he would cry and cry, so much that his little voice was getting hoarse by the evening. We are troubled because we know it has to hurt his throat, so is his throat sore from crying or is his throat sore because he has come down with strep throat that has been running through his classroom? That's worse case, we're hoping that he is just fighting off the effects of his flu shot. The girls haven't shown any side effects or flu like symptoms, but they have a lot stronger immune systems than Bradley does. Of course, every new school year we have to wait for the first bout of illness to run through his classroom and we see how Bradley is going to be able to fight off each new round of bugs and germs. The trouble is that I get hopeful that each year he's going to be able to fight off each round, and each year he proves how vulnerable he is to this stuff. It's interesting actually, his teacher and the aides all say the equivalent to me; they get used to him looking so healthy and doing so well, then he'll come down with a mild cold that never stays mild and they just look at me in shock, commenting about how he goes south so quickly. Yeah, I know. Sigh.
So, we're a little troubled and keeping a close eye on Bradley to make sure he is not headed down a difficult road. He spent a lot of time doing two things today, walking between the living room and the kitchen constantly...and watching his movie. The walking back and forth gets frustrating because once you hit 10,000 steps on your Fitbit...I mean come on, how many more are truly necessary without looking like you're going for over-kill. And he only wants to sit and have one popsicle after another after another. The problem is, he knows how to open the freezer, pull out his popsicles and then sit on at the table expectantly. When you give him one, he goes and grabs another one. And then when that one is gone, he goes to grab another... we started cutting him off. It was all fun and games, except he would start to freeze his throat and then he starts to gag a bit. And there's the whole issue that he will only eat popsicles turning his nose up at any other food...uh...not enough calories to cover his dietary needs. So he started getting cut off of popsicles and only given them occasionally. But my kid is slick, after figuring out that the popsicles had disappeared from the freezer, he checked a couple times and just knew we'd done something shifty with them. He waited for his chance, and his first opportunity when one of the girls left the garage door unlocked, he was out the door and finding his coveted popsicles in the freezer in the garage. Good grief! We have to keep that door locked! Some families have to keep their garage door locked so that their little ones stay away from power tools; not our kid, he zeroes in on the popsicles.
So we get him to give up the popsicles for other food. He helps me get his mustard and lunch meat out of the fridge in order to make him a sandwich, and he eats those again. He has returned to his peaches with a vengeance like to the extent that I have to keep telling him one a day buddy, one a day. Same with the lemon pudding. He thinks that all he needs to eat is peaches and pudding. He's eating more again, but good God, the amount of time that he spends zeroed and focused on one thing with the refusal to have anything else is frustrating for us. But he did eat, so that's something.
And then there was the time we spent watching him with his movie. There are times he will choose to try to copy whatever movie he is watching. Yesterday he was trying to copy Boo from "Monster's Inc" - the part at the end where she's screaming and laughing and crying...really loud...while we were in a quiet doctor's office...while the doctor is listening to my daughter's lungs and trying not to laugh at my son. Today it was "Pitch Perfect" and he was trying to copy the hand signals...luckily all the clean ones, and then trying to match pitch if you will, and even trying to say a few of the same sayings...again, luckily the clean phrases. Good times indeed. It was so hard to not laugh and let him know we were watching because as soon as he knows that we are watching he stops dancing, signing, or mimicking. I think he gets shy. But I think it's about the cutest thing ever.
So he's sleeping now, for a little while anyway. And then he'll be up visiting me at some point, but hopefully a good night's sleep and one more day away from the flu shot and he'll be recovering and not feeling so bad...or he'll feel worse and we'll be visiting the doctor on Monday to find out where we are with him. We just have to do that once in a while. With him having allergy shots in the past almost year, he has been stronger and has been sick less often...here's hoping that he fights off the strep that hit his classroom and keeps healthy. We can certainly hope. His little voice is always cute, it's even super cute when it's hoarse, but I hope he leaves that behind tomorrow and gives me his little whispers that lets me hear his voice and the quiet little words that he gives me. Love that little guy and all the stuff he has to tell me...hands or whispers...or the occasional really loud yell that echoes a bit. HAHA...
Life is about the good and the bad and it's about the days that it's all mixed together. Today was a day like that. Meeting the Challenges here at home and in the middle of this 31 For 21 Blog Challenge. Have a good night all!
Saturday, October 14, 2017
Friday, October 13, 2017
Friday the 13th - Not So Bad.
October 13, 2017
We spent the afternoon at the doctor's office, this time not for Bradley - and yet, my sweet dude didn't come through unscathed. Ther girls had their annual physicals, a much despaired event but necessary nonetheless, and for the most part they do fairly well. Madison gets so nervous she babbles nonstop and calls the doctor the wrong name. Granted she isn't our usual doctor but as young ladies with an opinion about life, God knows why I allow that, I let them decide if they want our regular pediatrician or his female partner to be their physical doctor. They both chose her and off we went. We see her off and on, and usually at least once a year, but Madison couldn't remember her name. Good grief!
I have a fifteen year old that is 5 foot 7 ish and Sydney is 5 foot 4. I am 5 foot 6 and Madison is topping me by about an inch. Good Lord! When did that happen? They did their height and weight and then we all had to wait. You see, as they were taking off their shoes Bradley was busy taking off his and setting them perfectly in line to theirs. As he waited patiently for them to finish, he then climbed up and stood on the scales to get his weight. You see, Bradley has been here a lot and he totally knows this drill. Take off your shoes and then stand on the scale and get your weight. There was a time when we would have taken note of his weight and I probably would have been typing it into my phone or in my datebook. But today, we know that he's been holding steady at a solid 50 pounds. Considering I just had him in there a week ago, I know that he's hovering between 48 or 50 pounds all the time. He drops below that and we'll be concerned and writing down numbers again, but for now, we're good with the current status.
So after Bradley does his thing on the scale, he hops down and follows the girls to the little area where the nurse takes the girls for their blood pressure, eye tests, and hearing tests. Bradley won't let them take his own blood pressure, but was willing and quite determined to sit in Madison's lap while she had her temp taken, her blood pressure taken and one of the eye tests was done. After that, Madison turned towards Sydney and Bradley reached down and climbed into her lap to sit patiently and wait.
Once in the room, he was confused by the fact that he wasn't the one getting to sit on the table. Instead, he finally decided to sit down and started to watch and I believe; copy the dialogue, especially the screaming, from "Monster's Inc." The doctor found it quite entertaining as she walked in carrying this massive four inch folder, with an inch folder on top and one that's about a quarter inch thick. So Madison's is the quarter, Sydney's is the inch, and my poor son has a good four inch folder that contains his life since we got to Camarillo in 2011. Good God! And these poor docs are having to carry this massive, War and Peace epic novel-like folder around risking carpal tunnel. I told them to make it smaller, I don't want their impending wrist injuries on my conscience.
So the girls are finishing up and the doctor tells me that they have flu shots in. The good news is: Madison didn't pass out or freak out, she just kind of did some gentle hyperventilating but managed to pull it together. This is a huge step for her. She has been known to dissolve into tears at the mention of a needle. Instead of panicking, she said she could do it, but asked if I would hold her hand. I told her of course. So Sydney went first, then I held Madison's hand as she had hers (and man she did awesome). But then it was Bradley's turn. This is not Bradley's usual doctor; but she is fully aware, as are all of the partners at this practice, that Bradley is a special case that requires certain precautions to help him get through each winter. So when I say he didn't come out unscathed, he also came out with a flu shot. And before I left, I left a note for his doctor requesting that he ask for pre-authorization for a pneumonia shot. As a high risk patient, he needs to get the pneumonia shot to try to protect him each year. Last year, I had to fight his insurance for almost four months because they couldn't figure out that my guy, at 6, is a high risk patient and needs the shot. It finally got covered but what a pain in the butt!
As for the flu shot; as usual, we had to hold him down so he wouldn't move and that was the worst part. My little buddy hates to be held down for anything. As for the shot itself, he didn't even feel it. But for the last year, we have been taking Bradley in every week for allergy shots. And we are seeing improvements. He hasn't been on anti-biotics since last spring and that is an answer to a prayer. Every week has moved to every two and then to every three. The good news, he gets to join his sister on a four week schedule which makes us all very happy! None happier than Sydney and Bradley for sure. Poor kids! I'm not sure if a shot every four weeks will be better or not. Yeah for less shots, but darn if he will be able to forget about his shots in that long four weeks between shots.
At the end of the day, both my girls are very healthy and they have their protection from the flu that also will protect their brother. Every little bit helps for sure. As for Bradley, he is doing very well today too! Not bad for a superstitious day like Friday the 13th, not bad at all.
We spent the afternoon at the doctor's office, this time not for Bradley - and yet, my sweet dude didn't come through unscathed. Ther girls had their annual physicals, a much despaired event but necessary nonetheless, and for the most part they do fairly well. Madison gets so nervous she babbles nonstop and calls the doctor the wrong name. Granted she isn't our usual doctor but as young ladies with an opinion about life, God knows why I allow that, I let them decide if they want our regular pediatrician or his female partner to be their physical doctor. They both chose her and off we went. We see her off and on, and usually at least once a year, but Madison couldn't remember her name. Good grief!
I have a fifteen year old that is 5 foot 7 ish and Sydney is 5 foot 4. I am 5 foot 6 and Madison is topping me by about an inch. Good Lord! When did that happen? They did their height and weight and then we all had to wait. You see, as they were taking off their shoes Bradley was busy taking off his and setting them perfectly in line to theirs. As he waited patiently for them to finish, he then climbed up and stood on the scales to get his weight. You see, Bradley has been here a lot and he totally knows this drill. Take off your shoes and then stand on the scale and get your weight. There was a time when we would have taken note of his weight and I probably would have been typing it into my phone or in my datebook. But today, we know that he's been holding steady at a solid 50 pounds. Considering I just had him in there a week ago, I know that he's hovering between 48 or 50 pounds all the time. He drops below that and we'll be concerned and writing down numbers again, but for now, we're good with the current status.
So after Bradley does his thing on the scale, he hops down and follows the girls to the little area where the nurse takes the girls for their blood pressure, eye tests, and hearing tests. Bradley won't let them take his own blood pressure, but was willing and quite determined to sit in Madison's lap while she had her temp taken, her blood pressure taken and one of the eye tests was done. After that, Madison turned towards Sydney and Bradley reached down and climbed into her lap to sit patiently and wait.
Once in the room, he was confused by the fact that he wasn't the one getting to sit on the table. Instead, he finally decided to sit down and started to watch and I believe; copy the dialogue, especially the screaming, from "Monster's Inc." The doctor found it quite entertaining as she walked in carrying this massive four inch folder, with an inch folder on top and one that's about a quarter inch thick. So Madison's is the quarter, Sydney's is the inch, and my poor son has a good four inch folder that contains his life since we got to Camarillo in 2011. Good God! And these poor docs are having to carry this massive, War and Peace epic novel-like folder around risking carpal tunnel. I told them to make it smaller, I don't want their impending wrist injuries on my conscience.
So the girls are finishing up and the doctor tells me that they have flu shots in. The good news is: Madison didn't pass out or freak out, she just kind of did some gentle hyperventilating but managed to pull it together. This is a huge step for her. She has been known to dissolve into tears at the mention of a needle. Instead of panicking, she said she could do it, but asked if I would hold her hand. I told her of course. So Sydney went first, then I held Madison's hand as she had hers (and man she did awesome). But then it was Bradley's turn. This is not Bradley's usual doctor; but she is fully aware, as are all of the partners at this practice, that Bradley is a special case that requires certain precautions to help him get through each winter. So when I say he didn't come out unscathed, he also came out with a flu shot. And before I left, I left a note for his doctor requesting that he ask for pre-authorization for a pneumonia shot. As a high risk patient, he needs to get the pneumonia shot to try to protect him each year. Last year, I had to fight his insurance for almost four months because they couldn't figure out that my guy, at 6, is a high risk patient and needs the shot. It finally got covered but what a pain in the butt!
As for the flu shot; as usual, we had to hold him down so he wouldn't move and that was the worst part. My little buddy hates to be held down for anything. As for the shot itself, he didn't even feel it. But for the last year, we have been taking Bradley in every week for allergy shots. And we are seeing improvements. He hasn't been on anti-biotics since last spring and that is an answer to a prayer. Every week has moved to every two and then to every three. The good news, he gets to join his sister on a four week schedule which makes us all very happy! None happier than Sydney and Bradley for sure. Poor kids! I'm not sure if a shot every four weeks will be better or not. Yeah for less shots, but darn if he will be able to forget about his shots in that long four weeks between shots.
At the end of the day, both my girls are very healthy and they have their protection from the flu that also will protect their brother. Every little bit helps for sure. As for Bradley, he is doing very well today too! Not bad for a superstitious day like Friday the 13th, not bad at all.
Thursday, October 12, 2017
The Medical Stuff About Bradley
October 12, 2017
We like to give the world the positive view of life with Bradley, we like to encourage how our life is really not that different from everyone else's. We like to show the side of our life of raising two beautiful daughters and one beautiful son. We have all that, we have everything really, we are Blessed. That's the story we like to tell, and once in a while we have to share the rest of it.
With Bradley there are times we share the rest of it, there are times we like to let those that are Bradley fans and our biggest supporters know what's happening with Bradley.
Bradley has a pretty bad reflux, enough that he has times that he will gag and retch because of his reflux. This has been happening quite a bit, so with the realization that every time he refluxes he sends acid up his esophagus which makes him risk the potential of damage, we had to go talk to a surgeon at UCLA to determine what our options will be for Bradley. His suggestion was to go for an Endoscopy to see what we are looking at in his esophagus. If he showed damage we would be heading in immediately, buy a little time if mild to moderate damage, and if things look okay, then hopefully find a plan D that would avoid surgery.
Bradley was awake before we finished talking to his doctor, he had a lot to say. We were incredibly relieved to see that he didn't have anything more than mild damage. We were incredibly baffled to learn that when Bradley had to have his Fundoplication replaced, or the Diaphram Hernia repair...somewhere, in the midst of all that work, somehow a small pocket was created around the edge of his Fundoplication. So that means: when he eats, or drinks, or when his reflux starts kicking in, material gets caught in that pocket. As a result, he will have moments when his stomach will suddenly contract, and then the material in that pocket will expel and flow up into his Esophagus. There is no way he can be ready to handle the sudden flow into his esophagus. To make it worse, his esophagus works in a straight line without the cylindrical flow south like most of us. He has a Fundoplication because his esophageal sphincter didn't work correctly. When he needed it open to let food down, it would close and food would fly up and out, giving him no calories to absorb. When he needed it to close after the food went down, it wouldn't and food would fly back up with acid. The Fundoplication was our only chance of keeping him here. Unfortunately, the pressure of the stomach wrapped around the esophagus makes for too much pressure at times and makes him very susceptible to hernias. Hiatal hernias cause the reflux to worsen. He has a Hiatal hernia now, has for almost two years. We found it after a horrible bout of retching where he sent fluid into his lungs and immediately starting coughing. It wasn't the respiratory cough, it was wet and unproductive. I immediately called his Doctor who told me to bring him in the next day if he started a fever. One high fever and seizure because of it later, we were in the X-ray room getting a chest x-ray the next day to determine he had Aspiration Pneumonia, our quick attack kept him out of the hospital. But set us on this path we're on now.
Every time his Fundoplication has to be re-wrapped surgically, we have a 25 % less chance of it working successfully. 100% when it was initially done, but then he had a horrendous Hiatal hernia tear through it three months later, he couldn't eat at all and we had to go in again. Take two, 75% chance, and it worked pretty well. We had to work some dilatations to give him some room to swallow, and finally started to improve. Now this hiatal is hanging over our heads. We know that if they go to fix the hernia, it has to be a complete redo of his Fundoplication and we are looking at a 50/50 chance with it working. As if that isn't frightening enough, we are looking at the realization that this might be it, there aren't further chances. Surgeons are only willing to go back in one more time. If we do this and then he has another hernia our options for him will be a complete change in his life. Options are things like a tube that would go right into his digestive tract and avoid his stomach, a bypass where his stomach is taken out of the equation completely. So my son that has been fighting to learn how to eat as much as possible, would suddenly no longer be eating anything, or barely anything. He would be back on tube feedings and we would be trying to get his tolerance up to a level that would allow for him to get what he needs a lot quicker than what he can barely tolerate now.
Things like night feedings, possible daytime feedings with Bradley wearing a backpack to carry his feeding machine, not eating his favorite things, not trying any of the wonderful treats that he tries while we are out and about...all of that and more. The kind of life changes that would happen for Bradley; to Bradley, are beyond our comprehension right now. We are looking at the lifespan of an almost eight year old boy...if he has to have surgery in the next year, we can try to limp along with what they give us...a 50/50 shot that we can get another few years, to lots of years...a total crapshoot as to what he would get before he got hit with another hernia and the inevitable changes to his life that would be permanent.
Somehow, we have moved from two months out of surgery and his GI smiling at me and saying: "Maybe in a year we'll be weaning him off his button, he looks so much better in person than he does on paper." To today. Now it is, we'll look at his esophagus once a year to make sure his reflux isn't causing damage to cells and turning them cancerous. What a difference a few years makes.
Today we are trying a new medication to provide longer coverage for his reflux. We are attempting to keep him as healthy as we can. But every time he has a retching episode and they last longer each time, we hold our breath and wait. Today, we know that he is only two bouts of Aspiration Pneumonia away from a surgery that we cannot avoid. And we sit here with this looming realization that he has a hard time with the Pneumonia in the first place, coming through it all right is a task in itself. But coming through it twice is as much a gamble for him as him coming through this next surgery. With so many uncertainties around Bradley, it is strictly self preservation alone that keeps us trying to keep the positive in the front of our thoughts.
It took me months before I could write about this, to let our Bradley lovers know what is happening to him, with him. I don't live in denial, but I live with a fear that explodes every time I have to hold him when he's unable to breath as he tries to work through the retching and calm it all down again. I have to sweat through the ensuing fever that elevates just enough to keep me up at night, watching and waiting, wondering if his body will fight off the little bit he sent into his lungs or if we're looking at our first bout of Aspiration pneumonia. And then he'll fight enough, his temp will drop again and he'll do better. On the new reflux medication he hasn't had the month long cough as stuff in his esophagus doesn't clear out; instead, he's been able to clear a little quicker. The fight continues.
His medical world is a complicated one, one that is so much bigger than we can truly comprehend, let alone ask for any others to comprehend. And sometimes we can keep it on the back burner in order to keep our life on an even keel. We try to keep things positive around here, and sometimes it might seem that we're hiding the difficulties. No, more like trying to keep the faith and keep things in the moment. We know that coming down the road is an extensive surgery for our son, this time there is no Orthoscopic surgery, he will be have to be opened up and so much scar tissue will have to be removed we know we are looking at a long stay at the hospital, so much pain for him...and fevers, the dreaded fevers that will come to fight the surgical cuts...and those moments, those long moments as we watch him fight and will him to get better and know that he will have to really fight or the worst could come.
We're not downplaying his future; we're aiming for the best he can do and be, until the day that the picture changes and the world around us has to adjust to get him through what comes.
Maybe I should be fighting harder for his school life, not sure what more he should have...but I guess I could spend five minutes scrolling though the parents pages on Facebook to give me ideas and massive concerns because I am not on their path, but I don't. I am encouraging him to grow as best he can where he is...I'm supporting him medically and trying to remember the other stuff too. Sometimes it's like they can't coincide in the same space, but I still worry about it and try.
We love Bradley, we will fight for him in every aspect of his life. We will support him and our care for him only changes based on what he needs. When the normal you have changes to a new normal, you get used to the new normal or it breaks you. We haven't been broken yet, God willing, we will continue to keep striving by supporting each other and through the care and support from our Bradley supporters. Thanks Guys! You keep the line moving in our house.
So a Bradley medical update. One day at a time from us. Challenges on top of challenges... makes the Blog Challenge a little less daunting actually.
We like to give the world the positive view of life with Bradley, we like to encourage how our life is really not that different from everyone else's. We like to show the side of our life of raising two beautiful daughters and one beautiful son. We have all that, we have everything really, we are Blessed. That's the story we like to tell, and once in a while we have to share the rest of it.
With Bradley there are times we share the rest of it, there are times we like to let those that are Bradley fans and our biggest supporters know what's happening with Bradley.
Bradley has a pretty bad reflux, enough that he has times that he will gag and retch because of his reflux. This has been happening quite a bit, so with the realization that every time he refluxes he sends acid up his esophagus which makes him risk the potential of damage, we had to go talk to a surgeon at UCLA to determine what our options will be for Bradley. His suggestion was to go for an Endoscopy to see what we are looking at in his esophagus. If he showed damage we would be heading in immediately, buy a little time if mild to moderate damage, and if things look okay, then hopefully find a plan D that would avoid surgery.
Bradley was awake before we finished talking to his doctor, he had a lot to say. We were incredibly relieved to see that he didn't have anything more than mild damage. We were incredibly baffled to learn that when Bradley had to have his Fundoplication replaced, or the Diaphram Hernia repair...somewhere, in the midst of all that work, somehow a small pocket was created around the edge of his Fundoplication. So that means: when he eats, or drinks, or when his reflux starts kicking in, material gets caught in that pocket. As a result, he will have moments when his stomach will suddenly contract, and then the material in that pocket will expel and flow up into his Esophagus. There is no way he can be ready to handle the sudden flow into his esophagus. To make it worse, his esophagus works in a straight line without the cylindrical flow south like most of us. He has a Fundoplication because his esophageal sphincter didn't work correctly. When he needed it open to let food down, it would close and food would fly up and out, giving him no calories to absorb. When he needed it to close after the food went down, it wouldn't and food would fly back up with acid. The Fundoplication was our only chance of keeping him here. Unfortunately, the pressure of the stomach wrapped around the esophagus makes for too much pressure at times and makes him very susceptible to hernias. Hiatal hernias cause the reflux to worsen. He has a Hiatal hernia now, has for almost two years. We found it after a horrible bout of retching where he sent fluid into his lungs and immediately starting coughing. It wasn't the respiratory cough, it was wet and unproductive. I immediately called his Doctor who told me to bring him in the next day if he started a fever. One high fever and seizure because of it later, we were in the X-ray room getting a chest x-ray the next day to determine he had Aspiration Pneumonia, our quick attack kept him out of the hospital. But set us on this path we're on now.
Every time his Fundoplication has to be re-wrapped surgically, we have a 25 % less chance of it working successfully. 100% when it was initially done, but then he had a horrendous Hiatal hernia tear through it three months later, he couldn't eat at all and we had to go in again. Take two, 75% chance, and it worked pretty well. We had to work some dilatations to give him some room to swallow, and finally started to improve. Now this hiatal is hanging over our heads. We know that if they go to fix the hernia, it has to be a complete redo of his Fundoplication and we are looking at a 50/50 chance with it working. As if that isn't frightening enough, we are looking at the realization that this might be it, there aren't further chances. Surgeons are only willing to go back in one more time. If we do this and then he has another hernia our options for him will be a complete change in his life. Options are things like a tube that would go right into his digestive tract and avoid his stomach, a bypass where his stomach is taken out of the equation completely. So my son that has been fighting to learn how to eat as much as possible, would suddenly no longer be eating anything, or barely anything. He would be back on tube feedings and we would be trying to get his tolerance up to a level that would allow for him to get what he needs a lot quicker than what he can barely tolerate now.
Things like night feedings, possible daytime feedings with Bradley wearing a backpack to carry his feeding machine, not eating his favorite things, not trying any of the wonderful treats that he tries while we are out and about...all of that and more. The kind of life changes that would happen for Bradley; to Bradley, are beyond our comprehension right now. We are looking at the lifespan of an almost eight year old boy...if he has to have surgery in the next year, we can try to limp along with what they give us...a 50/50 shot that we can get another few years, to lots of years...a total crapshoot as to what he would get before he got hit with another hernia and the inevitable changes to his life that would be permanent.
Somehow, we have moved from two months out of surgery and his GI smiling at me and saying: "Maybe in a year we'll be weaning him off his button, he looks so much better in person than he does on paper." To today. Now it is, we'll look at his esophagus once a year to make sure his reflux isn't causing damage to cells and turning them cancerous. What a difference a few years makes.
Today we are trying a new medication to provide longer coverage for his reflux. We are attempting to keep him as healthy as we can. But every time he has a retching episode and they last longer each time, we hold our breath and wait. Today, we know that he is only two bouts of Aspiration Pneumonia away from a surgery that we cannot avoid. And we sit here with this looming realization that he has a hard time with the Pneumonia in the first place, coming through it all right is a task in itself. But coming through it twice is as much a gamble for him as him coming through this next surgery. With so many uncertainties around Bradley, it is strictly self preservation alone that keeps us trying to keep the positive in the front of our thoughts.
It took me months before I could write about this, to let our Bradley lovers know what is happening to him, with him. I don't live in denial, but I live with a fear that explodes every time I have to hold him when he's unable to breath as he tries to work through the retching and calm it all down again. I have to sweat through the ensuing fever that elevates just enough to keep me up at night, watching and waiting, wondering if his body will fight off the little bit he sent into his lungs or if we're looking at our first bout of Aspiration pneumonia. And then he'll fight enough, his temp will drop again and he'll do better. On the new reflux medication he hasn't had the month long cough as stuff in his esophagus doesn't clear out; instead, he's been able to clear a little quicker. The fight continues.
His medical world is a complicated one, one that is so much bigger than we can truly comprehend, let alone ask for any others to comprehend. And sometimes we can keep it on the back burner in order to keep our life on an even keel. We try to keep things positive around here, and sometimes it might seem that we're hiding the difficulties. No, more like trying to keep the faith and keep things in the moment. We know that coming down the road is an extensive surgery for our son, this time there is no Orthoscopic surgery, he will be have to be opened up and so much scar tissue will have to be removed we know we are looking at a long stay at the hospital, so much pain for him...and fevers, the dreaded fevers that will come to fight the surgical cuts...and those moments, those long moments as we watch him fight and will him to get better and know that he will have to really fight or the worst could come.
We're not downplaying his future; we're aiming for the best he can do and be, until the day that the picture changes and the world around us has to adjust to get him through what comes.
Maybe I should be fighting harder for his school life, not sure what more he should have...but I guess I could spend five minutes scrolling though the parents pages on Facebook to give me ideas and massive concerns because I am not on their path, but I don't. I am encouraging him to grow as best he can where he is...I'm supporting him medically and trying to remember the other stuff too. Sometimes it's like they can't coincide in the same space, but I still worry about it and try.
We love Bradley, we will fight for him in every aspect of his life. We will support him and our care for him only changes based on what he needs. When the normal you have changes to a new normal, you get used to the new normal or it breaks you. We haven't been broken yet, God willing, we will continue to keep striving by supporting each other and through the care and support from our Bradley supporters. Thanks Guys! You keep the line moving in our house.
So a Bradley medical update. One day at a time from us. Challenges on top of challenges... makes the Blog Challenge a little less daunting actually.
Wednesday, October 11, 2017
Shower Time Any Time!
October 11, 2017
So I brought Bradley in from school yesterday. While I took his lunchbox with me, he sat down in the entryway and immediately rid himself of his socks which went flying and his shoes, which got lined up precisely side by side. He then made his usual request for his movie, which I denied. And so of course, he walked down the hall towards my room and where he knows it sits to charge... knowing this is our routine and that I would find him paying homage at the bottom of my dresser waiting for the IPad Gods, or mom, to finally give in and give it to him at some point...I felt pretty secure in dumping his Tupperware in the sink with his fork and spoon, refilling his Pediasure and Juice cups and putting them in the fridge, and then wiping out and putting away his lunchbox. Then I walked down the hall to find my little guy.
Hmmm....some days he really likes to surprise the Heck out of me. I walk around the corner and don't find him in his spot. Pause and listen...ahhh, the bathroom. As I opened the door, I saw him in our shower, it's a glass enclosed shower. So I can see him standing there, barefoot in the shower, trying to take his shirt off. Oh, okay... So I join him at the door, and I ask him: "Do you want to take a shower?" He looks at me and says: "Yesss!"
Since we have added Bradley to this family, he has been unpredictable and we have been very careful to be spontaneous to adjust to his needs, and definitely not set too many plans in motion because it always sucks to cancel plans; especially if they involve other people. So there are times that if I can do it, I drop everything to accommodate the potential teaching moments that come along with him. If he indicates he might have an inkling to try the potty, you'll see us running through the house with him naked and mommy rushing him to the potty; watch closely, and you might see me running to the fridge for mini peanut butter cups to encourage said potty time. So here I am, in the middle of the afternoon with an hour before I have to pick up Sydney and I am stripping Bradley down while he stands in my shower.
He pointed towards the shower head, and I asked him, "Shower? Like Daddy?"
"Yesss... Dada".
"Okay! Let's take a shower!"
I moved him close to me, then turned the water on away from him, knowing it would be cold and not wanting to scare him away. He tapped his feet in the puddles of the water, not caring that it was cold. Once it was warm enough I let him know it was ready and directed it on him. He stood under it and even turned around for me. Then he pointed to the soap, so I laughed, grabbed it and started soaping him down. Then when I leaned back, he started washing his arms, his belly and his chest. Then I grabbed Dad's shampoo and started on his head. When I pulled back he put his hands up and started washing his hair in the front. I let him go at it until he put his hands back down, then I worked on rinsing out the soap, he tried to help me do that too. I was so excited and had no way to share it with Eric, so I stepped back, grabbed my phone, prepped the video, the leaned in and pretended to rinse his hair again and said: "Your turn." He actually agreed and as I grabbed my phone and hit record I caught him moving his hands in his hair and trying to rinse it.
I shut down the shower and wrapped him in a towel and rubbed him dry. He then pointed to his shirt and I pulled it over his head and he went running to his room and waited by his changing table to be lifted up and then he lay down and waited for his diaper and clothes.
Every little bit of understanding that leads to the tiniest inklings of compliance are so exciting in our house. Bradley is fifty pounds, and almost forty four inches tall, it's getting difficult to keep moving him around let alone trying to do anything when he isn't in the mood to help out. We want him to have a say in the world around him, especially things that are happening to him or because of him. We can only hope that that will lead him to have a life that he leads in a way that makes him happy and gives him a sense of community with connections and responsibilities. He has an inquisitive mind and a preference for doing things outside of the box, so there has to be a world out there where he will fit in and be appreciated for all the wonderful aspects that make him who he is. At least his Mom can certainly hope so.
Sure, they're baby steps, they're always baby steps. But the baby steps are truly the cutest steps to take and that's okay. My big boy is growing up really fast, he pushes his development in surges rather than stages, the rest of the family just has to be standing by ready to react and not miss it. For now, Bradley's desire to initiate a shower like a big boy in a big boy type shower is just a really cool little milestone for him. Does that mean he's giving up baths? Probably not any time soon, a bath is just one, big, not-so muddy puddle that he loves as much as his Beloved Peppa Pig. Too cool to pass up.
Exciting little moments in our house! Bradley is the coolest kid and his days of discovery are worth all the work and worry!
Winding down Day 11 in the Blog Challenge for Awareness and Acceptance for Bradley and all his friends out there with Down syndrome too!
So I brought Bradley in from school yesterday. While I took his lunchbox with me, he sat down in the entryway and immediately rid himself of his socks which went flying and his shoes, which got lined up precisely side by side. He then made his usual request for his movie, which I denied. And so of course, he walked down the hall towards my room and where he knows it sits to charge... knowing this is our routine and that I would find him paying homage at the bottom of my dresser waiting for the IPad Gods, or mom, to finally give in and give it to him at some point...I felt pretty secure in dumping his Tupperware in the sink with his fork and spoon, refilling his Pediasure and Juice cups and putting them in the fridge, and then wiping out and putting away his lunchbox. Then I walked down the hall to find my little guy.
Hmmm....some days he really likes to surprise the Heck out of me. I walk around the corner and don't find him in his spot. Pause and listen...ahhh, the bathroom. As I opened the door, I saw him in our shower, it's a glass enclosed shower. So I can see him standing there, barefoot in the shower, trying to take his shirt off. Oh, okay... So I join him at the door, and I ask him: "Do you want to take a shower?" He looks at me and says: "Yesss!"
Since we have added Bradley to this family, he has been unpredictable and we have been very careful to be spontaneous to adjust to his needs, and definitely not set too many plans in motion because it always sucks to cancel plans; especially if they involve other people. So there are times that if I can do it, I drop everything to accommodate the potential teaching moments that come along with him. If he indicates he might have an inkling to try the potty, you'll see us running through the house with him naked and mommy rushing him to the potty; watch closely, and you might see me running to the fridge for mini peanut butter cups to encourage said potty time. So here I am, in the middle of the afternoon with an hour before I have to pick up Sydney and I am stripping Bradley down while he stands in my shower.
He pointed towards the shower head, and I asked him, "Shower? Like Daddy?"
"Yesss... Dada".
"Okay! Let's take a shower!"
I moved him close to me, then turned the water on away from him, knowing it would be cold and not wanting to scare him away. He tapped his feet in the puddles of the water, not caring that it was cold. Once it was warm enough I let him know it was ready and directed it on him. He stood under it and even turned around for me. Then he pointed to the soap, so I laughed, grabbed it and started soaping him down. Then when I leaned back, he started washing his arms, his belly and his chest. Then I grabbed Dad's shampoo and started on his head. When I pulled back he put his hands up and started washing his hair in the front. I let him go at it until he put his hands back down, then I worked on rinsing out the soap, he tried to help me do that too. I was so excited and had no way to share it with Eric, so I stepped back, grabbed my phone, prepped the video, the leaned in and pretended to rinse his hair again and said: "Your turn." He actually agreed and as I grabbed my phone and hit record I caught him moving his hands in his hair and trying to rinse it.
I shut down the shower and wrapped him in a towel and rubbed him dry. He then pointed to his shirt and I pulled it over his head and he went running to his room and waited by his changing table to be lifted up and then he lay down and waited for his diaper and clothes.
Every little bit of understanding that leads to the tiniest inklings of compliance are so exciting in our house. Bradley is fifty pounds, and almost forty four inches tall, it's getting difficult to keep moving him around let alone trying to do anything when he isn't in the mood to help out. We want him to have a say in the world around him, especially things that are happening to him or because of him. We can only hope that that will lead him to have a life that he leads in a way that makes him happy and gives him a sense of community with connections and responsibilities. He has an inquisitive mind and a preference for doing things outside of the box, so there has to be a world out there where he will fit in and be appreciated for all the wonderful aspects that make him who he is. At least his Mom can certainly hope so.
Sure, they're baby steps, they're always baby steps. But the baby steps are truly the cutest steps to take and that's okay. My big boy is growing up really fast, he pushes his development in surges rather than stages, the rest of the family just has to be standing by ready to react and not miss it. For now, Bradley's desire to initiate a shower like a big boy in a big boy type shower is just a really cool little milestone for him. Does that mean he's giving up baths? Probably not any time soon, a bath is just one, big, not-so muddy puddle that he loves as much as his Beloved Peppa Pig. Too cool to pass up.
Exciting little moments in our house! Bradley is the coolest kid and his days of discovery are worth all the work and worry!
Winding down Day 11 in the Blog Challenge for Awareness and Acceptance for Bradley and all his friends out there with Down syndrome too!
Tuesday, October 10, 2017
Stressful Signing Day!
October 10, 2017
Today was the last signing day for the Club volleyball season for our house. Thank God! If I didn't love my girls as much as I do I keep saying I wouldn't go through all this. But turns out I do love them very much, and so we spend a great deal of time jumping through hoops and trying to make this part of our world have some semblance of order.
Last year, we hobbled into a Club Season, mostly on a what if, and a how about we try sort of mentality. Let's face it, that was the best we could do at the time, there was no pre-planning or thinking through all the options of these places, it was merely try out somewhere because we knew our daughter wasn't going to make the high school volleyball team if she didn't play Club. She was literally told this by the freshman coach. Back pedaling later to say it was highly encouraged. Yeah whatever... She didn't sign for his over-priced Club, she signed at another one that offered a Developmental program for her sister. Well, turns out they lacked enough coaching so that without having to try out, Sydney ended up an a Club team. Score one for Sydney and shield us from the rigors of the stressful tryout weekends.
This year, we had to go through it with Madison and we tried to choose places where we thought she would have a good fit, and we paid attention to the kind of connection that the coaches were trying to make with her. We want her to have a competitive year with a Coach that sees her potential with the desire to want to help her bring it out, all we want for each girl. We want them at the same place because we have no desire to run from one end of the earth to another. We limited our choices to places where coaches were willing to let them both be at the clinics before tryouts, and she went to tryouts at the places where coaches knew her face if not her name. Turns out they all knew her name, so that was a nice perk. So we took a deep breath and chose a Club based on how much they wanted both of them. When the Coach we ended up going with had asked her if she might want to be his starting Outside Hitter, she told him: "Yes, but it depends on what works best for my sister too, we want to be at the same Club." Good girl, taking care of her sister, I love it.
After we signed, we pushed it back into the recesses for a good month until the buildup started for Sydney's age group. And though we knew where we needed Sydney to play, we also knew that she really wanted a 1's team, she also wants to be more competitive. And even though we know her skill level, and we've been told lots of positives about her skills; when it comes down to it, there are still lots of politics and other factors that play into these decisions. Turns out on this particular round, Sydney was an integral part of the puzzle for the 1's team that they wanted. She was quite excited. And Eric and I were happy for her. There is nothing that matches the look of joy that borders on sparkling with excited tears that you get to see in the eyes of your daughters. In August, we got it with Madison and a bit with Sydney when Madison chose the Club Sydney wanted...yes, they actually agreed on something. But then we really saw it in Sydney on Saturday afternoon. There were three definite phone calls to be made twenty minutes after the tryout...Sydney was one of them. Talk about an Ego boost, that made her very happy too.
But then the wait began. Would any of her teammates from the year before choose the same team? Would one of the younger girls with an excellent skill level possibly get pulled up to potentially get offered for Sydney's team? When she did, would she choose to stay with Sydney or chase other equally excellent opportunities? Would there be enough for a team...and what would happen if there weren't?
We were a little bummed to hear that two of the girls she played with had chosen other Clubs, one getting the chance to play an age group up - talk about a boost and so exciting. We learned Sunday morning that one of the players from last year was joining Sydney's team. I actually "Yeahed" and hugged her mom. Later that night, I would try to be unbiased as I traded text messages with the younger player's mom. Trying to give information without sugar, but at the last letting her know that we would love for the girls to play together almost as much as Sydney wanted to play again with her daughter too. One of their deciding factors was that their daughter wanted to play with Sydney at least one more year.
Great joy in our house! Great humbling joy. To know you are doing something right as you shape your kid and she takes the reins to become this incredible little person that touches people like that, that is humbling and so wonderful. We hugged our former teammates at the signing tonight, the girls chattering like excited, little birds. Happy to be on the same team, and happy that they had the perfect number to have a team. We all headed home and not too long later, we got a text message with a picture of their other teammate at their Club, signing to join their team. Despite the opportunity to play on an older team, their teammate chose to play with these girls for at least this year...dare we hope for more? How very exciting!
So these young girls are chasing this desire to be competitive and strong as a team and they are starting where it truly counts, with the heart of it all. They held each other together through some rough times last year, and they all grew, on and off the court. Just when they were getting really close the season ended, and now they are back together again!
These are the families that provided such a support system for us, and us for them. Eric and I are thrilled to have the chance to spend the next nine months watching Volleyball with these families, and having a front row seat on where ever and how far these little ladies can go. Win or lose, there are some great times ahead and we couldn't be happier for Sydney.
As for Madison, we hear rumor that she will also be playing with at least two or three of her teammates, but we weren't able to go to the signing day for her (she had class) so we aren't quite sure about her team until it gets closer to the start of Season. You can imagine how excited she is, it's been too long without playing so she is chomping at the bit to get going again.
As for Bradley, the coaches at this new Club are starting to recognize him, give him high fives and getting to know him. There is a lot of space in this facility, so there is a lot of area where we can safely roam and satisfy curiosity, all while mom and/or dad can still pretty much enjoy watching practices. And when he's tired, he can camp in his stroller, or he can choose to sink into one of the comfy couches that overlook the practice courts. Since we could be there for practices for two to four hours, this is key! One day at a time; one step after the other, but still a little excited and ready to watch the girls get to playing! :-). I am hopeful that Bradley will start to take more of an interest in watching this year, but we will get that when we get it...that's totally on his timetable, not ours.
Just an everyday family; trying to juggle life in a way that allows us to live, breathe, and love all the best parts of our lives. Sydney has a team this year that embodies all the good parts of why we wanted the girls to play on a team. I think that we got very lucky! Even luckier will be if we get that with Madison's team as well. Hoping for the best for sure!
Today was the last signing day for the Club volleyball season for our house. Thank God! If I didn't love my girls as much as I do I keep saying I wouldn't go through all this. But turns out I do love them very much, and so we spend a great deal of time jumping through hoops and trying to make this part of our world have some semblance of order.
Last year, we hobbled into a Club Season, mostly on a what if, and a how about we try sort of mentality. Let's face it, that was the best we could do at the time, there was no pre-planning or thinking through all the options of these places, it was merely try out somewhere because we knew our daughter wasn't going to make the high school volleyball team if she didn't play Club. She was literally told this by the freshman coach. Back pedaling later to say it was highly encouraged. Yeah whatever... She didn't sign for his over-priced Club, she signed at another one that offered a Developmental program for her sister. Well, turns out they lacked enough coaching so that without having to try out, Sydney ended up an a Club team. Score one for Sydney and shield us from the rigors of the stressful tryout weekends.
This year, we had to go through it with Madison and we tried to choose places where we thought she would have a good fit, and we paid attention to the kind of connection that the coaches were trying to make with her. We want her to have a competitive year with a Coach that sees her potential with the desire to want to help her bring it out, all we want for each girl. We want them at the same place because we have no desire to run from one end of the earth to another. We limited our choices to places where coaches were willing to let them both be at the clinics before tryouts, and she went to tryouts at the places where coaches knew her face if not her name. Turns out they all knew her name, so that was a nice perk. So we took a deep breath and chose a Club based on how much they wanted both of them. When the Coach we ended up going with had asked her if she might want to be his starting Outside Hitter, she told him: "Yes, but it depends on what works best for my sister too, we want to be at the same Club." Good girl, taking care of her sister, I love it.
After we signed, we pushed it back into the recesses for a good month until the buildup started for Sydney's age group. And though we knew where we needed Sydney to play, we also knew that she really wanted a 1's team, she also wants to be more competitive. And even though we know her skill level, and we've been told lots of positives about her skills; when it comes down to it, there are still lots of politics and other factors that play into these decisions. Turns out on this particular round, Sydney was an integral part of the puzzle for the 1's team that they wanted. She was quite excited. And Eric and I were happy for her. There is nothing that matches the look of joy that borders on sparkling with excited tears that you get to see in the eyes of your daughters. In August, we got it with Madison and a bit with Sydney when Madison chose the Club Sydney wanted...yes, they actually agreed on something. But then we really saw it in Sydney on Saturday afternoon. There were three definite phone calls to be made twenty minutes after the tryout...Sydney was one of them. Talk about an Ego boost, that made her very happy too.
But then the wait began. Would any of her teammates from the year before choose the same team? Would one of the younger girls with an excellent skill level possibly get pulled up to potentially get offered for Sydney's team? When she did, would she choose to stay with Sydney or chase other equally excellent opportunities? Would there be enough for a team...and what would happen if there weren't?
We were a little bummed to hear that two of the girls she played with had chosen other Clubs, one getting the chance to play an age group up - talk about a boost and so exciting. We learned Sunday morning that one of the players from last year was joining Sydney's team. I actually "Yeahed" and hugged her mom. Later that night, I would try to be unbiased as I traded text messages with the younger player's mom. Trying to give information without sugar, but at the last letting her know that we would love for the girls to play together almost as much as Sydney wanted to play again with her daughter too. One of their deciding factors was that their daughter wanted to play with Sydney at least one more year.
Great joy in our house! Great humbling joy. To know you are doing something right as you shape your kid and she takes the reins to become this incredible little person that touches people like that, that is humbling and so wonderful. We hugged our former teammates at the signing tonight, the girls chattering like excited, little birds. Happy to be on the same team, and happy that they had the perfect number to have a team. We all headed home and not too long later, we got a text message with a picture of their other teammate at their Club, signing to join their team. Despite the opportunity to play on an older team, their teammate chose to play with these girls for at least this year...dare we hope for more? How very exciting!
So these young girls are chasing this desire to be competitive and strong as a team and they are starting where it truly counts, with the heart of it all. They held each other together through some rough times last year, and they all grew, on and off the court. Just when they were getting really close the season ended, and now they are back together again!
These are the families that provided such a support system for us, and us for them. Eric and I are thrilled to have the chance to spend the next nine months watching Volleyball with these families, and having a front row seat on where ever and how far these little ladies can go. Win or lose, there are some great times ahead and we couldn't be happier for Sydney.
As for Madison, we hear rumor that she will also be playing with at least two or three of her teammates, but we weren't able to go to the signing day for her (she had class) so we aren't quite sure about her team until it gets closer to the start of Season. You can imagine how excited she is, it's been too long without playing so she is chomping at the bit to get going again.
As for Bradley, the coaches at this new Club are starting to recognize him, give him high fives and getting to know him. There is a lot of space in this facility, so there is a lot of area where we can safely roam and satisfy curiosity, all while mom and/or dad can still pretty much enjoy watching practices. And when he's tired, he can camp in his stroller, or he can choose to sink into one of the comfy couches that overlook the practice courts. Since we could be there for practices for two to four hours, this is key! One day at a time; one step after the other, but still a little excited and ready to watch the girls get to playing! :-). I am hopeful that Bradley will start to take more of an interest in watching this year, but we will get that when we get it...that's totally on his timetable, not ours.
Just an everyday family; trying to juggle life in a way that allows us to live, breathe, and love all the best parts of our lives. Sydney has a team this year that embodies all the good parts of why we wanted the girls to play on a team. I think that we got very lucky! Even luckier will be if we get that with Madison's team as well. Hoping for the best for sure!
Monday, October 9, 2017
Happy Columbus Day!
October 9, 2017
One of my most favorite days of the year... Columbus Day. No expectations but one: a day for Eric to be off work while the kids are in school. Sounds mean doesn't it? The kids don't get a break but the parents do. Actually, it sounds like a small slice of Heaven. Bradley is my job; in fact, the government encourages parents like me to maintain Bradley's many needs rather than paying someone else...so they pay me. Considering I can't work outside the home in the available hours he isn't with me, I'm not one of the parents who complain. Way too many others do...I just don't get it.
Anyway, on a day like today, I see this as a sweet gift. He takes me to breakfast, and it's actually a date. Maybe breakfast isn't really romantic, but after three kids...we'll take what we can get. We then did a little shopping, looking for Peppa Pig of all things. Bradley had a tough time going into his Blending classroom last week, so today we went in search of small Peppa Pig figures that staff can use to encourage Bradley to comply with instructions like: going into and out of the blending class, and to work while in there. When he did make it in the time before the time before, he wanted to only play with an Ice Cream Stand toy there. Hopefully, tomorrow Peppa Pig will be along to assist him transitioning. We'll see.
From there it was back home for a coveted, long, and restoring nap. No I get it, we're party animals that are hard to be kept up with. But it is worth the effort. Granted we slept till the alarm said to go get Bradley, but it was still a great morning!
After picking up Bradley, we continued the decadence and took him to lunch. We sat him in a corner of a booth, next to Dad and the little stationary music selector machine at Johnny Rockets. He managed to sit in the booth until just before the food arrived. He started to try to roam at this point. From standing, to trying to climb over Dad, to climbing on the table...at this point we went ahead and parked him in a high chair and he proceeded to demolish a hot dog, including half the bun and a good smattering of fries. As meals go, it was a huge success! We picked up Sydney from School and Madison from the library. My sophomore chose friends at the library rather than hang out with her old, boring parents. I'd laugh, but until lunch, the highlight of the day was the nap. But with us boring, old folks there was milkshake potential. Haha, her loss!
Now, Eric has Madison at Volleyball class at the College, and Bradley and I have Sydney at her 8th day in a row of Volleyball, today at the Club the girls will play for this Season. It'll be ten before I get to see my Honey and my oldest volleyball player. Having had a nap, I should be awake to greet them. Otherwise, since most Monday's have been like this, I don't always stay awake that late. Columbus Day has certainly become High on my list of the best days of the year!!!
I love catching time with my guy, I love the reminder of why I knew he was the One, I love the chance to catch special time with both my guys, and then sitting here tonight watching my little volleyball player go at it, I sure love that too. And in the midst of this clinic, I went and vented her brother, and as soon as I was back, she was on water break but came running over to me, checking her brother was okay. Worried he was having one of his many gagging and retching episodes, and she wasn't with me to help him. I told her he was just fine; the normal care, go have fun!
But I have to tell you, I really loved that! Like her Dad said when I told him: "She's a keeper!"
Fitting for this day...all the great things crammed into fourteen hours, and we're still chugging along.
Fun day Blogging, keeping the Challenge! 31 For 21, Day 9 in the books!!!
One of my most favorite days of the year... Columbus Day. No expectations but one: a day for Eric to be off work while the kids are in school. Sounds mean doesn't it? The kids don't get a break but the parents do. Actually, it sounds like a small slice of Heaven. Bradley is my job; in fact, the government encourages parents like me to maintain Bradley's many needs rather than paying someone else...so they pay me. Considering I can't work outside the home in the available hours he isn't with me, I'm not one of the parents who complain. Way too many others do...I just don't get it.
Anyway, on a day like today, I see this as a sweet gift. He takes me to breakfast, and it's actually a date. Maybe breakfast isn't really romantic, but after three kids...we'll take what we can get. We then did a little shopping, looking for Peppa Pig of all things. Bradley had a tough time going into his Blending classroom last week, so today we went in search of small Peppa Pig figures that staff can use to encourage Bradley to comply with instructions like: going into and out of the blending class, and to work while in there. When he did make it in the time before the time before, he wanted to only play with an Ice Cream Stand toy there. Hopefully, tomorrow Peppa Pig will be along to assist him transitioning. We'll see.
From there it was back home for a coveted, long, and restoring nap. No I get it, we're party animals that are hard to be kept up with. But it is worth the effort. Granted we slept till the alarm said to go get Bradley, but it was still a great morning!
After picking up Bradley, we continued the decadence and took him to lunch. We sat him in a corner of a booth, next to Dad and the little stationary music selector machine at Johnny Rockets. He managed to sit in the booth until just before the food arrived. He started to try to roam at this point. From standing, to trying to climb over Dad, to climbing on the table...at this point we went ahead and parked him in a high chair and he proceeded to demolish a hot dog, including half the bun and a good smattering of fries. As meals go, it was a huge success! We picked up Sydney from School and Madison from the library. My sophomore chose friends at the library rather than hang out with her old, boring parents. I'd laugh, but until lunch, the highlight of the day was the nap. But with us boring, old folks there was milkshake potential. Haha, her loss!
Now, Eric has Madison at Volleyball class at the College, and Bradley and I have Sydney at her 8th day in a row of Volleyball, today at the Club the girls will play for this Season. It'll be ten before I get to see my Honey and my oldest volleyball player. Having had a nap, I should be awake to greet them. Otherwise, since most Monday's have been like this, I don't always stay awake that late. Columbus Day has certainly become High on my list of the best days of the year!!!
I love catching time with my guy, I love the reminder of why I knew he was the One, I love the chance to catch special time with both my guys, and then sitting here tonight watching my little volleyball player go at it, I sure love that too. And in the midst of this clinic, I went and vented her brother, and as soon as I was back, she was on water break but came running over to me, checking her brother was okay. Worried he was having one of his many gagging and retching episodes, and she wasn't with me to help him. I told her he was just fine; the normal care, go have fun!
But I have to tell you, I really loved that! Like her Dad said when I told him: "She's a keeper!"
Fitting for this day...all the great things crammed into fourteen hours, and we're still chugging along.
Fun day Blogging, keeping the Challenge! 31 For 21, Day 9 in the books!!!
Sunday, October 8, 2017
Kiddos Driving Us Crazy!
October 8, 2017
Ah Acceptance. What a fickle beast you truly are. Seems like I pay more attention to this in October then any other time of the year, and by that I mean, I look at it from every perspective...Bradley's, Madison's, and Sydney's. I'm always paying attention and available to help navigate the ins and outs of this insane teenage world the girls are trying to grow up in, but they're pretty good at navigating most land mines and it takes something significant to draw me in and need me to advise them.
Madison is the girl next door, the craziness that is Madison is not something that is ever debated...she is either flat out accepted for who she is or just left alone by others. She has enough of her own self-worth that she will put a voice behind strong words of self defense should someone try to mock her or tear her down. She may be a bit of a follower when it comes to her best friend, where she goes Madison mostly goes...but she also has a very strong sense of right and wrong and doesn't choose the shady path. She may push the limits and boundaries of the rules but she won't run past the limits and hope for the best. As a result, she has been offered and allowed to watch her brother more and more. In the past week, she has had a lot of time with him, and each time she does she proves to me a little more how much she has grown up. She knows his meds and when he gets them, to the extent that while we were in the last days of prepping for Volleyball tryouts for Sydney for Club season, I called her to tell her we were headed home. Madison said okay; and let me know that Bradley was in his pajamas and had all of his liquid medicines. She had double checked the sheet of paper I keep by his medicines to make sure he got everything. When I realized I hadn't adjusted one of his doses, she said okay, got a little more and went in and gave him that too. She then let me know he had fallen asleep and wanted to put him to bed, she was so excited that she had done it all. I was so proud of her; not that she did it all, though that is awesome, just that she was so proud of herself and so happy with herself. Maybe she doesn't always fit in at school, but she fits in with Bradley so well and she just gets him on a level that no one else does. When it comes to the electronics, they are neck and neck on who is more addicted and who is more connected to the hip with them - they love their movies! After spending so much time with Bradley the last few days, with Eric and I this afternoon, we had a hard time keeping him with us so that we could play with him and she could finish her homework, he wanted to be in her room with her, the whole time.
When that didn't work out because Madison kept kicking him out, he tried Sydney. But she was pretty tired from Volleyball non-stop the last week, so he ended up on the couch snuggling with me a bit before venturing out again to roam the house. Despite the day, Bradley and Sydney are bosom buddies in their own ways. He drives her crazy as much as she is crazy about him. He wraps himself around her like a Koala Bear and giggles nonstop. When she walks him into school or is with me for pick up, Bradley forgets that mom is tagging along because she is the greatest thing since sliced bread in his eyes. He accepts her for the simple fact that she is here. She can do no wrong and any fight they have he forgives her before she even realizes she has hurt his feelings or made him mad. She will get frustrated with him for his need to clear the clutter off her desk or unfold everything she just folded, but then he realizes he has made her upset and his arms come up and he's sorry and hugging her, laying his head on her shoulder and showing remorse. If only he would remember he is remorseful and not do it again, but there are just some things that take longer to get through to him and these are those things. But she accepts that in him, she may not be happy about it all the time, but she accepts that it is just who he is and loves him anyway.
Bradley accepts that Madison is Madison and Sydney is Sydney. And the girls Accept that Bradley is Bradley, the ups and downs included and they know he is who he is and that he is trying to grow up just as much as they are. Sadly, in all this acceptance... there is an Awareness too. An Awareness for me that my girls may not ever just Accept each other for who they are. They are so alike it drives them crazy and yet to different they might as well live on separate planets. It is baffling to us as their parents and for the life of me, I have no clue whether they are going to be friends someday or not. We hope so, because we also Accept the fact that we might not always be here for Bradley and when that happens he will need both of his sisters to help him through the rest of his life. I can only hope that they will work together to be there for him and somehow; some way, they will decide to be friends as well. Until then... there are always fireworks in our house! But then fireworks are fun right??? UGH!!
Signing off with Day 8. Acceptance and Awareness...Blogging 31 for 21! :-).
Ah Acceptance. What a fickle beast you truly are. Seems like I pay more attention to this in October then any other time of the year, and by that I mean, I look at it from every perspective...Bradley's, Madison's, and Sydney's. I'm always paying attention and available to help navigate the ins and outs of this insane teenage world the girls are trying to grow up in, but they're pretty good at navigating most land mines and it takes something significant to draw me in and need me to advise them.
Madison is the girl next door, the craziness that is Madison is not something that is ever debated...she is either flat out accepted for who she is or just left alone by others. She has enough of her own self-worth that she will put a voice behind strong words of self defense should someone try to mock her or tear her down. She may be a bit of a follower when it comes to her best friend, where she goes Madison mostly goes...but she also has a very strong sense of right and wrong and doesn't choose the shady path. She may push the limits and boundaries of the rules but she won't run past the limits and hope for the best. As a result, she has been offered and allowed to watch her brother more and more. In the past week, she has had a lot of time with him, and each time she does she proves to me a little more how much she has grown up. She knows his meds and when he gets them, to the extent that while we were in the last days of prepping for Volleyball tryouts for Sydney for Club season, I called her to tell her we were headed home. Madison said okay; and let me know that Bradley was in his pajamas and had all of his liquid medicines. She had double checked the sheet of paper I keep by his medicines to make sure he got everything. When I realized I hadn't adjusted one of his doses, she said okay, got a little more and went in and gave him that too. She then let me know he had fallen asleep and wanted to put him to bed, she was so excited that she had done it all. I was so proud of her; not that she did it all, though that is awesome, just that she was so proud of herself and so happy with herself. Maybe she doesn't always fit in at school, but she fits in with Bradley so well and she just gets him on a level that no one else does. When it comes to the electronics, they are neck and neck on who is more addicted and who is more connected to the hip with them - they love their movies! After spending so much time with Bradley the last few days, with Eric and I this afternoon, we had a hard time keeping him with us so that we could play with him and she could finish her homework, he wanted to be in her room with her, the whole time.
When that didn't work out because Madison kept kicking him out, he tried Sydney. But she was pretty tired from Volleyball non-stop the last week, so he ended up on the couch snuggling with me a bit before venturing out again to roam the house. Despite the day, Bradley and Sydney are bosom buddies in their own ways. He drives her crazy as much as she is crazy about him. He wraps himself around her like a Koala Bear and giggles nonstop. When she walks him into school or is with me for pick up, Bradley forgets that mom is tagging along because she is the greatest thing since sliced bread in his eyes. He accepts her for the simple fact that she is here. She can do no wrong and any fight they have he forgives her before she even realizes she has hurt his feelings or made him mad. She will get frustrated with him for his need to clear the clutter off her desk or unfold everything she just folded, but then he realizes he has made her upset and his arms come up and he's sorry and hugging her, laying his head on her shoulder and showing remorse. If only he would remember he is remorseful and not do it again, but there are just some things that take longer to get through to him and these are those things. But she accepts that in him, she may not be happy about it all the time, but she accepts that it is just who he is and loves him anyway.
Bradley accepts that Madison is Madison and Sydney is Sydney. And the girls Accept that Bradley is Bradley, the ups and downs included and they know he is who he is and that he is trying to grow up just as much as they are. Sadly, in all this acceptance... there is an Awareness too. An Awareness for me that my girls may not ever just Accept each other for who they are. They are so alike it drives them crazy and yet to different they might as well live on separate planets. It is baffling to us as their parents and for the life of me, I have no clue whether they are going to be friends someday or not. We hope so, because we also Accept the fact that we might not always be here for Bradley and when that happens he will need both of his sisters to help him through the rest of his life. I can only hope that they will work together to be there for him and somehow; some way, they will decide to be friends as well. Until then... there are always fireworks in our house! But then fireworks are fun right??? UGH!!
Signing off with Day 8. Acceptance and Awareness...Blogging 31 for 21! :-).
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