December 30, 2012
We'd been walking a thin line between ill and health with Bradley, and we did it for almost two months. It wasn't something we wanted, but something that felt like it was on a slippery slope for us, the harder I tried to get him healthier the more he declined. In November, he had these tonsils that were huge and sported spots, but the ENT that he had didn't worry about them too much. But the swollen tonsils forced Bradley's tongue out more, his feeding seemed to slow, like he wasn't interested in swallowing anything larger than a pureed food. The idea of chewing, less of a thrill than it had been. One rude ENT was more than I could take and I switched his ENT's. To make a long story short it's like this: I can take a rude staff if the doctor is worth it; the moment the doctor is rude to me; I change. My son does not have to mean everything to you all the time, but for the fifteen minutes he is before you, that's when he better mean everything. So we switched to the Pediatric ENT at UCLA, turns out she's the Head of the department, but she's also really nice. The plan was to take Bradley's tonsils, his adenoids...put in ear tubes and do the Brain Stem Assessment to determine once and for all if our son has any sort of hearing loss. This is important for all the obvious reasons, but our boy tends to panic at certain sounds especially with vibration. So don't laugh with him against your shoulder, he can't handle the vibration of your laughter. Oh and at the time he had a little bit of fluid on his right ear. That fluid grew exponentially until his ear drum burst three days later. What ensued from there on out is the stuff of a parent's nightmare. The reaction to really strong antibiotics, the onset of croup and the immune system compromise that led to Hives and Diarrhea to the point we were concerned he was dumping. You see, simple tummy flu with diarrhea is never simple with Bradley; so this reaction just creates the worst possible reactions in his tummy. He dropped a pound and a half in a week, pounds he can't afford to lose, pounds we worked really hard to accumulate on him.
We spent the next few weeks in and out of the hospital, phone calls over the weekend, phone calls to the Peds GI in Santa Barbara, all desperately trying to prevent further weight loss, further illness, a trip to the hospital for IV rehydration... and that croupy cough wouldn't go away and became worse. The week before Christmas, it became deep and wet. The air stopped moving in his lungs and we started around the clock nebulizer treatments; which Bradley hates! My son is incredibly strong already, and my son is a fighter - Thank you God! - but trying to give him a Nebulizer treatment is a workout. A few in the middle of the night on day two he started to sleep halfway through and those were heavenly. Despite our best efforts though, Saturday am he was awake and he seemed to be breathing very shallow. He was gagging and retching, choking on mucus that I could not suction out or successfully vent enough from his tummy to prevent the retching that can lead to the unraveling of the precious Fundoplication that makes it so he can eat. With nothing else to do; Eric took Bradley to the ER and I sat here at the house waiting with the girls. There is nothing like those hours waiting...I took care of my Farm on Facebook, and built my castle...then couldn't do anything more as the hours dragged on, so I wrapped the rest of the kids' Christmas presents, and when Eric sent the text that said "Pneumonia" I packed my bag. At 6 am I called my mom and asked her to come, and I waited while they were trying to transport my son to the hospital and my mom was making her way to us. I didn't see him until 11:20am. They had to attack the pneumonia with antibiotics and we waited and watched as they fought the pneumonia and the dumping as his digestive system fought against the antibiotics.
I stayed Saturday night, and then because he had the time off; Eric stayed Sunday night and Monday night. We knew that if they kept Bradley passed Christmas day I would have to stay till the weekend nights because Eric would have to go into work in the mornings. Eric and Bradley spent Christmas Eve in the hospital and I left them feeling broken. I couldn't figure out how to be with Bradley and the girls at the same time. The hospital only allowed one parent to stay each night, even though Bradley was in a private room. The docs were fantastic, the nurses...really horrible. But, Christmas morning the doc came in and discharged Bradley so we could bring him home. As Christmas miracles go; well this was a pretty big one. When we walked in the door with Bradley his sisters started crying, both of them. I knew Madison would, as she is a weeper and our most emotional. I knew that things had been as tough as I had feared when Sydney wept like she did. Not hysterical, but uncontrolled and from her soul. And my heart broke a little for them; these two kids that were so strong and so flexible about their life - and yet with each of these episodes with Bradley I wonder if their flexibility will be tapped out and one of them will break. For Eric and I - Every breath carries a prayer, please God let this be the last time; let Bradley's body be as strong as his heart and soul from this moment on. Amen.
How did Bradley adjust to being home? He walked over and dove into a present that Santa had left for him. He unwrapped almost all of that one; but after that he was pretty happy to just tear the bows off of his presents and let mom unwrap for him. He was pretty tired after all. Now post Hospital five days, he coughs maybe once a day and the rattle is gone from his breath. He's doing fantastic! Oh and as for that starting of Pre-school in a couple weeks? No, not right now. Bradley will do his Pre-school at home and then in the Spring we'll revisit the idea of going off to join a Pre-school class. For now, we just have to get him healthy, the rest will have to come when it comes.
Sunday, December 30, 2012
Monday, December 10, 2012
The Journey Towards School
We spent the morning with the School District Psychologist. Looking back I can see where she is hailed for being so great, she truly is great. She was engaging with Bradley and she moved him quickly from one little test to the other and didn't give him time to get too far off the path. Sure Bradley discovered the joy of blue plastic coffee cups and wouldn't let them go until she persuaded him to give them up for the white plastic bowls that were so intriguing...yeah, well then he wouldn't give those up either...where does that leave us I wonder? You could see the wheels turning in her head as she moved him through his tasks and made her notes...I couldn't help but wonder what she was writing. Have I done enough? In my head I know where the girls were when they went to school and I know he's not there at all. I mean they went somewhere around 4 years old and the "pre-school" Sydney went to for drop in care in Japan was not actually teaching all that much more than socialization. But socialization is truly important and he hasn't been getting too much of that. He can hold his own with older kids, he rules the roost with his two sisters, but how he'll be with other kids I am not so sure. I have seen him try to pull a baby into his lap because he is purely fascinated, but as for playtime, well - not yet. We've encountered kids at the playground but I've watched the moms turn away and I have watched as the little ones are just too fast for Bradley. At the moment of play initiation, he's not quite ready to play. By the time he figures it out they are already on their way to other tasks and he's left playing with me. Although I rock as a playmate, my higher stature is not conducive to encouraging play with other little people.
Things are set to change in January, and yet they might not. We have been preparing Bradley to start Pre-school with the School District after he turns 3. He turns 3 on January 9th, where on earth did the time go? All along the way the Therapists that have been working with Bradley have been giving warnings to the school to let them know that there might be the possibility that Bradley might not be ready for school out of the home. He is still a bit fragile. Right now it is up to his pediatrician to give the final say, not that he doesn't listen to me, he does - but he is even more cautious than I am. I feel like this decision is in good hands. :-) Anyway, we thought he was going to be good to go, I mean the last few colds he has had he's not gagged or retched, so we haven't had to change his feeds at night, all good signs. And then last week he ruptured his eardrum. Yep, he had a sleepless night and a lot of tears and since he could only tell me he "Hurt" with his signs but wouldn't say where, I chose the high road, I gave him Ibuprofen. He fell out and got a few hours sleep, was a little cranky that morning but not more than a sleepless night should cause and I thought perhaps it was a tooth? Yeah, not the first time I've been wrong. Later that day, my boy is giggling playing with me and I look over and he has stuff coming out of his ear. It is one of those moments of shock, I've never seen this before, where your mind takes a moment to actually think and try to determine if there is in any way a positive reason for this gunk to be coming out of his ear. Considering he does not have any Tubes in his ears the answer is a simple, Nope. The only good thing for the rupture is that the pressure build up is over. He doesn't hurt anymore.
Strong antibiotics and ear drops to help him through this, and his pediatrician is looking at Eric and I going..."School huh? Well, I guess we'll just have to see about that won't we?" So perhaps our little guy will start school in the Spring once all the gunk has passed through the school and the Spring can bring some better days for him to try this school thing. We're not certain as yet, but it's on the table. I think at this point we'll be more surprised if they clear him to go for even two out of five of the days before Spring.
Tomorrow he has even more Assessments for school. It seems like that's all we get to do right now. The school comes in for their Assessments and then his Therapists have been doing their Assessments every time they come. I now dislike the word "Assessment" simply because in our life it has become trite. I have to allow them to assess where he is not and try not to intercede with all the things that he CAN do. Turns out they aren't so interested in what he can do - and I am not naive, I understand why; but the constant focus on what he cannot do is also like having someone sitting on your shoulder with this constant mantra running through your head, "Did you forget he has Down syndrome? Well, we want to remind you that he has Down syndrome. There's stuff he can't do, there's stuff he won't learn." And you can only knock that little devil off your shoulder so many times and beat the snot out of him before the good angel on the other side gets all angry at you. But it took her a bit to notice you were being violent because she's over there marveling at all the stuff he's doing and just how downright cute he is. But eventually, she noticed, and now I have to be good and try to ignore that little demon on my shoulder making my life Hell.
I know that there will be limitations to Bradley's life. Until one of my kid's becomes a Rocket Scientist or a Neurosurgeon, I know it's possible they could do that....but I know my girls can't break into the NFL or Major League Baseball, and though miffed about baseball, I'm okay about it too. But I am not entirely certain that Sydney won't be President someday like she plans, so I have to leave a wide field of options open for my kids. I try to be positive and let Bradley take the path he is meant to take and keep the doors opening for him. He has to clear the obstacles, I can't clear all of them, but if he can clear them, then I have to make sure each door comes open. I don't want to delude any of us on what he can do, but today - I don't know what all he'll be able to do in his future so I don't see the wrong in trying to prepare him for anything, to encourage all of us that he can do great things. Are his great things going to be what you think is great? Perhaps not. Maybe his great things are to simply live a great life with independence and purpose. Not so different from what I want from my own life. Do I want to write the next great American Novel? Undecided, I just like to write. But I have to plug away at what I enjoy so that he knows that he should plug away at what he enjoys...so that my girls know that they need to work and fight and plug away at what they will most enjoy. My approach is not that different between the kids, I expect them to do their best, as long as they do that, I'm pretty happy.
My little boy did his best today and he will try his best tomorrow. If his level is more two year old than almost three, then that's okay too. I can just keep offering the knowledge to him and he can take it as he can, bringing it into his brain for processing and for keeping. In a couple of weeks, we will have his "IEP - Individualized Education Plan" in hand, and for at least three months we won't be talking about this all that much. The mantra can fall off my shoulder with all of my self doubt and give me a break for a few months and Bradley and I can just work on learning whatever comes next in the world of learning that is before us.
I have to be honest though, that little Devil is not going to quit my shoulder, fueled by my own sense of not doing enough, not doing it right, somehow falling short where Bradley needs me most - he just picks a new mantra to whisper in my ear. For some reason though, my little Good angel on the other shoulder ignores the fights that I have with the little snot. She knows that I am doing my Best, and with that knowledge she thinks these fights provide some excellent exercise for me.
Things are set to change in January, and yet they might not. We have been preparing Bradley to start Pre-school with the School District after he turns 3. He turns 3 on January 9th, where on earth did the time go? All along the way the Therapists that have been working with Bradley have been giving warnings to the school to let them know that there might be the possibility that Bradley might not be ready for school out of the home. He is still a bit fragile. Right now it is up to his pediatrician to give the final say, not that he doesn't listen to me, he does - but he is even more cautious than I am. I feel like this decision is in good hands. :-) Anyway, we thought he was going to be good to go, I mean the last few colds he has had he's not gagged or retched, so we haven't had to change his feeds at night, all good signs. And then last week he ruptured his eardrum. Yep, he had a sleepless night and a lot of tears and since he could only tell me he "Hurt" with his signs but wouldn't say where, I chose the high road, I gave him Ibuprofen. He fell out and got a few hours sleep, was a little cranky that morning but not more than a sleepless night should cause and I thought perhaps it was a tooth? Yeah, not the first time I've been wrong. Later that day, my boy is giggling playing with me and I look over and he has stuff coming out of his ear. It is one of those moments of shock, I've never seen this before, where your mind takes a moment to actually think and try to determine if there is in any way a positive reason for this gunk to be coming out of his ear. Considering he does not have any Tubes in his ears the answer is a simple, Nope. The only good thing for the rupture is that the pressure build up is over. He doesn't hurt anymore.
Strong antibiotics and ear drops to help him through this, and his pediatrician is looking at Eric and I going..."School huh? Well, I guess we'll just have to see about that won't we?" So perhaps our little guy will start school in the Spring once all the gunk has passed through the school and the Spring can bring some better days for him to try this school thing. We're not certain as yet, but it's on the table. I think at this point we'll be more surprised if they clear him to go for even two out of five of the days before Spring.
Tomorrow he has even more Assessments for school. It seems like that's all we get to do right now. The school comes in for their Assessments and then his Therapists have been doing their Assessments every time they come. I now dislike the word "Assessment" simply because in our life it has become trite. I have to allow them to assess where he is not and try not to intercede with all the things that he CAN do. Turns out they aren't so interested in what he can do - and I am not naive, I understand why; but the constant focus on what he cannot do is also like having someone sitting on your shoulder with this constant mantra running through your head, "Did you forget he has Down syndrome? Well, we want to remind you that he has Down syndrome. There's stuff he can't do, there's stuff he won't learn." And you can only knock that little devil off your shoulder so many times and beat the snot out of him before the good angel on the other side gets all angry at you. But it took her a bit to notice you were being violent because she's over there marveling at all the stuff he's doing and just how downright cute he is. But eventually, she noticed, and now I have to be good and try to ignore that little demon on my shoulder making my life Hell.
I know that there will be limitations to Bradley's life. Until one of my kid's becomes a Rocket Scientist or a Neurosurgeon, I know it's possible they could do that....but I know my girls can't break into the NFL or Major League Baseball, and though miffed about baseball, I'm okay about it too. But I am not entirely certain that Sydney won't be President someday like she plans, so I have to leave a wide field of options open for my kids. I try to be positive and let Bradley take the path he is meant to take and keep the doors opening for him. He has to clear the obstacles, I can't clear all of them, but if he can clear them, then I have to make sure each door comes open. I don't want to delude any of us on what he can do, but today - I don't know what all he'll be able to do in his future so I don't see the wrong in trying to prepare him for anything, to encourage all of us that he can do great things. Are his great things going to be what you think is great? Perhaps not. Maybe his great things are to simply live a great life with independence and purpose. Not so different from what I want from my own life. Do I want to write the next great American Novel? Undecided, I just like to write. But I have to plug away at what I enjoy so that he knows that he should plug away at what he enjoys...so that my girls know that they need to work and fight and plug away at what they will most enjoy. My approach is not that different between the kids, I expect them to do their best, as long as they do that, I'm pretty happy.
My little boy did his best today and he will try his best tomorrow. If his level is more two year old than almost three, then that's okay too. I can just keep offering the knowledge to him and he can take it as he can, bringing it into his brain for processing and for keeping. In a couple of weeks, we will have his "IEP - Individualized Education Plan" in hand, and for at least three months we won't be talking about this all that much. The mantra can fall off my shoulder with all of my self doubt and give me a break for a few months and Bradley and I can just work on learning whatever comes next in the world of learning that is before us.
I have to be honest though, that little Devil is not going to quit my shoulder, fueled by my own sense of not doing enough, not doing it right, somehow falling short where Bradley needs me most - he just picks a new mantra to whisper in my ear. For some reason though, my little Good angel on the other shoulder ignores the fights that I have with the little snot. She knows that I am doing my Best, and with that knowledge she thinks these fights provide some excellent exercise for me.
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