It's amazing what your body gets used too. We got used to not sleeping at night, if Bradley wasn't up one of the girls were, or that dastardly pump was letting us hear something. It got so bad that the idea of a coffee IV was something I had begun to consider asking my doctor about. Well, not really...but I sure was putting it away - I can feel my Cardiologist cringing and shaking his head as we speak. We've recently switched away from the night time drips to Bolus feeds with Bradley. What does that mean? I'm glad you asked. Rather than keep Bradley hooked up all night, we are giving him feeds by: syringe, gravity, or bigger amounts over a shorter amount of time by the pump. First result, he sleeps better at night! Hallelujah, enough said! Well.....hold that thought and keep coming back to it - we're going to need it.
It's all about tolerance and titration. With his Feeding therapist, Bradley was quite the show-off, took in four ounces plus some by mouth and proceeded to dump it all later in a most painful fashion. He did however, sleep through the night. Then I backed off to just four ounces...still dumping...back to three ounces...still dumps it....grrr.... Fine, three ounces with his pump for an hour...I got nothing better to do than watch "The Wiggles" and keep him contained on my lap. By syringe I can do 2 ounces at a time - gravity: shmavity! This is an open syringe that let's the Pediasure flow into his extension and button based on how high or low I hold it up - so slow or fast, but it sure doesn't take all that long. I guess we'll go back to that when he can handle the slow syringe. The Dietitian told me he has to drink two and a half cans of Pediasure a day plus his regular amount of food. Got it! Watching intake like a hawk! If he doesn't get two and a half cans he needs the remainder in his through his tube...got it! Carefully trying to decide - will he finish that cup of milk or will he need a tube feeding? Extension on just in case - ah, tonight he finished it....try to take of the extension - oh look very awake! For hours.... Tonight, leave it on...oh look...bleeding from the button site because it pulled.... Just shoot me! But he's sleeping through the night! Yes! No...sort of, but mom not so much.
Deeper sleep, better sleep....more dreaming, more imagination - such joy, such wonder, so many night terrors! Really? Yep. Crying out in his sleep...crying in his sleep...fighting me in his sleep because he was crying like he was awake but when I laid him on the changing table to vent him...World War III breaks out cause he's still asleep! Who is this kid and how can I make this any better? Therapies during the day? Hah...that's a joke! Bradley was so frustrated, so overwhelmed by his own brain trying to catch up with itself...by all these new therapists coming in that he shut down. Didn't matter if you were his favorite...he checked out when they were here. So we went back to the old fashioned way, where Mom taught him his colors and the signs to go with. And we ditched two therapists, because the results weren't worth it, and though I am nervous about it...we are going to try two new therapists soon. One is supposed to be fluent in sign. My response was, great - cause Mom doesn't know all the color signs and his was, we'll teach him Verbs... Uh, yeah - we could do that too. Great, he'll be able to teach Bradley to say "I am really angry at Mom!" Which is better than the implied message he gives when he is trying to yank my hair out by the root. Ah communication! ;-) Such joy!
Worse, suddenly he only wants pudding...hmmm? Can he give up his Pediasure and eat pudding three or four times a day and actually survive...let alone thrive? Yeah, I didn't think so either. So I had him checked, sore throat on Friday but clear and happy on Monday. Still....no chewing. Luckily, his feeding therapist; who I believe will be sainted before her life is over, gave me the name of a great dentist. Turns out Bradley is trying to get his first molars in on the top, in the very back. The gums are angry and the teeth are just pushing through and may take months to push through because the only thing fast about Bradley's teeth are how quickly he can turn them on you if he can't get your hair. Though this biting thing is happening less and less, my mentioning it here is like requesting it for later today...so well...look out and don't say I didn't warn you.
Bradley was pushing close to 31 pounds when we went to the Peds GI Doc in March...somehow in the last month we've managed to lose a pound and a half. What the Dietitian doesn't know is that he actually was weighing in at 28.8 pounds after our phone call. Worried mom weighed him and the 29.4 I thought he was at had dipped overnight. How does that happen? We're back to two week weight checks to see if he can stay off the night pump at all. So now our day has to include at least two bolus feeds at least one with the machine, an hour each of three ounces, just to make sure that he gets all he needs to get to gain some weight back. He has to get his calories. They can't all come from pudding...well, no you're right...they can't all come from pudding. I am reverting back to his puree days where he would mow through sweet potatoes and cranberry sauce...things like that that are so soft his top back molars don't have to connect with lower back molars - soups, but concentrated because otherwise they are too thin and he can't hold them in his mouth. And since we can't afford any illness right now, he didn't go to watch the girls play Volleyball last night and if the wind doesn't die down - he won't get to go on Saturday either. I feel like he's back in his bubble.
But here's the irony. He can't handle a gravity feed of three ounces but in the middle of the night last night he took almost five ounces by mouth from his straw cup. Hmmm.... It doesn't matter that he and I slept through the night before last right now I feel like he has been up every night for a week. That's how out of practice I am becoming. It could be I'm getting old and just need my sleep too. Either way, I'm hoping he sleeps through tonight so I have a chance to catch up again. The alternative is returning to the nights of not sleeping every night, not sure that I am a fan of that idea at all! :-)
Thursday, April 18, 2013
Sunday, April 7, 2013
Just Wow!
We spent the weekend with my Dad, we wanted to let our Madison see her Grandpa for her 11th birthday coming up in but a few hours. I've spent the weekend awash in the flow of nostalgia that has occupied my mind. I have been humbled and have thought longingly of those that I just miss having around me, the ones that make me feel better about me, the ones that accept my flaws and love me anyway. I know that life is going to continue to move people in and out of my life as necessary, but that doesn't ease the moments of farewell...so many of those happen when you don't realize it and no real goodbyes are said, just distance followed by silence with a sad regret that somehow that's just how life happens. There is not one person the same that held my three children on the day they were born except for Eric and I, although Madison comes close, I mean she was there the first time and then held each sibling as they came along on the days they were born. Small club.
Exclusive club actually. Now the four of us: Eric, Madison, Sydney and I are the ones that are here for Bradley. The first day he peed in the potty, we crowded the bathroom and cheered. When he started loving "The Wiggles," the girls danced until he danced and we all stood in a circle around him as he learned to sign "Rock-a-bye Your Bear." And we cheered. Last night, a complete stranger revealed one of those moments you hold your breath for, one you don't know you've been waiting on. We had dinner at the Chili's in Encinitas for Madison's birthday. At the end, Brooke the manager stopped by to ask how we enjoyed our meal. Bradley waved to her, he signed "thank you." Ms. Brooke is a special Ed teacher and in return she started signing back to him. He was out of the high chair by now and between Eric and I, at her signing "are you happy tonight". Bradley jumped to his feet and was signing back to her. He told her he was "happy" he said thank you. His face glowed with delight and joy, someone other than Dad and I knew how to talk to him and understand him. I told her of our difficulty trying to keep up with his number of signs, she told me to come by anytime, I wish we were in San Diego now. I managed not to cry, but barely, it just felt that good - it was that important a moment for Bradley.
We got home this afternoon, after the long drive Bradley was mellow and quiet. His diet changed drastically a month ago, quiet is a step up from the constant crying, the frustrations, and the therapy sessions that have melted into nothing but tears for him. We have struggled long and hard through this past month, though sleeping better at night, Bradley's brain is developing quickly - often faster than he has the ability to handle. Bradley knows the colors: red, yellow, blue, green, purple, orange, black and white and he can sign those first six for you. I've been able to do this with him; last night he rewarded me at the restaurant by pointing to then signing for the red crayon and then blue and orange. He can sign "happy" and he is closer to telling me he doesn't like or want something without throwing cups or food every time...still does, but 2 out of 10 times we get lucky. He is Mr. Amazing with his IPad. He can drag puzzle pieces and he can follow directions better. Bradley will note the difference between cow, sheep and pig...in his favorite book he will make the animal perform and then turn off the light and hit the arrow to leave the screen. Oh and watch what you do with your hands, he wants to copy everything you do.
Through all this, his tummy is fighting him, his health has been a myriad of the unknown thing that is giving him a hard time...but he is determined to amaze. So when we got home he was quiet, then ate little. So we headed to a bath,he hates them now but likes to tease us with a minimum two second sit on the potty...usual max of five seconds. Until tonight... Tonight I took a gamble and got lucky. Diaper free he suddenly showed signs of action, so I popped him on the potty and was excited to see a few drops of pee...followed by a suspicious odor. Bradley did two things at once...he pooped for the first time in the potty ever, and for the first time in a month he didn't cry during the process. Sydney was walking by, so I hailed her down to go find Daddy, Bradley gave her a quick peek, so she took off like a shot...he came running, Madison came running, and Sydney was of course back. Yet again, we four camped out around Bradley and we cheered, we gave high fives and knuckles, a few times, told him how amazing he was. I signed to him how "good" and he smiled huge and tried to sign it back. The he rewarded us by peeing some more...and there was great rejoicing in our bathroom again. :-). He was so pleased with himself he showed off on his IPad as he settled for bed. He likes to remind us what he knows how to do. :-). So Bradley had an awesome day. Tomorrow, he'll try to sign Happy Birthday to Madison, he'll get happy out, the rest is meant for surprising I think...Bradley will let us know. Wednesday the girls will start volleyball again and he'll be the one with mom, both of us cheering for our two favorite volleyball stars, and Bradley is an excellent fan. He claps then signs "Go, Madison" and "Go, Sydney" and he claps some more. It would be hard to top tonight if my beautiful daughter weren't turning 11 tomorrow. I guess Bradley just set up this week to be awesome!
Exclusive club actually. Now the four of us: Eric, Madison, Sydney and I are the ones that are here for Bradley. The first day he peed in the potty, we crowded the bathroom and cheered. When he started loving "The Wiggles," the girls danced until he danced and we all stood in a circle around him as he learned to sign "Rock-a-bye Your Bear." And we cheered. Last night, a complete stranger revealed one of those moments you hold your breath for, one you don't know you've been waiting on. We had dinner at the Chili's in Encinitas for Madison's birthday. At the end, Brooke the manager stopped by to ask how we enjoyed our meal. Bradley waved to her, he signed "thank you." Ms. Brooke is a special Ed teacher and in return she started signing back to him. He was out of the high chair by now and between Eric and I, at her signing "are you happy tonight". Bradley jumped to his feet and was signing back to her. He told her he was "happy" he said thank you. His face glowed with delight and joy, someone other than Dad and I knew how to talk to him and understand him. I told her of our difficulty trying to keep up with his number of signs, she told me to come by anytime, I wish we were in San Diego now. I managed not to cry, but barely, it just felt that good - it was that important a moment for Bradley.
We got home this afternoon, after the long drive Bradley was mellow and quiet. His diet changed drastically a month ago, quiet is a step up from the constant crying, the frustrations, and the therapy sessions that have melted into nothing but tears for him. We have struggled long and hard through this past month, though sleeping better at night, Bradley's brain is developing quickly - often faster than he has the ability to handle. Bradley knows the colors: red, yellow, blue, green, purple, orange, black and white and he can sign those first six for you. I've been able to do this with him; last night he rewarded me at the restaurant by pointing to then signing for the red crayon and then blue and orange. He can sign "happy" and he is closer to telling me he doesn't like or want something without throwing cups or food every time...still does, but 2 out of 10 times we get lucky. He is Mr. Amazing with his IPad. He can drag puzzle pieces and he can follow directions better. Bradley will note the difference between cow, sheep and pig...in his favorite book he will make the animal perform and then turn off the light and hit the arrow to leave the screen. Oh and watch what you do with your hands, he wants to copy everything you do.
Through all this, his tummy is fighting him, his health has been a myriad of the unknown thing that is giving him a hard time...but he is determined to amaze. So when we got home he was quiet, then ate little. So we headed to a bath,he hates them now but likes to tease us with a minimum two second sit on the potty...usual max of five seconds. Until tonight... Tonight I took a gamble and got lucky. Diaper free he suddenly showed signs of action, so I popped him on the potty and was excited to see a few drops of pee...followed by a suspicious odor. Bradley did two things at once...he pooped for the first time in the potty ever, and for the first time in a month he didn't cry during the process. Sydney was walking by, so I hailed her down to go find Daddy, Bradley gave her a quick peek, so she took off like a shot...he came running, Madison came running, and Sydney was of course back. Yet again, we four camped out around Bradley and we cheered, we gave high fives and knuckles, a few times, told him how amazing he was. I signed to him how "good" and he smiled huge and tried to sign it back. The he rewarded us by peeing some more...and there was great rejoicing in our bathroom again. :-). He was so pleased with himself he showed off on his IPad as he settled for bed. He likes to remind us what he knows how to do. :-). So Bradley had an awesome day. Tomorrow, he'll try to sign Happy Birthday to Madison, he'll get happy out, the rest is meant for surprising I think...Bradley will let us know. Wednesday the girls will start volleyball again and he'll be the one with mom, both of us cheering for our two favorite volleyball stars, and Bradley is an excellent fan. He claps then signs "Go, Madison" and "Go, Sydney" and he claps some more. It would be hard to top tonight if my beautiful daughter weren't turning 11 tomorrow. I guess Bradley just set up this week to be awesome!
Thursday, April 4, 2013
Butterflies
The girls are on spring break right now, two weeks of it in fact. Two weeks of waking to Bradley in the am, not an alarm clock. It's a beautiful idea, too bad Bradley thinks the mornings are so quiet that he should be up at ten minutes to six most mornings. Makes me almost long for the school days when I could occasionally sleep until 6:30. But here nor there, we were sent home the class butterfly project. Sydney was beside herself with excitement carefully watching each chrysalis and lamenting the apparent loss of one which was resting on the floor of the cage. But I told her to take heart, the instructions indicated the possibility that even that one might produce a butterfly.
Turns out the instructions were right. Our little friend that had fallen down would reveal a butterfly. The first one had obviously ate the most and wrapped himself up and came out with a set of beautiful, large wings. The next one was a bit smaller, but barely. The third one, smaller with slightly asymmetrical wings...and our fourth one...well, this one had the smallest set of wings and they were bent almost sideways and took quite some time to straighten up just slightly. It took him longer to dry or even move at all so that we thought the little thing was in fact dead. What a way to ruin the start of Easter morning. Not only had all four emerged while Sydney was sleeping, but after sitting next to the counter and watching them throughout the first days, now one was dead? She took it extremely hard, but maybe understandable. You see, Dad lost a beloved aunt on Good Friday and though our girls never had the joy of meeting her, our girls are very loving and felt his pain as their own, trying to take some of his burden onto themselves.
When we returned home from church, we were all thrilled and hugely surprised to see the last butterfly flapping small, beautiful, albeit folded wings. It was alive! Sydney was thrilled but very worried about his wings, would he be able to fly? I didn't know. All throughout the day I found myself staring at the butterflies, watching with concern how well our fourth butterfly was fairing. Resilient, brave...I gave this butterfly these attributes, and I spoke words of encouragement to him. I told this butterfly and I told Sydney that if he couldn't fly he could spend his life with us, that we'd make sure he had a safe home for his two to four week life cycle.
Sure enough, he cannot fly. When given the opportunity to try he fluttered near the ground and then sat on the concrete. Rescuing him to put him safely into the net cage after a second attempt I could feel his body trembling in fear...I felt his fear and was stunned that he had any. And I thought shame on me for being surprised that even a butterfly could experience the basest of emotion, fear. So we brought everything inside, I gave him fresh sugared water and a brand new orange he doesn't have to share with anyone and hoped that he'd forgive me for scaring him so badly. We won't try again at freedom, but Sydney believes fresh air and warmth outside will make it happy. I felt his wings trembling, who am I to say whether he will feel happy or sad, excitement or joy...but I see a well deep with compassion in Sydney as she cares for this very special butterfly that was given into her care; and I know how that makes me feel.
We have two cats and one very special butterfly with broken wings. The irony is not lost on me. I never thought I was an exceptional person that was given Bradley because of it...I have always known that Bradley was a gift that I was given who makes me more than I was before him because he is exceptional. Because of Bradley, I held my breath and spoke words of encouragement to a butterfly. Because of Bradley, I moved with incredible speed and gentleness to rescue a butterfly once I knew it couldn't fly. Because of Bradley, I see today the kind of compassionate and caring person my daughter is going to be. She would no sooner turn away a broken butterfly then let anyone tell her that her brother is not perfect as he is.
Bradley didn't create a broken butterfly. Bradley opened the eyes and hearts of a family to see beyond the usually accepted, and because we do, we can see a very special butterfly living in a net cage in my kitchen for as long a life as it can have. A coincidence that we were asked to care for the class butterflies...hmmm, maybe. But you know, a coincidence is just God's way of saying Hi.
Turns out the instructions were right. Our little friend that had fallen down would reveal a butterfly. The first one had obviously ate the most and wrapped himself up and came out with a set of beautiful, large wings. The next one was a bit smaller, but barely. The third one, smaller with slightly asymmetrical wings...and our fourth one...well, this one had the smallest set of wings and they were bent almost sideways and took quite some time to straighten up just slightly. It took him longer to dry or even move at all so that we thought the little thing was in fact dead. What a way to ruin the start of Easter morning. Not only had all four emerged while Sydney was sleeping, but after sitting next to the counter and watching them throughout the first days, now one was dead? She took it extremely hard, but maybe understandable. You see, Dad lost a beloved aunt on Good Friday and though our girls never had the joy of meeting her, our girls are very loving and felt his pain as their own, trying to take some of his burden onto themselves.
When we returned home from church, we were all thrilled and hugely surprised to see the last butterfly flapping small, beautiful, albeit folded wings. It was alive! Sydney was thrilled but very worried about his wings, would he be able to fly? I didn't know. All throughout the day I found myself staring at the butterflies, watching with concern how well our fourth butterfly was fairing. Resilient, brave...I gave this butterfly these attributes, and I spoke words of encouragement to him. I told this butterfly and I told Sydney that if he couldn't fly he could spend his life with us, that we'd make sure he had a safe home for his two to four week life cycle.
Sure enough, he cannot fly. When given the opportunity to try he fluttered near the ground and then sat on the concrete. Rescuing him to put him safely into the net cage after a second attempt I could feel his body trembling in fear...I felt his fear and was stunned that he had any. And I thought shame on me for being surprised that even a butterfly could experience the basest of emotion, fear. So we brought everything inside, I gave him fresh sugared water and a brand new orange he doesn't have to share with anyone and hoped that he'd forgive me for scaring him so badly. We won't try again at freedom, but Sydney believes fresh air and warmth outside will make it happy. I felt his wings trembling, who am I to say whether he will feel happy or sad, excitement or joy...but I see a well deep with compassion in Sydney as she cares for this very special butterfly that was given into her care; and I know how that makes me feel.
We have two cats and one very special butterfly with broken wings. The irony is not lost on me. I never thought I was an exceptional person that was given Bradley because of it...I have always known that Bradley was a gift that I was given who makes me more than I was before him because he is exceptional. Because of Bradley, I held my breath and spoke words of encouragement to a butterfly. Because of Bradley, I moved with incredible speed and gentleness to rescue a butterfly once I knew it couldn't fly. Because of Bradley, I see today the kind of compassionate and caring person my daughter is going to be. She would no sooner turn away a broken butterfly then let anyone tell her that her brother is not perfect as he is.
Bradley didn't create a broken butterfly. Bradley opened the eyes and hearts of a family to see beyond the usually accepted, and because we do, we can see a very special butterfly living in a net cage in my kitchen for as long a life as it can have. A coincidence that we were asked to care for the class butterflies...hmmm, maybe. But you know, a coincidence is just God's way of saying Hi.
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