Hello! How are you?! Us? We're great!
Yeah. Sorry for falling off the face of the earth. When you have relatives tracking you down on Facebook asking if everything is okay because you haven't updated your blog in umpteen months, I think it's time to let everyone know: OUR LIFE IS BORING AND NONEVENTFUL AND WE LOVE IT!
Of course, boring and noneventful for us means no hospital visits for Tater. He's still got the trach and there's a certain stress with that which never goes away, but he's healthy and that's all we've ever asked for. He's also almost 3 and has an attitude that goes with a 16 year-old. Lawdy, lawdy. Help us.
He had a sleep study and vent clinic 2 weeks ago and I got to talk extensively with his new plumonologist. She told me bluntly that she understands the previous reluctance to move forward with Tater but she's not going to let us be in our safe zone forever. She's ready to push him and get him rid of all his extra stuff. Everyone previously on his case saw him at his absolute worse (I guess that's what you call almost dying from RSV?) and she's only seen healthy, strong Tater. She says she thinks we can start weaning him off the vent while he's asleep with eventually getting rid of the trach when he's been sick a couple of times after completely weaning. Scary and exciting at the same time. Now if we could only get Tater to sleep without the vent at naps, which is the first step. He's so used to it and you can tell he's scared to sleep without it. Poor guy. I thought it would be hard for me to get rid of the vent. I never thought he would see it as security as well.
Tater has exploded with vocabulary and physical skills. He's normal! He only qualifies for articulation help in speech therapy with the school system. He loves school and I think putting him in a normal preschool is the best thing we ever could have done for him. He doesn't know there is anything different about him and he plays with friends, fights over toys and is happy. I can say my little baby is a boy who has thoughts and wants and expresses those very well. He loves to play and draw. He's so sweet and if ever gives me a kiss, he has to give Daddy one, too because fair is fair. He loves Lady Gaga (don't judge!) and thinks dancing around the living room is the most awesome thing. Wait. The most awesome thing is his big brother. He loves Toser. Loves when Toser asks him to play Puppy, trucks or just to run around the house. It's wonderful they have each other.
Toser. My wonderful, smart, artistic Toser. He's so cute and adorable and I want to eat him on a daily basis because he's so sweet and considerate. And when he smiles, he literally lights up the whole room. He ended up needing naps reinstated which solved most of the behavioral issues we were having. Who knew? Of course I say that and this morning was a bit emotional because he woke up waaaay too early. But just knowing it's a sleep issue and not a Mommy issue helps me tremendously when it comes to my patience level. It's so nice to know a good long nap is what he needs and I'm not the most ineffectual parent on the planet.
Mr. Awesome had injured his hip after years of playing soccer. He had outpatient surgery to repair a partially torn labrum which means we can't tease him about being old and needing a hip replacement. He should be back to playing soccer in the fall and the angels will weep with joy because this is a man who needs exercise. He's not exactly grumpy but I can tell he's not exactly ecstatic either. He's been working too hard and I've been bribing his friends to kidnap him to take him out for fun. He's still the most attentive Dad. I have to remind myself not everyone has it a great as I do in having a husband who is so hands-on with his kids. I tend to take it for granted.
I'm the same, opinionated Khaki who gets stressed thinking about making plans because, "OMG. What if Tater gets sick and I have to cancel and that would be horrible and the worst thing in the world." I'm getting better but I still hesitate to take on any responsibility outside of our family because, I don't know. Most people don't see this side of me but it's there and real and very monster-like in it's consuming-ness. I give off the vibe that everything is wonderful and great and Tater is healthy and everyone expects that we're normal (and prone to run-on sentences). The reality is until Tater gets rid of his trach, our lives are not normal and I'm going to be a commitment-phobe and tick off people with my reluctance to do things. I'm happy, though, and isn't that what anyone ever wants? I love my husband more than anything and I'm discovering I'm a better mom to older kids who can talk and reason rather than the younger babies I love to nibble on but just never can seem to feel confident with. I'm at a place where everything isn't so gray all the time and I'm just not so manic in my quest to make everything seem better than it is.
Life is good. I'm about to meet Mr. A for lunch and then I'll pick up the boys from school and we'll come home, take naps, play, eat dinner, take baths, read stories, snuggle, draw "X marks the spot" on backs and say "Night night. I love you. See you in the morning." And tomorrow morning we'll start all over. I love this life more than I ever thought possible.
Tuesday, March 23, 2010
Wednesday, January 13, 2010
I have this friend...
I have this friend who has a 4 year-old son. "She" really doesn't understand what's wrong with "her" son. The son has a good life, has all of his basic needs met, has most of his wants met, and he still is very unhappy and hates the world. Or so it seems to "my friend."
Okay, so it's me. I just don't understand. What am I doing wrong? It's like a day in a manic depressive's life.
Toser: LIFE IS WONDERFUL, I will stay in my PJs all day!
Me: No, son, today is a school day. You need to get dressed and eat breakfast.
Toser: {literally falling on the floor} I don't want to go to school!! I don't like school! I want to stay home!
If I say, "sure, let's stay home today and stay in our PJs," inevitably around 10:00 I tell him to turn the TV off, he gets bored and starts crying because he wants to go to school. If I force him to go to school, which he loves and does really well in, I feel bad because school isn't mandatory and is very much a luxury for me.
Anything is liable to turn into a meltdown. His gloves don't fit right, his carrots are touching his meat, he wanted to turn the lights off but Tater did. I've tried showing him compassion and understanding, I've tried sending him to his room, I've tried taking away privileges, I've tried ignoring him. It simply doesn't matter. Meltdowns are an inevitable part of our day and I'm exhausted. I'm tired of walking on eggshells around a 4 year-old. I'm tired of making excuses for him. I'm tired of thinking my standards and expectations are too high. Is it too much to ask of a 4 year-old to not yell at his brother, his mother, his father, his brother's nurse? To pick up his toys? To do something the second or third time I ask/tell him to do it?
The only good thing about this is he only does it at home. His teacher acts surprised when I ask if he has any behavior issues at school and jokes that Toser's behavior at home is Toser's special gift to me. But this special gift is neither needed nor asked for and I want to give it back. I used to think I had good instincts when it came to raising my children and now I'm not so sure.
He can be such a sweet boy. He's by no means spoiled OR deprived. I honestly don't think Tater's health issues have anything to do with it because he's the healthiest he's ever been. What is wrong with my smart little Toser? Why is he having such a hard time? And if he's having a hard time now, what in the world will he be like when he's a teenager?
Okay, so it's me. I just don't understand. What am I doing wrong? It's like a day in a manic depressive's life.
Toser: LIFE IS WONDERFUL, I will stay in my PJs all day!
Me: No, son, today is a school day. You need to get dressed and eat breakfast.
Toser: {literally falling on the floor} I don't want to go to school!! I don't like school! I want to stay home!
If I say, "sure, let's stay home today and stay in our PJs," inevitably around 10:00 I tell him to turn the TV off, he gets bored and starts crying because he wants to go to school. If I force him to go to school, which he loves and does really well in, I feel bad because school isn't mandatory and is very much a luxury for me.
Anything is liable to turn into a meltdown. His gloves don't fit right, his carrots are touching his meat, he wanted to turn the lights off but Tater did. I've tried showing him compassion and understanding, I've tried sending him to his room, I've tried taking away privileges, I've tried ignoring him. It simply doesn't matter. Meltdowns are an inevitable part of our day and I'm exhausted. I'm tired of walking on eggshells around a 4 year-old. I'm tired of making excuses for him. I'm tired of thinking my standards and expectations are too high. Is it too much to ask of a 4 year-old to not yell at his brother, his mother, his father, his brother's nurse? To pick up his toys? To do something the second or third time I ask/tell him to do it?
The only good thing about this is he only does it at home. His teacher acts surprised when I ask if he has any behavior issues at school and jokes that Toser's behavior at home is Toser's special gift to me. But this special gift is neither needed nor asked for and I want to give it back. I used to think I had good instincts when it came to raising my children and now I'm not so sure.
He can be such a sweet boy. He's by no means spoiled OR deprived. I honestly don't think Tater's health issues have anything to do with it because he's the healthiest he's ever been. What is wrong with my smart little Toser? Why is he having such a hard time? And if he's having a hard time now, what in the world will he be like when he's a teenager?
Tuesday, January 5, 2010
5 Bites!!!!!
Christmas was great. The boys had a blast and we spent all of Christmas weekend at my parents' house with my sisters and brother and their families. 18 people slept there on Saturday night and it was wonderful. And crazy. Then there was our annual New Year’s Eve Open House which had a record attendance. I pride myself on having enough food and I ran out of things this year. I make a lot of food so there must have been a lot of people here. That and we still have bags of trash in the garage so I think we can say it was a blowout.
All of the events of the past weeks meant that we neglected working with Tater on his feeding therapy. He’s been doing great in therapy with feeding himself bites and not gagging or reacting too badly so I was worried our little break would set him back. Last night was the first time in a while we attempted anything related to food going into Tater’s mouth and…
I willa shout it from da rooftops, "TATER TOOK 5 BITES!!!!"
Of vanilla pudding and he fed himself! Whatever he does at therapy doesn’t always come home with him. He did steps at therapy weeks before he would try it at home. He’s been taking bites without gagging for ages and he’s been feeding himself pudding for a couple of weeks there as well. But for whatever reason, at home he’s been very reluctant to do anything with soft textures in his mouth.
So when we sat down last night to do it, I was prepared for one of us to end up crying (usually it’s both of us-him because he’s miserable and me because I feel sooo bad for forcing him to do something he very obviously hates). And he just did it. We made a game out of it and he just did it. No tears, very happy, like nothing was ever wrong with eating.
It’s 5 bites and we still have a long road ahead of us, but 5 BITES!!! I am so dang happy.
All of the events of the past weeks meant that we neglected working with Tater on his feeding therapy. He’s been doing great in therapy with feeding himself bites and not gagging or reacting too badly so I was worried our little break would set him back. Last night was the first time in a while we attempted anything related to food going into Tater’s mouth and…
I willa shout it from da rooftops, "TATER TOOK 5 BITES!!!!"
Of vanilla pudding and he fed himself! Whatever he does at therapy doesn’t always come home with him. He did steps at therapy weeks before he would try it at home. He’s been taking bites without gagging for ages and he’s been feeding himself pudding for a couple of weeks there as well. But for whatever reason, at home he’s been very reluctant to do anything with soft textures in his mouth.
So when we sat down last night to do it, I was prepared for one of us to end up crying (usually it’s both of us-him because he’s miserable and me because I feel sooo bad for forcing him to do something he very obviously hates). And he just did it. We made a game out of it and he just did it. No tears, very happy, like nothing was ever wrong with eating.
It’s 5 bites and we still have a long road ahead of us, but 5 BITES!!! I am so dang happy.
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