In spite of my love of Halloween, I have to say that my first preschool Halloween party knocked me to my knees this morning.
This morning at O:Dark-Thirty (when is the TIME CHANGING??) I got Thomas dressed in his pirate costume, put a cute Halloween t-shirt on Emmie so she wouldn't feel left out, and dragged both kids to Thomas's school for his "Fall Festival". I had planned to stay to help out but really had no idea what to expect.
What I got - 50-plus kids cracked out on candy and cookies, one befuddled Thomas and one totally over-stimulated Emmie.
We arrived to find two classes of three-year-olds crammed into a single classroom. The noise was deafening. Shrieks, giggles, sobs and shouts were bouncing off the walls and ceiling and into each other and multiplying and dividing until the decibels were at an illegal level. Emmie immediately clutched the legs of any adult wearing jeans thinking they were me and Thomas put his head on my shoulder to hide his face. Thank GOD the speech therapist asked if she could work wtih Thomas for a bit because I could not have stayed in that room for longer than 5 minutes without wanting to stick a knitting needle into my eye to lobotomize myself.
After speech therapy we went to the playground for candy and games. Gah. The school has both special needs and typically developing kids, and the typical kids definitely had the advantage today. They ran around frantically picking up the candy they found on the ground while I carried Thomas and tried to pry Emmie off my legs. I finally convinced Em to pick up two Reese's cups for me and then we sat down on the sidewalk to watch the other kids spin circles and exhaust their sugar highs.
After carrying my 27 lb son for 30 minutes and watching Emmie get knocked down for the third time I told myself it was time to go. My kids had obviously had all the fun they could possibly stand for the morning and so I put Thomas in his stroller, turned to my terrified, crying daughter to encourage her to walk with me to get our stuff so we could go to the car, and then watched, amazed, as she had a total meltdown at the idea of leaving all the...fun.
Showing posts with label WonderThomas. Show all posts
Showing posts with label WonderThomas. Show all posts
Friday, October 31, 2008
Friday, October 17, 2008
Some Things I've Learned
No matter how many books you read while pregnant, no matter how many childbearing friends you have, you can't possibly know what you are getting into when you have children. I mean, I knew that babies don't sleep much at night. I knew there would be lots and lots and LOTS of diapers to change. Lots. And lots. And in my case I was a first-time Mom twice.
Thomas was so sick when he was born and needed so much special care that I learned quickly how to tube-feed rather than bottle or breastfeed. I knew how to check placement on his ng tube using a stethoscope. I learned how to draw meds into a syringe using only one hand. I can now convert milliliters into ounces without thinking about it. I swipe medical supplies at the doctor's office when the nurses aren't watching.
Thomas's sensory integration disorder meant that he didn't want to be held - ever. He spent the first 6 months of his life being moved from one horizontal surface to the next because Godhelpyou if you tried to hold the little booger. He would scream ceaselessly until put down.
I slept on an air mattress on the floor of his room for the first four months because I was terrified of leaving him alone. In fact, I rarely ever stepped foot outside his room. It became my bunker, my hidey-hole, my refuge from the outside. Thomas and I became this little world unto ourselves that even my husband could enter only on occasion. It felt safe there and of all the things I wanted, I wanted to keep Thomas safe. He was so fragile, so small, and I wasn't ready to start explaining to the masses what his diagnosis meant and how many things were different about him.
(That came to a screeching halt when I took a few days to visit my parents the September after Thomas was born. I came home and found my air mattress had been deflated and tucked away in a closet and my husband announced I was moving back into our bedroom with him. I think he missed me.)
And the doctor appointments. LORD the doctor appointments - neurologists, gastroenterologists, surgeons, twice-weekly trips to the pediatrician for weight checks. It was neverending. It became my new normal and I felt lost and adrift if we didn't have at least one appointment each week.
When Emerson was born she was premature, and tiny, but she was totally healthy and did everything just the way a baby is supposed to. She spent a few days in the Special Care Nursery until she was able to maintain her body temperature on her own, but after that she was pretty much ready to come home. BUT, BUT...I wasn't sure how to feed her! She wanted to be held ALL THE TIME. What is this strange creature?
At the first checkup with the pediatrician she told me to come back in two weeks for a weight check. Two weeks? You don't want to see her for two whole weeks? I could seriously mess her up in that amount of time! Shouldn't we come back on, say, Friday?
I was assured that all would be fine and you know what? It was.
To this day I have to rearrange my thinking about Emmie. When she started scrooching around and putting things in her mouth I was shocked because THOMAS had never put anything in his mouth. She was mouthy and grabby and people, let me just tell you it took me a while to catch on. I would set her down next to a full glass of water and when she picked it up and poured it all over herself I was honestly surprised. When she grabbed a magic marker and created lines and freckles all over her face and colored her tongue blue? Amazement on my part. I actually had to BABYPROOF my house.
It has been an adventure parenting two such disparate children. I've learned to appreciate the differences and take pride in each child's achievements. But I still haven't really caught onto the grabby thing yet.
Exhibit A - my cellphone
Thomas was so sick when he was born and needed so much special care that I learned quickly how to tube-feed rather than bottle or breastfeed. I knew how to check placement on his ng tube using a stethoscope. I learned how to draw meds into a syringe using only one hand. I can now convert milliliters into ounces without thinking about it. I swipe medical supplies at the doctor's office when the nurses aren't watching.
Thomas's sensory integration disorder meant that he didn't want to be held - ever. He spent the first 6 months of his life being moved from one horizontal surface to the next because Godhelpyou if you tried to hold the little booger. He would scream ceaselessly until put down.
I slept on an air mattress on the floor of his room for the first four months because I was terrified of leaving him alone. In fact, I rarely ever stepped foot outside his room. It became my bunker, my hidey-hole, my refuge from the outside. Thomas and I became this little world unto ourselves that even my husband could enter only on occasion. It felt safe there and of all the things I wanted, I wanted to keep Thomas safe. He was so fragile, so small, and I wasn't ready to start explaining to the masses what his diagnosis meant and how many things were different about him.
(That came to a screeching halt when I took a few days to visit my parents the September after Thomas was born. I came home and found my air mattress had been deflated and tucked away in a closet and my husband announced I was moving back into our bedroom with him. I think he missed me.)
And the doctor appointments. LORD the doctor appointments - neurologists, gastroenterologists, surgeons, twice-weekly trips to the pediatrician for weight checks. It was neverending. It became my new normal and I felt lost and adrift if we didn't have at least one appointment each week.
When Emerson was born she was premature, and tiny, but she was totally healthy and did everything just the way a baby is supposed to. She spent a few days in the Special Care Nursery until she was able to maintain her body temperature on her own, but after that she was pretty much ready to come home. BUT, BUT...I wasn't sure how to feed her! She wanted to be held ALL THE TIME. What is this strange creature?
At the first checkup with the pediatrician she told me to come back in two weeks for a weight check. Two weeks? You don't want to see her for two whole weeks? I could seriously mess her up in that amount of time! Shouldn't we come back on, say, Friday?
I was assured that all would be fine and you know what? It was.
To this day I have to rearrange my thinking about Emmie. When she started scrooching around and putting things in her mouth I was shocked because THOMAS had never put anything in his mouth. She was mouthy and grabby and people, let me just tell you it took me a while to catch on. I would set her down next to a full glass of water and when she picked it up and poured it all over herself I was honestly surprised. When she grabbed a magic marker and created lines and freckles all over her face and colored her tongue blue? Amazement on my part. I actually had to BABYPROOF my house.
It has been an adventure parenting two such disparate children. I've learned to appreciate the differences and take pride in each child's achievements. But I still haven't really caught onto the grabby thing yet.
Exhibit A - my cellphone
Thursday, September 4, 2008
A Breakthrough Perhaps?
Thomas's oral aversion started when he was first born. He was intubated for more than a week in the PICU, then had a tube stuck up his nose and down his throat for feedings. Add to that severe reflux and Sensory Processing Disorder, and the poor kid decided that anything in his mouth was bad. REALLY, REALLY bad. He had a g-tube placed at 8 weeks and we've been trying to convince him to eat ever since.
His first feeding therapist was a saint. Thomas was about 9 months old when we had our initial session and I walked in and announced that my son WOULD eat some of his first birthday cake. Bless her heart. She understood that we were going to be on Thomas time and that my goals and deadlines were essentially meaningless.
Those first few months it was a challenge just to get Thomas to tolerate having crumbs on his lips. He would toss his head to the side and throw his hand up in front of his mouth to prevent us from putting anything in there that he might have to chew and swallow. Over the years we've tried everything from applesauce to peanut butter to cheetos, and yes, before you ask, we've tried ice cream. Lord, if I had a nickel for every time someone asked me if we've tried ice cream. I know ice cream is the best, YOU know it, but Thomas doesn't agree. Unfortunately, since he doesn't speak yet we can't ask him to explain the reasoning behind his refusal.
Thomas has loosened up a bit and now will occasionally put something he knows to be food in his mouth. And he's very clever, this one. For someone who has never truly eaten anything, this kid can spot a food item from 20 yards. He'll stare balefully at it and giggle if we suggest he try it. Oh you silly grown-ups, he's thinking, why don't you just use your tubes to eat?
This weekend my mother made some of her famous and much-loved dill bread for me. I would eat a whole loaf smothered in butter in one sitting if people weren't watching me. As it is I usually try to limit myself to 3 or 4 pieces per meal. Large pieces.
We sat down at the table and the bread was placed in front of Thomas because it was the only available corner. Thomas checked it out, decided the loaf was relatively harmless and started pushing his finger into it to make little holes. Instead of letting him mangle the entire thing I sliced off a small piece and laid it on his tray and, to our collective shock and delight, he picked up that piece of bread and SHOVED IT INTO HIS MOUTH.
Seriously, I cannot overemphasize how unbelievable this is. The boy has been in therapy for 2 YEARS to convince him that food is ok. And look at this!
The look on his face was priceless. It was almost as though someone else's hand was holding the bread and OHMIGOD WHY AM I OPENING MY MOUTH?
How did this bread get IN MY MOUTH??
He's only repeated the performance once since then, but my mother has already promised him a bread maker for Christmas if he'll just try it again. I long ago came to terms with the fact that, if Thomas ever eats by mouth it will not be because I want him to, but because he is ready, and that's fine with me. But I have to say, I loved the experience of picking up the after-dinner mess and cleaning his hands and face.
His first feeding therapist was a saint. Thomas was about 9 months old when we had our initial session and I walked in and announced that my son WOULD eat some of his first birthday cake. Bless her heart. She understood that we were going to be on Thomas time and that my goals and deadlines were essentially meaningless.
Those first few months it was a challenge just to get Thomas to tolerate having crumbs on his lips. He would toss his head to the side and throw his hand up in front of his mouth to prevent us from putting anything in there that he might have to chew and swallow. Over the years we've tried everything from applesauce to peanut butter to cheetos, and yes, before you ask, we've tried ice cream. Lord, if I had a nickel for every time someone asked me if we've tried ice cream. I know ice cream is the best, YOU know it, but Thomas doesn't agree. Unfortunately, since he doesn't speak yet we can't ask him to explain the reasoning behind his refusal.
Thomas has loosened up a bit and now will occasionally put something he knows to be food in his mouth. And he's very clever, this one. For someone who has never truly eaten anything, this kid can spot a food item from 20 yards. He'll stare balefully at it and giggle if we suggest he try it. Oh you silly grown-ups, he's thinking, why don't you just use your tubes to eat?
This weekend my mother made some of her famous and much-loved dill bread for me. I would eat a whole loaf smothered in butter in one sitting if people weren't watching me. As it is I usually try to limit myself to 3 or 4 pieces per meal. Large pieces.
We sat down at the table and the bread was placed in front of Thomas because it was the only available corner. Thomas checked it out, decided the loaf was relatively harmless and started pushing his finger into it to make little holes. Instead of letting him mangle the entire thing I sliced off a small piece and laid it on his tray and, to our collective shock and delight, he picked up that piece of bread and SHOVED IT INTO HIS MOUTH.
Seriously, I cannot overemphasize how unbelievable this is. The boy has been in therapy for 2 YEARS to convince him that food is ok. And look at this!
The look on his face was priceless. It was almost as though someone else's hand was holding the bread and OHMIGOD WHY AM I OPENING MY MOUTH?
How did this bread get IN MY MOUTH??
He's only repeated the performance once since then, but my mother has already promised him a bread maker for Christmas if he'll just try it again. I long ago came to terms with the fact that, if Thomas ever eats by mouth it will not be because I want him to, but because he is ready, and that's fine with me. But I have to say, I loved the experience of picking up the after-dinner mess and cleaning his hands and face.
Wednesday, August 27, 2008
After I wrote this post a few weeks ago, I sat down and had a meeting with myself about my goals for Thomas, how to handle bureaucracy without pissing off the People Who Make The Decisions and what to do about the whole school mess. Then, I made some phone calls and sent an email to the PWMTD. Here is an excerpt:
I'm happy to report that it worked. Thomas starts PRESCHOOL next week at the UCP Center. Oh Happy Day! Except for the Thomas-starting-preschool part. I'm not happy about that at all. I mean, he's just a baby! To me he's still the tiny thing that came home from the hospital weighing under 5 pounds.
I still want to cuddle him and kiss his little head and smoosh his face in my hands, and he still lets me, for the most part. Well, not the smoosh his face part but that's understandable.
I ask myself where the time has gone and then I slap myself upside the head and say Self, remember the last three years? The ones full of pediatrician visits and specialist appointments and hospital stays and surgeries and a bajillion hours of therapy? Remember the sleepless nights and the tube-feeding by syringe because you were NOT by God going to have your child hooked up to another machine? Then remember the feeling of relief when you got that feeding pump and you realized how much better it was for everybody?
Those were all in preparation for this. For Thomas being ready for School and Learning and the Next Step. And I'm really excited for him. So next Wednesday, September 3, I will drive Thomas to preschool and I will *deep breath* leave him there. For three and a half hours. Ok, truth? I'm not really leaving him there - for the first couple of days I will stay and make sure he's ok because C'MON PEOPLE! I can't just DRIVE OFF the first day and pretend like I didn't just abandon my firstborn and then go get a latte at Starbucks!
Oh, by the way, school actually starts THIS week but I forgot to consider that when making our plans to go to the mountains with friends for Labor Day and whoops! He's going to miss the first week of school! Heh. Three years old and already a truant.
Dear {PWMTD},
I want to follow up on our conversation yesterday with an email to summarize my concerns with Thomas's school placement.
My main concern about {preschool A} is that Thomas would be the only non-mobile child there. While there may be other kids attending the school that receive physical therapy, Thomas is unable to walk or crawl. Thomas is also unable to defend himself or move away if another child walks up to him and wants his toy, or pulls his hair, or tackles him like his little sister does.
I want him in an environment where he can see other children using equipment to assist mobility so he can learn from them. I don't want him to think of himself as an outsider because he can't walk yet. It also makes me profoundly sad to think of Thomas just sitting while all the other kids are playing.
I think Thomas needs to be in a situation with his peers, children who have difficulties that more closely resemble his own. I am willing to keep Thomas out of preschool until a spot at UCP opens up rather than send him to a school where I worry about his safety.
I'm happy to report that it worked. Thomas starts PRESCHOOL next week at the UCP Center. Oh Happy Day! Except for the Thomas-starting-preschool part. I'm not happy about that at all. I mean, he's just a baby! To me he's still the tiny thing that came home from the hospital weighing under 5 pounds.
I still want to cuddle him and kiss his little head and smoosh his face in my hands, and he still lets me, for the most part. Well, not the smoosh his face part but that's understandable.
I ask myself where the time has gone and then I slap myself upside the head and say Self, remember the last three years? The ones full of pediatrician visits and specialist appointments and hospital stays and surgeries and a bajillion hours of therapy? Remember the sleepless nights and the tube-feeding by syringe because you were NOT by God going to have your child hooked up to another machine? Then remember the feeling of relief when you got that feeding pump and you realized how much better it was for everybody?
Those were all in preparation for this. For Thomas being ready for School and Learning and the Next Step. And I'm really excited for him. So next Wednesday, September 3, I will drive Thomas to preschool and I will *deep breath* leave him there. For three and a half hours. Ok, truth? I'm not really leaving him there - for the first couple of days I will stay and make sure he's ok because C'MON PEOPLE! I can't just DRIVE OFF the first day and pretend like I didn't just abandon my firstborn and then go get a latte at Starbucks!
Oh, by the way, school actually starts THIS week but I forgot to consider that when making our plans to go to the mountains with friends for Labor Day and whoops! He's going to miss the first week of school! Heh. Three years old and already a truant.
Friday, August 22, 2008
Friday Randomness
Following are a bunch of things that, by themselves, probably don't warrant a full post so I've just thrown them together here.
First, we have a (blurry) photo of the newest member of our household. I've tentatively named him Henry and, since he STILL won't eat, I'm trying not to get too attached. My stupid f&@$ing camera wouldn't focus on the fish so this is what I like to call an artist's representation:
Next up we have Emerson and Thomas, and she is CLEARLY as confused by his oral aversion as everyone else. She's all "Thomas, it's a GOLDFISH. It's GOOD. Just TRY IT." And he's all "No way let me see how small I can make my mouth so she doesn't have much of a target get that goldfish away from me I don't WANT it!" And then he yelled "MOM! She's TOUCHING ME!" Not really, but I totally know that's what he was thinking.
And finally, we have this:
They are called "DenTips", the tips are made of flavored foam and they are often used at hospitals to brush teeth. Thomas's feeding therapist uses them to desensitize his mouth and he brought some over yesterday. After the therapist left I sort of forgot that there was one laying around somewhere, until I found this...
...and realized that Emerson had bitten the tip off. I checked her mouth but didn't see any green stuff, so I resigned myself to the fact that she had, indeed, EATEN it. A few minutes later I offered Emmie some of my ice cream sammich (which I have developed a renewed luuuuurve for this summer) and as she opened wide to take a bite, the green foam fell out of her mouth onto the floor. Either she is learning to hide things in her mouth from me, or she stashed that thing somewhere so she could go back and chew on it some more. Either way, it shows WAY too much reasoning power in such a small creature.
Happy Friday everyone!
First, we have a (blurry) photo of the newest member of our household. I've tentatively named him Henry and, since he STILL won't eat, I'm trying not to get too attached. My stupid f&@$ing camera wouldn't focus on the fish so this is what I like to call an artist's representation:
Next up we have Emerson and Thomas, and she is CLEARLY as confused by his oral aversion as everyone else. She's all "Thomas, it's a GOLDFISH. It's GOOD. Just TRY IT." And he's all "No way let me see how small I can make my mouth so she doesn't have much of a target get that goldfish away from me I don't WANT it!" And then he yelled "MOM! She's TOUCHING ME!" Not really, but I totally know that's what he was thinking.
And finally, we have this:
They are called "DenTips", the tips are made of flavored foam and they are often used at hospitals to brush teeth. Thomas's feeding therapist uses them to desensitize his mouth and he brought some over yesterday. After the therapist left I sort of forgot that there was one laying around somewhere, until I found this...
...and realized that Emerson had bitten the tip off. I checked her mouth but didn't see any green stuff, so I resigned myself to the fact that she had, indeed, EATEN it. A few minutes later I offered Emmie some of my ice cream sammich (which I have developed a renewed luuuuurve for this summer) and as she opened wide to take a bite, the green foam fell out of her mouth onto the floor. Either she is learning to hide things in her mouth from me, or she stashed that thing somewhere so she could go back and chew on it some more. Either way, it shows WAY too much reasoning power in such a small creature.
Happy Friday everyone!
Thursday, August 21, 2008
Babies
Thomas had a doctor's appointment yesterday at the Pediatric Specialties Clinic at the hospital. It was a visit with the GI to discuss ongoing issues with his gagging and retching - something that his feeding therapist suspects is contributing significantly to his oral aversion. But more about that in a minute. Right now I want to talk about the other clinics that shared a waiting area with the Peds clinic.
I saw pregnant children yesterday. Girls (and I do mean girls) walking through the waiting room looking for all the world like tweens - except for the bellies they carried in front of them. There is something wrong when a pregnant girl is wearing a teeny-bopper concert tee.
My first thought was "where are the PARENTS?" Or, more precisely, "where were the parents when this girl-child was deciding to have unprotected sex?"
Some of these girls did have their mothers with them. I was relieved to see that there was some parental support, and I wondered about the ones that were there alone - were they lonely and scared? Excited and determined? Blissfully unaware of what they were getting into?
I also saw an exhausted and frazzled mom, maybe 20 years old, with her two children - a little girl about 3 and a newborn. Her little girl had energy enough for 5 people and pinballed around the room trying to keep herself entertained, while the mom sat listlessly staring into space. The little girl saw me reading to Thomas and Emmie while we waited and came over to hear the story. I obviously didn't mind but I glanced at the mom to see if it was ok. It wasn't. Mom harshly called the child back over and then, to my horror, PINCHED HER ARM and hissed at her to sit down and be still. The little girl grabbed the spot where she'd been pinched and started to cry.
It took all my self-control not to say something. Oh, how I wanted to hug that little girl and make everything alright. I thought about her future - would that mom one day be able to give her the support and love she needed not to end up like the girls waiting for the ob/gyn clinic? Was I witnessing various stages of a sad cycle?
Before I could act on any impulses to steal her and raise her as my own, we were called back to our appointment.
First off, Thomas is now nearly 36 1/2 inches tall! He's actually in the 15th percentile for height. He weighs 26.2 pounds so he's definitely on the thin side, but as I was convinced he was going to weigh 22 pounds for the rest of his life, I'll take it. Mah baybee is growing up!
This was a first visit to this doctor, a lovely lady from UNC Hospitals who travels here once a month. She honestly didn't have a lot of new ideas about how to control Thomas's daily retching, but I've come to realize that GI issues are tough. Oftentimes children will simply outgrow many of the problems and it's just a waiting game, but it is becoming increasingly difficult for me to watch my child gag and vomit each day. There is a medication sometimes used for kids with severe reflux that she wants to try; unfortunately, though, it acts as a sedative and I'm not certain I want to do that to Thomas. So we are back to trying new dosages of his same old meds. Beh.
During her exam the doctor asked me "Is he a happy child?" I smiled broadly when I answered unequivocally "Yes. He is a very happy child." And it is so true. Despite his difficulties, the dozens of doctors he has seen, the therapies he endures each week, the gagging and retching, and the torture inflicted by his little sister on a daily basis, Thomas is one of the happiest children I've ever known. And that's all I've ever wanted for him.
I wonder what the mother of that little girl in the waiting room would have said?
I saw pregnant children yesterday. Girls (and I do mean girls) walking through the waiting room looking for all the world like tweens - except for the bellies they carried in front of them. There is something wrong when a pregnant girl is wearing a teeny-bopper concert tee.
My first thought was "where are the PARENTS?" Or, more precisely, "where were the parents when this girl-child was deciding to have unprotected sex?"
Some of these girls did have their mothers with them. I was relieved to see that there was some parental support, and I wondered about the ones that were there alone - were they lonely and scared? Excited and determined? Blissfully unaware of what they were getting into?
I also saw an exhausted and frazzled mom, maybe 20 years old, with her two children - a little girl about 3 and a newborn. Her little girl had energy enough for 5 people and pinballed around the room trying to keep herself entertained, while the mom sat listlessly staring into space. The little girl saw me reading to Thomas and Emmie while we waited and came over to hear the story. I obviously didn't mind but I glanced at the mom to see if it was ok. It wasn't. Mom harshly called the child back over and then, to my horror, PINCHED HER ARM and hissed at her to sit down and be still. The little girl grabbed the spot where she'd been pinched and started to cry.
It took all my self-control not to say something. Oh, how I wanted to hug that little girl and make everything alright. I thought about her future - would that mom one day be able to give her the support and love she needed not to end up like the girls waiting for the ob/gyn clinic? Was I witnessing various stages of a sad cycle?
Before I could act on any impulses to steal her and raise her as my own, we were called back to our appointment.
First off, Thomas is now nearly 36 1/2 inches tall! He's actually in the 15th percentile for height. He weighs 26.2 pounds so he's definitely on the thin side, but as I was convinced he was going to weigh 22 pounds for the rest of his life, I'll take it. Mah baybee is growing up!
This was a first visit to this doctor, a lovely lady from UNC Hospitals who travels here once a month. She honestly didn't have a lot of new ideas about how to control Thomas's daily retching, but I've come to realize that GI issues are tough. Oftentimes children will simply outgrow many of the problems and it's just a waiting game, but it is becoming increasingly difficult for me to watch my child gag and vomit each day. There is a medication sometimes used for kids with severe reflux that she wants to try; unfortunately, though, it acts as a sedative and I'm not certain I want to do that to Thomas. So we are back to trying new dosages of his same old meds. Beh.
During her exam the doctor asked me "Is he a happy child?" I smiled broadly when I answered unequivocally "Yes. He is a very happy child." And it is so true. Despite his difficulties, the dozens of doctors he has seen, the therapies he endures each week, the gagging and retching, and the torture inflicted by his little sister on a daily basis, Thomas is one of the happiest children I've ever known. And that's all I've ever wanted for him.
I wonder what the mother of that little girl in the waiting room would have said?
Friday, August 15, 2008
Swim little fishes, SWIM
It's summer and that means it is HOT and HUMID and SWEATY and therefore there must be water to play in. Either the beach or a pool. Hell, on a really hot day a puddle will do. This spring on the very first day it was warm enough, I pulled out the baby pool.
Wow. Really small. Too small for anything but funny pictures of nekkid baybees. It was fun for about 3 minutes and then Thomas leaned on the edge and all the water poured out. Yay.
Then, my Nana bought the kids this.
Hey! Bigger! Bigger means more fun, right? Woohoo! Splashy-splash! But honestly? Two kids and one mom = not enough pool. And sitting on the deck while everyone ELSE gets to have aquatic fun mean Mommy stays HOT and HUMID and SWEATY.
Then, Daddy-O came home with this ginormous thing:
"Warning: objects in the photo are bigger than they appear"
He handed me the box, which weighed approximately 200 pounds, and said here, blow this up! It'll be fun!
Excuse me? Oh. You have me confused with someone who wants to spend the next 3 months of her life BLOWING UP A POOL. Uh-huh, someone with the lung capacity of MICHAEL PHELPS. So I did what all good suburbanites do in crisis. I went to Walmart and got this:
It still took like 30 minutes but I got the thing inflated, completely burning out my triceps in the process, and filled it up.
I have to say, climbing into that pool and being able to stretch out and sunbathe while the kids splashed around was pretty nice. I was in love with its inflatable bench that works so well as a pillow and the cupholders for my *ahem* iced tea. As an added bonus, the walls are really tall so the kids can't climb or fall out. We splashed and played and Thomas poured water out of cups and poured water out of cups and poured water out of cups, and Emmie did her best to drink the pool dry, but once I started getting all prune-y and Emerson's lips turned blue I knew it was time to get out. Hey, no need to wear it out the first day, we have all summer!
The next day I walked out on the deck to check the water temp and found this:
Blechhh! How did green mold grow OVERNIGHT? Look at all those leaves! I'll have to drain it! Clean it! Bleach it so my kids don't contract cholera!
Suddenly, the pool became...work. Oh faaaabulous. It's a beautiful daaaay. The kids are going to want to swiiiimm. Beh.
Every time Emmie spots the pool she points and shrieks. Thomas sees it and kicks and wiggles and gets all wide-eyed. Mommy then makes some lame-ass excuse and rushes everyone into the house. "Pool? What pool?? Oh, that nasty germ-filled mosquito hatchery on the deck? Silly kids. We can't play in that. It's too dirty!" Fortunately neither kid has figured out my game yet.
This experience has taught me a valuable lesson. That in-ground swimmin' hole the hubs and I keep talking about? The cee-ment pond we want in the backyard? Not gonna happen. Unless it comes with a pool boy. THEN we can talk.
Wow. Really small. Too small for anything but funny pictures of nekkid baybees. It was fun for about 3 minutes and then Thomas leaned on the edge and all the water poured out. Yay.
Then, my Nana bought the kids this.
Hey! Bigger! Bigger means more fun, right? Woohoo! Splashy-splash! But honestly? Two kids and one mom = not enough pool. And sitting on the deck while everyone ELSE gets to have aquatic fun mean Mommy stays HOT and HUMID and SWEATY.
Then, Daddy-O came home with this ginormous thing:
"Warning: objects in the photo are bigger than they appear"
He handed me the box, which weighed approximately 200 pounds, and said here, blow this up! It'll be fun!
Excuse me? Oh. You have me confused with someone who wants to spend the next 3 months of her life BLOWING UP A POOL. Uh-huh, someone with the lung capacity of MICHAEL PHELPS. So I did what all good suburbanites do in crisis. I went to Walmart and got this:
It still took like 30 minutes but I got the thing inflated, completely burning out my triceps in the process, and filled it up.
I have to say, climbing into that pool and being able to stretch out and sunbathe while the kids splashed around was pretty nice. I was in love with its inflatable bench that works so well as a pillow and the cupholders for my *ahem* iced tea. As an added bonus, the walls are really tall so the kids can't climb or fall out. We splashed and played and Thomas poured water out of cups and poured water out of cups and poured water out of cups, and Emmie did her best to drink the pool dry, but once I started getting all prune-y and Emerson's lips turned blue I knew it was time to get out. Hey, no need to wear it out the first day, we have all summer!
The next day I walked out on the deck to check the water temp and found this:
Blechhh! How did green mold grow OVERNIGHT? Look at all those leaves! I'll have to drain it! Clean it! Bleach it so my kids don't contract cholera!
Suddenly, the pool became...work. Oh faaaabulous. It's a beautiful daaaay. The kids are going to want to swiiiimm. Beh.
Every time Emmie spots the pool she points and shrieks. Thomas sees it and kicks and wiggles and gets all wide-eyed. Mommy then makes some lame-ass excuse and rushes everyone into the house. "Pool? What pool?? Oh, that nasty germ-filled mosquito hatchery on the deck? Silly kids. We can't play in that. It's too dirty!" Fortunately neither kid has figured out my game yet.
This experience has taught me a valuable lesson. That in-ground swimmin' hole the hubs and I keep talking about? The cee-ment pond we want in the backyard? Not gonna happen. Unless it comes with a pool boy. THEN we can talk.
Wednesday, August 13, 2008
Vacuum very much!
My kids are both mortally terrified of the vacuum cleaner. They go into screaming, shaking fits when I turn it on, and then it takes a lifetime to calm them back down.
This morning in the kitchen Emmie grabbed the handle of the little Swiffer vacuum, pulled it over and accidently turned it on. Oh the shrieking! The wailing! The gnashing of teeth! Emmie screamed, scuttled sideways like a crab trying to run from the tide and grabbed my ankles to escape it. Because CLEARLY it was going to turn on her with huge, pointy teeth and eat her alive.
Thomas did his patented open mouth, purple face, I'm screaming so hard nothing is coming out but just you WAIT until I catch my breath act. Because that tiny little 5 pound vacuum is dangerous and noisy and it might just suck him into the 4 ounce canister like Augustus Gloop in the Chocolate River.
I lunged for the damn thing and managed to hit the button to turn it off, but the damage was done.
People, I'm in a quandary here. With two large dogs and two small children, vacuuming is a necessity. But when do I do it? I can't vacuum when the kids are awake. Obviously. I can't vacuum when they are asleep because that would meaninterrupting my nap possibly waking them up and, well, that just is not acceptable.
I guess I should mention here that I'm sort of a vacuum addict. I've had as many as four at one time. At one time I even had a Roomba. I named it George and I used to sit on the sofa and watch it run little circles around my living room. I loved it, partly because it was cute as a bug's ear, mostly because it was doing housework. Without complaining or assuming I would *ahem* return the favor later. And it was a hit at parties. It died a few years ago - I think it choked on dog hair.
Anyhoo, I'm down to only three vacuums right now, and I CAN'T USE ANY OF THEM. So instead I sweep. Do you know what sweeping does to dog hair? It floats up and sparkles in the sunlight coming through the windows, then drifts back down to the floor behind the broom. Seriously. You CANNOT sweep up dog hair.
*sigh* It's probably just as well the Roomba died. Can you imagine what would happen if a vacuum actually CHASED one of the kids around the room? The therapy bills would put us into foreclosure.
This morning in the kitchen Emmie grabbed the handle of the little Swiffer vacuum, pulled it over and accidently turned it on. Oh the shrieking! The wailing! The gnashing of teeth! Emmie screamed, scuttled sideways like a crab trying to run from the tide and grabbed my ankles to escape it. Because CLEARLY it was going to turn on her with huge, pointy teeth and eat her alive.
Thomas did his patented open mouth, purple face, I'm screaming so hard nothing is coming out but just you WAIT until I catch my breath act. Because that tiny little 5 pound vacuum is dangerous and noisy and it might just suck him into the 4 ounce canister like Augustus Gloop in the Chocolate River.
I lunged for the damn thing and managed to hit the button to turn it off, but the damage was done.
People, I'm in a quandary here. With two large dogs and two small children, vacuuming is a necessity. But when do I do it? I can't vacuum when the kids are awake. Obviously. I can't vacuum when they are asleep because that would mean
I guess I should mention here that I'm sort of a vacuum addict. I've had as many as four at one time. At one time I even had a Roomba. I named it George and I used to sit on the sofa and watch it run little circles around my living room. I loved it, partly because it was cute as a bug's ear, mostly because it was doing housework. Without complaining or assuming I would *ahem* return the favor later. And it was a hit at parties. It died a few years ago - I think it choked on dog hair.
Anyhoo, I'm down to only three vacuums right now, and I CAN'T USE ANY OF THEM. So instead I sweep. Do you know what sweeping does to dog hair? It floats up and sparkles in the sunlight coming through the windows, then drifts back down to the floor behind the broom. Seriously. You CANNOT sweep up dog hair.
*sigh* It's probably just as well the Roomba died. Can you imagine what would happen if a vacuum actually CHASED one of the kids around the room? The therapy bills would put us into foreclosure.
Monday, August 11, 2008
Don't Look Now
I love my son. I LOOOOOVE him the way I love oxygen - I need it to live. And I breathe him in the way I do oxygen because I love the way he smells. My favorite thing in the world is to sit on the sofa with him and breathe in his breath. Even when he just wakes up and he has a little bit of morning breath it's the most beautiful, wonderful scent in the world.
I know. I'm just weird like that.
Each time Thomas learns something new, picks up a new skill or, like he did just a few weeks ago, learns how to throw kisses, I am completely blown away. Thomas, like many children with global developmental delays, has periods of time where he doesn't learn any new skills. These times, maddening and always way too long, are called plateaus. He'll ride a plateau for a while and I'll start to get frustrated, a little desperate, then suddenly, in a flurry of furious learning, he starts doing something that I had decided, in my faithless way, he would never do.
The poor kid had such a hard time with head control. His head was HUGE and his pink little neck was so small. The picture I took of him on his first birthday shows a little boy exhausted from his party and unable to hold his head up any longer, so he's resting it on the back of his high chair.
I was convinced he would never sit up unassisted. The first time he sat up long enough for me to take a photo was the summer of 2006. He was 15 months old. The effort of sitting up was so great that it made him sweat. Little beads of perspiration would just pour down his face and his arms would shake as he attempted to balance on them. After placing him in the frog position and letting go, I would cheer and sing silly songs until I saw him begin to lose it, then I would grab him up and kiss him all over and tell him what a big boy he was.
I remember the first time he ever pushed himself up to sitting on his own. I was in bed, Hubs had just finished brushing his teeth and we could hear Thomas in his room on the monitor happily talking and laughing. Hubs walked across the hall to say goodnight and then he yelled "Honey, come in here!" Nothin' like hearing that coming from your child's nursery to get your heartrate up.
I ran in and lunged over the side of the crib to see what was wrong with Thomas. The light was still off and as my eyes adjusted to the darkness I realized I couldn't FIND Thomas. Then I saw him. Sitting up at the end of the crib wondering what on earth everybody was doing in his room. Hubs and I did a damn jig and then called everyone we knew to tell them that THOMAS CAN PUSH TO SITTING ON HIS OWN. Then he didn't do it again for 3 weeks.
Now we are working on mobility. His physical therapists are working on both crawling and walking, and I keep shouting at them in my head "let's focus on one or the other, because asking him to do both just doesn't seem FAIR." There I go again. Thinking the worst while urging Thomas on to do his best.
Two weeks ago my mom, Thomas, Emmie and I were playing ball in the living room, rolling the ball back and forth between us. Thomas was all eh, not so interested, and put his head down on the carpet. He does this when he's tired so we played ball with Emmie a little longer and started thinking about bathtime.
Then suddenly, we realized Thomas had moved. Like 5 feet. Across the carpet. On his own.
He CRAWLED.
You'd have thought we just won the lottery. I'm pretty sure the neighbors heard us yelling. While we watched and yelled and Emmie looked at us like we were batshit crazy, we witnessed Thomas inchworm across the floor and to the couch, where he tried to pull up.
It ain't the prettiest crawl you ever saw. I'm pretty sure when he really gets going he's going to rub all the hair off his forehead, because he does what PTs call the five-point crawl. He puts his head down and reaches out with his hands then he walks his knees in. Then he slides his head forward, reaches out with his hands again and walks his knees in some more. Naturally he hasn't done it again since that night, but now I know how he is. He tries something once. Ruminates on it for a fewweeks days then, just when you think the first time was a mirage, a hope-hallucination, he starts doing it again. And then he owns it.
I know. I'm just weird like that.
Each time Thomas learns something new, picks up a new skill or, like he did just a few weeks ago, learns how to throw kisses, I am completely blown away. Thomas, like many children with global developmental delays, has periods of time where he doesn't learn any new skills. These times, maddening and always way too long, are called plateaus. He'll ride a plateau for a while and I'll start to get frustrated, a little desperate, then suddenly, in a flurry of furious learning, he starts doing something that I had decided, in my faithless way, he would never do.
The poor kid had such a hard time with head control. His head was HUGE and his pink little neck was so small. The picture I took of him on his first birthday shows a little boy exhausted from his party and unable to hold his head up any longer, so he's resting it on the back of his high chair.
I was convinced he would never sit up unassisted. The first time he sat up long enough for me to take a photo was the summer of 2006. He was 15 months old. The effort of sitting up was so great that it made him sweat. Little beads of perspiration would just pour down his face and his arms would shake as he attempted to balance on them. After placing him in the frog position and letting go, I would cheer and sing silly songs until I saw him begin to lose it, then I would grab him up and kiss him all over and tell him what a big boy he was.
I remember the first time he ever pushed himself up to sitting on his own. I was in bed, Hubs had just finished brushing his teeth and we could hear Thomas in his room on the monitor happily talking and laughing. Hubs walked across the hall to say goodnight and then he yelled "Honey, come in here!" Nothin' like hearing that coming from your child's nursery to get your heartrate up.
I ran in and lunged over the side of the crib to see what was wrong with Thomas. The light was still off and as my eyes adjusted to the darkness I realized I couldn't FIND Thomas. Then I saw him. Sitting up at the end of the crib wondering what on earth everybody was doing in his room. Hubs and I did a damn jig and then called everyone we knew to tell them that THOMAS CAN PUSH TO SITTING ON HIS OWN. Then he didn't do it again for 3 weeks.
Now we are working on mobility. His physical therapists are working on both crawling and walking, and I keep shouting at them in my head "let's focus on one or the other, because asking him to do both just doesn't seem FAIR." There I go again. Thinking the worst while urging Thomas on to do his best.
Two weeks ago my mom, Thomas, Emmie and I were playing ball in the living room, rolling the ball back and forth between us. Thomas was all eh, not so interested, and put his head down on the carpet. He does this when he's tired so we played ball with Emmie a little longer and started thinking about bathtime.
Then suddenly, we realized Thomas had moved. Like 5 feet. Across the carpet. On his own.
He CRAWLED.
You'd have thought we just won the lottery. I'm pretty sure the neighbors heard us yelling. While we watched and yelled and Emmie looked at us like we were batshit crazy, we witnessed Thomas inchworm across the floor and to the couch, where he tried to pull up.
It ain't the prettiest crawl you ever saw. I'm pretty sure when he really gets going he's going to rub all the hair off his forehead, because he does what PTs call the five-point crawl. He puts his head down and reaches out with his hands then he walks his knees in. Then he slides his head forward, reaches out with his hands again and walks his knees in some more. Naturally he hasn't done it again since that night, but now I know how he is. He tries something once. Ruminates on it for a few
Wednesday, August 6, 2008
Betacarotene much?
The girlchild is orange. I took this picture while we were at my parents' house because it was such an AWWWW moment. They were holding hands! No one was crying! For a few, brief seconds, peace reigned and my children were cherubs.
Then I downloaded the photo and realized that Emmie's love of cantaloupe might have reached a dangerous place. A place that might warrant it's own episode of "Intervention".
On the left, ladies and germs, you have the boychild. One with lovely blond hair, beautiful blue eyes and pink and cream skin. On the right...you have my little punkin. Literally.
Then I downloaded the photo and realized that Emmie's love of cantaloupe might have reached a dangerous place. A place that might warrant it's own episode of "Intervention".
On the left, ladies and germs, you have the boychild. One with lovely blond hair, beautiful blue eyes and pink and cream skin. On the right...you have my little punkin. Literally.
Friday, July 25, 2008
It's always something
Thomas currently has a persistent, low-grade fever. This fever has been especially fond of him and has stuck around for 3 solid weeks. 2 weeks ago, a mere 7 days after the fever started, I took him to our pediatrician. Let me first remind you just how much Thomas hates going to the doctor. The poor kid has seen WAY too many of them in his short lifetime and it takes only the sight of a stethoscope to set him off like a car alarm.
-- AAAAH!!! AAAAHH!!! AAAAHHHHH!! AAAAAHHHH!!!!!!--
That's actually what he sounds like - and he is almost as difficult to silence.
Our pediatrician pronounced him fit, except for a virus that's been going around causing a fever and no other symptoms. Motrin and Tylenol, the Wondertwins, would take care of it. Bring him back in 10 days if he isn't better.
10 days later he isn't better and we are at my parents house. Naturally.
Off to the clinic at the hospital. This is where it gets, eh, interesting. The doctor here walks in the exam room where we are waiting. Thomas starts screaming like I'm amputating his arm without anesthesia. The doc and I proceed to have a conversation over the shrieking.
"So, any symptoms other than the fever?"
-- AAAAH!!! AAAAHH!!! AAAAHHHHH!! AAAAAHHHH!!!!!!--
"No, he seems to be fine other than that. But it's been 12 days now and-"
--AAAHHHHH!!! AAAAAAHHHH!!! AAAAAHHHHH!!! AAAHHHHH!!!--
"-he is still feverish. No coughing, nothing else-
--AAAAHHHHH!!! AAAAAHHHHH!!! AAAAAHHH!!! AAHHHH!!--
The doc checks his ears, listens to his heart and his chest - and how he could possibly have heard anything I'll never know - and orders a chest x-ray. Heh. This is really taking longer than I thought.
We step into the radiology lab and I lay Thomas on the table and they--
--AAAHHHH!! AAAAHHH!!! AAHHHHH!!!! AAHHHH!!!--
-get two pictures of his chest. We go back to the exam room.
45 minutes later Thomas is calm and happy because we've been left alone by all medical personnel since the x-ray. I'm pretty seriously irritated at this point. I spy the roll-y stool that all exam rooms have, sit down on it and put Thomas on my lap and we head out into the hallway to count things. Thomas loves counting things. We spend a couple of minutes rolling up and down the hallway counting the light fixtures when Hey! Whaddaya know! Our nurse goes to find our doctor!
5 minutes later our doctor announces his chest is clear and here are some antibiotics. Come back if he's not better in a couple of days. Ha. That rolling down the hallway counting things is good for getting the attention of people not otherwise paying attention.
Unfortunately, the antibiotics didn't work. Back to the Clinic.
Today's doc orders a CBC and urinalysis. ARGH. An army of nurses comes in to draw blood and-
--AAAHHH!!! AAAAHHH!! AAAHHH!!! AAAHHHH!!!--
-after sticking both of Thomas's little arms they get a vial of blood to take to the lab. Another nurse comes in-
--AAAAHHH!! AAAAAHHHH!!! AAAHHHH!! AAAAAHHHHHH!!!--
-and tapes a little bag over his, erm, privates to collect some pee. Seriously.
45 minutes later yet ANOTHER nurse comes in to get MORE blood because the first batch clotted.
--AAAAHHH!! AAAAAHHHH!!! AAAHHHH!! AAAAAHHHHHH!!!--
She checks the baggie - the kid's on pee strike.
The doctor shows up and-
--AAAAHHH!! AAAAAHHHH!!! AAAHHHH!! AAAAAHHHHHH!!!--
-brings me a power bar and a Diet Coke. I love him.
30 minutes later and still no pee. I'm getting a little desperate at this point because I really just want to take. Thomas. home.
The CBC comes back and the doc comes in to tell me-
--AAAAHHH!! AAAAAHHHH!!! AAAHHHH!! AAAAAHHHHHH!!!--
-that Thomas has a virus. Motrin and Tylenol should help the fever, otherwise there's nothing they can do. He cancels the urinalysis, which is convenient since the kid STILL HASN'T PEED.
We are home now and Thomas will start psychotherapy tomorrow for the emotional damage inflicted by medical personnel this past week.
-- AAAAH!!! AAAAHH!!! AAAAHHHHH!! AAAAAHHHH!!!!!!--
That's actually what he sounds like - and he is almost as difficult to silence.
Our pediatrician pronounced him fit, except for a virus that's been going around causing a fever and no other symptoms. Motrin and Tylenol, the Wondertwins, would take care of it. Bring him back in 10 days if he isn't better.
10 days later he isn't better and we are at my parents house. Naturally.
Off to the clinic at the hospital. This is where it gets, eh, interesting. The doctor here walks in the exam room where we are waiting. Thomas starts screaming like I'm amputating his arm without anesthesia. The doc and I proceed to have a conversation over the shrieking.
"So, any symptoms other than the fever?"
-- AAAAH!!! AAAAHH!!! AAAAHHHHH!! AAAAAHHHH!!!!!!--
"No, he seems to be fine other than that. But it's been 12 days now and-"
--AAAHHHHH!!! AAAAAAHHHH!!! AAAAAHHHHH!!! AAAHHHHH!!!--
"-he is still feverish. No coughing, nothing else-
--AAAAHHHHH!!! AAAAAHHHHH!!! AAAAAHHH!!! AAHHHH!!--
The doc checks his ears, listens to his heart and his chest - and how he could possibly have heard anything I'll never know - and orders a chest x-ray. Heh. This is really taking longer than I thought.
We step into the radiology lab and I lay Thomas on the table and they--
--AAAHHHH!! AAAAHHH!!! AAHHHHH!!!! AAHHHH!!!--
-get two pictures of his chest. We go back to the exam room.
45 minutes later Thomas is calm and happy because we've been left alone by all medical personnel since the x-ray. I'm pretty seriously irritated at this point. I spy the roll-y stool that all exam rooms have, sit down on it and put Thomas on my lap and we head out into the hallway to count things. Thomas loves counting things. We spend a couple of minutes rolling up and down the hallway counting the light fixtures when Hey! Whaddaya know! Our nurse goes to find our doctor!
5 minutes later our doctor announces his chest is clear and here are some antibiotics. Come back if he's not better in a couple of days. Ha. That rolling down the hallway counting things is good for getting the attention of people not otherwise paying attention.
Unfortunately, the antibiotics didn't work. Back to the Clinic.
Today's doc orders a CBC and urinalysis. ARGH. An army of nurses comes in to draw blood and-
--AAAHHH!!! AAAAHHH!! AAAHHH!!! AAAHHHH!!!--
-after sticking both of Thomas's little arms they get a vial of blood to take to the lab. Another nurse comes in-
--AAAAHHH!! AAAAAHHHH!!! AAAHHHH!! AAAAAHHHHHH!!!--
-and tapes a little bag over his, erm, privates to collect some pee. Seriously.
45 minutes later yet ANOTHER nurse comes in to get MORE blood because the first batch clotted.
--AAAAHHH!! AAAAAHHHH!!! AAAHHHH!! AAAAAHHHHHH!!!--
She checks the baggie - the kid's on pee strike.
The doctor shows up and-
--AAAAHHH!! AAAAAHHHH!!! AAAHHHH!! AAAAAHHHHHH!!!--
-brings me a power bar and a Diet Coke. I love him.
30 minutes later and still no pee. I'm getting a little desperate at this point because I really just want to take. Thomas. home.
The CBC comes back and the doc comes in to tell me-
--AAAAHHH!! AAAAAHHHH!!! AAAHHHH!! AAAAAHHHHHH!!!--
-that Thomas has a virus. Motrin and Tylenol should help the fever, otherwise there's nothing they can do. He cancels the urinalysis, which is convenient since the kid STILL HASN'T PEED.
We are home now and Thomas will start psychotherapy tomorrow for the emotional damage inflicted by medical personnel this past week.
Wednesday, July 16, 2008
School Daze
Well, it's happened again. I let my guard down and someone came in and stomped all over my ideas of What Will Be. Thomas is supposed to be going to preschool in the Fall, and I let someone else do the decision-making. I was not The Decider and things are not. going. well.
There are two special-needs preschools in town and I really wanted Thomas to go to the UCP Center. It started as primarily a school for kids with Cerebral Palsy but has expanded into a larger role, taking kids with all sorts of special needs. They are obviously very experienced with kids that have mobility issues, like Thomas, and they also have mainstream kids in each classroom and I really like that mixture. The typical kids learn compassion, the special needs kids aren't segregated from the community.
Unbeknownst to me, there is another preschool in town, one primarily for kids with behavioral problems and autism. One where all the kids are mobile. Guess which one Thomas was assigned to.
And what really gets me, what really makes me smack myself in the head and wonder just what the gray matter in my skull is comprised of (porridge perhaps? maybe mashed up bananas?) is that I really thought it was because they had Thomas's best interests in mind.
BUT - they didn't tell me Thomas would be the only non-mobile child. They didn't tell me that the other kids are there for issues completely unrelated to the issues Thomas has. When I communicated with the person at the school system, she had memories of me making statements that I not only wouldn't have made, but I wouldn't even have THOUGHT. Things like having Thomas schooled at home. Wha..? I definitely want Thomas in a school setting so he can interact with his peers. Peers meaning kids with mobility and cognitive problems. Is this so difficult?
AARGGH.
He's only three and I'm already fighting the school system. This bodes ill for the next 15 years. And by God I am NOT letting him go to a school where fully-mobile kids with behavioral issues have the chance to pick on my child. Maybe I'm overreacting, but so be it. I will make this a positive experience for Thomas no matter what.
I probably need talking down off the ledge at this point. Any takers?
There are two special-needs preschools in town and I really wanted Thomas to go to the UCP Center. It started as primarily a school for kids with Cerebral Palsy but has expanded into a larger role, taking kids with all sorts of special needs. They are obviously very experienced with kids that have mobility issues, like Thomas, and they also have mainstream kids in each classroom and I really like that mixture. The typical kids learn compassion, the special needs kids aren't segregated from the community.
Unbeknownst to me, there is another preschool in town, one primarily for kids with behavioral problems and autism. One where all the kids are mobile. Guess which one Thomas was assigned to.
And what really gets me, what really makes me smack myself in the head and wonder just what the gray matter in my skull is comprised of (porridge perhaps? maybe mashed up bananas?) is that I really thought it was because they had Thomas's best interests in mind.
BUT - they didn't tell me Thomas would be the only non-mobile child. They didn't tell me that the other kids are there for issues completely unrelated to the issues Thomas has. When I communicated with the person at the school system, she had memories of me making statements that I not only wouldn't have made, but I wouldn't even have THOUGHT. Things like having Thomas schooled at home. Wha..? I definitely want Thomas in a school setting so he can interact with his peers. Peers meaning kids with mobility and cognitive problems. Is this so difficult?
AARGGH.
He's only three and I'm already fighting the school system. This bodes ill for the next 15 years. And by God I am NOT letting him go to a school where fully-mobile kids with behavioral issues have the chance to pick on my child. Maybe I'm overreacting, but so be it. I will make this a positive experience for Thomas no matter what.
I probably need talking down off the ledge at this point. Any takers?
Thursday, July 10, 2008
The Revolving Door
Thomas has 4 therapists visit him every week. Yup, four people coming in and out, and in and out, and in and out of my home to work with my child. I used to feel the need to straighten up, maybe sweep the floor, even change out of my pajamas before any of them showed up. It was the hostess in me. "Can I offer you some tea? Anything to eat? How's your Mom?"
No longer. Now they are lucky if I've brushed my teeth before they get here. The first therapist of the week actually comes at the godawful, still peeling my eyes open time of 8:00 am Monday mornings. When I made the first appointment she offered to come at 7:30 but I didn't think I wanted her to be the first person awake in our house on Mondays. Unless she'd also start the coffeemaker and let the dogs out to pee.
Now, we mustn't forget to add in the CNA that comes 4 mornings a week. I LOOOOOVE her, by the way. I've started the paperwork to adopt her. Don't tell her parents.
Plus there's the housekeeper that comes in two afternoons a week to make sure we don't die of dust inhalation or whatever awful disease it is that's spread by dog hair going unvacuumed for months.
It's a revolving door at my house and it drives me crazy. Completely, brains-falling-out-my-head nutso.
Until they all had the week off because Thomas was staying with my parents. Then I got lonely. Monday was ok - Emerson and I slept in. We headed out to Target to buy stuff we didn't need. We took a nap - YAY for naps! We lazed around on the deck and then made new playlists for Mommy's iPod. It was a sleepy, do-nothing kind of day.
By Thursday I was twitchy from lack of company. When Hubs got home I talked so much he wanted to pull his ears off and stick them in his pocket until he went back to work the next day. I went to the grocery store every day just to chat with the check-out lady. I was excited to see the housekeeper.
Jeez, I thought, I need to get some friends that aren't paid to be here. I mean, I have friends. REALLY! I do. I just don't see them as often as I do Kelly, Anne, Pam, Seth and Brenna.
No longer. Now they are lucky if I've brushed my teeth before they get here. The first therapist of the week actually comes at the godawful, still peeling my eyes open time of 8:00 am Monday mornings. When I made the first appointment she offered to come at 7:30 but I didn't think I wanted her to be the first person awake in our house on Mondays. Unless she'd also start the coffeemaker and let the dogs out to pee.
Now, we mustn't forget to add in the CNA that comes 4 mornings a week. I LOOOOOVE her, by the way. I've started the paperwork to adopt her. Don't tell her parents.
Plus there's the housekeeper that comes in two afternoons a week to make sure we don't die of dust inhalation or whatever awful disease it is that's spread by dog hair going unvacuumed for months.
It's a revolving door at my house and it drives me crazy. Completely, brains-falling-out-my-head nutso.
Until they all had the week off because Thomas was staying with my parents. Then I got lonely. Monday was ok - Emerson and I slept in. We headed out to Target to buy stuff we didn't need. We took a nap - YAY for naps! We lazed around on the deck and then made new playlists for Mommy's iPod. It was a sleepy, do-nothing kind of day.
By Thursday I was twitchy from lack of company. When Hubs got home I talked so much he wanted to pull his ears off and stick them in his pocket until he went back to work the next day. I went to the grocery store every day just to chat with the check-out lady. I was excited to see the housekeeper.
Jeez, I thought, I need to get some friends that aren't paid to be here. I mean, I have friends. REALLY! I do. I just don't see them as often as I do Kelly, Anne, Pam, Seth and Brenna.
Tuesday, July 8, 2008
Ow!
I had to take Emerson for the last of her one-year vaccinations today. You see, just before she turned one I bought a Very Popular Book by a Very Popular Pediatrician which recommends spacing shots out and delaying some until the child is older. I watched all the talk shows and read all the headlines and by golly, I was NOT going to let the doctor poke my baby over and over and over and over...
(Note: I am not trying to start an argument about vaccinations here - I'm merely telling a story.)
At her last appointment, I pulled The Book from my diaper bag and my pediatrician promptly began a 10 minute lecture - I'm not exaggerating - on why the hype is mostly that - hype. He mentioned something about how he HATES to see parents walk into his office with That Book, and then he told me why. So I listened as he made a reasoned, rational argument and I somehow managed not to ask for copies of the studies he was citing. I thought about it for a moment and when I spoke, it was to ask "But why does she have to get FOUR shots at one time? That just seems so...mean."
Thomas was so sick after he was born that I was sort of immune to the meanness of shots. They had done so much to him at Duke - intubation, scalp IV, central line - vaccinations were child's play. At his well-child appointments I was relieved that the doc was merely giving him shots. I would hold his arms and stroke his hair as the doc poked him, and then I got to take him home, happy in the knowledge that his visit was for something so normal.
But those memories have faded some and I have found myself dreading the doctor's office on behalf of my children. I HATE taking them for shots.
Today I held Emmie's little arms and stroked her hair, and watched her face as the nurse poked her chubby little thighs with her needles. I watched her eyes as she went from quietly lying on the exam table to the sudden awareness that someone had just HURT HER. And then hurt her AGAIN.
She did the purple-faced open-mouth silent I'm-screaming-but-I'm-so-pissed-I-can't-make-any-noise thing, and as I picked her up and held her she clutched my shirt and dug her little feet into my tummy, trying to climb me. It broke my heart a little bit and I am so, SO glad that neither of my kids thinks that Mommy is doing hurty things to them on purpose. And I've decided that two shots are all I can handle at one time.
(Note: I am not trying to start an argument about vaccinations here - I'm merely telling a story.)
At her last appointment, I pulled The Book from my diaper bag and my pediatrician promptly began a 10 minute lecture - I'm not exaggerating - on why the hype is mostly that - hype. He mentioned something about how he HATES to see parents walk into his office with That Book, and then he told me why. So I listened as he made a reasoned, rational argument and I somehow managed not to ask for copies of the studies he was citing. I thought about it for a moment and when I spoke, it was to ask "But why does she have to get FOUR shots at one time? That just seems so...mean."
Thomas was so sick after he was born that I was sort of immune to the meanness of shots. They had done so much to him at Duke - intubation, scalp IV, central line - vaccinations were child's play. At his well-child appointments I was relieved that the doc was merely giving him shots. I would hold his arms and stroke his hair as the doc poked him, and then I got to take him home, happy in the knowledge that his visit was for something so normal.
But those memories have faded some and I have found myself dreading the doctor's office on behalf of my children. I HATE taking them for shots.
Today I held Emmie's little arms and stroked her hair, and watched her face as the nurse poked her chubby little thighs with her needles. I watched her eyes as she went from quietly lying on the exam table to the sudden awareness that someone had just HURT HER. And then hurt her AGAIN.
She did the purple-faced open-mouth silent I'm-screaming-but-I'm-so-pissed-I-can't-make-any-noise thing, and as I picked her up and held her she clutched my shirt and dug her little feet into my tummy, trying to climb me. It broke my heart a little bit and I am so, SO glad that neither of my kids thinks that Mommy is doing hurty things to them on purpose. And I've decided that two shots are all I can handle at one time.
Wednesday, July 2, 2008
Eye see you
Sigh. It finally happened. The thing I used to joke about when Thomas first got his prosthetic eye.
We were at Target. My Mecca. My Reason for Being. Thomas was in the cart and Emmie was in the seat up front. BECAUSE, if I put Emmie in the cart she starts climbing out and I am SO not a fan of head injuries. I figured that Emmie in the seat, with a seatbelt, was the choice that would keep Child Protective Services from visiting. However, I discovered that Thomas in the cart unsupervised is also not a good idea.
We wandered through the ladies' clothing section and OK! I was checking out the junior department because I refuse to admit I'm too old for those clothes and theyaresodarnCUTE! and had just moved out into the main aisle to head over to the baby gear. Yeah, I don't buy clothes for myself, but baby gear? Someone hang onto my credit card, I'm about to go crazy.
I hear a *click*. I look around the cart wondering what I had dropped.
And there it is. Thomas's fake eye looking up at me from the floor.
Can you imagine the scene if this had happened on the carpeted section? I wouldn't have heard it drop. We would have been halfway across the store before he turned to look at me at which point I would have totally lost my shit and started retracing my steps to find it. Fake eyes don't come cheap, people.
And then, the announcement over the intercom. "Target shoppers, please take a moment to look around you. A prosthetic eye has been lost. If you find a prosthetic eye please don't scream, just kindly pick it up and bring it to Customer Service."
No, I definitely do not ever want to be the reason behind THAT little drama.
We were at Target. My Mecca. My Reason for Being. Thomas was in the cart and Emmie was in the seat up front. BECAUSE, if I put Emmie in the cart she starts climbing out and I am SO not a fan of head injuries. I figured that Emmie in the seat, with a seatbelt, was the choice that would keep Child Protective Services from visiting. However, I discovered that Thomas in the cart unsupervised is also not a good idea.
We wandered through the ladies' clothing section and OK! I was checking out the junior department because I refuse to admit I'm too old for those clothes and theyaresodarnCUTE! and had just moved out into the main aisle to head over to the baby gear. Yeah, I don't buy clothes for myself, but baby gear? Someone hang onto my credit card, I'm about to go crazy.
I hear a *click*. I look around the cart wondering what I had dropped.
And there it is. Thomas's fake eye looking up at me from the floor.
Can you imagine the scene if this had happened on the carpeted section? I wouldn't have heard it drop. We would have been halfway across the store before he turned to look at me at which point I would have totally lost my shit and started retracing my steps to find it. Fake eyes don't come cheap, people.
And then, the announcement over the intercom. "Target shoppers, please take a moment to look around you. A prosthetic eye has been lost. If you find a prosthetic eye please don't scream, just kindly pick it up and bring it to Customer Service."
No, I definitely do not ever want to be the reason behind THAT little drama.
Tuesday, July 1, 2008
Thomas's Story
When I started this blog I wanted it to be about my family, one of whom has special needs. What I didn't want was a Special Needs Blog. I realized though, that to ignore Thomas's story altogether means that there are things I can't say because they wouldn't make sense. So here you go.
When I got pregnant with Thomas I was considered high-risk because I was 36. My ob-gyn suggested that I have the 11-week Nuchal Translucency Test. No problem, I thought, this just goes along with being a little older. I have to say though, that every time someone said "advanced maternal age" within earshot I wanted to smack them sideways and shout "I'm not FIFTY for God's sake. I'm 36! I'm YOUNG."
About 2 minutes into the test I saw the sonographer's face go still and she got very quiet. Not a good thing. She summoned the doctor, a very kind man with a very serious face, and he told me that there was a 50% chance there was something genetically wrong with my baby. Probably something like Down's Syndrome. My husband and I were devastated, of course, and thus began my running of a veritable gauntlet of tests for the next 24 weeks. The thing is, EVERY SINGLE TEST came back normal. Chorionic Villus Sample? Normal. Multiple in-utero echocardiograms of Thomas's heart? Normal. Ultrasound after ultrasound? Normal. The doctors were elated, but deep inside I knew there was still something wrong.
The day Thomas was born I was at work, trying not to pester Dr. Google too much about prenatal stuff, when I noticed that he was not moving much. I tried all the tricks - I drank a Coke hoping the sugar and caffeine would get him moving, I laid down in my boss's office on my left side, poked my belly, nothing got a reaction. I went in to my ob-gyn's office for a non-stress test, and the next thing I knew I was being prepped for an emergency c-section.
When Thomas was born he was blue and still, not breathing. I had pretty much stopped breathing myself out of pure terror. My husband went back when they whisked Thomas away for resuscitation, and when he came back he told me that there was clearly something wrong with our baby. I don't remember much else but I do remember starting to cry.
Later that afternoon the neonatologist came to my room to discuss his findings. He started out by saying "Frankly, I'm disturbed by what I see." He went through a list of so-called "dysmorphic features" indicating a probable genetic abnormality, and when he got to the end I lost it. "He is missing his left eye." My poor little boy, all alone in the nursery with people inspecting and prodding him all over, and I couldn't even be with him because my legs were still numb from the spinal block.
Later the neonatologist came back to tell us that they had reintubated Thomas because his oxygen levels were dropping. I told my husband to lock the door. Every time that doctor showed up he had bad news and I didn't want him coming back in. We started calling him Dr. Doom.
A day later Thomas was transferred to Duke University Medical Center, 45 minutes from our home, because he had developed PPHN. I told my ob-gyn I could either leave against medical advice or they could discharge me, but I was going with my baby. They discharged me.
It was at Duke that we learned that Thomas had a genetic abnormality called a microdeletion. He was missing tiny strands of genes off of one of his 8th chromosomes. The syndrome is so rare is doesn't have a name and no one could tell us what it meant for Thomas, his development, his future. As no one at the time could tell us if he would live, his genetics were not our top priority.
Thomas gradually improved, moving from an oscillating ventilator to a regular vent, then to C-PAP, then a nasal cannula. All of these days blur together in my mind now, I only remember hour after hour of hovering over a hospital bed willing my son to live. Just LIVE. Please. I made bargains with God. I swore at God. I apologized and negotiated more bargains.
Thomas was finally moved from the PICU to a regular room where I was able to spend the nights with him. We brought him home 3 weeks after he was born, but he had an NG tube for feedings because he couldn't coordinate his suck-swallow-breathe reflex.
5 weeks later we were back to have a g-tube placed.
When Thomas was 9 months old he got his first prosthetic eye. It fits perfectly in his eye socket to help his face grow normally, and it is hand-painted to match his other eye - the most beautiful blue you've ever seen.
He started a variety of therapies to help his development - occupational, physical, speech and feeding. He will eventually learn to eat, but for now he gets all his nourishment through his g-tube. He doesn't yet walk or talk but we are getting close to both.
He is the happiest, sweetest three-year-old you will ever meet. His laughter is contagious, his smile lights up a room and his blond curls are irresistable. He is the love of my life.
When I got pregnant with Thomas I was considered high-risk because I was 36. My ob-gyn suggested that I have the 11-week Nuchal Translucency Test. No problem, I thought, this just goes along with being a little older. I have to say though, that every time someone said "advanced maternal age" within earshot I wanted to smack them sideways and shout "I'm not FIFTY for God's sake. I'm 36! I'm YOUNG."
About 2 minutes into the test I saw the sonographer's face go still and she got very quiet. Not a good thing. She summoned the doctor, a very kind man with a very serious face, and he told me that there was a 50% chance there was something genetically wrong with my baby. Probably something like Down's Syndrome. My husband and I were devastated, of course, and thus began my running of a veritable gauntlet of tests for the next 24 weeks. The thing is, EVERY SINGLE TEST came back normal. Chorionic Villus Sample? Normal. Multiple in-utero echocardiograms of Thomas's heart? Normal. Ultrasound after ultrasound? Normal. The doctors were elated, but deep inside I knew there was still something wrong.
The day Thomas was born I was at work, trying not to pester Dr. Google too much about prenatal stuff, when I noticed that he was not moving much. I tried all the tricks - I drank a Coke hoping the sugar and caffeine would get him moving, I laid down in my boss's office on my left side, poked my belly, nothing got a reaction. I went in to my ob-gyn's office for a non-stress test, and the next thing I knew I was being prepped for an emergency c-section.
When Thomas was born he was blue and still, not breathing. I had pretty much stopped breathing myself out of pure terror. My husband went back when they whisked Thomas away for resuscitation, and when he came back he told me that there was clearly something wrong with our baby. I don't remember much else but I do remember starting to cry.
Later that afternoon the neonatologist came to my room to discuss his findings. He started out by saying "Frankly, I'm disturbed by what I see." He went through a list of so-called "dysmorphic features" indicating a probable genetic abnormality, and when he got to the end I lost it. "He is missing his left eye." My poor little boy, all alone in the nursery with people inspecting and prodding him all over, and I couldn't even be with him because my legs were still numb from the spinal block.
Later the neonatologist came back to tell us that they had reintubated Thomas because his oxygen levels were dropping. I told my husband to lock the door. Every time that doctor showed up he had bad news and I didn't want him coming back in. We started calling him Dr. Doom.
A day later Thomas was transferred to Duke University Medical Center, 45 minutes from our home, because he had developed PPHN. I told my ob-gyn I could either leave against medical advice or they could discharge me, but I was going with my baby. They discharged me.
It was at Duke that we learned that Thomas had a genetic abnormality called a microdeletion. He was missing tiny strands of genes off of one of his 8th chromosomes. The syndrome is so rare is doesn't have a name and no one could tell us what it meant for Thomas, his development, his future. As no one at the time could tell us if he would live, his genetics were not our top priority.
Thomas gradually improved, moving from an oscillating ventilator to a regular vent, then to C-PAP, then a nasal cannula. All of these days blur together in my mind now, I only remember hour after hour of hovering over a hospital bed willing my son to live. Just LIVE. Please. I made bargains with God. I swore at God. I apologized and negotiated more bargains.
Thomas was finally moved from the PICU to a regular room where I was able to spend the nights with him. We brought him home 3 weeks after he was born, but he had an NG tube for feedings because he couldn't coordinate his suck-swallow-breathe reflex.
5 weeks later we were back to have a g-tube placed.
When Thomas was 9 months old he got his first prosthetic eye. It fits perfectly in his eye socket to help his face grow normally, and it is hand-painted to match his other eye - the most beautiful blue you've ever seen.
He started a variety of therapies to help his development - occupational, physical, speech and feeding. He will eventually learn to eat, but for now he gets all his nourishment through his g-tube. He doesn't yet walk or talk but we are getting close to both.
He is the happiest, sweetest three-year-old you will ever meet. His laughter is contagious, his smile lights up a room and his blond curls are irresistable. He is the love of my life.
Wednesday, June 18, 2008
Missing a limb
Thomas is staying with my parents this week. They adore him and he adores them right back. Thomas's time with them is what Hubs and I like to call Summer Camp. They keep him busier than any other 5 people could and it's all FUN. Boat rides, playing in the pool, strolls around the block, he gets to do it all. I'm pretty sure when I call to talk to him he's thinking "Mom? Mom who?"
Oh, how I miss him. I miss how he snores so loudly at night that I have to turn the monitor down to sleep. I miss his musical laugh that is SO easy to elicit just by saying words he finds funny. I miss his eruption of happiness whenever we turn a ceiling fan on. I sort of feel like I've lost an arm or a leg - I don't really know how to function well without it.
That's not to say I'm not enjoying having Emmie all alone. She and I have had buckets o' fun so far this week and this is the first she's been without her brother for any length of time. She's really too young to miss him, but it hurts my heart a little because she looks so lonely when she's sitting on the floor playing with her toys. She also seems bummed that she doesn't have anyone to steal toys from. In her mind, toys are just no fun if they aren't snatched away from someone else, which makes me pretty sure that Thomas is also thinking "Emerson? Emerson who?"
I am amazed at how easy one child is when you are used to two. One child to get up and ready in the morning, one naptime to schedule around, and especially no SCREAMING when one kid irritates the other. It's so quiet around here it's almost spooky. I crack up when I think about how hard I used to think one child was. How very BUSY I was. Laundry? You think I got LAUNDRY done today?
We get Thomas back on Sunday and our regular schedule will begin again. I'll have gotten totally lazy by then but I can't wait to squeeze him and mess up his crazy monkeyhair, then turn the ceiling fan on so he can scream with delight.
Oh, how I miss him. I miss how he snores so loudly at night that I have to turn the monitor down to sleep. I miss his musical laugh that is SO easy to elicit just by saying words he finds funny. I miss his eruption of happiness whenever we turn a ceiling fan on. I sort of feel like I've lost an arm or a leg - I don't really know how to function well without it.
That's not to say I'm not enjoying having Emmie all alone. She and I have had buckets o' fun so far this week and this is the first she's been without her brother for any length of time. She's really too young to miss him, but it hurts my heart a little because she looks so lonely when she's sitting on the floor playing with her toys. She also seems bummed that she doesn't have anyone to steal toys from. In her mind, toys are just no fun if they aren't snatched away from someone else, which makes me pretty sure that Thomas is also thinking "Emerson? Emerson who?"
I am amazed at how easy one child is when you are used to two. One child to get up and ready in the morning, one naptime to schedule around, and especially no SCREAMING when one kid irritates the other. It's so quiet around here it's almost spooky. I crack up when I think about how hard I used to think one child was. How very BUSY I was. Laundry? You think I got LAUNDRY done today?
We get Thomas back on Sunday and our regular schedule will begin again. I'll have gotten totally lazy by then but I can't wait to squeeze him and mess up his crazy monkeyhair, then turn the ceiling fan on so he can scream with delight.
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