So, the day has finally come that we need to take some dental action on J. We've been going back and forth with the Dental Clinic at the hospital about what we should do and when we should do it. It's been difficult attempting to move forward because the residents change every 18 months or so and each one has had a different opinion about what to do with him. (I personally think they were a little afraid of his diagnosis.)
The one we are currently seeing has been the most proactive, mainly because she wasn't sure what the heck to do with Jackson and called in the attending for backup.
We attempted to get a panoramic x-ray of Jackson's head, which requires a machine to swing around J's head while he keeps his chin on a bar, while biting on a stick, while remaining perfectly still...
Then we took Jackson to the room with the x-ray machine in it. He flipped and didn't want to go anywhere near it. Jameson wasn't have any part of the "be a good sport and show your brother how to sit here and you will get a sticker." We ended up putting Jackson on the stool, Randy held the back of his head, I held his hands. The dentist would position his head and then dash out of the room to push the button. (This was all while we wearing lead lined suits sufficient for a nuclear meltdown.) As the machine moved around J's head, Randy had to quickly move his hand, wait for the machine to move and then grab J's head again.
After a few attempts at this (each attempt was uglier than the one before it), we got a few blurry pics of one side of J's head. The dentist felt that one tooth was problematic and sent us for an oral surgery consult.
The oral surgeon's office is not at Children's. It's in the complex across the street. Jackson did not like the change of venue. The whole time while we were waiting for our appointment, Jackson howled, literally howled, "Take you downstairs!!" The other patients in the waiting room glared at me. At least the staff was sympathetic and tried to buy his affections with toys from the treasure chest. I now have a purse full of rubber dinosaurs that he could not care less about.
The surgeon was nice and the assistant stayed in the room with us during the visit to distract Jackson while the doctor talked to me. His take on the x-ray was that tooth #20, a molar, is coming in sideways and blocking the teeth behind it, so it's got to come out. The procedure will be done in day surgery with J totally under anesthesia. While he's out, they will get a full set of x-rays, to see what else needs to be done. The first dentist we saw was slightly concerned that J's permanent teeth haven't come down yet, and if they aren't down by the time he's 9, they may have to manually bring them down. That totally squicks me out, so I can't think about that now.
So, he's scheduled for a heath and hx physical next week with the ped, then a desensitization dental visit on the 20th. First week of January a "high-risk anesthesia" consult and then surgery on the 11th. Yikes. Poor guy. He's going to miserable, but at least I got them to wait until after Christmas, so he's not miserable when Santa comes.
Object du Jour: The Target flyer. "What the word say?" He then copies the words onto his Magnadoodle.
12.09.2012
11.30.2012
The Fugitive
Whoa, two in a row! ;)
A few weeks ago, I decided to make some lovely chicken and wild rice soup for dinner, but I needed a few things to make it. Luckily, we live within walking distance (half a block) of a wonderful little grocery store. I grabbed my shopping bag, Jameson wanted to come too, and off we went. Jackson stayed behind with Randy.
We got what we needed, paid and walked past the courtesy booth on the way out. I hear the cashiers talking to a child, saying, "Is your mommy shopping in the store?" And I thought, "How sad, someone's kiddo is lost."
Jameson and I walk down the street toward home and see Randy and a lady I didn't know running up the street. Randy yells, "Do you have Jackson?" I said, "No, why?" I could feel the panic starting to rise in my chest.
Turns out Jackson decided he wanted to come with us and opened the door and left on his own. The woman with Randy found Jackson walking down a very busy street toward the store. He was barefoot, naturally, because what story do you hear like this on the news actually shows a child fully clothed? The woman thought that Jackson had left the store, so she took him into the store and then went walking down the street just in case that's not where he came from. That's when she ran into Randy who had realized the door was open and Jackson was gone.
I went running back into the store and see Jackson still behind the courtesy booth playing with the phone (maybe trying to phone home?) and the two cashiers still pumping him for info and attempting to get him to take a sucker. I immediately burst into tears, Jackson looks up at me like, "Hey Mom, this phone is pretty cool, but these chicks won't take no for an answer on the sucker."
The cashiers tell me that they had to call the police because they didn't know when Jackson had come from. They knew him because we live half a block from a pretty cool grocery store, we're in there almost daily, they just didn't know where we lived.
The officer shows up and starts asking questions, name, rank, serial number, how did he get out, when did you know he was missing, how did he not know to leave, etc. Then the kicker, "You know, you picked a really bad time of day for this to happen." Really? Really? I made a mental note to talk to Jackson later that escaping earlier in the day would be more convenient for the PD. Because to the average person, Jackson looks "normal" the officer kept questioning about Jackson's special needs like he almost didn't believe us. Why would I lie about something like that? Then, Jackson had had enough and starting stimming at full volume. DIT DIT DIT DIT while bucking to get down in Randy's arms. The officer looked very uncomfortable and abruptly ended the interview.
We got home and all that *could have* happened started running though my head. What if he would've been taken? What if he got hit by a car? And on and on. I haven't cried so hard for so long in my whole life.
I immediately ordered a tag for Jackson's shoe that has all of his important info on it from roadid.com. They make great products that are reasonably priced. (Unfortunately, he won't wear a wrist or ankle bracelet, too sensory and the shoe tag wouldn't have helped a barefoot child...) But, he's got it on at school and whenever we are in public, so if he makes a break for it, he's branded. Randy made a visit to the PD to talk to them about our situation with Jackson and their response was, "Um, well, I guess just call us if you lose him again." No preemptive action available. I know other cities have some programs in place and I've been looking into more info on them.
So, that was the scariest day of my life. Even more scary than the day we got Jackson's diagnosis. Big lesson learned in a big way.
Object du Jour: Plastic shapes and letters.
A few weeks ago, I decided to make some lovely chicken and wild rice soup for dinner, but I needed a few things to make it. Luckily, we live within walking distance (half a block) of a wonderful little grocery store. I grabbed my shopping bag, Jameson wanted to come too, and off we went. Jackson stayed behind with Randy.
We got what we needed, paid and walked past the courtesy booth on the way out. I hear the cashiers talking to a child, saying, "Is your mommy shopping in the store?" And I thought, "How sad, someone's kiddo is lost."
Jameson and I walk down the street toward home and see Randy and a lady I didn't know running up the street. Randy yells, "Do you have Jackson?" I said, "No, why?" I could feel the panic starting to rise in my chest.
Turns out Jackson decided he wanted to come with us and opened the door and left on his own. The woman with Randy found Jackson walking down a very busy street toward the store. He was barefoot, naturally, because what story do you hear like this on the news actually shows a child fully clothed? The woman thought that Jackson had left the store, so she took him into the store and then went walking down the street just in case that's not where he came from. That's when she ran into Randy who had realized the door was open and Jackson was gone.
I went running back into the store and see Jackson still behind the courtesy booth playing with the phone (maybe trying to phone home?) and the two cashiers still pumping him for info and attempting to get him to take a sucker. I immediately burst into tears, Jackson looks up at me like, "Hey Mom, this phone is pretty cool, but these chicks won't take no for an answer on the sucker."
The cashiers tell me that they had to call the police because they didn't know when Jackson had come from. They knew him because we live half a block from a pretty cool grocery store, we're in there almost daily, they just didn't know where we lived.
The officer shows up and starts asking questions, name, rank, serial number, how did he get out, when did you know he was missing, how did he not know to leave, etc. Then the kicker, "You know, you picked a really bad time of day for this to happen." Really? Really? I made a mental note to talk to Jackson later that escaping earlier in the day would be more convenient for the PD. Because to the average person, Jackson looks "normal" the officer kept questioning about Jackson's special needs like he almost didn't believe us. Why would I lie about something like that? Then, Jackson had had enough and starting stimming at full volume. DIT DIT DIT DIT while bucking to get down in Randy's arms. The officer looked very uncomfortable and abruptly ended the interview.
We got home and all that *could have* happened started running though my head. What if he would've been taken? What if he got hit by a car? And on and on. I haven't cried so hard for so long in my whole life.
I immediately ordered a tag for Jackson's shoe that has all of his important info on it from roadid.com. They make great products that are reasonably priced. (Unfortunately, he won't wear a wrist or ankle bracelet, too sensory and the shoe tag wouldn't have helped a barefoot child...) But, he's got it on at school and whenever we are in public, so if he makes a break for it, he's branded. Randy made a visit to the PD to talk to them about our situation with Jackson and their response was, "Um, well, I guess just call us if you lose him again." No preemptive action available. I know other cities have some programs in place and I've been looking into more info on them.
So, that was the scariest day of my life. Even more scary than the day we got Jackson's diagnosis. Big lesson learned in a big way.
Object du Jour: Plastic shapes and letters.
11.29.2012
I'm baaaack!
I realize it's been awhile since I posted. I just needed a little break. Parenting itself is a challenge, but with a kiddo like Jackson, there are days I feel like I'm at my wit's end. But, then he goes and does something totally amazing and it's worth it.
Where to start? Sleeping. Still not great, still waking up at 3-4 am with Jackson and Monkey George in bed with us. He's been sick the past week and he's been sleeping well, but still making the nightly trek down the hall.
Eating. Meh. Good days and bad days. We're still tubing him three times a day and giving him whatever solid food he will eat. He's totally on a waffle kick. The only caveat: they must be hexagonal. Eggo makes these lovely hexagon-shaped waffles. Circles? Never. Squares? Blasphemy. On the weekend trip to Grandma and Grandpa's, the store only had circle-shaped waffles. I bought them knowing it could get ugly. I brought them home, he refused to eat them. I tried cutting one into to hexagon and one into a trapezoid. No dice. Occasionally, he will ask for toast and Sunbutter, but mainly eats only things dry and crunchy.
Behavior. This is been the most challenging thing lately. He's coffee bombed the kitchen more than once, dumps the cat's food daily and uses Cheerios as confetti. He hates sitting the chair to be pumped, yeah, it's boring, but I try to keep him entertained. It has to be done. He will buck the chair and scream to get out. It's been like having a toddler for 8 years.
Now for the good stuff! HE'S READING!! This child loves books, words and spelling more than anything. We stroll through Target T-A-R-G-E-T and spell all the words at the top of the endcaps. On the next visit, he remembers those words and reads them back to me. Wow. He brings home a little book every night from school and can read them to me, no problem. Simply incredible. It's interesting to me because once he learns a new word, he knows it. I don't think he is learning phonetically, I never hear him attempting to sound out a new word. After I teach him the word and spell it a few times, he's got it.
His vocabulary is steadily increasing and he is using more descriptive works and pronouns. He's slowly phasing out the "Bob Dole" speech.
He's writing novel words on his own! J has his own unique handwriting, but when he tells me what the word is, I can totally see it. I got him a really cool little gadget called a Boogie Board for Christmas. It's an electronic writing tablet that erases at the touch of a button. I see a lot of trapezoid drawing in my future. I like it because it uses a stylus and not a finger like the iPad. Nice writing utensil practice!
Jameson is totally loving school. He's met the girl of his dreams and they are planning to get married and live with us. So nice to have your life planned out at 4! The girl's sister came up to me on the playground and said, "My sister is totally in love with Jameson.....like, seriously." Oh to be young again!
Jameson is doing Tae Kwon Do and loving it. He got his white belt and broke a board with one hit. Jackson, naturally, hates it because it's very loud.
I guess that's all I got for now.
Object du Jour: Trapezoids and plastic letters. "What da word say?" is a phrase I hear a lot when he's laid out RTCG on the floor.
Where to start? Sleeping. Still not great, still waking up at 3-4 am with Jackson and Monkey George in bed with us. He's been sick the past week and he's been sleeping well, but still making the nightly trek down the hall.
Eating. Meh. Good days and bad days. We're still tubing him three times a day and giving him whatever solid food he will eat. He's totally on a waffle kick. The only caveat: they must be hexagonal. Eggo makes these lovely hexagon-shaped waffles. Circles? Never. Squares? Blasphemy. On the weekend trip to Grandma and Grandpa's, the store only had circle-shaped waffles. I bought them knowing it could get ugly. I brought them home, he refused to eat them. I tried cutting one into to hexagon and one into a trapezoid. No dice. Occasionally, he will ask for toast and Sunbutter, but mainly eats only things dry and crunchy.
Behavior. This is been the most challenging thing lately. He's coffee bombed the kitchen more than once, dumps the cat's food daily and uses Cheerios as confetti. He hates sitting the chair to be pumped, yeah, it's boring, but I try to keep him entertained. It has to be done. He will buck the chair and scream to get out. It's been like having a toddler for 8 years.
Now for the good stuff! HE'S READING!! This child loves books, words and spelling more than anything. We stroll through Target T-A-R-G-E-T and spell all the words at the top of the endcaps. On the next visit, he remembers those words and reads them back to me. Wow. He brings home a little book every night from school and can read them to me, no problem. Simply incredible. It's interesting to me because once he learns a new word, he knows it. I don't think he is learning phonetically, I never hear him attempting to sound out a new word. After I teach him the word and spell it a few times, he's got it.
His vocabulary is steadily increasing and he is using more descriptive works and pronouns. He's slowly phasing out the "Bob Dole" speech.
He's writing novel words on his own! J has his own unique handwriting, but when he tells me what the word is, I can totally see it. I got him a really cool little gadget called a Boogie Board for Christmas. It's an electronic writing tablet that erases at the touch of a button. I see a lot of trapezoid drawing in my future. I like it because it uses a stylus and not a finger like the iPad. Nice writing utensil practice!
Jameson is totally loving school. He's met the girl of his dreams and they are planning to get married and live with us. So nice to have your life planned out at 4! The girl's sister came up to me on the playground and said, "My sister is totally in love with Jameson.....like, seriously." Oh to be young again!
Jameson is doing Tae Kwon Do and loving it. He got his white belt and broke a board with one hit. Jackson, naturally, hates it because it's very loud.
I guess that's all I got for now.
Object du Jour: Trapezoids and plastic letters. "What da word say?" is a phrase I hear a lot when he's laid out RTCG on the floor.
9.12.2012
Queen Slacker!
That's me! I can't believe summer is over!
Both boys are in school this year. Jackson is in second grade and Jameson is in 4K half days. The both are loving it. Jackson was not sure the first few days because he's got a new regular ed teacher and a sub until January in his spec ed class, but now he asks to go on weekends.
Where to start? Eating and sleeping have both been horrible for Jackson. He's now tubed 3 times a day and eats all things dry/crunchy in between. He will no longer eat purees or sandwiches and won't drink the formula anymore. Doesn't seem to be a clear reason why. It's been very frustrating, but we've been getting help from the GI clinic. Right now, their main concern is weight gain over oral eating advancement. He got down to 30 lbs (remember, he's 8) and he gained almost 3 lbs after we went to the three times a day tubing schedule.
We had been tubing him at night, but we stopped for a few reasons: he won't stay in bed, which was pulling the button to it's limits and I was afraid he would pull it out. The second reason is that he was waking up so wet at 3-4 am, I would need to change him from head to toe and then he was up for the day. Even with an extra pad in the diaper, he was peeing himself silly. Good times. Which then lead to mountains of laundry.
We are now going to be starting him on melatonin to help him sleep. He's taking over two hours to fall asleep and then waking 2-3 a night and most mornings I find him in bed with me or sleeping on the floor. Hopefully, the melatonin will help. The ped gave me dosage instructions, so I'm on a mission to find some today.
J's 8th birthday was in July, and after partying with Grandma and Grandpa, we went to Packers Training Camp and a little amusement park in Green Bay. The week before school we went to South Dakota and visited tons of cool stuff, and just spent some family time together before the boys were off to school.
Yesterday, I got a call that J had an allergic reaction to "something." He had full-body hives and wheezing. They gave him Benadryl, which cleared up the hives, but his teacher said she noticed leg tremors. The ped said she wasn't sure what caused the leg tremors, but it's not a sign of the allergic reaction, maybe the Benadryl. She said to watch him and see if there are any more.
Yep, it's non-stop adventure around here.
Object du Jour: Super Why and the iPad.
Both boys are in school this year. Jackson is in second grade and Jameson is in 4K half days. The both are loving it. Jackson was not sure the first few days because he's got a new regular ed teacher and a sub until January in his spec ed class, but now he asks to go on weekends.
Where to start? Eating and sleeping have both been horrible for Jackson. He's now tubed 3 times a day and eats all things dry/crunchy in between. He will no longer eat purees or sandwiches and won't drink the formula anymore. Doesn't seem to be a clear reason why. It's been very frustrating, but we've been getting help from the GI clinic. Right now, their main concern is weight gain over oral eating advancement. He got down to 30 lbs (remember, he's 8) and he gained almost 3 lbs after we went to the three times a day tubing schedule.
We had been tubing him at night, but we stopped for a few reasons: he won't stay in bed, which was pulling the button to it's limits and I was afraid he would pull it out. The second reason is that he was waking up so wet at 3-4 am, I would need to change him from head to toe and then he was up for the day. Even with an extra pad in the diaper, he was peeing himself silly. Good times. Which then lead to mountains of laundry.
We are now going to be starting him on melatonin to help him sleep. He's taking over two hours to fall asleep and then waking 2-3 a night and most mornings I find him in bed with me or sleeping on the floor. Hopefully, the melatonin will help. The ped gave me dosage instructions, so I'm on a mission to find some today.
J's 8th birthday was in July, and after partying with Grandma and Grandpa, we went to Packers Training Camp and a little amusement park in Green Bay. The week before school we went to South Dakota and visited tons of cool stuff, and just spent some family time together before the boys were off to school.
Yesterday, I got a call that J had an allergic reaction to "something." He had full-body hives and wheezing. They gave him Benadryl, which cleared up the hives, but his teacher said she noticed leg tremors. The ped said she wasn't sure what caused the leg tremors, but it's not a sign of the allergic reaction, maybe the Benadryl. She said to watch him and see if there are any more.
Yep, it's non-stop adventure around here.
Object du Jour: Super Why and the iPad.
7.02.2012
Just Catching Up!
Jackson had the Rast Test for milk and his levels went up and they don't know why. So, he can still have the baked-in milk products, but no raw milk protein. So, that means no raw milk challenge. I was really hope we'd be able to try some new stuff.
J has now decided that the cool kids don't drink their formula, so he's lost 2 lbs and down to 30 lbs, 10 oz. (Remember, he's almost 8) Gah! GI decided that he needs a bolus feed of 10 oz, 3x/day and then 500 mls at night. He can eat whatever he wants at scheduled times in between. He's eating or being fed 6 times per day and half of the overnight. It's like having a newborn again. On the bright side, I'm sure he's gained some weight back. We revisit GI in July, so we'll see what the new plan is then.
Jackson started baseball again and was thrilled to be "running the bases." I was worried about how it would go after so much time off, but he was really excited. They have built a fully handicap accessible playground there and even kids in wheelchairs can get up inside the structure. Downside, he's now on the Twins.
Took the boys to the Brewers' game yesterday. Jameson was really workin' the goodies they were giving away for kid's day, he got an Italian Sausage bobble head, a bracelet, ice cream, tattoos, a picture of Corey Hart (his fav player), and a balloon hat in Brewer's colors (handmade by a clown no less). Jackson was less than thrilled to be there. He did like the Brewer's clock and the K's for pitching strike outs, but that's about it. We didn't end up staying for the whole game.
Object du Jour: The ipad and plastic letters.
J has now decided that the cool kids don't drink their formula, so he's lost 2 lbs and down to 30 lbs, 10 oz. (Remember, he's almost 8) Gah! GI decided that he needs a bolus feed of 10 oz, 3x/day and then 500 mls at night. He can eat whatever he wants at scheduled times in between. He's eating or being fed 6 times per day and half of the overnight. It's like having a newborn again. On the bright side, I'm sure he's gained some weight back. We revisit GI in July, so we'll see what the new plan is then.
Jackson started baseball again and was thrilled to be "running the bases." I was worried about how it would go after so much time off, but he was really excited. They have built a fully handicap accessible playground there and even kids in wheelchairs can get up inside the structure. Downside, he's now on the Twins.
Took the boys to the Brewers' game yesterday. Jameson was really workin' the goodies they were giving away for kid's day, he got an Italian Sausage bobble head, a bracelet, ice cream, tattoos, a picture of Corey Hart (his fav player), and a balloon hat in Brewer's colors (handmade by a clown no less). Jackson was less than thrilled to be there. He did like the Brewer's clock and the K's for pitching strike outs, but that's about it. We didn't end up staying for the whole game.
Object du Jour: The ipad and plastic letters.
5.07.2012
Random Thought...
If I had to rename this blog today it would be: ipadtrapezoidsandmonkeygeorge
Allergy today. Rast test for milk protein and peanuts. After the results are in we will do a raw milk challenge and see how that goes. For now we wait.
Poor J hates blood draws. At least the tech used numbing spray on him, so there were very few tears. He did keep yelling, "I need to go to the pharmacy!" at the tech. I had to explain that the pharmacy was anywhere else but the lab. lol
A link I found very truthful: 7 Things You Don't Know About a Special Needs Parent
Object du Jour: Plastic letters A, O, and K.
Allergy today. Rast test for milk protein and peanuts. After the results are in we will do a raw milk challenge and see how that goes. For now we wait.
Poor J hates blood draws. At least the tech used numbing spray on him, so there were very few tears. He did keep yelling, "I need to go to the pharmacy!" at the tech. I had to explain that the pharmacy was anywhere else but the lab. lol
A link I found very truthful: 7 Things You Don't Know About a Special Needs Parent
Object du Jour: Plastic letters A, O, and K.
5.04.2012
Another Limo Ride to the Chateau...
Last Wednesday, Jackson had a horrible allergic reaction/croup episode and ended up taking the Limo (ambulance) to the Chateau (Children's). He was very scared, but after a racemic epi and steroids, he was well enough to go home. Oh, how I hate getting those phone calls. Poor guy has been sick with something almost every single week this winter. He missed two days of school this week alone for a stomach flu-like bug. He slept until 11:30 am yesterday. I kept checking him to make sure he was still breathing.
He was finally feeling well enough last night to resume his normal activities, aka, the iPad. He somehow turned a Barney song on full-blast and scared the bejeezus out of himself. He was running at me with the iPad held out in front of him crying, "Haaaaappppy Kwaaaaaanza!"
Allergy clinic coming up on Monday, so hopefully, we can get the milk challenge scheduled and move forward from there. GI is also coming up soon and I'm worried with all this illness what his weight will be.
Object du Jour: The iPad and Monkey George.
He was finally feeling well enough last night to resume his normal activities, aka, the iPad. He somehow turned a Barney song on full-blast and scared the bejeezus out of himself. He was running at me with the iPad held out in front of him crying, "Haaaaappppy Kwaaaaaanza!"
Allergy clinic coming up on Monday, so hopefully, we can get the milk challenge scheduled and move forward from there. GI is also coming up soon and I'm worried with all this illness what his weight will be.
Object du Jour: The iPad and Monkey George.
2.21.2012
It's baaaaack...
The plague, that is. Jackson was sent home from school last Wednesday with a fever, AGAIN. Took him right into the doctor who couldn't find anything wrong with him. Ears looked good (at least the Amoxicillan did it's job) and his throat was fine. Alternate Tylenol and Motrin, bring him back if it gets worse, blah, blah, blah. I feel so, so bad for him. He ended up missing school Thursday and Friday. Now Jameson and I have it. Man, I'm all for mild winters, but I feel like the germs don't get killed off.
Monday J headed back to school and I went with him on a fieldtrip with his special ed class to the Share warehouse. Share is an organization that provides low cost food for families. They are totally volunteer driven. J's class was there to bag potatoes. He didn't want anything to do with it. The warehouse very busy with classes from other school working as well. The forklift was scary and fascinating for J, so that's how he spent most of his time - watching the forklift take away the boxes of our bagged potatoes.
Object du Jour: Plastic letters. He needs to take a handful for the car ride to school every morning.
Monday J headed back to school and I went with him on a fieldtrip with his special ed class to the Share warehouse. Share is an organization that provides low cost food for families. They are totally volunteer driven. J's class was there to bag potatoes. He didn't want anything to do with it. The warehouse very busy with classes from other school working as well. The forklift was scary and fascinating for J, so that's how he spent most of his time - watching the forklift take away the boxes of our bagged potatoes.
Object du Jour: Plastic letters. He needs to take a handful for the car ride to school every morning.
2.07.2012
Boogers and Ear Infections and Amoxicillan, OH MY!
The plague has hit this house hard! Jackson was sick two weeks ago with a horrible cold. Last Sunday, he started complaining he didn't feel well. After fevers on/off and being sent home from school with a green nose faucet, I took him in to Urgent Care. Raging ear infection. After a week of "Does your ear hurt" today was the first day he was acting like himself.
The pic above is a little boy who crawled between my back and the couch to play with my hair and promptly fell asleep on my shoulder. What you can't see is the line of drool running down my back. When he would get sick when he was younger, he would crawl off somewhere like a wounded puppy and fall asleep in the oddest places. Now when he doesn't feel well, he will only sleep in his bed or on me. Poor guy.
This week is Feeding Tube Awareness week. Jackson has had his g-tube since he was 18 months old. It's scary to think where he'd be without it. He's still a skinny minnie, but at least I know that he's getting a large part of the nutrition he needs while he's sleeping. Now that's talent!
Object du Jour: J had to take Monkey George to school today. I hope they remember to send him home. Bedtime would be ugly.
1.20.2012
Link
Link to Amelia Update on babble.com This link clears up some questions and concerns people have expressed. It also shares the big name supporters of Amelia's fight.
1.19.2012
The return of the Plague
Yay, the Plague is back. Coughing, sneezing, sore throat, headache; all the good stuff. So far, only Jackson and I have it. Here's to hoping the other two stay healthy and that J's ick doesn't migrate into a fun-filled croup adventure at the Chateau. J missed school yesterday and I sent him today. The high is only supposed to be in the teens. At least school doesn't let the kids outside when it's that cold.
I don't have any newer updates on Amelia's situation other than the transplant team is going to meet with the family. Here's to hoping.
Potty training has been so-so. He still loves to sit, embraces the new seat, but hates the footstool and the timer sends him over the edge. The shower curtain must be closed and he needs to be completely naked, NO SOCKS. (This could make using the bathroom at, say, Target, a bit awkward.) He's also been pushing me out of the bathroom and shutting the door. So, it's still a work in progress.
Object du Jour: The iPad.
I don't have any newer updates on Amelia's situation other than the transplant team is going to meet with the family. Here's to hoping.
Potty training has been so-so. He still loves to sit, embraces the new seat, but hates the footstool and the timer sends him over the edge. The shower curtain must be closed and he needs to be completely naked, NO SOCKS. (This could make using the bathroom at, say, Target, a bit awkward.) He's also been pushing me out of the bathroom and shutting the door. So, it's still a work in progress.
Object du Jour: The iPad.
1.17.2012
1.16.2012
WTF?
I read an article recently by a mom whose child was denied a kidney transplant at CHOP because the child's IQ is too low and her future "quality of life" is low. I have insufficient words to describe how positively furious this makes me. Who determines quality of life? Should we only give life-saving medical treatment to those who provide the biggest contribution to society with their brilliant minds? Is this some cruel form of doctor-directed natural selection? Why provide medical treatment to people with low IQs at all? Why bother? They aren't pulling their societal weight like the rest of us rocket scientists. Where do we draw the line?
Link to Article and Link to Petition
What I also need to mention is that this child has Wolf-Hirschhorn syndrome. In short, it's the "opposite" of what Jackson has. Jackson has a duplication of the short arm of his 4th chromosome, Amelia has a deletion of that same arm. So, in an odd way, I feel like this issue really hits home. Not just it's another child with special needs, but with a small chromosomal twist, we could be in the same boat.
Please read the article and sign the petition to help Amelia get the surgery she so desperately needs. Think about those you know and love who may not qualify for this surgery under CHOPs standards. If you don't have anyone directly in your life, think of Jackson.
Link to Article and Link to Petition
What I also need to mention is that this child has Wolf-Hirschhorn syndrome. In short, it's the "opposite" of what Jackson has. Jackson has a duplication of the short arm of his 4th chromosome, Amelia has a deletion of that same arm. So, in an odd way, I feel like this issue really hits home. Not just it's another child with special needs, but with a small chromosomal twist, we could be in the same boat.
Please read the article and sign the petition to help Amelia get the surgery she so desperately needs. Think about those you know and love who may not qualify for this surgery under CHOPs standards. If you don't have anyone directly in your life, think of Jackson.
1.10.2012
Potty all the time
- get rid of the little potty
- buy a small seat that fits onto the big toilet
- make sure Jackson has a foot stool when he's sitting (when you balance, things, um, clench, so it doesn't make things very, um, productive)
- give him small things to stay entertained while he's there, books, bubbles, toys
- set a timer for 3 mins. When it goes off, he's done whether he went or not. Set timer for 2 hours, try again.
Eating has been hit or miss lately. He's decided the cool kids don't eat sandwiches anymore and they've been coming home uneaten. But, he asked for and ate one this morning before school, so maybe that's changing. Again. I've been slipping things in his purees, whole potato/sweet potato, mashed banana, peaches, pureed chicken and for the most part, he's been tolerating it. Every little bit helps.
I'm pretty sure I have the only kid on the planet that asks to do homework. Here's to hoping that doesn't change! It is a little disconcerting when he brings home math work and I can't figure it out. I have two degrees (granted neither are in math, but still) and I can't figure out first grade math. And the really sad part is, if the homework goes back to school done incorrectly, I'm pretty sure the teacher is gonna know that Jackson didn't do it alone. lol
Jameson turned 4 last week! That means he'll be heading off to school before I know it! He chose Red Robin as his lunch destination, I'm pretty sure he's just in it for the balloon. Then on Saturday, we went to Chuck E Cheese. Holy over stimulation Batman! (I'm talking about me here). The kids had fun though (Jackson took 800 pictures on the camera of random people, he couldn't care less about the games). It was really crowded with kids running everywhere. I haven't been in a CEC since Jackson's birthday a few years back and I don't remember there being armed guards at the front door. Scary the way some things have to change.
Object du Jour: The iPad.
1.05.2012
trisomy 4p
I found a Facebook group of families affected (effected? darn it) by 4p! When I joined a few weeks ago, there were less than 20, now they are up to 28! I never, in my wildest dreams, thought I would see that many of us in one place. If you a are 4p family checkin' out the blog, drop me an e-mail and I will get you the link. wjo4244 at gmail dot com
It's been absolutely amazing chatting with other families who know exactly what we go though. And, it's a little freaky seeing 20+ other children who look so much like J!
J has his first of three "potty training sessions" with the Beh Psych today. We'll see how that goes.
Jameson turned 4 yesterday! How did that happen? We took him to the restaurant of his choice for lunch (Red Robin) and on Saturday we're heading to (Lord, give me strength) Chuck E Cheese. I don't know how J will feel about it, but the boys' cousin will be there and they love her, so that may help.
Object du Jour: Dr. Suess's ABC book. That book had a good run earlier in the year and now it's back. I literally have the whole book memorized. It's scary....Big A, little a, what begins with A? Aunt Annie's Alligator, A, A, A. Like I said, scary.
It's been absolutely amazing chatting with other families who know exactly what we go though. And, it's a little freaky seeing 20+ other children who look so much like J!
J has his first of three "potty training sessions" with the Beh Psych today. We'll see how that goes.
Jameson turned 4 yesterday! How did that happen? We took him to the restaurant of his choice for lunch (Red Robin) and on Saturday we're heading to (Lord, give me strength) Chuck E Cheese. I don't know how J will feel about it, but the boys' cousin will be there and they love her, so that may help.
Object du Jour: Dr. Suess's ABC book. That book had a good run earlier in the year and now it's back. I literally have the whole book memorized. It's scary....Big A, little a, what begins with A? Aunt Annie's Alligator, A, A, A. Like I said, scary.
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