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.
2.21.2012
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.
12.29.2011
Stuff
J has been a busy bee since school let out. Christmas trips, illnesses, doctors appointments; it's no wonder he keeps asking to go to school.
Poor J woke up Christmas Eve throwing up, after a fever the night before. It's become an annual tradition, I think. All he wanted to do was sit in my lap and cry, "Are you throwing up?" I gave him some Zofran, once he starts he can't stop heaving, and he was better by the time we were ready to open presents with my family.
On Christmas Day, he was much better and he and Jameson tore into their presents. Jackson's fav was his Fisher Price work light and Jameson loved Dr. Drill and Fill. Love that the simplest gifts make them the happiest! We then headed off to the other Grandma and Grandpa's where Santa left a box of Lincoln Logs (and his hat) on the porch.
J wasn't super cooperative at his eye appointment last week. A new person was training and he kept looking at Veronica (our usual orthoptist, aka Veronica Harmonica) for direction. He did a little worse than usual, so if it stays that way at the next visit, we may have to start patching again. I'm sure he will love that. Hopefully, it was just the new person throwing him off.
This week we went to dental clinic and we saw Veronica in the waiting room with her daughter. I said, "J, look who's here" and he looked at her and reached up to feel for his glasses (which were laying on the kitchen floor).
J really, really dislikes the dentist. But, I have to say, this is the best he's done. He allowed back x-rays to be taken, which we haven't gotten to do in the past. And, the news wasn't good. The Dr. found another supernumerary tooth on the left side (he also has one in the front) and his right 6 year molar is growing into the tooth in front of it. All three will need to be pulled at some point. The Dr. was going to consult with his attendings and see what their thoughts were. He said usually they consult "the literature" for guidance for kids with rarer syndromes, but he doubts there's anything out there on trisomy 4p. I told this dentist this was his chance to be published! I'm terrified about how J will handle the extractions and if it will impact his eating. He's surprised me before.
Object du Jour: The iPad. Christmas toys are way fun, but not as cool at the iPad. I just cleared 983 of J's self portraits from the iPad this morning. Maybe I'll post some, they are pretty darn funny!
Poor J woke up Christmas Eve throwing up, after a fever the night before. It's become an annual tradition, I think. All he wanted to do was sit in my lap and cry, "Are you throwing up?" I gave him some Zofran, once he starts he can't stop heaving, and he was better by the time we were ready to open presents with my family.
On Christmas Day, he was much better and he and Jameson tore into their presents. Jackson's fav was his Fisher Price work light and Jameson loved Dr. Drill and Fill. Love that the simplest gifts make them the happiest! We then headed off to the other Grandma and Grandpa's where Santa left a box of Lincoln Logs (and his hat) on the porch.
J wasn't super cooperative at his eye appointment last week. A new person was training and he kept looking at Veronica (our usual orthoptist, aka Veronica Harmonica) for direction. He did a little worse than usual, so if it stays that way at the next visit, we may have to start patching again. I'm sure he will love that. Hopefully, it was just the new person throwing him off.
This week we went to dental clinic and we saw Veronica in the waiting room with her daughter. I said, "J, look who's here" and he looked at her and reached up to feel for his glasses (which were laying on the kitchen floor).
J really, really dislikes the dentist. But, I have to say, this is the best he's done. He allowed back x-rays to be taken, which we haven't gotten to do in the past. And, the news wasn't good. The Dr. found another supernumerary tooth on the left side (he also has one in the front) and his right 6 year molar is growing into the tooth in front of it. All three will need to be pulled at some point. The Dr. was going to consult with his attendings and see what their thoughts were. He said usually they consult "the literature" for guidance for kids with rarer syndromes, but he doubts there's anything out there on trisomy 4p. I told this dentist this was his chance to be published! I'm terrified about how J will handle the extractions and if it will impact his eating. He's surprised me before.
Object du Jour: The iPad. Christmas toys are way fun, but not as cool at the iPad. I just cleared 983 of J's self portraits from the iPad this morning. Maybe I'll post some, they are pretty darn funny!
12.15.2011
J sings the Chipmunks...
Monday was J's Christmas program at school. I was told he would be participating, but I was really nervous about how he would handle all the stimulation of the singing, the audience, standing on the stage...all that fun stuff. My child rocked it! Well, he stood there with his fingers in his ears, didn't cry, didn't attempt to take off running, so in my book, that's rockin' it! I'm so proud of him! They sand the Chipmunk Song by the Chipmunks and J thinks it's really funny that I know the words to that song! Also, the word "Hula Hoop" is hysterical! Unfortunately, I don't have any pictures because I was in the very.last.row. Drat. But, I did order a DVD from school of the program, so maybe I'll be able to do something with that.
Getting ready for Christmas! Jackson keeps telling me he needs a mirror and a garage for Christmas. Hmmm. Jameson just wants everything. He's getting to the stage where he wants everything he sees on TV.
The tree is up and Jackson makes sure to remind me to turn it on every morning. He's done so well with leaving it alone and not pulling the ornaments off. This is the first year for that!
Eye and dental clinics coming up in Dec.
Object du Jour: The iPad. The child is obsessed and works it better than I do!
Getting ready for Christmas! Jackson keeps telling me he needs a mirror and a garage for Christmas. Hmmm. Jameson just wants everything. He's getting to the stage where he wants everything he sees on TV.
The tree is up and Jackson makes sure to remind me to turn it on every morning. He's done so well with leaving it alone and not pulling the ornaments off. This is the first year for that!
Eye and dental clinics coming up in Dec.
Object du Jour: The iPad. The child is obsessed and works it better than I do!
11.12.2011
Woo Hoo!
GI this past week...J gained almost 4 lbs and is now at 93% of his ideal body weight! I'm so thrilled! Those Sunbutter sammiches are totally paying off! Granted, we still need to expand those food horizons, but for now, I'll take it!
We spent the last few days at a hotel with a waterpark near my hometown. The boys were in heaven! Their cousin came over and all three went "swimming" in the jacuzzi in our room. Jameson didn't understand why they had to wear swimsuits in the "big bathtub."
Then we went to visit my parents and their new Border Collie puppy. What a cutie she is! Unfortunately, I think I'm allergic. She licked my neck when I held her and ended up with a necklace of hives.
Today we're off to Trainfest. Jackson is so excited. He asks to go whenever the commercial comes on, but first it's off to Whole Foods to spend my Groupon on as many jars of Sunbutter as I can!
Object du Jour: Eric Carle's Brown Bear book. He loves it!
We spent the last few days at a hotel with a waterpark near my hometown. The boys were in heaven! Their cousin came over and all three went "swimming" in the jacuzzi in our room. Jameson didn't understand why they had to wear swimsuits in the "big bathtub."
Then we went to visit my parents and their new Border Collie puppy. What a cutie she is! Unfortunately, I think I'm allergic. She licked my neck when I held her and ended up with a necklace of hives.
Today we're off to Trainfest. Jackson is so excited. He asks to go whenever the commercial comes on, but first it's off to Whole Foods to spend my Groupon on as many jars of Sunbutter as I can!
Object du Jour: Eric Carle's Brown Bear book. He loves it!
11.09.2011
You say it's your Birfday....
J was messing around with his Magna Doodle this morning and I looked down and he had written the number 10, all on his own. I asked him to make an 8 and he did! He also made a 7 on request. Wow. This kid never ceases to amaze me.
Randy took the boys to the VFW the other night to see some friends we haven't seen in awhile. I stayed home, just to bask in some silence for a few hours. Jameson came home yelling, "MOMMY! I went to the EFW with Daddy and Elvis showed up. It was creepy! Next time we go see Amy, we're going to have Stir Fry with a fish on top." I guess J tried to swipe Elvis' mic, which didn't go over well and Jameson also came home with a pocket full of screw off wine tops and 2.00. Only my kids.
OK. So according to the site I use to see where people are coming from to look at my blog...many of you are finding me because you are Googling the definition of the word "birfday." I used it in one post, a few years ago now, to show how J pronounced the word "Birthday." According to urbandictionary.com, there are a few other meanings I was unaware of. So, if you are looking for more detailed info, pop on over there. You're welcome. And for the person looking for "Whole Foods sneeze into hand, " I can't help. Sorry.
Object du Jour: Various magnetic letters and the Magna Doodle.
Randy took the boys to the VFW the other night to see some friends we haven't seen in awhile. I stayed home, just to bask in some silence for a few hours. Jameson came home yelling, "MOMMY! I went to the EFW with Daddy and Elvis showed up. It was creepy! Next time we go see Amy, we're going to have Stir Fry with a fish on top." I guess J tried to swipe Elvis' mic, which didn't go over well and Jameson also came home with a pocket full of screw off wine tops and 2.00. Only my kids.
OK. So according to the site I use to see where people are coming from to look at my blog...many of you are finding me because you are Googling the definition of the word "birfday." I used it in one post, a few years ago now, to show how J pronounced the word "Birthday." According to urbandictionary.com, there are a few other meanings I was unaware of. So, if you are looking for more detailed info, pop on over there. You're welcome. And for the person looking for "Whole Foods sneeze into hand, " I can't help. Sorry.
Object du Jour: Various magnetic letters and the Magna Doodle.
Subscribe to:
Posts (Atom)
