Eye clinic today. J's eyes are still 20/50, which the orthoptist is happy about because he hasn't gotten worse. So, we'll decrease his patching to two days (4 hours total) a week and check again in 2 months to make sure the level is still consistent. Then we'll go down to 2 hours a week and if he's still doing the same, we'll stop the patching and he'll only wear the glasses.
Got the written results of the allergy labs in the mail today. Haven't gotten these before, so it's interesting to see the actual levels. The items tested are rated 0-6 (absent to very high) depending on the blood levels. He's "moderate" in milk and whey and "high" in peanut. He's very close to "very high" for peanut.
Got to break out the sidewalk chalk, bikes and lawnmowers for the fellas this afternoon while I did some yard work. I roped J2 into picking up pinecones for me for a bit until the novelty wore off.
J is "Star of the Week" this week at school. We made a poster with pictures of J and his family, his favorite song and color and things he likes. So we glued on pictures of iPods, Ellen, the Elmo microwave, toy catalogs and Yo Gabba Gabba. He did a great job coloring it and helping me write his name and mark his age by drawing candles on a cake.
Object du Jour: We did take an iPod to eye clinic today, but he's been really loving that new Leap Frog letter toy.
3.30.2010
3.29.2010
3.27.2010
Waitin' on the Tooth Fairy!
J lost his first tooth this morning! I was pulling off his turtleneck and saw a bit of blood on his lip. I looked in his mouth and saw the gaping hole. It's the tooth that he hit on the shopping cart and the dentist told us it would probably fall out earlier than normal. J doesn't seem to be bothered by it at all. The hole unfortunately allows more food to fall out of his mouth, but hopefully he'll get the hang of it quick.
The Tooth Fairy is bringing J a Leap Frog letter game. He doesn't understand the concept of money, so at least this is something educational.
We went on an Easter Egg Hunt this morning. There were a lot of people there! J didn't seem to have a clue what was happening, but he didn't cry or panic. Jameson had to hold onto both buckets. He liked petting the real bunny and gathering up the eggs. Neither kid was a fan of the Easter Bunny himself. They both loved opening up the eggs they found and seeing what was inside. There were some really cool treats like an ice cream cone from Culver's, a kid's meal from Rocky Rococo's and a 5.00 gift card to Stonefire Pizza plus game tokens from Stonefire, candy, and little Easter trinkets. I'll post pics after we get them off the camera.
Object du Jour: J had to carry an iPod all through the egg hunt.
The Tooth Fairy is bringing J a Leap Frog letter game. He doesn't understand the concept of money, so at least this is something educational.
We went on an Easter Egg Hunt this morning. There were a lot of people there! J didn't seem to have a clue what was happening, but he didn't cry or panic. Jameson had to hold onto both buckets. He liked petting the real bunny and gathering up the eggs. Neither kid was a fan of the Easter Bunny himself. They both loved opening up the eggs they found and seeing what was inside. There were some really cool treats like an ice cream cone from Culver's, a kid's meal from Rocky Rococo's and a 5.00 gift card to Stonefire Pizza plus game tokens from Stonefire, candy, and little Easter trinkets. I'll post pics after we get them off the camera.
Object du Jour: J had to carry an iPod all through the egg hunt.
3.26.2010
Don't snoozie or you'll miss the newsie!
J started saying that yesterday. He thinks it's hysterical!
The doctor from the allergy clinic called today. No change in milk or peanut, so he's still allergic. She did say that the data on milk is older and there's a slim chance he could outgrow it by age 12. Peanut is probably lifelong. Peanuts are pretty easy to avoid for the most part. I would love to see him outgrow milk, as that would open up so many more foods to him. I guess we just wait and see.
J is "Star of the Week" next week in JK. He also has to bring snack, so "French Fries" for everyone!
J's new food: toast. He's fascinated by it. I made him a slice yesterday and he told me he needed "jelly" aka Sunbutter on it because that's what I was having. I put a thin layer on the toast and he nibbled a bit on it and didn't seemed bothered by the Sunbutter. Yay!
Going to bed has been really rough for J the last few weeks. He asks nightly to sleep in our bed. He starts out in his bed and one night we found him asleep on our floor and another night asleep in our bed. I'm not sure what the issue is; I wish he could tell us more. Nights when he's on the pump aren't a problem; he knows he can't get out of bed.
At school, J now has an "iPod." His teacher made a iPod that has changeable pictures from the PECS program that show J where he's supposed to go. When I drop him off at school, she hands him the iPod with a picture of the classroom and he goes straight there. She said so far it's been helpful at keeping him focused on where he's supposed to going or what he's supposed to be doing with minimal distractions. Hopefully, it continues! Clever idea!
Tomorrow we're going to attempt an Easter Egg Hunt with the fellas. I know J2 will love it, we'll see how it goes with J.
Object du Jour: "Mommy's Book" J's speech therapist made him a book last year of different rooms in a house with objects labelled. Jackson has really been obsessing over this lately. He calls it Mommy's book, but I have no clue why.
The doctor from the allergy clinic called today. No change in milk or peanut, so he's still allergic. She did say that the data on milk is older and there's a slim chance he could outgrow it by age 12. Peanut is probably lifelong. Peanuts are pretty easy to avoid for the most part. I would love to see him outgrow milk, as that would open up so many more foods to him. I guess we just wait and see.
J is "Star of the Week" next week in JK. He also has to bring snack, so "French Fries" for everyone!
J's new food: toast. He's fascinated by it. I made him a slice yesterday and he told me he needed "jelly" aka Sunbutter on it because that's what I was having. I put a thin layer on the toast and he nibbled a bit on it and didn't seemed bothered by the Sunbutter. Yay!
Going to bed has been really rough for J the last few weeks. He asks nightly to sleep in our bed. He starts out in his bed and one night we found him asleep on our floor and another night asleep in our bed. I'm not sure what the issue is; I wish he could tell us more. Nights when he's on the pump aren't a problem; he knows he can't get out of bed.
At school, J now has an "iPod." His teacher made a iPod that has changeable pictures from the PECS program that show J where he's supposed to go. When I drop him off at school, she hands him the iPod with a picture of the classroom and he goes straight there. She said so far it's been helpful at keeping him focused on where he's supposed to going or what he's supposed to be doing with minimal distractions. Hopefully, it continues! Clever idea!
Tomorrow we're going to attempt an Easter Egg Hunt with the fellas. I know J2 will love it, we'll see how it goes with J.
Object du Jour: "Mommy's Book" J's speech therapist made him a book last year of different rooms in a house with objects labelled. Jackson has really been obsessing over this lately. He calls it Mommy's book, but I have no clue why.
3.18.2010
It's all fun and games until Elvis gets lost at the Hopstible
GI today. 29 lbs, 1 oz. 38 inches. We saw beh psych, speech, nurse and nutrition. They are happy with his small weight gain considering the pound he lost when he was sick. We talked about food ideas, ABA therapy and how Jackson is doing in general. They thought that Beyonce as a motivator to try new foods was pretty funny. Surprisingly, they don't have any other Beyonce addicts on their patient lists.
Overall, they were pleased with how he is doing and were impressed with how well he ate the crackers he stole out of my bag.
After we met with the team, we headed downstairs to the lab for allergy and GI panel blood work. Poor J cried so hard and kept yelling, "Take it out, take it out!" She took 8 vials of blood! And to add insult to injury, she put a circular band-aid on the wound.
J had to bring a fistful of iPods along to the Hopstible and unfortunately, Elvis didn't make it home. We lost him somewhere between GI Clinic and the Lab. The woman at the lab looked at us like we were nuts with J yelling, "Finda Elvis!" over and over. I really wonder what the person who finds him will think.
On the way down the skywalk to the parking ramp, J kept collapsing and between sobs would yell, "Finda Elvis", "Rectangle Bamdaid", and "Make a new Elvis!" I made him a new Elvis and packed him up and sent him to school. Hopefully, all was right with the world at school.
Object du Jour: The iPods.
Overall, they were pleased with how he is doing and were impressed with how well he ate the crackers he stole out of my bag.
After we met with the team, we headed downstairs to the lab for allergy and GI panel blood work. Poor J cried so hard and kept yelling, "Take it out, take it out!" She took 8 vials of blood! And to add insult to injury, she put a circular band-aid on the wound.
J had to bring a fistful of iPods along to the Hopstible and unfortunately, Elvis didn't make it home. We lost him somewhere between GI Clinic and the Lab. The woman at the lab looked at us like we were nuts with J yelling, "Finda Elvis!" over and over. I really wonder what the person who finds him will think.
On the way down the skywalk to the parking ramp, J kept collapsing and between sobs would yell, "Finda Elvis", "Rectangle Bamdaid", and "Make a new Elvis!" I made him a new Elvis and packed him up and sent him to school. Hopefully, all was right with the world at school.
Object du Jour: The iPods.
3.17.2010
Happy St. Paddy's!!
I have both boys dressed in green to celebrate their 1/4 Irishness! He was yelling "Uff Da" this morning in his green shirt; I guess to celebrate his 1/2 Norwegianness! Green is totally J's color. I didn't realize it at the time, but I dressed in him green for all 3 of his school portraits.
Jackson has just been amazing me with his language lately! He was sitting at dinner last night and he said, "Mommy, come over here." I know, it doesn't sound like much, but a whole appropriate sentence with perfect eye contact!
Eating has been going well! He tried a Beech Nut puree last night of sweet corn and rice. I mixed in some sweet potatoes to make it a little more familiar to J and he ate two jars! As I'm typing this he's standing here munching on "french fries" aka Veggie Stix. He still prefers dry and crunchy over everything else, but we're going to keep working on it!
Stopped at the health food store last night after hearing that there's such a thing as "dairy-free" mac and cheese in the frozen section. They didn't have any, but I did find a boxed dairy-free
mac and cheese to try. Hopefully, J will like it. I'm on a mission to find foods that J can eat for lunches next year that will not look too odd to the kids around him.
Just rambling today, I'm sure I'll more to say tomorrow after the GI visit.
Object du Jour: The Ellen and Elvis iPods. Good thing they're easily replaceable, J loves to chew on them. Sorry about the lack of pictures lately, the camera charger is MIA.
Jackson has just been amazing me with his language lately! He was sitting at dinner last night and he said, "Mommy, come over here." I know, it doesn't sound like much, but a whole appropriate sentence with perfect eye contact!
Eating has been going well! He tried a Beech Nut puree last night of sweet corn and rice. I mixed in some sweet potatoes to make it a little more familiar to J and he ate two jars! As I'm typing this he's standing here munching on "french fries" aka Veggie Stix. He still prefers dry and crunchy over everything else, but we're going to keep working on it!
Stopped at the health food store last night after hearing that there's such a thing as "dairy-free" mac and cheese in the frozen section. They didn't have any, but I did find a boxed dairy-free
mac and cheese to try. Hopefully, J will like it. I'm on a mission to find foods that J can eat for lunches next year that will not look too odd to the kids around him.
Just rambling today, I'm sure I'll more to say tomorrow after the GI visit.
Object du Jour: The Ellen and Elvis iPods. Good thing they're easily replaceable, J loves to chew on them. Sorry about the lack of pictures lately, the camera charger is MIA.
3.11.2010
Apple seriously needs to look into making an Ellen iPod.
We had J's 3 year update IEP meeting yesterday. I was very pleased with what everyone had to say about him (man, they all know him backward and forward!) The plan will be to have him go to summer school for education and speech and then stay at his current school next year for 5K and Spec Ed plus therapies. I really wanted to keep him where he is now and luckily everyone (all 12 of them, nope not intimidating at all!) agreed. He will be in school all day, which means lunch and recess and he will also get adaptive PE.
Sadly, his speech therapist is retiring and he'll have someone new next year. That's really a bummer because he talks about her a lot and she celebrates J's achievements just as much as I do. We'll really miss her.
I found out at the meeting that J actually has a few little friends in the JK class. It makes me so happy to hear that! There's Catherine, who was the peer in his class last year and I think J is crushing on her a little, Aidan, who he's known his whole time in EC, Victoria, who greeted J today when we got to school and Christian, who thinks coconuts are just as funny as J does. His teacher told me that the kids are all very careful and protective with J and slow down on the stairs when he's on them. I hope it stays this way and no one ends up being mean to him because he's different.
Allergy clinic visit today. Saw the new dr., she seems nice, but was in/out very quickly. Our old allergist moved back to Israel. We really liked him and I was sad to see him go. The plan is do another RAST for milk and peanuts and if, by chance, the peanut comes back negative, we'll do the skin test just to make sure. I'm going to hold onto the script and have the blood draw done when they do his GI panel; I want to minimize the sticks as much as possible.
GI/Feeding Team next week. According to the scale at Allergy, J is 29 lbs, 2 oz, so he's gained back what he lost when he was sick and then some. Hopefully he break 30 lbs soon!
J has been much more interested in food lately. He absolutely loves these Veggie Stick things that are a baked crunchy snack made out of vegetables. Between J and J2 (and maybe I helped a little) the bag is almost gone already!
Object du Jour: The Ellen "iPod." The resident asked J was he was holding and he said, "Ellen, Ellen, Ellen." I told her it was an Ellen DeGeneres iPod and she just gave me an odd look and went back to asking milk related questions.
Sadly, his speech therapist is retiring and he'll have someone new next year. That's really a bummer because he talks about her a lot and she celebrates J's achievements just as much as I do. We'll really miss her.
I found out at the meeting that J actually has a few little friends in the JK class. It makes me so happy to hear that! There's Catherine, who was the peer in his class last year and I think J is crushing on her a little, Aidan, who he's known his whole time in EC, Victoria, who greeted J today when we got to school and Christian, who thinks coconuts are just as funny as J does. His teacher told me that the kids are all very careful and protective with J and slow down on the stairs when he's on them. I hope it stays this way and no one ends up being mean to him because he's different.
Allergy clinic visit today. Saw the new dr., she seems nice, but was in/out very quickly. Our old allergist moved back to Israel. We really liked him and I was sad to see him go. The plan is do another RAST for milk and peanuts and if, by chance, the peanut comes back negative, we'll do the skin test just to make sure. I'm going to hold onto the script and have the blood draw done when they do his GI panel; I want to minimize the sticks as much as possible.
GI/Feeding Team next week. According to the scale at Allergy, J is 29 lbs, 2 oz, so he's gained back what he lost when he was sick and then some. Hopefully he break 30 lbs soon!
J has been much more interested in food lately. He absolutely loves these Veggie Stick things that are a baked crunchy snack made out of vegetables. Between J and J2 (and maybe I helped a little) the bag is almost gone already!
Object du Jour: The Ellen "iPod." The resident asked J was he was holding and he said, "Ellen, Ellen, Ellen." I told her it was an Ellen DeGeneres iPod and she just gave me an odd look and went back to asking milk related questions.
3.07.2010
The Magic Kingdom
We just booked our hotel for DisneyWorld in October! I'm so excited! Jameson is going to love it! I'm worried about Jackson's reaction.
I ordered him a set of sounding blocking ear muffs, which came Friday and he wants no part of. Jameson has been wearing them on his forehead since I took them out of the box. My plan is to get J used to them over the summer at festivals and State Fair, places he normally says are "too loud." Visually, I know he'll love Disney, auditorily, not so much.
The boys played in the noodle bucket most of the morning. Jameson loves to scoop, dump and "cook." Jackson popped the dried noodles in his mouth the second I opened the container. He'll eat that, but not regular food. Now we're off to find something to do outside because it's supposed to be in the 40's today. Heat wave!!
Object du Jour: The Ellen iPod with a side of noodles.
I ordered him a set of sounding blocking ear muffs, which came Friday and he wants no part of. Jameson has been wearing them on his forehead since I took them out of the box. My plan is to get J used to them over the summer at festivals and State Fair, places he normally says are "too loud." Visually, I know he'll love Disney, auditorily, not so much.
The boys played in the noodle bucket most of the morning. Jameson loves to scoop, dump and "cook." Jackson popped the dried noodles in his mouth the second I opened the container. He'll eat that, but not regular food. Now we're off to find something to do outside because it's supposed to be in the 40's today. Heat wave!!
Object du Jour: The Ellen iPod with a side of noodles.
3.06.2010
In the interest of equal time...
March is also:
Save Your Vision Month
National Kidney Month
Workplace Eye Wellness Month
and contains:
School Breakfast Week
National Problem Gambling Awareness Week (I need to have a talk with Jackson about this)
National Poison Prevention Week
and for the love of everything holy: National Root Canal Awareness Week *shudder*
Last night we went to watch a friend show his Great Dane, Lucy. Holy cow, that's a big dog and she's just a puppy! She stood a head taller than the boys, but is very sweet.
Jackson was afraid at first, and kept telling me the "Arf Arf too loud" whenever a dog would bark. (There were shows of different breeds all over the auditorium) I told him the doggies were talking to each other. He seemed to accept that and was pretty much OK the rest of our time there.
Poor Lucy got second place because she had a bit of a swollen foot and couldn't trot they way the judge wanted. She didn't seem to mind though and was happy to lay on the floor and let the boys pet her.
This morning both boys have asked to go back to "Lucy's house."
Object du Jour: Still the Ellen iPod.
Save Your Vision Month
National Kidney Month
Workplace Eye Wellness Month
and contains:
School Breakfast Week
National Problem Gambling Awareness Week (I need to have a talk with Jackson about this)
National Poison Prevention Week
and for the love of everything holy: National Root Canal Awareness Week *shudder*
Last night we went to watch a friend show his Great Dane, Lucy. Holy cow, that's a big dog and she's just a puppy! She stood a head taller than the boys, but is very sweet.
Jackson was afraid at first, and kept telling me the "Arf Arf too loud" whenever a dog would bark. (There were shows of different breeds all over the auditorium) I told him the doggies were talking to each other. He seemed to accept that and was pretty much OK the rest of our time there.
Poor Lucy got second place because she had a bit of a swollen foot and couldn't trot they way the judge wanted. She didn't seem to mind though and was happy to lay on the floor and let the boys pet her.
This morning both boys have asked to go back to "Lucy's house."
Object du Jour: Still the Ellen iPod.
3.05.2010
Faces of Trisomy video
Here is the Faces of Trisomy video from the 2009 SOFT Conference in VA. Pictures taken by Jude Wolpert. Unfortunately, we didn't make it last year, but I hope to make it to the meeting in South Dakota in July.
Object du Jour: Nothing cooler than an Ellen iPod.
3.04.2010
TRIS
http://web.coehs.siu.edu/Grants/TRIS/kidsofTRISDateOrder.html
Here's another great organization you may want to learn more about:
TRIS - Tracking Rare Incidence Syndromes
TRIS has been collecting data on kids with different types of trisomy and they make this data available to parents, doctors and other professionals working with kids with trisomies to increase the global knowledge base. This helps determine courses of treatment and therapies, but also helps show that a trisomy dx is not always, "incompatible with life" as some doctors like to say.
Jackson is on his 3rd year of participation in this project. He was also one of their featured kids in 2007. You can see his little two year old face in the link above. Wow, that seems like forever ago!
Object du Jour: I can now draw iPods in my sleep.
Here's another great organization you may want to learn more about:
TRIS - Tracking Rare Incidence Syndromes
TRIS has been collecting data on kids with different types of trisomy and they make this data available to parents, doctors and other professionals working with kids with trisomies to increase the global knowledge base. This helps determine courses of treatment and therapies, but also helps show that a trisomy dx is not always, "incompatible with life" as some doctors like to say.
Jackson is on his 3rd year of participation in this project. He was also one of their featured kids in 2007. You can see his little two year old face in the link above. Wow, that seems like forever ago!
Object du Jour: I can now draw iPods in my sleep.
3.03.2010
FYI
http://www.marchofdimes.com/professionals/14332_1209.asp
For more information on chromosomal abnormalities, here's a link to the March of Dimes website. It's written in parent-friendly language, which many of the pages I find are not.
For more information on chromosomal abnormalities, here's a link to the March of Dimes website. It's written in parent-friendly language, which many of the pages I find are not.
3.02.2010
March is Trisomy Awareness Month!
Please keep all these amazing babies, kids and adults in your thoughts and prayers. Not all trisomy children are as healthy as Jackson. We are very, very lucky and I remind myself of that daily.
Please consider a donation to SOFT:
Trisomy Awareness Month
Support Organization for Trisomy 18, 13 & Related Disorders
2982 South Union Street
Rochester, NY 14624-1926
(800) 716-SOFT (7638)
(585) 594-4621
www.trisomy.org
Please consider a donation to SOFT:
Trisomy Awareness Month
Support Organization for Trisomy 18, 13 & Related Disorders
2982 South Union Street
Rochester, NY 14624-1926
(800) 716-SOFT (7638)
(585) 594-4621
www.trisomy.org
Same stuff, different day.
We're wrapping up our last morning in the Dells. We ended up staying at the Great Wolf Lodge instead of the Kalahari because the Kalahari only had one night for us instead of two and they were sold out the other night. We haven't stayed here before, but it's pretty nice. I love the areas in the waterpark they have for the smaller kids. Jameson loved it, especially the play jet skis with the squirting handlebars. J wasn't a huge fan of anything. See the picture in a previous post with J with his fingers in his ears? Imagine that same pose only with a soaking wet child in a bathing suit.
He eventually came around on our second night and was OK if I held him in the larger pool. I had to sing parts of the Vampire Weekend song to make it more bearable. After a bit, he was smiling and laughing. He thought the giant water-dumping bucket was hysterical, if only a little bit too loud.
J didn't like the arcade much either. He stood with his fingers in his ears with tears leaking out of his eyes while Jameson played a game. J2 won a rubber snake out of a machine on the first try. I had to spend another 6 tokens to get a sobbing J one too. Maybe I shouldn't just let Jameson try again, he was much better at the game then I was!
This has been a nice little vakay! Back to reality this afternoon!
Object du Jour: I wasn't thinking and only brought one "iPod." It ripped in half after J sucked on it all weekend. He was not a happy camper after that. The snake has helped him feel a little better.
He eventually came around on our second night and was OK if I held him in the larger pool. I had to sing parts of the Vampire Weekend song to make it more bearable. After a bit, he was smiling and laughing. He thought the giant water-dumping bucket was hysterical, if only a little bit too loud.
J didn't like the arcade much either. He stood with his fingers in his ears with tears leaking out of his eyes while Jameson played a game. J2 won a rubber snake out of a machine on the first try. I had to spend another 6 tokens to get a sobbing J one too. Maybe I shouldn't just let Jameson try again, he was much better at the game then I was!
This has been a nice little vakay! Back to reality this afternoon!
Object du Jour: I wasn't thinking and only brought one "iPod." It ripped in half after J sucked on it all weekend. He was not a happy camper after that. The snake has helped him feel a little better.
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