I picked J up at summer school last week and he had a wad of purple, green and orange fuzz in the armpit of his shirt. I asked the teacher if Jackson had a clown in a headlock at school that day. She stared at me and said that it was from an art project. I'm pretty sure she doesn't think I'm funny.
Jackson is fascinated by the fact that letters can be put together to make words. He makes me spell things all day long. He's even starting to spell things on his own. My suspicion is that J may not be a phonetic speller/reader. I think he may take the whole language/memorization approach. Only time will tell. But, I know he'll get there!
Follow up on Friday with the ENT. He feels J is doing really well and doesn't see a need at this time to repeat the bronch. I'm happy about that. The recovery from bronchs/endos is always really rough for J.
Dental appt. Finally got a good set of x-rays. The dentist is pretty sure J has some missing teeth and he also has a "false tooth" which will need to be pulled when it comes in. The decision as to how to handle all this will be made as the teeth start moving. My hope is that because his jaw is so small, the missing teeth may not matter so much. We'll see.
J has been making excellent progress in the eating arena. He loves Sunbutter and jelly on toast and in sandwiches and is doing a great job eating mixed textures. He's still pretty rigid on some things, but I'm happy with the progress he's making.
J's sound aversions have been really improving. We've gone to some local festivals and haven't needed the headphones. Monkey George has been J's buddy in handing the hard stuff.
Jameson is something else. He's hard-headed and wants to do everything himself. But he can be so sweet and funny, it all balances out (most of the time). He wants to use scissors and glue sticks, write letters and help in the kitchen. He loves sandboxes, swimming and making friends at the park. I have awesome kids!
My leg is slowly getting better. It's still really tight in the mornings and I have frequent "charley horses" and I'm pretty sure my scar scares old ladies at the pool. Back to the neurosurgeon for a repeat MRI in Sept. It the tumor comes back, we'll probably do radiation therapy.
Object du Jour: Monkey George and a bucket of Blue's Clues toys. J's been all about BC lately.
I'll post some new pictures as soon as I can.
5.29.2011
Ch-ch-ch-changes
So, Jackson is finally better. He still has a wet sounding cough, but he's back to eating and playing normally. He's been saying, "Go for it!" all week. Not sure where that came from. Got his next appointment scheduled with the ENT for July, so we'll see where we end up then.
Some bad news from the week: Both J's primary special ed teacher and his adaptive phy ed teacher are leaving. He loves both of them so much, especially Mr. S. I've met the new spec ed teacher, but don't know who's going to replace Mr. S. It's a good thing J doesn't really understand what's going on. J's swimming is up in the air now. I don't know if the new adaptive phy ed teacher will continue that or not next year.
Object du Jour: A box of flashcards of nouns and verbs that J loves pouring over. I cleaned out a closet today and he's so happy to be reunited with his cards!
Some bad news from the week: Both J's primary special ed teacher and his adaptive phy ed teacher are leaving. He loves both of them so much, especially Mr. S. I've met the new spec ed teacher, but don't know who's going to replace Mr. S. It's a good thing J doesn't really understand what's going on. J's swimming is up in the air now. I don't know if the new adaptive phy ed teacher will continue that or not next year.
Object du Jour: A box of flashcards of nouns and verbs that J loves pouring over. I cleaned out a closet today and he's so happy to be reunited with his cards!
5.26.2011
"The ambulance scared you."
Soooo. It's been a long week. On Monday, Jameson and I decided to head to the mall. The boys needed some t-shirts for summer, Daddy needed socks and I wanted some new Old Navy "Slip Slops" as J2 calls them. We shopped, played, ate lunch and headed home around noon. What I didn't know was that my phone was "blowin' up yo" in my purse.
We got home and I checked my Facebook page. There was a message from my friend Cathy saying, "Where are you? There's been an incident at school and they ambulanced J to Children's." My heart starting racing and the phone rang and it was the ER doctor from the hospital telling me I needed to get there right away. Randy was in a meeting in Green Bay and his phone was off, so no one could get ahold of him.
Raced to the ER, of course everyone in front of me was doing 2 mph (or maybe it just felt like it). Left my car in the valet lane and found the admitting nurse. She took me back to J's room and he wasn't there. The ER doc and ENT met me and explained that he had gone for a chest x-ray. A few minutes later, J came back, carried by his most wonderful classroom teacher and she filled me in on what happened.
At lunch, J was eating his Pringles sticks and he choked on one. They tried everything they could to get it out, but his voice was getting raspier and he was having trouble breathing. The principal made the decision to call 911.
The ER called J's regular ENT tp come down to check him out. Dr. R wanted to take J up to surgery to do a bronchoscopy to make sure there was nothing in his lungs that could cause all sorts of issues like pneumonia. They had J prepped and ready to go pretty quickly. J was still wheezing and barky coughing.
He was in surgery about 30 minutes and Dr. R came out and told me that J's airway is very swollen. He felt that J was on the verge of a croup episode, so his airway was probably mildly irritated and the pretzel stick made his airway react violently. Dr. R decided to keep J overnight for observation and put him on a 3 day course of steroids to keep his airway calm. He wants see J back in a month and repeat the bronch to see what J's airway looks like when his healthy. If there are any issues at that time we'll decide what to do then.
Wow. I hope I never, ever get a phone call(s) like that again! J was such a trooper. The IV made him horribly angry, but he took everything else in stride. I can't thank the wonderful staff at his school enough for taking such good care of him and treating him as their own. I made them all cake pop bouquets as a thank you, but that can't begin to express how thankful I am.
Poor J keeps talking about the ambulance and how it "scared you." His teacher went with him in the ambulance and she said he kept telling her, "Jackson and Mrs. W go for a ride?" I'm so relieved she went with him and he didn't have to go alone. She said he didn't cry at all until he saw me in the ER. Isn't that what we all do? We don't cry until we see our Mamas, because then we know we're taken care of and it's going to be OK.
Object du Jour: MG. The floor staff gave Jackson a pillow pet, which I think is a hamster, bear or odd looking cat. Jackson was having none of it and kept tossing it on the floor. Daddy's first order of business when he arrived at the "hobstible" was to fetch MG from my car. Seeing MG put the first smile on J's face I had seen our whole time at the hospital.
We got home and I checked my Facebook page. There was a message from my friend Cathy saying, "Where are you? There's been an incident at school and they ambulanced J to Children's." My heart starting racing and the phone rang and it was the ER doctor from the hospital telling me I needed to get there right away. Randy was in a meeting in Green Bay and his phone was off, so no one could get ahold of him.
Raced to the ER, of course everyone in front of me was doing 2 mph (or maybe it just felt like it). Left my car in the valet lane and found the admitting nurse. She took me back to J's room and he wasn't there. The ER doc and ENT met me and explained that he had gone for a chest x-ray. A few minutes later, J came back, carried by his most wonderful classroom teacher and she filled me in on what happened.
At lunch, J was eating his Pringles sticks and he choked on one. They tried everything they could to get it out, but his voice was getting raspier and he was having trouble breathing. The principal made the decision to call 911.
The ER called J's regular ENT tp come down to check him out. Dr. R wanted to take J up to surgery to do a bronchoscopy to make sure there was nothing in his lungs that could cause all sorts of issues like pneumonia. They had J prepped and ready to go pretty quickly. J was still wheezing and barky coughing.
He was in surgery about 30 minutes and Dr. R came out and told me that J's airway is very swollen. He felt that J was on the verge of a croup episode, so his airway was probably mildly irritated and the pretzel stick made his airway react violently. Dr. R decided to keep J overnight for observation and put him on a 3 day course of steroids to keep his airway calm. He wants see J back in a month and repeat the bronch to see what J's airway looks like when his healthy. If there are any issues at that time we'll decide what to do then.
Wow. I hope I never, ever get a phone call(s) like that again! J was such a trooper. The IV made him horribly angry, but he took everything else in stride. I can't thank the wonderful staff at his school enough for taking such good care of him and treating him as their own. I made them all cake pop bouquets as a thank you, but that can't begin to express how thankful I am.
Poor J keeps talking about the ambulance and how it "scared you." His teacher went with him in the ambulance and she said he kept telling her, "Jackson and Mrs. W go for a ride?" I'm so relieved she went with him and he didn't have to go alone. She said he didn't cry at all until he saw me in the ER. Isn't that what we all do? We don't cry until we see our Mamas, because then we know we're taken care of and it's going to be OK.
Object du Jour: MG. The floor staff gave Jackson a pillow pet, which I think is a hamster, bear or odd looking cat. Jackson was having none of it and kept tossing it on the floor. Daddy's first order of business when he arrived at the "hobstible" was to fetch MG from my car. Seeing MG put the first smile on J's face I had seen our whole time at the hospital.
5.17.2011
Monkey George
Is this not the sweetest picture? Monkey George goes everywhere we go. He rides to school with us in the morning and waits for J in the car until it's time to come home. MG plugged J's ears at the Syttende Mai parade on Sunday to keep the noise out. I don't know what we'd do without MG.GI and Allergy last week. Jackson passed the "baked in dairy" challenge and can now have foods with dairy baked in them. Still no raw dairy yet, but we'll do a challenge for that in August and see where we end up.
GI went pretty well. His weight is down a bit, but they aren't unhappy with it. He got his MIC-key replaced with a new AMT button. The speech therapist thought J's breathing was too noisy, so we were sent to have a lateral head x-ray done to see if there is anything causing a problem. Nope, everything is clear. Just one more thing to add to the day.
Object du Jour: MG.
3.17.2011
"Mommy, how did your butt get so big?"
Sigh. Kids say the darndest things don't they?
Jackson is finally, finally better! He went swimming yesterday with the adaptive phy ed teacher and friends from school. He missed last week, so he was happy to be back! J absolutely adores Mr. S. He talks about him non-stop. I'm nervous with all the budget cuts in our state, that J may lose Mr. S. I really, really hope that doesn't happen. I'll be standing in front of the capitol with a giant sign!
J has GI today and eye clinic tomorrow. Hopefully, good reports on both fronts, but I'm nervous about the weight loss.
Jameson has been a steady stream of questions lately. If I give a dismissive, "Uh-huh" while I'm doing something, I hear, "Mommy! Put your face at me!" Meaning, look at me and give me an answer. The barrage of questions only stops when he's sleeping.
Object du Jour: MG
Jackson is finally, finally better! He went swimming yesterday with the adaptive phy ed teacher and friends from school. He missed last week, so he was happy to be back! J absolutely adores Mr. S. He talks about him non-stop. I'm nervous with all the budget cuts in our state, that J may lose Mr. S. I really, really hope that doesn't happen. I'll be standing in front of the capitol with a giant sign!
J has GI today and eye clinic tomorrow. Hopefully, good reports on both fronts, but I'm nervous about the weight loss.
Jameson has been a steady stream of questions lately. If I give a dismissive, "Uh-huh" while I'm doing something, I hear, "Mommy! Put your face at me!" Meaning, look at me and give me an answer. The barrage of questions only stops when he's sleeping.
Object du Jour: MG
3.12.2011
Mystery Diagnosis: Solved
Strep Throat and Scarlet Fever. J was sent home from school on Thursday with a 99 degree fever. He was crabby, runny nose, bit of a cough. He didn't seem too horribly sick. He slept a bit and woke up vomiting. Poor guy couldn't stop. He was burning up. Took his temp, 101.5. Changed his pukey clothes and found a red rash all over his belly and arms. He was drooling like crazy too.
Called the ped. She told me to take him in to Children's. By the time we got there his fever was up to 102.5 and his heart rate was in the 160s. The PA swabbed his throat and gave him some zofran to stop the vomiting. She came back a few minutes later and that the strep test was positive and she also said he had scarlet fever. We came home after 4 hours with more zofran and amoxicillian. Poor Jackson can't catch a break.
He's much better today, still has a runny nose, but no fever. Now we just need to work on regaining the 2 lbs he lost.
Object du Jour: MG and the two baby MGs that were supposed to be for Easter, but Jameson open the package when it came.
Called the ped. She told me to take him in to Children's. By the time we got there his fever was up to 102.5 and his heart rate was in the 160s. The PA swabbed his throat and gave him some zofran to stop the vomiting. She came back a few minutes later and that the strep test was positive and she also said he had scarlet fever. We came home after 4 hours with more zofran and amoxicillian. Poor Jackson can't catch a break.
He's much better today, still has a runny nose, but no fever. Now we just need to work on regaining the 2 lbs he lost.
Object du Jour: MG and the two baby MGs that were supposed to be for Easter, but Jameson open the package when it came.
3.08.2011
Tell the Easter Bunny I need a laptop and a tent.
Poor J can't seem to shake whatever illness he has. He threw up several times over with weekend and had a low grade fever. He put himself to bed Saturday afternoon and yesterday after school. I'm really worried about weight loss, but I'm keeping him tubed at night and he hasn't gotten sick.
We decided after he fell asleep that germ laden Monkey George needed a trip through the washer. J woke up about 8:00 in tears because MG wasn't in the bed. I felt horrible. Randy ran to Barnes and Noble to get another one (we thought it was best to have a back up), but they didn't have any more. So, I tried to keep J calm while Randy ran MG through the dryer. J fell asleep as soon as MG was back in his arms. I've never, ever seen him so attached to anything before. He's had week or two runs with certain items, but MG hasn't left his side since Christmas. I went on ebay and found an auction for two brand new mini MGs. They look exactly like the one he has except one has a yellow shirt. I'll stick those in his Easter Basket. I think they will make smaller, more portable MG (I hope).
Jameson started asking questions this morning about the Easter Bunny after seeing a story on the news. I told him to make a list of the things he wanted the EB to bring. He told me candy, a new MG, a laptop and tent. Hmmmm, I don't know how the EB is going to fit a laptop and a tent into that tiny basket.
J went on a fieldtrip today to an indoor play area. I hope it goes well. This afternoon we have his 3 year IEP and Jameson's second trip to the dentist. He's all about the free toothbrush!
Object du Jour: MG.
We decided after he fell asleep that germ laden Monkey George needed a trip through the washer. J woke up about 8:00 in tears because MG wasn't in the bed. I felt horrible. Randy ran to Barnes and Noble to get another one (we thought it was best to have a back up), but they didn't have any more. So, I tried to keep J calm while Randy ran MG through the dryer. J fell asleep as soon as MG was back in his arms. I've never, ever seen him so attached to anything before. He's had week or two runs with certain items, but MG hasn't left his side since Christmas. I went on ebay and found an auction for two brand new mini MGs. They look exactly like the one he has except one has a yellow shirt. I'll stick those in his Easter Basket. I think they will make smaller, more portable MG (I hope).
Jameson started asking questions this morning about the Easter Bunny after seeing a story on the news. I told him to make a list of the things he wanted the EB to bring. He told me candy, a new MG, a laptop and tent. Hmmmm, I don't know how the EB is going to fit a laptop and a tent into that tiny basket.
J went on a fieldtrip today to an indoor play area. I hope it goes well. This afternoon we have his 3 year IEP and Jameson's second trip to the dentist. He's all about the free toothbrush!
Object du Jour: MG.
2.27.2011
Maybe I should shoot for once a month?
Wow, it's February already. Where does the time go?
Jackson has been doing so well in school! He loves the Kindergarten class and has made a bunch of little friends who put notes in his backpack. I can't read what they say, but I'm sure they are pretty important!
Jackson has made some leaps in the eating front! He will now eat a whole sandwich with Sunbutter and jelly. I never thought I'd see the day! He's also eating more mixed texture soups and chunkier stews in therapy.
It's finally happened: Jameson has passed Jackson in the weight department. J2 is now 33 lbs and Jackson is 32 lbs. J still has a bit of an edge in height, but I'm sure not for long. The "are they twins" comments are coming at us fast and furious. "Oh, look! Twins, a boy and a girl!" Let's just say J2's haircut last week was not a success. He's got sort of a blonde bob going and he looks like he's channeling Darla from The Little Rascals. I think we're going to need to go in for a revision this week.
Poor Jackson ended up in the ER again a few weeks ago. I got a call from school saying that he'd had an accident and I need to come get him ASAP. I flew to school and found out that he had been running down the hall and ran full speed into the bubbler (water fountain for you non-cheeseheads) and then fell straight back on his head. So the poor guy ended up with huge lumps in the front and back. He was really off in the car and kept saying, "Help me" over and over. I took him in to Children's, they looked him over and no concussion, give him ibuprofen and he'll be fine. Every time he falls, he hits the same spot on his forehead. The upper right corner is all kinda lumps, bumps and scars.
He's been pretty healthy this year except for a icky cold this past week, so he missed a day of school.
I had a fun surgery last week on my knee. I went to the doctor with calf pain that I'd had for months, thinking I had a blood clot (thanks drug commercials running non-stop on CNNHLN!) My doctor ran some bloodwork and took an x-ray. Didn't find anything with the x-ray, but the bloodwork came back off, so she sent me for an ultrasound on my leg. The tech found a "cyst" behind my knee, which the MRI showed to be a Peripheral Nerve Sheath Tumor. Fancy, huh? Saw a neurosurgeon who said it had to come out before it took over my whole knee. They removed it last Tuesday and found that the little bugger was the size of a golf ball! I have a pretty awesome 8-9" incision on the back of my leg, which I'm sure will end up being a crazy wicked scar. A big concern was how the nerve and tumor were put together. If the tumor had invaded the nerve, I might have lost some function in my foot and had to wear a brace to walk. Thankfully, that doesn't seem to be the case so far. I'll start PT next week, walking has been really hard. They don't think the tumor is cancerous just by looking at it, but we won't know for sure until it's biopsied.
The moral of the story: Sometimes news channel drug commercial induced hypochondria isn't such a bad thing.
We're off to the Kalahari for some R&R. I can't swim with my stitches, but the boys are excited to do something fun.
Object du Jour: Flashlights and Monkey George. J2 got a stuffed Curious George for Christmas, which Jackson claimed. He sleeps with it, takes it everywhere and asks for it first thing when he gets home from school. I've never seen him have an type of attachment to a stuffed animal before. He tells me that Monkey George doesn't like the fire drills, but doesn't have any issues with going to school anymore.
Jackson has been doing so well in school! He loves the Kindergarten class and has made a bunch of little friends who put notes in his backpack. I can't read what they say, but I'm sure they are pretty important!
Jackson has made some leaps in the eating front! He will now eat a whole sandwich with Sunbutter and jelly. I never thought I'd see the day! He's also eating more mixed texture soups and chunkier stews in therapy.
It's finally happened: Jameson has passed Jackson in the weight department. J2 is now 33 lbs and Jackson is 32 lbs. J still has a bit of an edge in height, but I'm sure not for long. The "are they twins" comments are coming at us fast and furious. "Oh, look! Twins, a boy and a girl!" Let's just say J2's haircut last week was not a success. He's got sort of a blonde bob going and he looks like he's channeling Darla from The Little Rascals. I think we're going to need to go in for a revision this week.
Poor Jackson ended up in the ER again a few weeks ago. I got a call from school saying that he'd had an accident and I need to come get him ASAP. I flew to school and found out that he had been running down the hall and ran full speed into the bubbler (water fountain for you non-cheeseheads) and then fell straight back on his head. So the poor guy ended up with huge lumps in the front and back. He was really off in the car and kept saying, "Help me" over and over. I took him in to Children's, they looked him over and no concussion, give him ibuprofen and he'll be fine. Every time he falls, he hits the same spot on his forehead. The upper right corner is all kinda lumps, bumps and scars.
He's been pretty healthy this year except for a icky cold this past week, so he missed a day of school.
I had a fun surgery last week on my knee. I went to the doctor with calf pain that I'd had for months, thinking I had a blood clot (thanks drug commercials running non-stop on CNNHLN!) My doctor ran some bloodwork and took an x-ray. Didn't find anything with the x-ray, but the bloodwork came back off, so she sent me for an ultrasound on my leg. The tech found a "cyst" behind my knee, which the MRI showed to be a Peripheral Nerve Sheath Tumor. Fancy, huh? Saw a neurosurgeon who said it had to come out before it took over my whole knee. They removed it last Tuesday and found that the little bugger was the size of a golf ball! I have a pretty awesome 8-9" incision on the back of my leg, which I'm sure will end up being a crazy wicked scar. A big concern was how the nerve and tumor were put together. If the tumor had invaded the nerve, I might have lost some function in my foot and had to wear a brace to walk. Thankfully, that doesn't seem to be the case so far. I'll start PT next week, walking has been really hard. They don't think the tumor is cancerous just by looking at it, but we won't know for sure until it's biopsied.
The moral of the story: Sometimes news channel drug commercial induced hypochondria isn't such a bad thing.
We're off to the Kalahari for some R&R. I can't swim with my stitches, but the boys are excited to do something fun.
Object du Jour: Flashlights and Monkey George. J2 got a stuffed Curious George for Christmas, which Jackson claimed. He sleeps with it, takes it everywhere and asks for it first thing when he gets home from school. I've never seen him have an type of attachment to a stuffed animal before. He tells me that Monkey George doesn't like the fire drills, but doesn't have any issues with going to school anymore.
1.06.2011
I'm a slacker!
Oh look at the adorable turkeys! Gah. Sorry it's been so long! I'm glad the holidays are over and now I get to listen to cacophony (how's that for a .50 word?) of noise from all the talking toys the boys got.
Jackson got a cool Fisher Price kid's iPod type thingy and a digital camera which he loves! Jameson got his walkie talkies and his Jeep, so all is right with the world!
Jameson turned 3 on Tues, where did the time go? He keeps me laughing every single day! We're working on wearing underwear and he told me, "Mom, these underwear live on my butt and there's a pocket for my phone in front."
Jackson has been pretty healthy. He has his endoscopy done last month and they discovered "moderate esophagitis", so they upped his meds and I've noticed a big difference in his eating and he doesn't tell me his belly is "itchy" anymore.
J's conversation skills have taken a huge leap. He's asking more questions, using pronouns and generally more engaged with us. Yay!
Eating is improving too. He's handling more mixed textures in therapy, but the transition to home is still in progress.
Object du Jour: Calendars. J is nuts for calendars! I made him a "star counter" like they have at school and he practices counting off the days. He's also madly in love with Curious George lately. He had to take the stuffed "Monkey George" to school for sharing time this week.
Jackson got a cool Fisher Price kid's iPod type thingy and a digital camera which he loves! Jameson got his walkie talkies and his Jeep, so all is right with the world!
Jameson turned 3 on Tues, where did the time go? He keeps me laughing every single day! We're working on wearing underwear and he told me, "Mom, these underwear live on my butt and there's a pocket for my phone in front."
Jackson has been pretty healthy. He has his endoscopy done last month and they discovered "moderate esophagitis", so they upped his meds and I've noticed a big difference in his eating and he doesn't tell me his belly is "itchy" anymore.
J's conversation skills have taken a huge leap. He's asking more questions, using pronouns and generally more engaged with us. Yay!
Eating is improving too. He's handling more mixed textures in therapy, but the transition to home is still in progress.
Object du Jour: Calendars. J is nuts for calendars! I made him a "star counter" like they have at school and he practices counting off the days. He's also madly in love with Curious George lately. He had to take the stuffed "Monkey George" to school for sharing time this week.
11.24.2010
Don't like the fire drill.
Long few weeks! Spent some time in the Dells, had J's parent/teacher conference, lots of doctor's appointments and just general driving around craziness!
Parent/teacher conferences went really well. His special ed teacher and K teacher are very happy with all that J is doing. He's starting to read/match sight words, put numbers in order and match rhyming words. I never thought I'd see the days when he would do any of that! He's also doing a great job interacting with peers, but needs some help to stay with the group and not wander off.
The only issue is the fire drill. One happened while J was in PT and since then, he hasn't wanted to go back into the PT room and now it's starting to effect him wanting to go to school at all. His team and I have come up with some strategies for him, so we'll see if any of them work. Poor guy cries and clings to me when I drop him off, all because he's terrified there might be a fire drill.
Jackson has met with the special needs clinic (officially discharged!) and had a feeding session with Behavioral Psych and speech. We're trying to get him to try a wider variety of foods. He's not happy about it, but he's now eating toast with Sunbutter on a regular basis.
Special needs clinic referred us to the Developmental Clinic, although I can't get a straight answer from them about what exactly J will be going there for. So, now I'm waiting for a call back next week.
Monday, J has his endoscopy. ENT said they don't need a repeat bronch, and dental didn't return GI's calls (go figure), so we'll be seeing them separately in Dec. Think good thoughts; I'm always worried about the aftermath.
J's adaptive Phy Ed teacher called last night and wants to start taking J with a small group to the Y for swimming on Wednesday ams. Yay! J loves Mr. S so much, he talks about his non-stop. This guy must be a miracle worker if he can get J to kick a ball in order to get a reward of running up the hill behind the school. My child kicked a ball and wants to run? Up a hill no less? Go for it!
Object du Jour: J is currently running around the house with a clear plastic bucket over his head, giggling like a fool.
Parent/teacher conferences went really well. His special ed teacher and K teacher are very happy with all that J is doing. He's starting to read/match sight words, put numbers in order and match rhyming words. I never thought I'd see the days when he would do any of that! He's also doing a great job interacting with peers, but needs some help to stay with the group and not wander off.
The only issue is the fire drill. One happened while J was in PT and since then, he hasn't wanted to go back into the PT room and now it's starting to effect him wanting to go to school at all. His team and I have come up with some strategies for him, so we'll see if any of them work. Poor guy cries and clings to me when I drop him off, all because he's terrified there might be a fire drill.
Jackson has met with the special needs clinic (officially discharged!) and had a feeding session with Behavioral Psych and speech. We're trying to get him to try a wider variety of foods. He's not happy about it, but he's now eating toast with Sunbutter on a regular basis.
Special needs clinic referred us to the Developmental Clinic, although I can't get a straight answer from them about what exactly J will be going there for. So, now I'm waiting for a call back next week.
Monday, J has his endoscopy. ENT said they don't need a repeat bronch, and dental didn't return GI's calls (go figure), so we'll be seeing them separately in Dec. Think good thoughts; I'm always worried about the aftermath.
J's adaptive Phy Ed teacher called last night and wants to start taking J with a small group to the Y for swimming on Wednesday ams. Yay! J loves Mr. S so much, he talks about his non-stop. This guy must be a miracle worker if he can get J to kick a ball in order to get a reward of running up the hill behind the school. My child kicked a ball and wants to run? Up a hill no less? Go for it!
Object du Jour: J is currently running around the house with a clear plastic bucket over his head, giggling like a fool.
11.03.2010
Open the garage door!
I think we're finally over illnesses! Jameson had a bloody ear and I took him in with an ear infection, he still coughs at night, but seems better.
Trick or Treating last Saturday night. Jackson told me he wanted to be an iPod, so I made a cool green iPod outfit. At the last minute, he decided he wanted to be Thomas the Train for the 3rd year in a row, so I wore the ipod suit (an older lady thought I was a remote). Jameson was Handy Manny, but he took off the hat and tool belt about 6 blocks in. People would ask what he was supposed to be and I said, "Guy in green shirt." They didn't think I was funny.
Jackson is finally back in feeding therapy after waiting several weeks for authorization of payment from the state and working a schedule with the therapist because the old time was when J was in school. He did really well and ate Sunbutter and a few chunks of fruit. Very reluctant with the fruit. Toast is still going strong.
We have GI/feeding team this week to talk more about feeding and our yearly following up with the Special Needs Clinic.
I'm off Children's on Thursday to talk to interns about what parents expect from their child's doctors. Should be interesting. Busy week!
Jackson has been obsessed with the garage door across the street. He cries when it's closed. I'm sure the people who have only lived there a few months would love to see me knocking on their door telling them that, "My child is sobbing because your garage door is closed, would you mind leaving it open? Kthxbye."
Object du Jour: The garage door.
Trick or Treating last Saturday night. Jackson told me he wanted to be an iPod, so I made a cool green iPod outfit. At the last minute, he decided he wanted to be Thomas the Train for the 3rd year in a row, so I wore the ipod suit (an older lady thought I was a remote). Jameson was Handy Manny, but he took off the hat and tool belt about 6 blocks in. People would ask what he was supposed to be and I said, "Guy in green shirt." They didn't think I was funny.
Jackson is finally back in feeding therapy after waiting several weeks for authorization of payment from the state and working a schedule with the therapist because the old time was when J was in school. He did really well and ate Sunbutter and a few chunks of fruit. Very reluctant with the fruit. Toast is still going strong.
We have GI/feeding team this week to talk more about feeding and our yearly following up with the Special Needs Clinic.
I'm off Children's on Thursday to talk to interns about what parents expect from their child's doctors. Should be interesting. Busy week!
Jackson has been obsessed with the garage door across the street. He cries when it's closed. I'm sure the people who have only lived there a few months would love to see me knocking on their door telling them that, "My child is sobbing because your garage door is closed, would you mind leaving it open? Kthxbye."
Object du Jour: The garage door.
10.15.2010
Is it Thursday?
Poor J got sent home from school on Tuesday with a 100 degree fever. I can always tell when he has a temp; his cheeks become bright red circles. He ended up staying home Wed and Thurs too with a cough and a faucet for a nose. "Go to the hopstible, they fix you right up!"
On Wed afternoon, he came to me and said, "Is is Thursday?" I asked him if something important was going on Thursday and he said, "Jackson do calendar Thursday." I felt bad that he was too sick to go to school and he missed calendar. I talked to his Sped teacher and she said J loves calendar, but didn't know of anything special on Thursday, so she was going ask the Kindergarten teacher if there was something going on in there.
Today J is much better and got to go on the field trip to Green Meadows farm with his class. All morning long I heard, "Go on a hay ride!!" Daddy has been posting pictures on Facebook, so I get to see all the action!
Object du Jour: Calculators!
On Wed afternoon, he came to me and said, "Is is Thursday?" I asked him if something important was going on Thursday and he said, "Jackson do calendar Thursday." I felt bad that he was too sick to go to school and he missed calendar. I talked to his Sped teacher and she said J loves calendar, but didn't know of anything special on Thursday, so she was going ask the Kindergarten teacher if there was something going on in there.
Today J is much better and got to go on the field trip to Green Meadows farm with his class. All morning long I heard, "Go on a hay ride!!" Daddy has been posting pictures on Facebook, so I get to see all the action!
Object du Jour: Calculators!
9.29.2010
Haaaaaay!
J lost another tooth. It was one of the bottom center two. It was turned totally sideways. Don't know when he lost it, I just noticed the hole over the weekend. I talked with the new dentist today and he's going to try to get in on the endoscopy action and do a full cleaning and x-ray while J is out.
Over the weekend we went to Harvest Fest with Uncle Mike and Cousin Maddie while Daddy was out of town. The boys, especially Jameson, love Maddie and follow her around like puppy dogs. When Jameson woke up the next morning, he asked where Maddie was. I told him she went home and he said, "But I just wanted to give her a hug." Awwww.
At the fest, there's a giant area covered in hay. I think it's partly for the kids to play in and partly for people to use the hay to make a scarecrow to take home. J was unsure of the festival until we got to the hay area. He absolutely loved it! He kept yelling, "Haaaaaay!!!" at the top of his lungs. He rolled in it, filled our wagon with it, jumped off the hay bales, and tried to chew a piece or two. Talk about a sensory experience! He was sad to leave. I'm pretty sure he would've played in it all day.
I'm so thrilled with my decision to keep J at his current school. The staff is wonderful, they seem to genuinely enjoy working with him. He's made such great progress since the beginning of the school year. I talked with his OT and one of his aides today and they had such glowing reports for me.
J woke up coughing quite a bit last night. I rubbed some Vicks on his chest which did the trick, but before that, J kept telling me, "Go to the hobstible, they fix you right up." Then this morning he told me, "I got the chest medicine." I'm amazed at his memory and understanding of things.
Object du Jour: Back to the Cleesus.
9.16.2010
You Should Be Dancin', Yeah!
So it's been almost a month since I've written, whoa! So much has happened, I don't know where to start!
J has been to the ER twice with croup/stridor. He got the racemic epi and steroids and we waited the required 4 hours and then they sent us home. At our GI visit last week, the dr. decided that we should schedule an endoscopy to see what's going on in there. She's going to try to schedule with ENT to see if he needs to do anything in there while J is out. I want to try to get dental in there to do a thorough cleaning and x-ray too. Might as well kill three birds with one stone, huh?
J's now up to 3'2" and weighs between 28-30 lbs, depending on whose scale we're using. He's gained, so I'll take either one. Now that he's maintained a level of 90% ideal body weight, we're going to start working with the speech therapist and behavioral psych at the hospital on a more regular basis to expand his food horizons. Man cannot live on sweet potatoes and cracker snackers alone.
J started Kindergarten this year. He's split between K and the special ed classroom depending on what's going on in K. J is adoring school so far. He asks to go every day, even on weekends and bank holidays. I'm so relieved he's loving it. This is his first experience with all day, so he's exhausted when he gets home. Some nights, he's slept 12 hours! His teacher says J is doing really well and trying everything.
This is his first year eating lunch at school and so far, so good. He eats with his aide from last year and then they go read a book in the cafeteria to get J used to the noise level.
Above is his K5 pic. He's got a bit of a Barry Gibb vibe going on. Add a polyester suit and some gold chains and hello 1974! (He did get a haircut this week finally!)
J2 and I were having a bit of a chat one day and I asked him what he wants to be when he grows up. He told me a doctor because he wants to help J talk better. Aww, this kid can be so compassionate when he's not wanting to knock his brother over to get a toy.
We went to a friend's housewarming party a few weeks ago. They live on a farm with a huge well-stocked fish pond. Jameson was raring to fish with his Godfather's help. J wasn't so sure. He watched Jameson catch two fish and said, "I want a fish. I want to give it a shot!" On his first cast, he caught a little fish. He was so excited. I'm always happy to see J trying new things!''
This week I got to finally meet another trisomy 4p mom in person! We met through J's blog and she happened to be near where I live for work. We met for dinner and had amazing conversation. It's wonderful to meet someone who knows exactly how I'm feeling and what I'm going through with J. I never thought I'd get the opportunity to meet another mom with a t4p kid and I got very lucky to meet the one I did! Hope we get to do it again soon!
This weekend we went to the county fair by Grandma and Grandpa's house. The boys loved it! Jameson went on some rides and won a huge stuffed monkey in a fishing game. Jackson won a cool water game at Pick-a-duck. We picked up a yard sign for our chosen Gubernatorial candidate. His name is Scott Walker and Jackson thinks we're saying Skywalker. We sampled the fried cheese curds and lefse and headed back to Grandma and Grandpa's house.
Object du Jour: A pair of 2.00 calculators kept the fellas busy on the car ride!
J has been to the ER twice with croup/stridor. He got the racemic epi and steroids and we waited the required 4 hours and then they sent us home. At our GI visit last week, the dr. decided that we should schedule an endoscopy to see what's going on in there. She's going to try to schedule with ENT to see if he needs to do anything in there while J is out. I want to try to get dental in there to do a thorough cleaning and x-ray too. Might as well kill three birds with one stone, huh?
J's now up to 3'2" and weighs between 28-30 lbs, depending on whose scale we're using. He's gained, so I'll take either one. Now that he's maintained a level of 90% ideal body weight, we're going to start working with the speech therapist and behavioral psych at the hospital on a more regular basis to expand his food horizons. Man cannot live on sweet potatoes and cracker snackers alone.
J started Kindergarten this year. He's split between K and the special ed classroom depending on what's going on in K. J is adoring school so far. He asks to go every day, even on weekends and bank holidays. I'm so relieved he's loving it. This is his first experience with all day, so he's exhausted when he gets home. Some nights, he's slept 12 hours! His teacher says J is doing really well and trying everything.
This is his first year eating lunch at school and so far, so good. He eats with his aide from last year and then they go read a book in the cafeteria to get J used to the noise level.
Above is his K5 pic. He's got a bit of a Barry Gibb vibe going on. Add a polyester suit and some gold chains and hello 1974! (He did get a haircut this week finally!)
J2 and I were having a bit of a chat one day and I asked him what he wants to be when he grows up. He told me a doctor because he wants to help J talk better. Aww, this kid can be so compassionate when he's not wanting to knock his brother over to get a toy.
We went to a friend's housewarming party a few weeks ago. They live on a farm with a huge well-stocked fish pond. Jameson was raring to fish with his Godfather's help. J wasn't so sure. He watched Jameson catch two fish and said, "I want a fish. I want to give it a shot!" On his first cast, he caught a little fish. He was so excited. I'm always happy to see J trying new things!''
This week I got to finally meet another trisomy 4p mom in person! We met through J's blog and she happened to be near where I live for work. We met for dinner and had amazing conversation. It's wonderful to meet someone who knows exactly how I'm feeling and what I'm going through with J. I never thought I'd get the opportunity to meet another mom with a t4p kid and I got very lucky to meet the one I did! Hope we get to do it again soon!
This weekend we went to the county fair by Grandma and Grandpa's house. The boys loved it! Jameson went on some rides and won a huge stuffed monkey in a fishing game. Jackson won a cool water game at Pick-a-duck. We picked up a yard sign for our chosen Gubernatorial candidate. His name is Scott Walker and Jackson thinks we're saying Skywalker. We sampled the fried cheese curds and lefse and headed back to Grandma and Grandpa's house.
Object du Jour: A pair of 2.00 calculators kept the fellas busy on the car ride!
8.19.2010
Night at the Chateau, v.398954987.2
Monday night at dinner, things were totally fine. Jackson started talking in this funny deep voice and then laughing at himself. I thought he was just being silly. Less than a minute later, he said he wanted to throw up in the garbage. I got him out of his chair and he threw up. Literally, seconds later, he couldn't breathe.
The poor guy would try to take a breath in and when he couldn't, he'd panic and run to the other side of the house yelling, "Gotta go to the hopstible." I called a neighbor (thanks, Lisa!) to take Jameson and J and I ran to Children's. He really freaked me out in the car because he was glassy-eyed and staring. He wouldn't (couldn't) talk to me.
We get to Children's, no spots in the ER lot. Dinnertime on a Monday must be primetime. I literally pulled up to the door, scooped him out and left the car right where it was. (Thankfully, the nurse gave my keys to a valet who moved it for me.) That same nurse heard how hard J was working to breathe and took us right back to a room.
The doctor came in and said that J must be having an allergic reaction or choking and she wanted to do an x-ray. I knew that it looked and sounded like all of our previous visits, although it came on faster than any other time I can remember. I don't think he had actually eaten anything yet, anyway. I asked her to do the epi and steroids first and then if he still needed it, we could do the x-ray.
J didn't fight the mask at all this time. I think he knew how much he needed it. About an hour after the mask and 'roids, he was almost back to normal, with a bit of croupy-type cough and a tiny bit of wheezing. They made us stay a full four hours after the treatment to make sure he didn't need another one. My fingers were crossed that he didn't need another one because Daddy is in Lamptop (Atlanta) for the week and Jameson would've had to stay at the neighbor's with J's admission.
We watched Elmo and Madagascar while waiting to go home. J kept asking for Cars, but they didn't have it.
Thankfully, the rest of the week (so far) has been much quieter. Except for this exact moment where Pete and Repeat are fighting over serving dish lids. Really.
Object du Jour: Microwavable serving dish lids. Whatever works, I guess.
The poor guy would try to take a breath in and when he couldn't, he'd panic and run to the other side of the house yelling, "Gotta go to the hopstible." I called a neighbor (thanks, Lisa!) to take Jameson and J and I ran to Children's. He really freaked me out in the car because he was glassy-eyed and staring. He wouldn't (couldn't) talk to me.
We get to Children's, no spots in the ER lot. Dinnertime on a Monday must be primetime. I literally pulled up to the door, scooped him out and left the car right where it was. (Thankfully, the nurse gave my keys to a valet who moved it for me.) That same nurse heard how hard J was working to breathe and took us right back to a room.
The doctor came in and said that J must be having an allergic reaction or choking and she wanted to do an x-ray. I knew that it looked and sounded like all of our previous visits, although it came on faster than any other time I can remember. I don't think he had actually eaten anything yet, anyway. I asked her to do the epi and steroids first and then if he still needed it, we could do the x-ray.
J didn't fight the mask at all this time. I think he knew how much he needed it. About an hour after the mask and 'roids, he was almost back to normal, with a bit of croupy-type cough and a tiny bit of wheezing. They made us stay a full four hours after the treatment to make sure he didn't need another one. My fingers were crossed that he didn't need another one because Daddy is in Lamptop (Atlanta) for the week and Jameson would've had to stay at the neighbor's with J's admission.
We watched Elmo and Madagascar while waiting to go home. J kept asking for Cars, but they didn't have it.
Thankfully, the rest of the week (so far) has been much quieter. Except for this exact moment where Pete and Repeat are fighting over serving dish lids. Really.
Object du Jour: Microwavable serving dish lids. Whatever works, I guess.
Subscribe to:
Posts (Atom)