We have a friend who was diagnosed about a year ago with 3 brain tumors. The treatments and therapies have left their savings pretty much depleted, so a group of people held a fundraiser for him yesterday. There was food, music, a cake auction, raffle prizes and a performance from ComedySportz. The organizers did an incredible job! It was really heartwarming to see how many people came out to help this family.
Randy won a fruit basket and a necklace (he looks fabulous in it!) and I won a Brewer's basket with 10 bobble heads (I'm thrilled to now have a Yount to go with my Molitor!), 3 shirts, 2 hats, a cooler, a pennant, and a ton of Brewer's baseball cards. I also won a wonderful Red Velvet cake. Yum!
The event was held at a bowling alley and Jameson had a blast! He explored every inch of the place. Jackson was not happy to be there. He kept telling me everything was too loud. By the end, he was doing pretty well, but he needed to keep a fleece winter hat on his head through the whole event. He got some funny looks, but hey, I'm game for whatever it takes. Never mind that it was 70+ degrees yesterday.
We went to the ped this morning to get J's booster flu shot. He took it like a pro and immediately asked for his sticker. lol Pavlov's theory can also be proven with little boys and stickers.
Object du Jour: A toy phone and the sticker.
9.21.2009
9.19.2009
It's all about conditioning.
Got a letter from the insurance company saying that "coverage is available" for the microarray testing, so off to Children's we went Friday to do the blood draw for that and the thyroid. He loves running down the skywalk from the parking ramp and labelling all the exit signs.
We got in the lab waiting area and he kept pointing to the door to the office and saying, "Open it, door." When we finally got called back and sat down in the chair, he burst into tears and starting yelling, "Stiiiickers!!" I think he's finally figured out that each visit to Children's no matter what it's for results in a sticker or two. He handled the blood draw like a champ and happily bounded out of the office with a Blue's Clues sticker in one hand and Spiderman in the other. The major trauma was the "Bamdaid" that covered the poke. He made me remove it before we left the parking ramp.
J is on a Playdoh kick. That's all he wants to do lately, so we made a special trip out to go buy some 'doh. When we got to the store, I noticed that all the clearance toys were 20% off, so we also came home with a Handy Manny fix-it radio. The back comes off and there's giant pretend screws that can be "fixed" with the screwdriver that was included in the box. It talks and tells you what part to fix. He loves that thing! He's doing a really nice job of using the screwdriver appropriately and turning it one-handed. I'm going to regret this, aren't I? So, when the time comes that I blog that he's taken the microwave or a lamp apart, you can be the first to say, "I told you so!"
I'm still working on Halloween ideas for the boys. I think J would like to be Handy Manny and J2, Elmo aka Elmie. Although, I'd love to get Jameson into Jackson's old Elvis jumpsuit. How awesome would that be?
Object du Jour: The Handy Manny radio and the Playdoh.
We got in the lab waiting area and he kept pointing to the door to the office and saying, "Open it, door." When we finally got called back and sat down in the chair, he burst into tears and starting yelling, "Stiiiickers!!" I think he's finally figured out that each visit to Children's no matter what it's for results in a sticker or two. He handled the blood draw like a champ and happily bounded out of the office with a Blue's Clues sticker in one hand and Spiderman in the other. The major trauma was the "Bamdaid" that covered the poke. He made me remove it before we left the parking ramp.
J is on a Playdoh kick. That's all he wants to do lately, so we made a special trip out to go buy some 'doh. When we got to the store, I noticed that all the clearance toys were 20% off, so we also came home with a Handy Manny fix-it radio. The back comes off and there's giant pretend screws that can be "fixed" with the screwdriver that was included in the box. It talks and tells you what part to fix. He loves that thing! He's doing a really nice job of using the screwdriver appropriately and turning it one-handed. I'm going to regret this, aren't I? So, when the time comes that I blog that he's taken the microwave or a lamp apart, you can be the first to say, "I told you so!"
I'm still working on Halloween ideas for the boys. I think J would like to be Handy Manny and J2, Elmo aka Elmie. Although, I'd love to get Jameson into Jackson's old Elvis jumpsuit. How awesome would that be?
Object du Jour: The Handy Manny radio and the Playdoh.
9.14.2009
Blanket glasses and a red espresso machine
Back to see the eye doctor with the awesomely (is that a word?) fun name to say! I think J thinks the whole hospital is named after her.
The office has been remodelled and now when the door to the staff lounge is open, one can see a fabulous white microwave and red espresso machine. I couldn't keep the kid out of there. I was reminded several times about how white the rectangle microwave and how red the espresso machine was.
We were called back by an intern who did the initial exam with J. We saw him last time too. He said this was the day he was going to get Jackson to like him. lol Jackson was doing great until the dr tried to examine him. The dr wanted J to match the shapes on the tv screen to a laminated sheet with the same shapes on it. J wasn't having any of the matching, but he'd sob loudly, "hooouuuse" or "aaaaapple." As soon as the intern left to get the doctor of the awesome name, J was back to his old self, dancing around the room and trying to get the laminated "game" out of the drawer. He's never going to win an Oscar for his acting.
Overall, Dr. C feels that J doesn't use his left eye as much as his right (the wandering one). His left eyelid has always been a little droopy (ptosis). She wants him to wear his "blanket" glasses two hours a day over the right eye and then we'll go back in two months. The blanket part of "blanket glasses" is a little fleece patch that slips over the lens, so J doesn't have to wear the sticky patches over his eye. That was a nightmare!
I ran into one of the parents from the Family Advisory Committee and we had a nice chat while we were waiting. This was their first time seeing Dr. C; I told the mom she'd love her.
Ironically, J hasn't worn his glasses regularly since the last visit. We've made several attempts, but I find them in the back of the dump truck, in the play kitchen microwave or in the hot little hands of a tornadic curly headed toddler. This morning when I got the case out, J said, "Glasses!" He wore them from the time I put them on him, through his appt and until Daddy delivered him at school. Yay! We'll see what his teacher says about how long he kept them on at school! Progress hopefully!
Object du Jour: The glasses, the doctor's "shape game" and a super keen Elmo sticker.
The office has been remodelled and now when the door to the staff lounge is open, one can see a fabulous white microwave and red espresso machine. I couldn't keep the kid out of there. I was reminded several times about how white the rectangle microwave and how red the espresso machine was.
We were called back by an intern who did the initial exam with J. We saw him last time too. He said this was the day he was going to get Jackson to like him. lol Jackson was doing great until the dr tried to examine him. The dr wanted J to match the shapes on the tv screen to a laminated sheet with the same shapes on it. J wasn't having any of the matching, but he'd sob loudly, "hooouuuse" or "aaaaapple." As soon as the intern left to get the doctor of the awesome name, J was back to his old self, dancing around the room and trying to get the laminated "game" out of the drawer. He's never going to win an Oscar for his acting.
Overall, Dr. C feels that J doesn't use his left eye as much as his right (the wandering one). His left eyelid has always been a little droopy (ptosis). She wants him to wear his "blanket" glasses two hours a day over the right eye and then we'll go back in two months. The blanket part of "blanket glasses" is a little fleece patch that slips over the lens, so J doesn't have to wear the sticky patches over his eye. That was a nightmare!
I ran into one of the parents from the Family Advisory Committee and we had a nice chat while we were waiting. This was their first time seeing Dr. C; I told the mom she'd love her.
Ironically, J hasn't worn his glasses regularly since the last visit. We've made several attempts, but I find them in the back of the dump truck, in the play kitchen microwave or in the hot little hands of a tornadic curly headed toddler. This morning when I got the case out, J said, "Glasses!" He wore them from the time I put them on him, through his appt and until Daddy delivered him at school. Yay! We'll see what his teacher says about how long he kept them on at school! Progress hopefully!
Object du Jour: The glasses, the doctor's "shape game" and a super keen Elmo sticker.
9.13.2009
Sunday Night Randomness
Random pictures from the last few weeks I've mentioned, but didn't get posted. Some I haven't mentioned; meh, enjoy anyway.
1. Could he be any cooler? (said in my best Chandler Bing voice)
2. There's a giant what behind us? Mmmm, fingers.
3. My favorite Christmas present at 18 months old.
4. The best part of J's school.
5. First day of school.
6. First day of school with Jameson smelling the bush. Don't ask.
7. Oooo, Steak Fair Sky Glider. (Sidenote: Everytime he wears this shirt I get compliments on how cute my daughter is.)
8. A boy and his best friend. J was having a full-on conversation with his shadow.
9. The most awesome part of the birthday house...the doorbell!
10. Mmmmm, birthday cupcakes!!
I made a fringy blanket today for a friend's baby who had surgery recently. J was practically drooling on the table on the hope that the blanket was going to be for him. He kept trying to pull it off the table as I was tying up the sides. I told him, "This is for Baby Christian." He wasn't having any of that and said, "Baby Kitchen?" while trying to sneak it off the table. I had to quick wrap it up when he wasn't looking. Like we don't have 27 other fringy blankeys (or KeeKee's as J2 calls them) in this house!
Object du Jour: The chalk board on the easel. I drew air conditioners, microwaves, doors, light switches and Rectangle Ellen until my fingers were totally pink and orange. Anyone seeing a theme here?
9.10.2009
Positive Exposure and Rescue 911
We got a letter in mail today that Jackson is one of the children chosen from the Genetics Clinic to participate in a photo session with Rick Guidotti. He takes pictures of people with different disorders to promote a positive self image and so they can be looked at as a child and not their diagnosis. Here's his site: www.positiveexposure.org I'm so stinkin' excited about this!
On a bummer note this week, J's feeding therapist has moved on to another job. I don't know how I'm going to explain to him that we won't be seeing her at "Elissa's house" anymore. Good luck and we'll miss you!
GI Clinic today. Weight and height up! Yay! Met with ST, Beh Psych, the Dietitian, nurse, OT, and GI dr. They are all pleased with his gains. We'll just continue on the same course and tube him at night as needed. I discussed the Prevacid issue with the dr. and she said that Prilosec could work for J after it's compounded in the pharmacy. So, I guess if we get rejected by the insurance company, that's what we'll do. She also didn't see a need to do the Ph Probe at this time. Whew! We got back in Dec for a follow-up. Eye clinic next week.
Jameson decided that he doesn't provide enough excitement in our lives and called 911 this morning. The phone rang and a woman said, "This is Cheryl from the city 911, is everything OK?" Thank goodness she was understanding and didn't need to send a squad or firetruck.
Today he's also taken off his pants in the backyard, slipped through the fence and colored all over the neighbor's picnic bench with sidewalk chalk and broken the child lock on the cabinet. I can feel my hair turning grey as I type this.
While we were playing the yard yesterday, he watched the roofers working two houses down. One would yell down, "I need another palette!", to which Jameson would stand at the fence and reply, "What!? What!?" Like they need his input on their roofing job.
Object du Jour: The Halloween place mat that I got on clearance last year at Kohl's. Can't beat 90% off. It ended up being a whopping .39. We had to take it with us to GI.
On a bummer note this week, J's feeding therapist has moved on to another job. I don't know how I'm going to explain to him that we won't be seeing her at "Elissa's house" anymore. Good luck and we'll miss you!
GI Clinic today. Weight and height up! Yay! Met with ST, Beh Psych, the Dietitian, nurse, OT, and GI dr. They are all pleased with his gains. We'll just continue on the same course and tube him at night as needed. I discussed the Prevacid issue with the dr. and she said that Prilosec could work for J after it's compounded in the pharmacy. So, I guess if we get rejected by the insurance company, that's what we'll do. She also didn't see a need to do the Ph Probe at this time. Whew! We got back in Dec for a follow-up. Eye clinic next week.
Jameson decided that he doesn't provide enough excitement in our lives and called 911 this morning. The phone rang and a woman said, "This is Cheryl from the city 911, is everything OK?" Thank goodness she was understanding and didn't need to send a squad or firetruck.
Today he's also taken off his pants in the backyard, slipped through the fence and colored all over the neighbor's picnic bench with sidewalk chalk and broken the child lock on the cabinet. I can feel my hair turning grey as I type this.
While we were playing the yard yesterday, he watched the roofers working two houses down. One would yell down, "I need another palette!", to which Jameson would stand at the fence and reply, "What!? What!?" Like they need his input on their roofing job.
Object du Jour: The Halloween place mat that I got on clearance last year at Kohl's. Can't beat 90% off. It ended up being a whopping .39. We had to take it with us to GI.
9.03.2009
I had a great day in 4K!
J came out of the school today wearing a big blue paper hat decorated with stickers. Written across the front was, "I had a great day in 4k!" It was so sweet and he was so proud of the hat; I almost cried. His teacher said that he handled the big group well, but needed quite a bit of help to focus on the project and get it done. She said he freaked a bit when they took a group pic of everyone wearing their hats and the class yelled, "Cheese!"
J started school on the first. He's in the PM class with two other kids. The plan is to slowly integrate them in the JK class (there are 24 in there!) and pull them back to the EC classroom when things in the JK class are too overwhelming or if they need a lot of help with an activity. Some "typical" peers may also be brought back to the EC classroom as models. J cried when I dropped him off the first day, but yesterday was much better. His teacher, aide, OT, PT and ST are all still the same, so I think he'll fall into the routine pretty quickly.
Jameson has definitely entered the terrible two's a few months early. The experiences I've had with Jameson at two are worlds apart from Jackson at two. J2 is climbing everything. He hooks his toes on the knobs of the drawers in the kitchen to get on the counter. I put him back in bed after he climbed out of his crib 8 times last night before he finally fell asleep. This morning, after Daddy got him dressed, he climbed back into the tub with Jackson when I turned my back for 3 seconds to get the shampoo for J. This kid is quick and quiet like a Ninja. Peeling wet clothes off of a howling, squirming toddler is great fun. When I reprimand him, he'll either flash that little grin at me or give me his infamous two-eyed wink. This will get easier, right? Right? Because it's getting harder to put things out of the Billy Goat's reach!
I got a copy of the letter that the geneticist sent to our insurance company regarding covering the chromosomal microarray analysis. Hopefully, we'll hear something soon. We'll do the thyroid check at the same time. I'm noticing more mottling on J's legs now that it's chillier outside. Still waiting on the Prevacid determination.
Object du Jour: Lego squares.
8.31.2009
Here's a few fun pictures from our trip! The top pic is the boys fighting over who gets to drive Fred Flintstone's car. Jameson was screaming, "Driiiiive!"
The second pic is Jameson posing for his place as the 49th President at Presidential Park. I didn't have the heart to tell him that I don't think he'll make the 35 year old age limit though.
The next pic is Jackson playing at the water park.
The last one is the boys at the Corn Palace.
The roughest part of the trip was when Jameson had had enough of the hair pin turns in the Black Hills park and threw up all over himself and his car seat. That was quite a clean up, and he rode back to the hotel in only a diaper, but we all survived!
The second pic is Jameson posing for his place as the 49th President at Presidential Park. I didn't have the heart to tell him that I don't think he'll make the 35 year old age limit though.
The next pic is Jackson playing at the water park.
The last one is the boys at the Corn Palace.
The roughest part of the trip was when Jameson had had enough of the hair pin turns in the Black Hills park and threw up all over himself and his car seat. That was quite a clean up, and he rode back to the hotel in only a diaper, but we all survived!
8.30.2009
South Dakota!
We're currently driving home from a night at Grandma and Grandpa's and we'll be in our own beds shortly! Yay! Isn't technology great that I can blog from the car?
Monday we went to Sioux City.
Tuesday: Wall Drug, The Badlands and The Corn Palace.
Wednesday: Mount Rushmore, Deadwood and Sturgis. We also drive through the wildlife trail in the Black Hills park and saw Buffalo, Prairie Dogs, Deer and some other horned creature that I had never seen before. The donkeys walk up and stick their faces right in car looking for food. I screamed like a little girl. lol
Thursday: Custer to Bedrock City and a quick look at Crazy Horse. Back to Deadwood and Lead to see the Presidential Park.
Friday: up to Wyoming to see Devil's Tower, then back to the hotel to play at the waterpark.
Whew! We got a lot done in a short time! I was so impressed with how well the boys handled the car rides and all the new stuff. They both HATED the T-Rex at Wall Drug. Jameson was impressing the Amish with his dance moves there though.
Jackson was hesitant at the waterpark at first, but then had a blast! I can't tell you how thrilled I was with how well he handled all the sounds and changes!
I'll post pics when we get home. Those of you who are my Facebook friends can see some of pics there.
Object du Jour: Grandma's fake light-up candles. He loves those things!
Monday we went to Sioux City.
Tuesday: Wall Drug, The Badlands and The Corn Palace.
Wednesday: Mount Rushmore, Deadwood and Sturgis. We also drive through the wildlife trail in the Black Hills park and saw Buffalo, Prairie Dogs, Deer and some other horned creature that I had never seen before. The donkeys walk up and stick their faces right in car looking for food. I screamed like a little girl. lol
Thursday: Custer to Bedrock City and a quick look at Crazy Horse. Back to Deadwood and Lead to see the Presidential Park.
Friday: up to Wyoming to see Devil's Tower, then back to the hotel to play at the waterpark.
Whew! We got a lot done in a short time! I was so impressed with how well the boys handled the car rides and all the new stuff. They both HATED the T-Rex at Wall Drug. Jameson was impressing the Amish with his dance moves there though.
Jackson was hesitant at the waterpark at first, but then had a blast! I can't tell you how thrilled I was with how well he handled all the sounds and changes!
I'll post pics when we get home. Those of you who are my Facebook friends can see some of pics there.
Object du Jour: Grandma's fake light-up candles. He loves those things!
8.22.2009
Check Ups!
The boys had their annual check-ups last week. J is 28 lbs and 36 3/4" and Jameson is 24 lbs and 34". J2 is catching up quick! They are wearing the same clothes for the most part, J's feet are one size bigger. My twins! lol
I chatted with the dr. about the swine flu vaccine. She thinks J should get that and regular flu vaccine. New vaccines make me nervous, but with J's history of landing in the hospital with every respiratory bug he gets, I don't want to take any chances. Plus, with the larger class size this Fall, I'm sure he's going to be exposed to all kinds of fun stuff.
Monday, we are heading to South Dakota for the week. We're going to do as much touristy stuff as we can find! Our last big trip before school starts Sept 1st. Where did summer go? It's so chilly today, it feels like Fall!
The quest for the Elmie fleece (or heck, just a pre-made Elmo throw) continues. I never thought I would have so much trouble finding something. I've tried Walmart, Kohl's, Target, JC Penney, Sears, Joann's, Hancock, and Google. I did find a 4 pc PJ set at Kohl's for 12.00, so I snapped that up. Anyone have any suggestions?
Little update on the med mess. I finally talked to the GI nurse. She said she had the same go-round with another family's insurance. The one med on the list of 4 that our insurance will pay for that could possibly work is no longer being made by the manufacturer. Wheee! So, we will go forward with sending in the appeal letter, with this new tidbit of info added. The nurse said that we may want to do the GI probe as additional proof that J needs this medication. For now, the plan is to send in the letter of appeal and meet with GI the second week of Sept to discuss our options.
Object du Jour: One of my make-up brushes. I found J brushing the cat with it. Ew, they can have it.
I chatted with the dr. about the swine flu vaccine. She thinks J should get that and regular flu vaccine. New vaccines make me nervous, but with J's history of landing in the hospital with every respiratory bug he gets, I don't want to take any chances. Plus, with the larger class size this Fall, I'm sure he's going to be exposed to all kinds of fun stuff.
Monday, we are heading to South Dakota for the week. We're going to do as much touristy stuff as we can find! Our last big trip before school starts Sept 1st. Where did summer go? It's so chilly today, it feels like Fall!
The quest for the Elmie fleece (or heck, just a pre-made Elmo throw) continues. I never thought I would have so much trouble finding something. I've tried Walmart, Kohl's, Target, JC Penney, Sears, Joann's, Hancock, and Google. I did find a 4 pc PJ set at Kohl's for 12.00, so I snapped that up. Anyone have any suggestions?
Little update on the med mess. I finally talked to the GI nurse. She said she had the same go-round with another family's insurance. The one med on the list of 4 that our insurance will pay for that could possibly work is no longer being made by the manufacturer. Wheee! So, we will go forward with sending in the appeal letter, with this new tidbit of info added. The nurse said that we may want to do the GI probe as additional proof that J needs this medication. For now, the plan is to send in the letter of appeal and meet with GI the second week of Sept to discuss our options.
Object du Jour: One of my make-up brushes. I found J brushing the cat with it. Ew, they can have it.
8.18.2009
Out of sorts, sort of...
Jackson has been so "not himself" the last week. I don't know if he's missing the routine of school, is having trouble with too many new people and places, is bored and/or may be getting sick. He's been self-stimming by making lots of repetitive noises and sounds. Echoing phrases said by others in a high-pitched voice is also something new. He's back into mouthing toys like crazy, which he wasn't doing as much of recently. J has also been more into himself and not as interactive as he usually is - even with me. Which is highly unusual for him, the interactions he has with me are usually pretty consistent. J's OT and ST agree that he's out of sorts, but he did have a pretty good day in feeding today.
We were supposed to meet with the rep for the autism waiver today, but she got the time wrong and didn't show up. I called her and we rescheduled for tomorrow. Now I have to re-clean the mess the boys made in the living room.
Still waiting on Randy to upload the latest pics. *toetap*
Object du Jour: J and I went to Joann's and Half Price Books after feeding therapy. I wanted to find some "Elmie" fleece (as Jameson calls Elmo), to make him a fringy blanket of his own. No Elmo fabric, but plenty of John Deere and zebra print fleece, what's up with that Joann?
So, we headed to HPB and I got a few books I've been looking for and I also got a book light, so I can read when I sit with the boys waiting for them to fall asleep. Jackson played with it most of the afternoon. He put the light behind every toy he could find to see what would happen. (Ironcially, J was totally his old self at both Joann's and HPB. Hmmm.)
We were supposed to meet with the rep for the autism waiver today, but she got the time wrong and didn't show up. I called her and we rescheduled for tomorrow. Now I have to re-clean the mess the boys made in the living room.
Still waiting on Randy to upload the latest pics. *toetap*
Object du Jour: J and I went to Joann's and Half Price Books after feeding therapy. I wanted to find some "Elmie" fleece (as Jameson calls Elmo), to make him a fringy blanket of his own. No Elmo fabric, but plenty of John Deere and zebra print fleece, what's up with that Joann?
So, we headed to HPB and I got a few books I've been looking for and I also got a book light, so I can read when I sit with the boys waiting for them to fall asleep. Jackson played with it most of the afternoon. He put the light behind every toy he could find to see what would happen. (Ironcially, J was totally his old self at both Joann's and HPB. Hmmm.)
8.17.2009
Our Brush with Greatness
Busy weekend! My brother and his daughter were here Friday and Sat, Randy's sister and her husband stopped over for a bit on Sunday (HI Aunt Donna!) and we headed back to State Fair on Sunday afternoon. And on Saturday, Randy and I volunteered to work at a Brewer's autograph signing. Trevor Hoffman! (Yum!) We left the boys with my brother for the latter. It was too hot out and we were too busy running around.
I found out first hand how nutty Brewer's fans can be. "Can I have that case of water the players didn't drink?" Um, no. "Can you grab a bunch of Ryan Braun's photos for me?" (This was while he was signing for the people that had waited since 4 am to see him). Again, um, no. "What do you mean I can't show up 5 minutes before the players arrive and still get a wristband for an autograph?" Sheesh. Some people had gotten in the line for Braun and Hoffman at 9 pm the night before! I love getting yelled at by strangers for things I have absolutely no control over. Good times. But I got some great pictures and a cool t-shirt. Randy was very excited to be "stage security" for the players during the Q&A session. lol
Jackson was a little better on our last trip to Steak Fair. He seemed to be enjoying some parts of it. Jameson loved the lemonade!
This week we have the boy's annual check-ups and then it's off to MN for a little vakay for me and the boys and a little work for Daddy. Jackson will be thrilled, one of my goals is to get him a new potty from Ikea.
Finally got a call back from GI regarding the meds and ph probe. We weren't home, so now we're playing phone tag. Not it!
Object du Jour: The rectangle mirror. J loves this little mirror that we used to see them in the backseat while driving.
I think my next post will be pretty photo laden. We still have a ton to upload.
I found out first hand how nutty Brewer's fans can be. "Can I have that case of water the players didn't drink?" Um, no. "Can you grab a bunch of Ryan Braun's photos for me?" (This was while he was signing for the people that had waited since 4 am to see him). Again, um, no. "What do you mean I can't show up 5 minutes before the players arrive and still get a wristband for an autograph?" Sheesh. Some people had gotten in the line for Braun and Hoffman at 9 pm the night before! I love getting yelled at by strangers for things I have absolutely no control over. Good times. But I got some great pictures and a cool t-shirt. Randy was very excited to be "stage security" for the players during the Q&A session. lol
Jackson was a little better on our last trip to Steak Fair. He seemed to be enjoying some parts of it. Jameson loved the lemonade!
This week we have the boy's annual check-ups and then it's off to MN for a little vakay for me and the boys and a little work for Daddy. Jackson will be thrilled, one of my goals is to get him a new potty from Ikea.
Finally got a call back from GI regarding the meds and ph probe. We weren't home, so now we're playing phone tag. Not it!
Object du Jour: The rectangle mirror. J loves this little mirror that we used to see them in the backseat while driving.
I think my next post will be pretty photo laden. We still have a ton to upload.
8.12.2009
Elmo says, "What?"
Jackson brought the stuffed Elmo to me this morning, pointed to his head and said, "No ears." Amazing that he noticed that.
*sigh* Here we go again with Walgreens, insurance and drugs. Will I never learn? Turns out Walgreens has not been billing for J's Prevacid correctly over the last 8 (!) months. Our insurance doesn't cover Prevacid and it's 185.00 a month. Ouch. The 4 medications for reflux they do cover are adult meds and J can't swallow a pill. According to our ped, they are not good drugs to try to dissolve to put through the tube. Sooo, now I have to write an appeal letter and try to get the meds covered. Fun stuff! Our ped has been wonderful in helping us try to navigate this maze.
J was off the meds for 4 days because we didn't have any. The poor kid was crying last night saying, "belly itchy." I found two pills in his overnight bag and the ped is going to get us some samples to tide us over until we can get this mess straightened out.
The ped also said that in a note from the GI dr, it was mentioned that GI wanted to do a PH Probe on J to see what the levels of acidity in his stomach are. I guess depending on the levels, there could be concern for the erosion to turn cancerous later in life. This was never brought up to me before, so I asked what the test entails. Basically, they would put a probe in his nose down into his belly and leave it there for 23 hours. We'd have to stay in the hospital overnight. I have a feeling if we have to do this, it will be the longest 23 hours of my life. I have a call into GI to see what she says.
Daddy is taking J to dental clinic today. He's better at holding him down than I am. Hopefully, all will go well and they will both make it out OK with a new toothbrush and sticker.
Object du Jour: A magnet from the fridge that has smiley faces with different expressions. There's one with wide eyes, mouth open and hair sticking up. Jackson calls this one, "Too loud." lol
*sigh* Here we go again with Walgreens, insurance and drugs. Will I never learn? Turns out Walgreens has not been billing for J's Prevacid correctly over the last 8 (!) months. Our insurance doesn't cover Prevacid and it's 185.00 a month. Ouch. The 4 medications for reflux they do cover are adult meds and J can't swallow a pill. According to our ped, they are not good drugs to try to dissolve to put through the tube. Sooo, now I have to write an appeal letter and try to get the meds covered. Fun stuff! Our ped has been wonderful in helping us try to navigate this maze.
J was off the meds for 4 days because we didn't have any. The poor kid was crying last night saying, "belly itchy." I found two pills in his overnight bag and the ped is going to get us some samples to tide us over until we can get this mess straightened out.
The ped also said that in a note from the GI dr, it was mentioned that GI wanted to do a PH Probe on J to see what the levels of acidity in his stomach are. I guess depending on the levels, there could be concern for the erosion to turn cancerous later in life. This was never brought up to me before, so I asked what the test entails. Basically, they would put a probe in his nose down into his belly and leave it there for 23 hours. We'd have to stay in the hospital overnight. I have a feeling if we have to do this, it will be the longest 23 hours of my life. I have a call into GI to see what she says.
Daddy is taking J to dental clinic today. He's better at holding him down than I am. Hopefully, all will go well and they will both make it out OK with a new toothbrush and sticker.
Object du Jour: A magnet from the fridge that has smiley faces with different expressions. There's one with wide eyes, mouth open and hair sticking up. Jackson calls this one, "Too loud." lol
8.07.2009
Steak Fair!
J has taken to calling the State Fair "Steak Fair." Much more fitting I think.
It rained most of the time we were there, so we spent a lot of time in the products buildings. Everyone else had the same idea, so it was crowded, but still fun.
Jackson wasn't too thrilled with the whole scene. Jameson loved it. Jackson didn't want to leave the safety of the stroller and Jameson wanted to do everything. Same old story.
What's new is chocolate covered bacon. Yep, you read that right. Randy and I decided to give it a go. The first two bites just tasted like salty chocolate. After that, it became way to rich and I didn't eat any more. Slightly gross, seems like a waste of perfectly good chocolate and perfectly good bacon.
Object du Jour: The Brewer's cap, fringy blanket and a chip clip kept J safe and secure during the chaos of Steak Fair.
8.05.2009
Genetics!
I love our geneticist! He's one of the most personable, caring and friendly doctors we see. Dr. B seems genuinely interested in Jackson and all that he's doing. We met with him yesterday for our bi-annual visit to see how J is progressing. I should also add that the Genetic Counselor and two students that we visited with were wonderful as well! I love it when the people we see actually seem to enjoy their jobs and the kids they work with. (Special thanks to the med student who did a great job corralling J2!)
He was concerned about J's mottling on his legs, which happens any time he's cold. I can feel completely comfortable and J will be mottled purple. So, Dr. B is sending us to have J's thyroid checked, to see if that's the culprit.
At the time of the thyroid blood draw, J will also have blood drawn for a test called a DNA microarray. This will give us a lot more detailed information about J's duplication than the chromosomal karyotype did.
We also discussed J's tightness in his legs, his feet slightly turning in (more than likely from his horrible habit of W-sitting) and his apparent left-side dominance. Dr. B felt that instead of Ortho, we should see a special clinic called Physical Medicine and Rehab. They specialize in tone issues with kids with genetic disorders, brain injuries, CP, etc. I feel this is really a better fit for J than Ortho. Dr. B also said that if J needs any type or Orthotics or correctional equipment, they can help us there. Yay! I wish I would've known about this clinic sooner! The only down side is that they couldn't get us in until Nov, but we're on a wait list.
After our visit we took a walk down the National Night Out party in our town. Target was giving out Target beach balls and paint with water postcards. We also got Frisbees, balloons (Jameson liberated J's balloon) and we got J2 fitted for a bike helmet.
Friday we are headed to our annual group meet-up at State Fair! Can't wait! Mmmmm, chocolate covered bacon on a stick.
Object du Jour: We got a new "big clip" at one of the booths at NNO. J was thrilled! He even slept with it last night.
ETA: According to measurements at Genetics, J has gained 1lb, 4 oz and 1/4". Here's to hoping!
He was concerned about J's mottling on his legs, which happens any time he's cold. I can feel completely comfortable and J will be mottled purple. So, Dr. B is sending us to have J's thyroid checked, to see if that's the culprit.
At the time of the thyroid blood draw, J will also have blood drawn for a test called a DNA microarray. This will give us a lot more detailed information about J's duplication than the chromosomal karyotype did.
We also discussed J's tightness in his legs, his feet slightly turning in (more than likely from his horrible habit of W-sitting) and his apparent left-side dominance. Dr. B felt that instead of Ortho, we should see a special clinic called Physical Medicine and Rehab. They specialize in tone issues with kids with genetic disorders, brain injuries, CP, etc. I feel this is really a better fit for J than Ortho. Dr. B also said that if J needs any type or Orthotics or correctional equipment, they can help us there. Yay! I wish I would've known about this clinic sooner! The only down side is that they couldn't get us in until Nov, but we're on a wait list.
After our visit we took a walk down the National Night Out party in our town. Target was giving out Target beach balls and paint with water postcards. We also got Frisbees, balloons (Jameson liberated J's balloon) and we got J2 fitted for a bike helmet.
Friday we are headed to our annual group meet-up at State Fair! Can't wait! Mmmmm, chocolate covered bacon on a stick.
Object du Jour: We got a new "big clip" at one of the booths at NNO. J was thrilled! He even slept with it last night.
ETA: According to measurements at Genetics, J has gained 1lb, 4 oz and 1/4". Here's to hoping!
8.02.2009
If I had a nickel...
for every time some said, "I just don't know how you do it"; I'd be a very wealthy chick. They also have a tendency to give "the look with the head tilt." Special needs parents will know what I mean. It's a mixture of pity and thank God it isn't me or my child. My standard answers are: "I just do" or "I do what I have to do and I'm sure you would do the same thing." I've been starting to tell people, "I don't know how parents of 'typical' kids do it, they're a lot harder than J." Because in all reality, Jameson is harder than J in some ways. He gets into a ton more trouble than J ever did! He keeps me on my toes! Granted, feeding him is easier. I chop up whatever we're having, toss it on his tray and he goes to town.
I didn't choose to have a child with a disability; I'd like to think he chose me. There are days when I don't feel like going to yet another appointment or battling with him during a meal, or worrying about how much weight he's gained/lost or whether or not someone touched the cart at Target with peanut butter fingers, but the second you have a child (with or without a disability), it isn't about you any more.
J's birthday party was lots of fun yesterday! And, the cake turned out better than I hoped. He loves his Handy Manny tools and fix-it truck, his new Cars backpack for school (because what self-respecting JK kid would be caught dead with a Wiggles backpack) and Matchbox Tornado track! The favorite toy of the day was the cool Step 2 Playhouse from Grandma and Grandpa O. I'll post pics when I get them off of the camera.
Jameson now knows how to wink. It's hysterical. He'll bust out a two-eyed, wrinkled nose wink when I'm reprimanding him for something. This kid knows how to work his mama!
J2 has also starting calling any body of water, "rah-rah." Say it out loud and trill the r's, that's exactly how he says it. How that started, I have no clue, but it's super cute!
Daddy drove Grandma and Grandpa L. back to their house and took J2 along for the ride. Jackson and I went to Target and got the rest of his school supplies and spent the afternoon playing with the Playhouse, big sink and sidewalk chalk.
We are now officially on the list for the autism waiver. We don't need to do all the preliminary stuff because we did it all to get J Medicaid through the Katie Beckett waiver. So, the caseworker will make a home visit and then she said it will be about a 9 month wait for the funding to actually begin. Really not as bad as I expected; however the insurance funding bill the governor signed will only cover state employees initially (bummer), so we'll have to wait awhile for that. The waiver will cover 20-40 hours per week of in-home ABA therapy and once we get the waiver, they'd like us to receive the services for a minimum of one year. I'm interested to see how this works and how it will help J.
Whoa, I guess I had a lot to say today!
Object du Jour: Flicker, Handy Manny's flashlight and the singing birthday card from Grandma and Grandpa O. that sings "Great Balls of Fire!" lol
I didn't choose to have a child with a disability; I'd like to think he chose me. There are days when I don't feel like going to yet another appointment or battling with him during a meal, or worrying about how much weight he's gained/lost or whether or not someone touched the cart at Target with peanut butter fingers, but the second you have a child (with or without a disability), it isn't about you any more.
J's birthday party was lots of fun yesterday! And, the cake turned out better than I hoped. He loves his Handy Manny tools and fix-it truck, his new Cars backpack for school (because what self-respecting JK kid would be caught dead with a Wiggles backpack) and Matchbox Tornado track! The favorite toy of the day was the cool Step 2 Playhouse from Grandma and Grandpa O. I'll post pics when I get them off of the camera.
Jameson now knows how to wink. It's hysterical. He'll bust out a two-eyed, wrinkled nose wink when I'm reprimanding him for something. This kid knows how to work his mama!
J2 has also starting calling any body of water, "rah-rah." Say it out loud and trill the r's, that's exactly how he says it. How that started, I have no clue, but it's super cute!
Daddy drove Grandma and Grandpa L. back to their house and took J2 along for the ride. Jackson and I went to Target and got the rest of his school supplies and spent the afternoon playing with the Playhouse, big sink and sidewalk chalk.
We are now officially on the list for the autism waiver. We don't need to do all the preliminary stuff because we did it all to get J Medicaid through the Katie Beckett waiver. So, the caseworker will make a home visit and then she said it will be about a 9 month wait for the funding to actually begin. Really not as bad as I expected; however the insurance funding bill the governor signed will only cover state employees initially (bummer), so we'll have to wait awhile for that. The waiver will cover 20-40 hours per week of in-home ABA therapy and once we get the waiver, they'd like us to receive the services for a minimum of one year. I'm interested to see how this works and how it will help J.
Whoa, I guess I had a lot to say today!
Object du Jour: Flicker, Handy Manny's flashlight and the singing birthday card from Grandma and Grandpa O. that sings "Great Balls of Fire!" lol
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