Microwaves, Rectangles, and Ellen

Thursday, November 20, 2008
We're still working on getting J's wandering eye under control. We tried the eye patches from the dr. and he panicked every time I tried to put them on him. He'd cry and say, "No, no stickers", poor fella. I hate doing things that make him cry. On the upside, he's really liking his glasses lately. I put them on him and the first thing he wants to do is check himself out in the mirror. The dr. says to keep pushing the glasses. The alternative is atropine to dilate the good eye to strengthen the wandering eye, but it has side effects that aren't good. So, we'll stick with the glasses until we see the dr. in January.

Eating has been a little better lately. He's swallowing easily dissolvable foods like Gerber stars and corn puffs. J still spits out foods that don't break down as easily. He is also spoon feeding himself! I'm really happy about that! Unfortunately, it's only bananas, but here's to hoping we can expand his horizons a little!

Object du Jour: Rectangles, squares and circles. J will find a shape out of anything. I've recently taught him octagon, pentagon and trapezoid. Jackson labels the trapezoid shaped panels in the lamp and can differentiate between his octagon and pentagon shape sorters. Wow.


Tuesday, October 28, 2008
I've realized recently how much Jackson has come to rely on his Brewers' cap. It's become a shade from the sun, a way to keep his head warm, a security blanket, and an invisibility cloak. That hat has become such a comfort him when he's afraid or things are too loud.

Update on the ENT visit/x-ray. Everything looks "normal", but his airway is a little smaller than a typical kiddo. We're going to try reflux meds to see if they calm his airway and that will possibly prevent future croup/strider/hospitalizations. So far, so good. Before the meds, J was scratching at his neck at night so much he was bloody in the morning. Now that he's been taking the Prevacid for almost two weeks, the scratching has stopped.

Jackson has had such an issue processing loud or sudden sounds in the past. In the last few weeks, he's finally figured out how to plug he ears and control the sounds a little bit. His brother has figured out how to crank the dial on the receiver and blast the TV. Jackson used to cry and have a really hard time calming down, now he plugs his ears and says, "Jameson, loud, mama, fick-a-sit". I'm so proud of him. For the record, the dial on the receiver is now Scotch-taped in place. Halloween pics are up!

Object du Jour: Books and pictures. We must've looked at a million pictures this afternoon!

Sunday, October 26, 2008
Trick or Treating last night! Jackson was Thomas the Train and Jameson was the Travelocity Roaming Gnome. I'll get pics up as soon as I download them. Jackson didn't want to get out of the stroller and Jameson was loving watching everyone.

Object du Jour: Crayons! We sit with paper and crayons and J directs what I should draw and then he colors them in. The paper today has lots of shapes, especially rectangles, a banana, a pumpkin and a baby.

Tuesday, October 14, 2008
Took the boys shopping for Halloween costumes yesterday. Jackson talks about Thomas continually, so I told him we were going to buy a "Thomas suit". The whole way there, he kept saying, "Target, Thomas suit." He was really excited when we got it home, and wore it on and off most of the afternoon. I'm glad he likes it; I thought he would be terrified by it.

I'm making Jameson's costume. He's going to be a Garden Gnome. The beard and hat are going to be hysterical!

Jackson has his x-ray and ENT appt tomorrow and GI on Thurs. Jameson has his 9 month appt tomorrow as well. We're going to be busy!

Object du Jour: A small blue bristle block. I have a picture of him at Grandma and Grandpa's house and he has the block in his hand. He will flip through all the pictures just to look at that little block. What a goofball!

Monday, September 29, 2008
Ellen and microwaves. Two obsessions finally meet. Jackson just loves Ellen DeGeneres. He asks to watch the show all the time. J dances with her and labels her all through the show. Last week, she was cooking and using a microwave. I thought J was going to explode. Ellen, microwave, Ellen, microwave! Back and forth. Then, she brought out a giant tower of microwaves so each person in the audience could have one. My child was in Heaven! He still talks about it.

On Saturday we went to Toys R Us. Jackson got his very own toy microwave. I've never seen him play with a toy that long before. He nuked everything he could get his hot little hands on.On Sunday, I was clipping coupons out of the paper and there was a picture of Ellen. I cut it out and gave it to J. He carried it everywhere (even nuked her a few times), until he accidentally ripped her in half. I've never seen him cry like that. "Ellen, broken, fick-a-sit (fix it)" With a little packing tape, Ellen was good as new and back in the microwave where she belongs. Ellen even went to school with him this morning.This child fascinates me to no end. I can never predict what he's going to do from one moment to the next.

Object du Jour: See above.

Tuesday, September 23, 2008
J is doing well at school. He's talking more, but getting less intelligible. The ST said that's pretty typical because his vocabulary is expanding rapidly.

"Go Potty!" J is showing a huge interest in using the potty. He hasn't actually gone on it yet, but we'll keep trying. We got him a book called The Potty Train (chugga chugga pooo pooo), which he loves.

Eating is still slowly improving. He'll actually bite dry, crunchy foods and then spit the pieces out. Hopefully soon he'll realize it's ok to chew and swallow them with continued prompting.Jameson is now cruising along furniture. He's become quite the cling-on lately and wants to be held all the time.

Object du Jour: The Potty!

Wednesday, September 03, 2008
J is finally starting to feel a bit better. He still has a cough at night and an icky nose. I hope we will learn something from the x-ray.First day of school yesterday! J walked in like he'd never left. There's only one other child with special needs in his class, so they pulled in a "typical" peer. We'll see how it goes.

J had speech and PT in the afternoon after school and was exhausted by bedtime. I'll post a first day of school pic when I get them off of the camera.

Eating is really improving lately. *knock wood* I know as soon as I say something, it totally changes. But, he's been drinking quite a bit during the day (at his request) and attempting puffs, wagon wheels, Cheerios, stars, graham crackers, french fries, all at his request. Still nothing wet or cold, only dry and crunchy things. He's doing really well at home and therapy if we give him cues of "crunch, crunch, swallow". J will actually bite down on food and then swallow some of it. This is a huge step forward for him!

J has also been really verbal and expressive lately, despite the illness. He's very into talking about "don't touch" and "I can't". Somehow, "I can't" has replaced "help". He calls the outlets "don't touch", wonder where he hears that? Jameson decided that Saturday was a good day to pull to stand. He amazes me. He seems to pick something up overnight, and with J it was such a long progression to learn something new. There's a pic in the gallery of J2 caught in the act.

Object du Jour: His Irish Fest wallet with a bubble wand and the pink door in it.


Saturday, August 30, 2008
Poor Jackson. Another trip to Children's ER and an overnight stay for croup/strider. He started with a little seal bark cough at 5 on Thursday. I called the ped and asked if there was any way to head it off and avoid the ER. She said no, go in because she wanted his chest listened to. By the time we got to the ER, less than an hour later, he was coughing and the stridor had kicked in full force.

J was given a breathing treatment, that worked for an hour so they then gave him oral steroids and another breathing treatment. Any time they have to give us a second treatment, it's an automatic admit for the night. We got to his room around 1 am, and I ended up with maybe two hours of sleep.

In talking with the doctors, because this is J's 6th episode and 4th admission, we decided to send him to an ENT to see if there's anything anatomically or structurally that could be contributing to this. The ENT looked him over and we're going to get an x-ray of J's head/neck/chest area in a few weeks. Then we go from there depending on the results. The ENT said he may want to put J back on reflux meds in case silent reflux is aggravating his vocal chords (and some structure I couldn't pronounce to save my life!)

This time was a little scarier because he didn't respond as well to the meds as he had in the past. We've been home since last night at 6 and he's still showing little signs of not feeling well. I thought we were going to end up staying another night. I have the Albuterol at the ready if he needs it.

J was so tired that he slept most of yesterday morning. I sat by his bedside watching the lovely hospital TV with the sound off (Now I don't know how Bee Movie ends). He lifted up his head, looked at me and said, "keys!", put his head down and went right back to sleep. Poor guy.

He was so afraid of everyone and everything they were doing to him that he latched on to an emesis basin, a paper towel and the syringe they used to administer the steroids into his tube and held them throughout the whole ER stay. I really hope we get some answers and he doesn't need to go through this again.

Object du Jour: The Thomas blankey, who doesn't need a Thomas blankey when they don't feel well?


Sunday, August 17, 2008
J has been such a cuddle bug lately. Every time I sit, he's right there in my lap. Today, I was watching Summer Stock with Gene Kelly and Judy Garland. J was sitting on my lap hypnotized by the signing and dancing. There's a scene where Gene Kelly is tap dancing on a sheet of newspaper and making fun sounds with it. Then he proceeds to split the paper into 4 squares with his feet. J was watching and in an incredulous voice he said, "Look at that!" I taped the movie, so I'll see if that scene has the same affect in weeks to come.Jump, jump, jump.

Lots of random jumping lately. It's really funny to watch. I think they worked on it quite a bit in summer school.We've taken J quite a few places lately. State Fair, Irish Fest, Grandma and Grandpa's, the big outdoor pool... He's has handled the changes and sounds so well. He occasionally covers his ears and tells me that it's loud, but very few tears. I'm so proud of him!

Object du Jour: Flashlights.


Saturday, August 09, 2008
Eating. Who knew that eating could be so hard? I never really thought about what a process eating is until I had J. Bite, chew, move the food around, swallow AND breathe. All at the same time.

I'm seeing more gagging and throwing up lately. I showed J a pickle, he watched me eat it and he proceeded to gag. He gagged and threw up with a saltine. (And you really know you're a parent when you see your child gag and put your hands out to catch the vomit, so it doesn't hit the carpet). I just don't know what to do for him any more.

Today I got him to try some Gerber Baby Spaghetti. It's got little teeny noodle bits in it. He did really well with a few bites and then started to refuse. For about 30 minutes afterward he kept coughing a wet sounding cough. It's so frustrating that I don't know what to do to help him. I'm happy when he's willing to try something new, but it's so hard when it doesn't go well.

I got J the coolest thing ever. It's a water table that looks like a sink and the water actually runs out of the faucet. It's so awesome and he loves it! I'll post pics when I get a chance. Maybe this will stop him from sneaking upstairs and turning the tub faucet on.

Object du Jour: The sink.


Monday, August 04, 2008
So it's 85 degrees outside and my child decides he must, must, must wear his big, fuzzy Elmo slippers today. I must say, he looked adorable in them, but I could see him sweating from across the room. lol

He put his two Elmo dolls his his booster seat and pretended to feed them "Banbans", which naturally had to be heated up in the "microwave" first. It's exciting to see some imaginative play skills emerging. J is such a literal kid most of the time.

Oh the tantrums lately. I don't know if J is just hitting the "terrible twos" or just realizing he can question authority (anarchy in WI anyone?) He whines and cries if I don't move fast enough after he makes a request or I don't drop everything and attend to him immediately. I've been prompting him to use his words, sometimes it works, sometimes it doesn't.

Oh joy! The sandtable is up and running. He got some awesome sand toys from his aunt and uncle and had a blast playing in the sand. That is, until I had to go and wreck it by putting water in the with sand. I thought it would be fun, but I won't make that mistake again. Ugh.

Dental Clinic today. J did pretty well, but I could feel him physically shaking as the dentist looked at his teeth. He was pretty cooperative and followed some of the directives I gave him. At times, J clenched his teeth and wouldn't let the dentist in, but overall, he did a great job. We left with a new toothbrush, Thomas sticker and a pencil, so the trauma was quickly forgotten once we hit the elevator. Jameson was pretty suspicious of the whole thing and kept eyeing the dentist through the shade on his car seat.

J's memory sometimes amazes me. We were looking at a long lost book today and he labelled a picture of yogurt, an igloo and grapes. Those are things he doesn't eat or see on a regular basis, so I was pretty impressed he remembered what they were.

Rectangles, rectangles, rectangles. The new obsession. I go to get him out of bed in the morning, I say, "Good Morning!" and he says, "rectangles". He has a shape book and always turns to the rectangle page to label the "crackers, puzzle, brick and window". At Children's in the waiting rooms, he points out and labels the rectangular ceiling tiles and then the round lights. I wish I knew what was going on in his head and how he sees things.

Object du Jour: Pretty much every toy the boy owns. This was his first day of no school and he made up for lost play time with his toys.


Thursday, July 31, 2008
My baby boy is 4! Where did the time go? He's such a big boy and doing so incredibly well. I sometimes can't believe how lucky we are!

J had a big day yesterday for his birthday. He opened his presents and got a sandbox, some new trains and some sand toys. He got a haircut (which was free because it was his 13th visit! Bonus!) and then Daddy took him to the waterpark. I made cupcakes and gave him one with a candle on it. He kept telling me, "don't touch". He attempted to blow out the candle, but no way was he eating any of that cupcake. So, Daddy had to make the sacrifice and eat it himself. ;)

Tomorrow is J's last day of summer school. Then the day after Labor Day, he's back at his regular school. How fast the summer has gone!

Now I'm in double trouble...Jameson starting crawling (well, dragging himself across the floor) on Tuesday. He has a big grin on his face while doing it. Total ham just like his brother!

Object du Jour: A talking Thomas phone. He and Jameson fight over it a little bit.


Thursday, July 24, 2008
Because I'm getting all squishy and sentimental now that it's getting so close to my baby's 4th birthday, I decided to post a pic of him on his first day home from the hospital. I can't believe how tiny he was in the that pic!

We decided to get J a sandbox for his birthday, since he loves his water table so much. Of course he was standing there when I got it from UPS. He immediately says, "open it." I asked him if he knew what it was and he looked at the picture on the box and said, "sandbox." Like, duh, mom, don't you know? :) He won't get to have it until his birthday, but we've got the bags of sand in the garage all ready!

I've also posted a pic of my other camera ham in his lovely new DOC Band. I've now got it painted and I'll posted a pic of that soon.This summer has gone by so fast! J only has one more week of summer school left! He's done really well. His teacher told me today that J was pointing to and labelling the letters in TOSHIBA on the DVD player.

Object du Jour: A calculator, which he dunked in his friend's water table and it doesn't work anymore.


Tuesday, July 22, 2008
Jackson, Jackson, Jackson. How can one little boy cause so much trouble? Yeah, don't answer that, because I know before too much longer Mr. "I'm rocking back and forth on my hands and knees cuz I need to go, go, go" will be J's accomplice and lookout.

So, I have a Partylite Aroma Melt holder. Basically it burns from underneath to melt a wax disc on top make the room smell purty. I'm in the kitchen doing dishes. While my back was turned a little boy stole the measuring spoons from the drainer, climbed up on a dining room chair (see where this is going?)...and used the spoons to scoop and dump liquid wax all over the buffet, himself and the carpet. (Thank goodness it doesn't get that hot!) After I got that mess all cleaned up, he went in the cabinet and took out a box of oatmeal and dumped it all over the living room rug. Last week, he took one of his toy buckets, dumped the toys out and used it as a stepstool to pull something off the kitchen counter which caused a bowl to get broken.

That night, J's mattress pad was in the dryer. In my infinite wisdom, I say, "Oh, we can just put a sheet on for tonight, he hasn't disconnected in awhile." Somehow the stinker disconnected the pump from the extension kit and soaked part of the bed. See, Mommies can learn lots of valuable lessons too.

Object du Jour: A new set of picture cards, he's thrilled with them.


Sunday, July 13, 2008
I don't know who wrote this, but it always makes me cry...HOW MOTHERS OF SPECIAL NEEDS CHILDREN ARE CHOSEN FROM GOD: Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,00 women will become mothers of special needs children. Did you ever wonder how mothers of special needs children are chosen? Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation.

As he observes, he instructs his angels to make notes on a a giant ledger. "Armstrong, Beth, son, patron saint, Matthew." "Forrest, Marjorie, daughter, patron saint, Cecelia." "Rudledge, Carrie, twins patron saint.... give her Gerard. He's used to profanity."

Finally, he passes a name to an angel and smiles, "Give her a special needs child." The angel is curious. "Why this one, God? She's so happy." "Exactly," smiles God. "Could I give a special needs child a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel. "I don't want her to have too much patience or she will drown in a sea of self pity and despair. Once the shock and resentment wears off, she'll handle it. I watched her today. She has that feeling of self and independence. She'll have to teach the child to live in her world and that's not going to be easy."

"But, Lord I don't think she even believes in you." God smiles. "No matter, I can fix that. This one is perfect. She has just enough selfishness."

The angel gasps, "Selfishness? Is that a virtue?" Gods nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, there is a woman I will bless with a child less then perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'. She will never consider a 'step' ordinary. When her child says 'Momma' for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations. "I will permit her to see clearly the things I see ignorance, cruelty, prejudice, and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side." "And what about her patron saint?' asks the angel, his pen poised in mid air. God smiles. "A mirror will suffice."

Here's another one that gets me every time...

WELCOME TO HOLLAND by Emily Perl Kingsley.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland.""Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."But there's been a change in the flight plan. They've landed in Holland and there you must stay.The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Saturday, July 12, 2008
So, apparently, I make kids with funny shaped heads. Jameson got his DOC Band (like Jackson had) a few weeks ago. I knew he would need one from the day he was born. One the bright side, he's only had it for 3 weeks and the change so far is amazing! Maybe he won't need to wear it as long as Jackson did. I decorated Jameson's like "Iceman" from Top Gun. I wanted them to have bands that sorta went together. Never leave your wingman. I'll post a pic soon.

I want to ask the people that read my blog to keep Mieko's family in your thoughts and prayers. She gained her angel wings yesterday. She was only a few months older than J and fought so hard against all the things her trisomy 18 diagnosis threw at her. We met her family at our trisomy gathering in MN a few years ago. Her mom has done some great things to promote trisomy awareness. Mieko's sweet smiling face will always be with us.


Monday, July 07, 2008
"Are they twins?" Huh? Seriously, a woman came up to me at a local festival and asked if the boys were twins. Now I know J1 is small and J2 is big, but twins? I told her how old they were and without batting an eye she says, "So when are you going to have another one?" Jeez lady, mind your own business much? I said, "When Jameson has been out longer than he was in, we'll talk." She didn't find that funny.

Object du Jour: The water table and a small wading pool. I couldn't get him out of the water. I even let Jameson sit and splash in the water table for a bit. I have a couple of fish on my hands!


Sunday, July 06, 2008
Yay! It's officially summer. We got out the water table. Jackson is having so much fun splashing and playing with toys in the water.

Allergy clinic last week. They had him 2 lbs lighter than GI clinic. Hmmm. Anyway, we're going to repeat his RAST test and see what J's levels for milk and peanuts are. Hopefully, they are getting lower. We'll see.

Went to our local 4th parade on Friday. J didn't like the sirens on the firetrucks, but handled the rest of the parade pretty well. He really liked the Shriner's and their little motorcycles and little VW bugs. One float had a train on it that looked like Thomas with a bunch of people dressed in western-type clothing. J waved back to them, pretty cute!

We've been talking a lot about snoring lately. J thinks it's pretty funny to watch me pretend to snore. It's very funny when he tries to copy me.

Object du Jour: The potty seat. *fingers crossed*


Sunday, June 29, 2008
Busy few weeks.We had GI clinic last week. J is now 25.3 lbs and 34.3" tall. Pretty nice gains from last appt. They still consider him small, but porportionate. They were happy with his weight gain.

We talked a lot about his eating patterns and how he will suck on things like cookies and spit out the pieces that break off in his mouth. The ST had some ideas, but not much different that the ST we see weekly. We are going to try an individual session and see what that does.

During the visit, I mention to the dr. that J's iron levels have dropped and he's now considered anemic. She casually says that it could be due to lead poisoning and we need to have him tested. I freaked. I didn't get much in the way of reassurance, just that lead tastes sweet to kids and that's why they mouthe lead coated items. OK. So, I get the orders to have his lead checked from the ped. We got the results and his level less than 5. Which is not concerning unless it's over 10. The ped isn't concerned. We're still going to give him the iron supplements.

I honestly feel like I'm not listened to some of the people that work with J. I get frustrated, but that's all I'm going to say about that.

We had the GI picnic today at the zoo. The weather was weird. It get cold and rainy and 10 mins later, it would be hot and sunny. J got to pick a toy from the toy tent, a cool talking camera. Jameson got some teething rings.

There's an organization that comes every year and gives all the kids a little something. J got a stuffed toy (which we promptly lost somewhere in the zoo) and an awesome frog hat. I'll post a pic when I get them downloaded.

We also were really excited to finally win one of the family prizes this year! We got a 300.00 gc to a super nice furniture store! I'm not sure what we're going to get with it, but they gave us a catalog and I see so many things I'd love to have.

Back to being horrified by the train whistle at the zoo. J was doing fine with it last summer and now he cries and shakes. I really don't know what to do to make him realize that it's just a noise and he's OK. I know it's sensory based, but I just don't know what to do to make it easier on him.

J started summer school last Monday. He's seems to like it, but is often tired and weepy when he gets home. He went every day last week, but I think I'm going to bump him down to 4 days like his regular school schedule.

Object du Jour: The frog hat, new camera, and buttons we had to wear for the picnic.


Tuesday, June 17, 2008
Whew! What a weekend. We traveled pretty much the whole state. Friday was our Day Out with Thomas. Jackson was really afraid of Thomas' whistle. He eventually calmed down and really seemed to enjoy the train ride. The Lego trains and movie theater playing Thomas videos were big hits. But worse than the train whistle was the guy singing kid's songs in the train shed. J cried and shook, so we hightailed it outta there. He picked out a cool new boxcar and we got him a Thomas shirt that I will save for his birthday.

We then went to Grandma and Grandpa's on the other side of the state that night, then Saturday we went to J's cousin's wedding shower. Back home on Sunday. J did much better in the car than Jameson. We had to make frequent stops and walk him around.

A new obsession: shoes. Any shoe. Doesn't matter if there are feet in them or not. He gets down on the floor and traces the swoosh on my Nike's while I'm doing dishes. He labels the "N" on Daddy's New Balance shoes and the "S" on his own Skechers. He pokes the crocodile on my Crocs. J also likes to lick my flip-flops. Um...ew. The kid won't put a piece of fruit in his mouth to save his life, but he'll lick the bottom of a flip-flop. (For the record, yes, I do stop him.)

GI clinic on Thursday. Hopefully, we'll see a weight gain. *fingers crossed*

Object du Jour: Back to the picture cards. J is labelling yarn, yo-yo and quilt.


Wednesday, June 11, 2008
Wow, one more day of school. The year went by so fast. I'm thrilled to see the changes in J since the beginning of the year. He's more talkative, more social, more aware of his surroundings and has definately gained more cognitive skills. Thursday will be his last day and then Friday, on to Thomas!

We were coloring with crayons the other day and he found the silver one. He's been super interested in things that are silver ever since.

I don't remember if I updated the formula situation or not (and frankly I'm too lazy to go look ha!) A few months ago we decided to dump Walgreens and start ordering J's formula from CVS. They've been nothing but fantastic. When I call and place the order they know exactly what I need and have it in the next day after 12. Some of the people behind the counter know us now and always ask how J's weight gain is going. Talk about night vs. day service.

I think we have a new family "secret handshake". I walked into J's room this morning to unhook him, he looked at me, pinched his nose between his thumb and forefinger, wiggled his other three fingers and said, "honka honka!" I about fell over laughing.

I found out on Monday that J is anemic. His levels have dropped 2 points in the last 2 months. He's supposed to be between 11-13 and he's currently at 10. I went and got him some Fe-in-sol iron supplements to put in his pump at night (on the nurse's recommendation). I'm also adding rice cereal to his purees to boost the iron, but he's on to me. He'll only eat half of the container if he suspects the cereal. Hopefully, he'll just get used to it and it won't be a big deal after a few more presentations.

Object du Jour: Keychains. How the heck do I get this kid to keep non-food items out of his mouth?


Friday, June 06, 2008
Small progress on the eating front. We had cut up veggies, pickles and olives leftover from a relish tray I made for a picnic. I was having some with lunch and J was very interested in them. I offered him a piece of celery, which naturally he wouldn't take, but I did get him to smell it and poke it with his finger. We did the same for a carrot, cucumber, pickle and an olive. I gave him a small bowl and he carried around one of each to smell and poke. He sat in his little Elmo chair and touched each one to his lips and labelled it. J didn't actually put any of them in his mouth, but anything is progress!

Object du Jour: A shape book. He's fascinted with a picture of a brick (go figure) and a big yellow star that he calls, "twinkle twinkle".


Thursday, June 05, 2008
Brewer's Game...take 2. Not as bad as the first trip, but still a lot of crying. He spent most of game hidden under his hat. Jameson, on the other hand, loved it! He kicked and squealed and smiled at the people around us. The Brewers won 10-1 and ended the game with an in the park homer and another homer!

Still no real progress on the glasses front. He is still very resistant to wearing them, although school can get them on him for a few seconds at a time.

J only has one week of school left. How fast this year has gone! J starts summer school after a two week break. I think it will be great for him. He doesn't know what to do with himself the days he doesn't go to school.

He's still loving playing outside. We filled his water table with beans and he has a blast scooping and dumping them. I'm sure in a few weeks we'll have beans sprouting up all over the yard.

Object du Jour: He's loving labelling the stack of action pictures we have.


Wednesday, May 28, 2008
Jackson got his new glasses today. He looks adorable in them! They've got a hidden little Blue from Blue's Clues on the arm, which Jackson likes. But actually wearing the glasses, not so much.It was awful at the eyeglass place to say the least. He cried so hard. J had a napkin from lunch and kept dabbing his eyes every so often. The lady was really flustered and shaking. She was so sweet, she said didn't want to make him cry. If he ever keeps them on for more than 3 seconds, I'll post a picture.

We promised him a "treat" for sitting so nice at the store. He picked a Thomas Train pretend laptop. He's had a blast with it all day. But, I'm sure he could see it much better with the glasses on! :)

Outside, outside, outside, outside. Boy, does J loooove to be outside. He likes walking around the yard and looking at the flowers. He even tried to con our neighbor into letting him go to the store with her.

Object du Jour: The cool new Thomas laptop!


Friday, May 09, 2008
Jackson spilled his cup on the kitchen floor. Walked over the the counter, yelled, "towel!" and went and wiped up his own spill. Whatta kid!

Object du Jour: The talking Helicopter from Cars. It's getting a little old hearing, "I'm happier than a tornado in a trailer park", over and over and over...


Thursday, May 08, 2008
Ortho is now off of our list of appointments! J had a spinal and pelvic x-ray yesterday that shows no sign of change from last year, so unless something drastically changes, we don't need to go back.

He learned knee, shoulder, ankle and wrist yesterday. I only showed him a few times and he had them down!

Object du Jour: My really, really old Richard Simmons food mover we found in the basement. Hee Hee! He loves opening and closing the sliding doors and labelling the pictures of food and "raindrops" (water) underneath.


Tuesday, May 06, 2008
We had J's eye appointment today. He was so scared of all the machines, but labelled all the pictures on the screen for the tech (except the tree, but in his defense, it was a funny looking tree). They dilated his eyes and he looked like a cartoon character for most of the afternoon. The Dr. said she felt his eyes were OK, and wouldn't prescribe glasses if he were a "typical" kid. She did give a script for a mild pair that may help with his depth perception issues. She said we could try them and if he absolutely won't wear them, it won't be detrimental to him. We go back in 6 months.

"Peash", "Jafeson", "Eyefrows"...I love the way J pronounces words. It's so darn cute! He's now got us saying "Jafeson" and "Eyefrows".

Eating is still so-so. He still asks for "banbans" and a cup, but is so unwilling to try anything new. I have been using my rice steamer to make veggies and rice for Randy and me. I think I'm going to try making some of my own purees for him. We'll see how it goes!

Object du Jour: A baby flashlight he got Trick-or-Treating. He loves to shine it through toys to see what it looks like.


Sunday, April 27, 2008
We had Jackon's IEP last week. Overall, the team is pretty pleased with how Jackson is doing. We decided to sent him to summer school so he doesn't lose skills and can continue with a consistent routine. He was lost over Spring Break and couldn't understand why he wasn't going to school. He'll also continue with feeding and pool therapy.

The "big boy bed" is continuing to go well! We are now tubing him and he understands not to get out of bed when hooked up. J will wait in the morning for us to come and unhook him. I'm so happy with progess he's made with the bed!

The next few weeks will be busy for him. He's got the dentist, eye dr., GI, allergy and ortho coming up. Hopefully, all the visits will go well. The eye appt is a second opinion from a non-Children's dr. I want to make sure he's getting what he needs.

I was cooking myself lunch the other day and was heating up a leftover turkey brat from the night before. Jackson was the brat whistle in the microwave and turned to me with such a sad face and said, "Hot Dog crying."

We took him to a Brewer's game last week with tickets we got from the agency that provides Jackson respite money. It didn't go well to say the least. He cried and kept saying, "Loud!" Games really are sensory overload, the sounds, smells, and all the people are really a lot to take in. J finally settled down after a half an hour or so and watched a little of the game. I'll try to post a pic later of him in his Brewer's cap.

Object du Jour: An old pager, blackberry and a set of keys. My little businessman!


Sunday, April 06, 2008
Tonight was the first night since the big boy bed that Jackson stayed in bed and fell asleep! We didn't need to put him back in the bed several times! Hopefully, this pattern will continue! But what's interesting, is when he wakes up in the morning, he doesn't get out of bed and calls for me to come and get him.

Jackson has gone from not being too thrilled with the baby to needing to know where he is at all times. I went to put J in the car to go to school and he grabbed onto to Jameson's carseat (with him in it) and said, "Baby!" with panic in his voice. I'm pretty sure he was afraid we were going to leave Jameson behind. Then this morning, Jameson was still upstairs sleeping when I brought Jackson downstairs. He looked at the spot where the baby usually sleeps and said, again with panic, "All gone brother!?" Once I explained where the baby was, J was okay. J has been really worried lately about me leaving him.

He runs after me when I leave a room, he cried at Target when I went down an aisle and he couldn't see me, being with Daddy wasn't good enough, I guess. He kept saying, "Lap" at Target which means he wanted to sit on my lap. I told him he could hold my hand and he held on with a death grip. I think he's just hitting that developmental milestone a little later than "typical" kids.

Object du Jour: Daddy's old wallet. He's very excited about putting pretend credit cards in and out of it.


Sunday, March 30, 2008
So far... 6 trips up and down the stairs, removal of 5 books, 2 changing pads, two Hot Wheels and one Animal Muppet.

New big boy bed: Priceless


Friday, March 28, 2008
Jackson has figured out how to pull the pump tubing to pull the pole and pump toward the crib. He pushes buttons which changes his dose and rate. Little stinker. What he doesn't yet realize is that sound travels and we can hear the beeping through the baby monitor. I walk into the his room and the first thing he says is, "broken". Gee, I wonder how it got that way?

J has really missed school this week. He doesn't understand why he doesn't go anymore. I don't know what we're going to do when summer comes!

Object du Jour: The picture cards and the "crazy cow" video on youtube.

PSA (Public Service Announcement): If you need to get something from a counter that is out of your reach, laying a piece of paper in front of the counter to stand on isn't going to get you any closer. :)


Thursday, March 27, 2008
J got a package of picture alphabet cards from the Easter Bunny. He's labelling all the pictures, like xylophone and igloo, like a pro! Now if he only knew what an igloo is. :O)

He's telling me most of the letters and can generalize from the cards to the fridge letters. My smart little man!J is getting more and more used to having Jameson around. He tries to make him hold toys all the time. Jameson just smiles at him, it's pretty cute!

Still waiting on delivery of the "big boy" bed. That's what we get for ordering it during a sale! The sheets and comforter are here, just waiting for the bed!

Jackson has been cracking me up lately! I've taught him to sing key parts of "Ice Ice Baby", "Can't Touch This" and the "Batman" Theme song. Yeah, I'm weird! If I go "Doon Doon Doon, do do Doon Doon", J will say, "Ice Ice Baby". Or if I say, "Nunna Nunna Nunna", J will say, "Batman!" Oh, the things I teach him! lol He totally dicriminates between the three. I HAVE to get this on video and I'll try to post it to YouTube.

Eating is still so-so. He lost half a pound at our last GI visit. Blah. He's doing better with crackers and puffs though, unfortunately the calories aren't there in the things he likes.

Object du Jour: All the dollhouse furniture. Baby laundry basket, kitchen set and the sink are favorites. We do still talk about Thomas every day too!


Monday, March 17, 2008
Happy St. Paddy's Day, from the Irish/Norwegian family! :)We went shopping yesterday and bought J's "big boy" bed. They were out of stock on the mattress and box spring we wanted, so we'll probably have them some time next week. I don't think this is going to be an easy transition. We got Thomas sheets and a comforter and I need to get some bed rails for the sides. I'm trying to get him excited about his "Thomas Bed", but I don't think he's buying it.

Object du Jour: The baby laundry basket is back! We found it in a box of toys J hasn't played with in awhile and he hasn't been separated from it since.


Monday, March 10, 2008
I've created a monster. J will lovingly take my hand, look me right in the eye and gently say, "ketchup?" This means he wants fries. He brings them up at least 5 times a day and he's only had them twice. I'm excited that he remembers and that he's interested in food, but we won't be eating fries on a daily basis. :)

Object du Jour: Still Thomas!


Thursday, March 06, 2008
Whew! It's been a busy weekend. Jackson ended up at Children's Hospital overnight on Sunday with another bout of croup and strider. He was working so hard to breathe that his neck and ribs were retracting. It took two nurses plus me to hold him down to administer the breathing treatment. He cried so hard he popped blood vessels in his cheeks and forehead. But they had a Thomas tape, which made things a touch easier. Jackson also learned what a VCR is. They don't have DVDs in the ER. He now tells me 10 times a day to "rewind it!"

The breathing treatment and steroids didn't work, so we ended up staying the night. I didn't get to sleep until 4 am and J was up at 6. He was so scared being there, poor guy! It's hard to get any sleep with a steady stream of nurses, doctors, students and residents in and out of the room.

We got home Monday at 12 and had to pack the car and head up north for a funeral for Randy's uncle. Jackson slept quite a bit and will be on steroids until tonight. He missed two days of school and went back today.When they weighed him in the ER, he was 25,3. First time we've broken 25 lbs! I know he's taller, his pants are getting short. We've also had to go up a diaper size. We have GI Clinic next week, so we'll see what they have to say!

He's also getting more adventurous with food. Jello, Cheerios, puffs, Loops, fruit leather, french fries, are all things he'll eat!

Except for the fries he stole from the fridge (see previous entry), he hadn't really eaten fries until we went to a restaurant a few weeks ago. It was love at first bite! He didn't actually chew them, just sorta sucked the life out of them and wanted more. When the fries were all gone, he leaned over to the next table and tried to bum some fries from them! Hopefully, this is a sign of more things to come!

J is really starting to label more colors and letters spontaneously. He knows blue, black, green, red and yellow, e, q, h, and l. I love hearing him tell me all he knows!

We got tickets to ride on a real Thomas the Train! J will either be in complete awe or totally terrified. I won't know until we get there. It's in June at a railroad museum about 90 mins from us.

We are all very sad that Brett Favre decided to retire. He did great things with the Packers and he will be missed. I'm glad both boys got to see him play!

Object du Jour: Little Thomas wind-ups I got on ebay. He's obsessed!


Sunday, February 17, 2008
Duncan, Diesel, Salty, Annie, Skarloey, Percey, Arthur...Jackson knows all their names and more. These are all friends of Thomas. J knows who's who. I can't believe how quickly he learns names of new engines!

J tried to share his Etch a Sketch with the baby. He said, "He have it!" J was very disheartened when the baby didn't pick up the toy and start playing with it.

Our lives now have a running commentary. J tells me when I'm drinking coffee, washing dishes, changing diapers, feeding the baby and on and on. He may make a great narrator in the future!

Object du Jour: Like I even need to type it out! :)


Tuesday, February 12, 2008
I've figured out that J is a visual learner. He does so much better when he can see what I'm talking about or see what I'm asking him to do. When he's given directions without any visual cues, he often has difficulty following them.

He saw his graham crackers on a shelf just out of his reach. Daddy told him to stand on the box next to him to reach them. Instead, he stood IN the box and couldn't figure out why he still couldn't reach the crackers.

Cup drinking, still going well. He's trying more foods, but they still have to be dry and crunchy. J enjoys Gerber Banana Stars, but will suck them and spit them out. I can't figure out how to make him understand that swallowing them is OK.

J is doing better with the baby, but there's major trouble if we cover the baby with one of J's blankets. He knows which ones are his and which ones are the baby's.

Object du Jour: Still Thomas! I got him a box of Thomas Valentines for his school party. I gave him a few to have and he carries them around and talks about them most of the day.


Monday, February 04, 2008
We were looking at books this afternoon and the Baby Einstein book of colors is one of his favorites. Each page has several different objects of the same color. There's a microwave on the white page. J took my water bottle, set it on the picture and pretended to push the buttons. He said, "Beep, beep, beep, cook it!" The connections he's making lately are fantastic!

Better day today, tantrum-wise. He's back to playing more independently, but frequently checks on me to see where I am and what I'm doing. He's now starting to play with his baby doll and put it in the swing or give it a bottle.

Cup drinking has been great, banbans not so much. He's so interested in what we're eating. I bought him some graham crackers and he needed to have one before we left the Target parking lot. He's still not chewing, but the gagging and choking has greatly decreased. I offered him a piece of melon today and he wrinkled up his nose and held my arm so I couldn't bring it near him.

Still working on shapes. Most times, everything is a circle. He's started showing a big interest in "rec" which is what he calls rectangles.

He was looking through his plastic animals and found a Rhino and labelled it correctly. That must be something from school because I don't remember having a Rhino conversation with him!

Object du Jour: Today was all about making "cameras" out of the Bristle Blocks. Cheesy, cheesy, cheesy!


Saturday, February 02, 2008
J has perfected the art of the tantrum. He'll run out of the room, throw himself on the floor, and scream and cry. What fun this is. He has really good days and some rough days. Hopefully, this will get better soon. He's a little more mellow when I can spend time with him, just the two of us.

Tonight, we played with his toys and he chatted up a storm. He loves Mr. Potato Head and labelling all the clothes and body parts. J also loves telling me about the Little People and what they are holding in their hands.

After we put him bed, I heard him crying through the monitor. I went up to see what the issue was and he pointed at his Wiggles clock and said, "Tick Tock, all done, bye-bye." I asked him if he wanted me to take the clock away and he said, "all done clock, bye-bye." I took the clock out and he was asleep a few minutes later. He's had the clock for over a year now. It does have a loud ticking sound. I guess we'll keep it out and see if he asks for it later.

Object du Jour: Still Thomas. He has a little wind-up Thomas that he loves to chase across the kitchen floor.


Monday, January 28, 2008
Today J got out a basket of colored blocks. He lined them up and said, "choo choo." He then made a second line of blocks next to the first one matching the colors side by side. He correctly identified red and yellow. Wow. He labels the blocks as circles. I'm still working on getting square into his vocabulary.

We're working on having him sit on the floor without "W" sitting, this is where his knees are pointing forward and his feet are backward, like a W. This has been something we've been working on since he started sitting independently. He's finally starting to understand the cue of "fix your legs." J will swing his legs around and try so hard to sit with them crossed. He's so proud of himself, yelling, "legs!"Much less whining today. He's actually back to playing with his toys and not following me around crying. Unfortunately, this means the living room looks like Toys R Us exploded. :)

J is starting to ask for cups of formula and back to requesting "banbans", hopefully, this will continue! He's been getting enough in the last few nights, we haven't needed to tube him.

Object du Jour: Still Thomas. He has to have a train in his hand or nearby no matter what he's doing!


Saturday, January 26, 2008
A sample conversation with Jackson:Thomas, Thomas, Thomas, Thomas, Thomas, broken, Thomas, Thomas, Thomas, fell down, Thomas, Thomas, Thomas, something, Thomas, baby, Thomas, Thomas, stuck, Thomas, Thomas, Thomas, etc, etc, etc.We have a small obsession with Thomas, as you can see. I have no clue how it got started. The Wiggles are totally yesterday's news. I've been trying to explain to him that all the trains he has have different names and they are not all Thomas, but he's not buying that. I saw that there's a life-size Thomas train that we can take a ride on. Maybe that's something we can do for J's birthday. It will be an hour north of us in June.

Object du Jour: Thomas, Thomas, Thomas and Thomas. (Wow, when I type Thomas that many times, it starts to look like it's spelled wrong) :)


Tuesday, January 22, 2008
Oh the whiiiiing! Jackson's behavior has really changed in the past week. He has started doing whatever he can to get my attention, and if I leave a room, he runs behind me crying. His new trick is when I'm holding the baby, he'll tell me he "fell down". Um, no, you're standing right there, you didn't fall down. Poor kiddo. This change has been pretty rough on him.The eating has been getting better and he's been more willing to try new things. Yesterday he tried a bit of turkey bacon, which he seemed to like. He also stole a cup of cold french fries out of the refrigerator while I was cleaning it and I found him in the hallway with a mouthful of fries. I still worry about his chewing issues, but I'm happy that he's willing to try new things. I tried scrambled egg again and he held a piece (which is progress!) but wouldn't taste it.

J now comes to me and says, "something?" when he needs help. I figured out it's because I've been asking him, "Do you need something?" when he pulls my hand. Clever little man!

Object du Jour: Thomas, Thomas, Thomas, and more Thomas! That's all he wants to play with, watch on TV and talk about!


Wednesday, January 16, 2008
Ah, the call of the open water! Somehow the phone ended up in the toilet this morning. We're pretty sure it was either the cat or Jameson. Investigation pending.


Sunday, January 13, 2008
Lamp, window, black, yellow, blanket, sauce (applesauce), loops (Froot Loops), change you (as in "I need a new diaper"), bunny, frog, hop, milk, waffle, taco, crayons, color, pretzel...the words continue to come! He's really into labelling everything. He loves to walk around and growl the word "blaaaack". No clue why, but it's pretty funny. J could sit and look at books and label things for hours. I found a bunch of books about shapes and he could talk about circles and "tri-na-nangles" all day. Still not a whole lot of interest in the baby, but J's whining and demands on my time have increased. I try to set aside time when Daddy can be with the baby to just play with J. It seems to help a little.

J is starting to really show interest in the foods we're eating. He wants to look at my plate and touch everything. Or, he'll open my mouth and look inside. Froot Loops are high on the list of new loves. He can't eat too many because of the wheat, but it's great experience for him. Today he tried a dried strawberry. He didn't like it, but at least he tried it. He also stole a candy heart and sucked on it for a bit. I offered him a piece of egg, which he flatly refused. It seems that if it's remotely, wet, cold, or a little bit funny looking, he's not interested. But, we're making small bits of progress.

Object du Jour: The Baby Einstein play gym we dug out for the baby.


Monday, January 07, 2008
Jackson is officially a big brother! Jameson Vaughn was born Friday Jan 4th. He weighed 9 lbs, 12 oz!! Big fella!J wasn't so keen on the idea the first few days in the hospital. He'd come to visit and Daddy would hold him up and J would say, "all done baby." He'd get really restless at the hospital and not sleep well when Daddy brought him home. I was released from the hospital today and Jameson and I went with Daddy to pick J up from school. He got in the car, pointed at the baby and said, "baby?" When we got home, he tried to get Jameson out of the carseat and said, "baby out?" Since then, he's pretty much ignored him. :)

My OB made a good point about J and the baby meeting on neutral territory in the hospital. He said it's often harder if the baby just shows up at home. At some point, I'll post a pic of J and his brother in J's gallery.

On another note, J is now up to 24 lbs, 5 oz! GI was really pleased with weight gain. Now we're going to work toward volume and texture advancement.


Thursday, January 03, 2008
OK, this kid is really starting to boggle my mind! Yesterday, he brought me a Wiggles book and we talked about all the things in the book, he even told me the stove was "hot". He flips the book to the back cover and finds a teeny tiny little logo that says "HIT Entertainment" and says, "Thomas!" Now, from my research, HIT Entertainment is the co that distributes Thomas and the Wiggles in the US. How on Earth did he correlate the two? He has no Thomas books, the only thing I can thing of is that he saw the logo on the Thomas the Train show and remembered it. Wow.


Sunday, December 30, 2007
Even more words! Stuck and bonk are still at the top of the list, but he's added apple, cow, couch, window, knock-knock, kiss, Zoe (Sesame St), Thomas (the train), house, Mack, truck, and I'm sure there's more I'm not remembering. The light switch has really turned on!J has also added another frequently used, yet unidentifiable word: siff. He says it a lot, but I have no clue what it means. Today he ran into the room yelling, "circle" over and over. He was carrying a square puzzle piece that he wanted to show me. I'm thrilled that he understood he needed to use a "shape" word to label it.

Object du Jour: A little poster of Mack the Truck from Cars that came with one of his die-cast Cars. He's very confused as to why Mack's headlights won't turn on. :0)


Thursday, December 27, 2007
Stuck stuck stuck stuck stuck Oooo, we have a new word. He's said it about 1 million times today. Sometimes appropriately, sometimes just to say it. He's currently standing here as I type this saying "stuck" over and over and over. Don't little boys come with off buttons? :)

His other new word "self". He refers to himself as "self". Not sure where that came from. We've had a lot of discussions about lamps and paper towel today too.

Now he's sitting on his potty seat telling me "self stuck". Jackson got "stuck" under the Ottoman today. I pulled him out and with a very sad face he leaned over and gave the Ottoman a hug. Such a sympathetic little man! J has been giving everything in the house "ugs", his cup, puzzle pieces, pens, toys, cars, his baby doll, it's adorable!

J found the Cars Piston Cup 500 he'd gotten for Christmas. We haven't taken it out of the box yet because we haven't gotten batteries for it. He looked at the box for a long time, looked at Daddy and said, "I want it." His first real spontaneous three word sentence (with the appropriate pronoun to boot!) Yay!

Object du Jour: The Fisher Price cash register from Santa.


Tuesday, December 25, 2007
Merry Christmas! J had a great holiday! He gots lots of stuff from Grandma and Grandpa, his uncle and Santa. More will be coming for the other set of Grandparents. His favorite thing is his little table and chairs set. He loves to take his new puzzles, cash register and Cars toys and play like a big boy at the table. This is the first year that he opened his gifts all by himself, without help from us or his cousin. He opened a Lego truck from his Godfather and yelled, "Oh wow!" My niece, who's 4, opened her Littlest Pet Shop and said, "I've been wanting this my whole life!" :)

He's been talking tons about "triangles", "circles" and imitating color words. J is able to ID circles most of the time and we had a blast drawing them on his new Magna Doodle. Colors are a more abstract concept for him, but he loves having me label the colors of objects.I'm amazed at the continued language burst. He's labelling everything he can get his little hands on. It's really wonderful how much he's talking. J is also starting to tell me when he hurts himself. If he falls, he yells, "bonk!" Which means "I've bonked my head, foot, knee, etc.", but he's becoming a bit of a Drama King about it and yelling bonk and crying over the slightest movement out of his control.

Eating is so-so. He's only taking 3/4 cups per day and banbans have gone out the window. Not sure what changed. He will ask for the bananas and then refuse to eat them once presented. We have GI clinic next week, so it looks like another discussion is in order.

Object du Jour: Everything! He just ping-pongs from one thing to another.


Sunday, December 16, 2007
We took J to see Santa yesterday. A local bank had a visit with Santa for children with special needs. It was really nice, not too overwhelming for the kids. J sat next to Santa to get his picture taken, but he was more interested in the fake fireplace behind Santa. He got a little bags of goodies, including a new Matchbox car. We got a make a little picture frame for the picture they took at the bank. He carried the picture in the frame around for the whole afternoon and keeping hugging and kissing it.

We then went to a toy store to try to find J a bus puzzle for Christmas. We ran into two of J's old classmates from 0-3. The kids didn't seem to recognize each other, but it was nice chatting with their mom.J is continuing to spontaneously label objects and animals. We sat last night and put together his animal puzzle. He put all the pieces in without my help and labelled cat and dog along with their sounds.

Object du Jour: The Santa picture.


Thursday, December 13, 2007
J just seems much more "on" lately. He's using more words, spontaneously labelling objects, using more eye contact and is interacting better with toys. Here's a bunch of little things that happened over the last few days:I asked him to go find his light up duck. He was gone for a few minutes, came back and shook his head and said "find it?" He was telling me that he couldn't find it. Another day, he pulled me into the living room to play with him and said, "sit down" using awesome eye contact. He brought home a book about vehicles today from school. He labelled train, bus, car, and boat when I asked what they were. This is one of the first times that he just didn't repeat, "is it?"

J took out the Little People, furniture and the house yesterday. He put the people night-night, on the potty, at the table, and in different vehicles. It's so nice to see some imaginative play emerging.

He also has a new word that he uses all the time: Banta! I have no clue what it means. I thought maybe he was saying Santa, but he can say that clear as day. So if anyone has any ideas as to what a Banta is, I'd love to know!

Eating is still going pretty well. We're still ending up a little short on the formula at the end of the day, so we still have to use the tube, but hopefully that will decrease over time.

Object du Jour: The Little People sets.


Sunday, December 09, 2007
Whoa, I haven't updated in awhile!We had a GI appt last week and J is now at 91% of his ideal body weight! 23 lbs, 7 oz! So, now our new goal is to up his calories during the day by concentrating his formula more and decreasing the night feeds through the tube. It will be great to move toward losing the tube! He's requesting "banbans" (bananas) several times a day, which is something he's never done before!Words are still coming fast and furious! He's now throwing his arms up in air and saying, "Touchdown Faaaavre!" It's really funny!

We went to visit a friend in the hospital who just had her baby. While I was holding the baby, Jackson kept covering his mouth, shaking his head and saying, "baby", he then burst into tears. Hopefully, this isn't a sign of things to come! Baby boy number two will be here January 4th!

I'm including a link to a an interview I did about Jackson. It's always great to be able to share info about trisomy 4p and Maya is doing a great job with her Podcasts! http://trisomyvoices.podbean.com/

Object du Jour: The Target flyer. We sat and talked about the cameras and phones in the paper for a really long time! :)


Thursday, November 15, 2007
More picture fun! J has two sets of pictures, one that is just photos of common objects and one that's cartoon-y drawings of objects. He found a picture of a chair from both sets and brought them to me. J made me point and label them over and over. He then took one at a time and sat on them and said, "chair!" He's also really interested in phones and cameras. Anything long and skinny, like the remote, is a phone. And anything retangular, like blocks, is a camera. He walks around with the remote up to his ear, nodding and saying, "yes, yes" or "grandma or daddy." He likes to lick the remote, which makes it do all sorts of wacky things until it dries out.

Eating is still the same. He stole a teddy graham from another child at school and mushed it up in his mouth before they got it away from him. I'm glad it wasn't something with milk in it.

New words: pocket, friends, Evan, "no mouth" (I wonder where he hears that!), Mickey Mouse (who has been renamed "no mouth"), animals, cow, he's also starting to imitate some animal sounds.

Object du Jour: The phone.


Monday, November 12, 2007
My little chatterbox! J is copying a lot of things I say now, especially the last few words. If I say, "Do you want to have it?", he'll say, "Have it." Today we were playing with a bucket of letters that stick to the fridge. He found an H and made me label it over and over. I asked him to go in the kitchen and find another H from the other set of fridge letters. He was gone about 5 minutes and came back with the other H. I about fell over! I looked in the kitchen and he had taken the other letters down and laid them on the floor, I think, to narrow down the field to pick from. I asked him to find a W and a K, but he wouldn't do it. I'm going to keep trying though, I want to know if this was just a fluke or not.

We met with the BP last week to talk about more strategies to increase J's oral formula volume. Weight was 22, 9. We're now going to attempt a negative reinforcement strategy, as opposed to a postive one. This doesn't mean punishment, it means removing the undesired object (the cup) as a form of reward. I hold the straw to J's mouth until he takes a sip, and when he does, I remove the cup and praise him. So far, he doesn't like it, but it seems like the meals have been so hit or miss. He will either suck the whole thing down in record time or start saying, "all done" after three sips. We'll go back in two weeks to meet with the BP and nutritionist.

Object du Jour: The big 'ole bucket of letters.


Monday, November 05, 2007
We went to Allergy Clinic last Wed. Not much new to report there. We will repeat the RAST test for milk and peanuts around J's 4th birthday. J has been requesting solids lately and finishing them! But, he's still iffy on the formula, which is where a majority of his calories come from. We will be meeting with BP on Thursday to talk more about what to do.

J went trick or treating last Saturday. He said "all done" after one house. I think because he's never had candy, the whole concept is lost on him.

I'll post pictures of his costume later today (hopefully). If you watch The Office, you'll totally get it! The things I do to my kid!

J is starting to spontaneously match things and bring things to me on request. He still has obsession with buses. We were looking at a book last night that had a bus in it and he went and got his school bus puzzle piece and laid it on the picture in the book. This morning he brought me his hat on request (and kept it on the whole way to school, which is an even bigger feat!)

Object du Jour: His hat and a small fringy blankey.


Thursday, October 25, 2007
Eating has been quite the struggle lately. J will drink a few ounces and then say, "all done" over and over. Rarely will he let me know he's hungry. He's doing well with solids though. Part of me wonders if he's just sick of a liquid diet. We will be seeing the BP in the next week or so to see if we can get this sorted out. I really, really don't want to lose the little weight we've gained.

I found a bag of common object pictures from my teaching days and J is having a blast taking them out and having me label them. He imitates the words and even has me "dial" the picture of the phone. :) What really surprised me is how he'll take a picture and then find it's real-life counterpart in the house. J took a picture of a radio, grabbed my hand and brought me to the satillite radio we have. He did the same with the picture of the building blocks, the phone and a truck. He's really something else!

This weekend is the big neighborhood trick or treat. This is the first year that we will take J house to house. He can't have much of the candy, but I think he'll love the experience.

Object du Jour: Pictures, pictures and more pictures!


Monday, October 15, 2007
Poor J woke up last night at 3 vomitting. He had a fever of 101.2. Today he just laid around and his fever went up to 102.4. He was finally feeling a little better right before bed, but it looks like he's developed pink eye. So, I guess he'll have to miss another day of school tomorrow. He was able to eat some today. I was mixing his formula with Pedialyte, I really don't want him to end up dehydrated or lose any weight. I did call the nurse who wasn't much help. They don't want to see him until the fever lasts 3 days. I did get some meds for the pink eye though.

Object du Jour: The fringie blanket and an hour and a half nap on mom's lap.


Sunday, October 07, 2007
Eating has been so-so the last week. Although, he did eat two jars of Stage 3 Bananas today in one sitting. I'm having such a hard time finding new foods that don't have milk in them. I think we'll have to make another trip to Whole Foods this week. We have been able to increase the pump rate to 60 ml/hr, so he's done by 2 am, instead of 4 am. His appetite in the morning has improved since the change.

J's word imiation has become fast and furious lately! Sometimes the words stick in his vocabulary, sometimes they disappear as fast as they came. His new thing is "is it?" for where is it?

School is continuing to get well! The principal at J's school said if the kids met their fundraising goal, he would wear a dress to school. Last Friday, there was Mr. L in the hallway with a flower print dress, heels, knee highs, and a red wig. J was so confused. He didn't know whether to laugh or be scared! I'm pretty impressed that by the third week of school, Mr. L knew J's name. Maybe that's because he's the tiniest student there!

I wanted to add a quick note that in January J will be a big brother! I won't put too much about it here, because this is J's blog. But, I'm sure there will be some fun stories once little brother arrives! Jackson has no concept of what's coming. Every once in awhile, he'll pat my belly, like, "Hmmm, that's different."

New words: "is it?", cute, bit, I know there are tons more, I need to start writing them down!

Object du Jour: Yet another box of gum!


Sunday, September 30, 2007
J is finally feeling better. Appetite hasn't been great, so we're going to start the move to more oral feeds next week. Luckily, the pool PT has an opening for tomorrow, so J won't miss pool! J sat on my lap and watched about 20 minutes of the Packer game. He's now saying, "Favre!" He would clap with me and cheer the Pack on! Now when I ask him where Favre is, he goes to the TV.

New words: Favre

Object du Jour: Bristle Blocks


Friday, September 28, 2007
Poor J had to miss his first day of school. He's so sick. No voice, can't breathe out of his nose, coughing, all that fun stuff. I cancelled his pool therapy today too. I'm glad his doesn't know he's missing it. He's just laying on the floor with his "fringies" watching Elmo. I could tell he wasn't feeling well yesterday at GI clinic, he was almost falling asleep in the highchair!Had a GI appointment yesterday. 22.13, so he's down a bit. We discussed increasing the volume during the day and decreasing the night feeds. This means we're working toward all oral feeding. The dr. said she's "proud of everything we've accomplished." That was really nice to hear. It's always reassuring to know we're doing the best we can for J. I would still like to see more weight gain. He is getting braver about trying new textures and foods. So, overall, things seem to be moving in the right direction for him.

J tried Jello in speech on Tuesday! He tasted it and then took the spoon and ate a few bites on his own!

Dorie, thanks for taking the time to come and see us yesterday! We'll miss you! Good luck!

New words: what's that?, Gramma, Grampa, nose

Object du Jour: The fringie blanket and Elmo.


Thursday, September 20, 2007
A little sense of humor is starting to shine through! Jackson has the Discovery Toys soft box filled with little stuffed animals. He took all the animals out and put a car in the box. He brought me the box giggling the whole time. When I looked inside and said, "Hey, there's no animals, I see a car!" He said, "funny!" I think he was trying to play a trick on me. So cute!

School is continuing to go well. He did cry a little when I left this morning, but they said he did fine.

New words: funny

Object du Jour: His Ratatouille camera. He loves to take "pictures." I think Santa is going to bring him a kid's digital camera. I can't wait to see what he will take pictures of!


Saturday, September 15, 2007
"Cars", J's first real movie! Our neighborhood association has a movie night every year (which Daddy is in charge of). Everyone camps out on the school playground with blankets and snacks and the movie is shown on a giant inflatable screen. J's friends L and K came to watch with us.J didn't like the music for the dance party before the movie or the clowns passing out glow bracelets. But when the movie finally started, he sat on my lap and stared at the screen. He had corn puffs and a juice box for a snack. What a fun night!

Object du Jour: A cool yellow glow bracelet.


Thursday, September 13, 2007
Excellent speech therapy session today! J took bites from a cracker with his front teeth! We're getting closer and closer to chewing! Hopefully, it will continue and we'll have something new to show GI clinic next week.

School was a little rough today. J still has trouble with chaos and loud noises. I guess he spent some time in the aide's lap with his hands over his face because of the noise in the classroom.

New words: Apple, puff (corn puffs), cook, and a certain swear word that begins with an "S" that mommy needs to stop saying while driving.

Object du Jour: Puzzle pieces.


Monday, September 10, 2007
Visit with the BP today. Weight was 23.10 He was really pleased with progress J has made, even since the last visit. J is getting more adventurous with textures and biting down on solid food. J showed Dr. S how he can eat mashed peaches without gagging or spitting out too much. The Dr. was also impressed with J's attempts at communication to let me know what he wants.We talked about continuing to advance textures and give him more exposure to biting on foods. We also talked about getting J to feed himself with a spoon. Well, the little booger must have been listening because tonight for dinner he took the spoon from Daddy and ate almost a whole jar of bananas with NO HELP! It was messy, but he did it! Maybe it's the new Elmo spoons or watching the kids at school eat, I don't know. I've said it before and I'll say it again, this kid amazes me daily!

On a bummer note, we found out that the GI nurse is gone to Texas and J will see a new one. We really liked the one we've had, she's been with us since the beginning.

New words: diaper, coke (as in Mama's Diet Coke can she won't let him have).

Object du Jour: The Elmo spoons and Zoe forks. He's been carrying handfuls of spoons all day!


Saturday, September 08, 2007
Got the formula mess straightened out. Talked to a different manager who is going to order 18 cans at a time, instead of 9, so they always have it in stock. He was much more helpful that the last one.

J was up at 4:00 am this morning. I've found that if he goes to bed any later than 7:30, he's up waaaay too early. If he's in bed by 7:15, he usually sleeps for 12 hours and the day goes much smoother. He was very whiney and tantrummy (I'm great at making up words!) today. J ended up falling asleep on the floor in the dining room for an hour. It's now 7:13, and he's already asleep for the night.

New words: Bubble, pants

Object du Jour: A sock from my clown costume. Hey, I can't make this stuff up. lol


Friday, September 07, 2007
Oh, why did Osco have to leave town?? I have been having so much trouble with Walgreens getting J's formula. Osco would have it the next day by noon. I call Walgreens and it takes 4-5 days and it's been one problem after another. They've tried to sell me expired formula (two months in a row, the case was water damaged, so I knew it was the same one), dented cans, and now today, they didn't have my order when I went in to pick it up. The manager had the nerve to try to blame it on me and the pharmacy person said that it was written in the book and never ordered. When he found out it was their error, I got lots of double talk. I'm under a time constraint as to when the formula can be paid for because we have WIC checks through Medicaid. (The formula is 50.00 a can!!) The checks expire tomorrow. They claim they will get it from another store by tomorrow. They initally wanted me to go pick it up (I will if I absolutely have to), but this is their mistake. I'm not going to hold my breath. We're talking about 450.00 worth of formula that I can't pay for out of pocket. Ugh. Anyone know anything about CVS??

J was happy when I dropped him off at school today and did a little dance on the way to his classroom. Good day!

Object du Jour: Back to Boo's Door again.


Thursday, September 06, 2007
Yay! We have a haircut, no more Luke Perry sideburns! We left covered in hair, but it's done. J was a little apprehensive at first, but Mr. Tim put on Elmo for us and all was right with the world! J looks like such a big kid now!

Second day of school. I dropped him off and he was scared. He kept telling me "upanddown", translation: "pick me up and let's get the heck outta here!" The aide said they played in the gym and chased balls. J didn't cry at all, but she had to hold him several times.

J has a new friend in his class. I talked to the boy's mom and they live two blocks from us. Small world! We talked about getting together to let the boys play. It will be really great to have another special needs mom to chat with.

Object du Jour: A duck keychain from the hair place. It quacks and lights up. J loves it, he's napping with it now.


Tuesday, September 04, 2007
First day of school! J did really well, although he said, "all done" within two minutes of being in the classroom! The aide said the other kids kept trying to hug him. When we went to pick him up, all the moms lined the hallway waiting for the kids to be brought out. J stopped at each mom and looked like, nope, that's not her, until he got to me. Too funny!

No school tomorrow, he's off on Wednesdays, so we're going to attempt the haircut again. I've put a picture on the front page of my big boy with his backpack, Wiggles, of course! I didn't even cry! :)

Object du Jour: A comb, gotta look good on our first day of school!


Saturday, September 01, 2007
Met with the Geneticist yesterday. Very good visit! Dr. B was very pleased with everything J is doing and, I think, a little surprised! He was so happy with J's progress, he doesn't want us to come back until J is 5.J's weight was 24.3 lbs. and his height is 33". His head measured in the 5th percentile, but his height and weight are off the charts because, now that he's 3, he's on the big boy chart. The Genetic Counselor was a little doubtful that J has so many words, but when the Geneticist made him mad by measuring his head and testing his reflexes the words started coming fast and furious. I put him down after the head measuring and he went to the door and started yelling, "down and out, down and out!"

Object du Jour: A little wind-up horse in a clear box. The horse can be wound up while still in the box and then he gallops. Very cute, I think he's sleeping with it now!

Monday, August 27, 2007
Happy dance! J's bottom two teeth are there and they are on their way in! We had x-rays done at Children's and although he wasn't super cooperative, we got the info we needed. The dentist said she did see a few of the adult teeth too. The baby teeth on the bottom are pointy-er (is that a word?) than typical teeth, but they are there!

The dentist gave us a cool new toothbrush that has a longer handle so J can hold it at the top and help us brush his teeth. Cool!


Object du Jour: 3 cool new toothbrushes!


Sunday, August 26, 2007
Whew, even though J is three, I think we've entered the "terrible two's." He's really started tantrumming over not getting his way and things not going the way he expects. This is really difficult because he doesn't yet understand reasoning or if/then consequences.

Today, he kept trying to put Boo's Door (see previous entry) through the crack between the toilet seat and lid. I asked him several times to stop and then I removed him from the bathroom and shut the door. The ensuing tantrum was unlike anything I've ever seen from him. Foot stomping, crying, screaming, throwing the door; it was ugly. On one hand, I hate seeing him like that, but on the other, he's demonstrating typical kid behaviors (as ugly as they are).

Tonight, after I put him to bed and read him a story, he started crying. I went up and he said, "all done", I said, "No, time to sleep". He then signed open, me, and said up, down, and open. He was trying everything he could to get out of bed. Too cute! He's finally asleep now.

Daddy was a clown at Mexican Fiesta today. Jackson hated it. He thought the dancers were mildly interesting, but was very scared of the music. We didn't stay long.

New words: mouse, do it, else, mouth, enough. He's become quite the parrot lately.

Object du Jour: A hanger. Wow, what fun!


Monday, August 20, 2007
Sorry it's been awhile since I've updated! The laptop broke and now I have to head to the basement for computer time, which is hard with J. The basement is not kid-proofed!

Straw drinking is continuing to go very well! The intake volume is increasing, which means we will soon be able to decrease the volume of night feeds. I really hope this continues, maybe there will someday be an end to the tube feeds altogether.

GI was very happy to see how well the straw drinking was going. They have him at a little over 23 lbs. and his ped has him at 24 lbs. The ped is now weighing him on a stand-up scale as he's over three now. The ped also signed off on the Hippotherapy, so hopefully we'll get that going soon.

We took J last week to register for school and to get his very first school picture taken! The lady taking the picture orders didn't think J was old enough for school! He was scared at first, just like the horrible visit to JC Penney for his three-year pics, but he ended up loving the flash and would tell the cameraman "pop" to make it flash again. I'll post pics from both sessions when we get them back.

This morning, he was wet from the tube leaking a little overnight. I took his PJ's off and went to get a diaper. He followed me saying, "clothes, clothes". I swear he's the only kid who doesn't like to be naked. :)

New Words: pop, pool, hug, step, boom, get it, horse, sheep, cow, brush, clothes and dab.

Object du Jour: Since I'm down in the basement, I'm finding toys from my old teaching days that J has never seen. Today I found Boo's door from the Monster's Inc. movie. He's been carrying it around all day and having a blast opening it up to peek at me!

Friday, August 03, 2007
After almost two weeks of tears and tantrums (most of them mine!), Jackson is now bottle-free!! He's been straw drinking exclusively for a week. I never, ever thought we'd get here, but here we are! We need to keep working on volume, but he's getting there!

Yesterday, during speech therapy, J drank 6.5 oz AND ate 3 oz of peas and rice. That's the most he's taken at one time for as long as I can remember!

We were at the play area at the mall on Wed waiting for some friends. A little boy had a school bus and he kept showing it to J. Jackson kept reaching for it, and I told him, "That's his bus." Jackson immediately said, "bus, bus, bus." We got home and I showed him his Matchbox bus. He played with it most of the evening. The next morning he woke up saying, "bus." I asked him to show me where the bus was. He went straight to his car box and picked out the bus (the box is almost full and holds 48 cars). He continues to amaze me every day!

New words: Crash, bus and camera.

Object du Jour: Daddy's broken digital camera. I know what we're buying this weekend!


Monday, July 30, 2007
Happy Birthday to my sweet little fella! He's a big three year old now.Woke up this morning at 4:30 am to a little voice saying, "alllll dooooone". Um, nope, we are definately not all done sleeping at 4:30 am. I'm really glad I taught him that phrase!We took him to Chuck E. Cheese for his birthday. He hated every second of it. Didn't want to play any games, no rides, no slide, nothing. He just clung to me or Daddy. J was much happier at Applebee's, sitting at the table, coloing with crayons and playing with his toys.His birthday "treat" was Gerber Strawberry Banana and apple juice (don't tell the GI Clinic). He wouldn't drink the juice at all. I think all this straw stuff has confused him a bit. We came home and he got to open his presents. He was very excited with all his new stuff!

Straw drinking is getting a little better. We have times where he will only put his mouth on the straw and times where he will actually drink a few ounces. Almost no crying. Definate progress! He even said, "sip" a few times!

Went shopping today and bought *gulp* school clothes. Next we need to get all the other little things he needs to bring to school. Only a few weeks away.

New words: swim, stuff, close, sip, ten, Jeff (from the Wiggles). Another three word phrase, "all done mom".

Object du Jour: All his cool new birthday presents. The Bristle Blocks are a big hit!


Saturday, July 28, 2007
Loooong week. The BP called back Monday night. New plan was offer the bottle after J took a sip out of the cup. That went well (I'm rolling my eyes). He would scream when he would see the bottle. I know a lot of you that read this can't believe J screams. Trust me, he's got a great set of lungs!

Sooo, after a week of this, I called the BP back and we went in Friday to see if he could help us. He coached me through one way glass with the earpiece again. Of course, J drank from the straw. There were several bubble blowing bouts, but he still drank. Booger. We were there for about 90 minutes. The BP gave me his pager number and told me to call if it got bad again. He also said to start bolusing J after the cup presentation because he's lost 5 oz in the last week.It got bad again. Last night we went out to dinner. No drinking from the straw, but he would put his mouth on it without tears. Today, we were back to the kicking and screaming when the cup was presented. He'd also vomit the bolused liquid. Call BP. He gave some more suggestions and said to call again tomorrow.The little booger drank at the last presentation of the day. He took about 5 oz. I may not have won the war, but I've won that battle.One thing that I total disagree with the BP on is letting J mouthe toys. The boy walks around with something hanging out of his mouth at all times. Doesn't matter what it is. Paper, toys, books, baby wipes, anything he can get his lips on. BP says this is because J is "developmentally at a 4-5 month feeding level" and I should let him do it. Because that's what babies do at that age for exploration of objects and pre-chewing skills. (Tracy, I know you are rolling your eyes too!) I'm not going to encourage the mouthing of objects unless it's an appropriate thing to mouthe.

Daddy took J to a waterpark today. J was hestitant, but had fun. Toward the end when he had had enough, he looked at Daddy and said, "All done home." First three word phrase!

Object du Jour: A cool singing Jo-Jo's Circus card his aunt and uncle sent him for his birthday. He was a little surprised at first, but now he loves walking around with it and bopping to the song.


Monday, July 23, 2007
GI Clinic last Thursday. He gained a pound, so we're now at 22lbs, 15 oz. The nutritionist says he's a 91% of his ideal body weight. Basically, the new goal is to quit the bottle cold turkey. To say it isn't going well is the understatement of the year. We offer J his formula in a straw cup only every three hours. If he doesn't drink it within 15 minutes, he's done until the next feeding. Saturday, he thought it was a game and only took 7 oz for the day. We still connect him to the pump at night, but no juice boxes or snacks.Sunday, he screamed and cried every time the cup came out. At 5 pm, I couldn't take it anymore and offered him a bottle and he wouldn't eat at all. Daddy sat with him and helped him take 3 oz. Today, same thing, screaming and crying every time the cup came out. I caved after two bouts of this and offered him a bottle. He sucked it down and then vomitted all over himself. I have a call into the Beh Psych, but he didn't call me back. I'm not sure what to do next. I don't want him to lose weight, or become aversive to eating altogether.

Today was his last day of 0-3. They gave him a Wiggles book and a cool Spongebob Squirt toy for his birthday. I'm sad on two levels: I'm going to really miss the people that took such good care of him for so long and I'm not ready for him to be a big three year-old going to big-boy school.

New Words: phone and uv oooo (love you!!)

Object du Jour: The Wiggles book.


Wednesday, July 18, 2007
Oy, the drama! Who knew a haircut could be so traumatic! J has been getting haircuts for over a year and now, all of a sudden they are scary. This from a kid who sees every doctor under the sun and doesn't bat an eye.He walked to the back of the salon, saw Mr. Tim and turned on his heel and ran back to the front door, saying "go go go!" I held him on my lap in the chair and he was good until the clippers came out. We ended up leaving the sides and back unfinished. Mr. Tim only charged us for half a cut and gave J 4 stickers. Hmmm, maybe a mullet will be a good look for J. Just in time for his 3 year pictures.

I think, developmentally, he's just entering the "clingy to mom, fear of everything" stage. So, things that weren't so scary before, are now hard to take.

Object du Jour: Alphabet fridge magnets.


Tuesday, July 17, 2007
IEP meeting went well yesterday, no surprises. He'll been in a classroom with 4-5 other 3-4 year old little boys. I haven't met the therapists yet, the summer eval team is different than the school year team. The teacher that did the eval will be J's teacher. J will not be riding the school bus, there's only so much change I can take! :) I'll be dropping him off and picking him up. We got his little school list of things he needs to have crayons, Kleenex, a box of Playdoh, that kind of stuff. I'll also need to make sure he has an Epi-pen, Benadryl and his own allergy-free snacks.

Two new words: Elmo and animals

Object du Jour: A stuffed talking Elmo. He'll bring it to me and say Elmooooo, so I'll push the button and make him talk.


Sunday, July 15, 2007
Been a long time since I've updated!Let's see...last Monday he has his school testing. He walked in the room and found the toys, wasn't shy or hesitant at all. I was overwhelmed with all the questions being thrown at me from 7 people, but J handled it in stride. They sat him at a table and presented tasks for him to complete. Some he did, some he didn't do. We'll find out the results at tomorrow's IEP meeting. The nurse sent me an advance copy of the IHP for J's tube and allergies. I'm pleased with the with the way the plan is laid out.

Thursday we had Eye Clinic. Nothing really new to report there. They had him look at things near and far (I'm hearing Grover's voice in my head lol), asked how much his eye is wandering and said, "See you next year." I'm concerned about J's depth perception. He often has difficulty going from tile to carpet, tile to tile, basically from one surface to another. Dr. wasn't concerned at all.

Thursday afternoon we went to the zoo with J's uncle and cousin M. J followed M around like a puppy and wanted to do everything she did. Very cute!

Speech is trucking along. He's copying new words every day. Ball, tag, don't and stop are new ones. Gee, I wonder where he hears don't and stop. :)Eating has stalled. J won't try anything new and Heaven forbid, it be something wet or cold. He's pretty much sticking to formula, water, juice, bananas, green beans, pretzels and Gerber Wagon Wheels. Formula has to be in a bottle, water in a water bottle and juice in a box. If I offer raw fruits or veggies, or a food he hasn't seen before, he grabs my wrist and pushes my hand away. GI is this Thursday, I'm sure they won't be happy, but I don't know what else to try.

Saturday we went to the mall and J tripped and fell. He hit his head on the floor in Macy's. It looked like someone stuck a purple golf ball on his forehead. I picked him up and he threw up and felt limp. We scooped him up and ran to Children's ER. They did a CT scan, pronounced him "mildly concussed" and sent us home. He's doing fine now.

J will be done with Birth to Three in two weeks, but he'll continue with feeding therapy and pool. It's sad, he's been with them for his whole little life, but I know school will be good for him.

August will be busy, J has Genetics, his 3 year check-up, and Dental Clinic scheduled.

Object du Jour: All kinds of stuff he hasn't seen in awhile. We steamed the carpets today and had to move all his stuff. He had a blast exploring his rearranged toys.


Thursday, June 28, 2007
What a crabby boy! I don't know if he's still not feeling well or what, but he's crying and whining over everything. No nap today which isn't going to help. I gave him some Tylenol, so hopefully that will do something.We had to go into the GI Clinic yesterday because J's button seemed loose and leaky. He's woken up soaked the last two nights and I'm seeing some stomach juices coming out if he doesn't have a pad around the button. The nurse didn't think it was too loose, but she gave me a smaller size to try. I haven't changed it yet, because, of course, it doesn't seem to be leaking now and he was dry when he woke up this morning. She did say that if a child is coughing a lot, the button can loosen temporarily. We had to wait over 30 minutes for the new button to be brought up from the pharmacy and J used that time to discover the joy of an Etch-A-Sketch. He thought it was so funny watching the lines go up and down. Maybe that's a good birthday present for him.

Object du Jour: His fringy blanket and watching the Teletubbies are the only things that make him happy today. So unlike him.


Monday, June 25, 2007
Whew! Busy weekend! We had family here and J loved it! He had so much fun with everyone! He chatted so much this weekend, it was great to have everyone finally here him speak.Thursday night, J started with the croup-y cough again. He coughed so much, he threw up several times, so we had to disconnect him. Took him to the ped on Friday and she gave us a script for steroids to prevent the cough from evolving into strider, which then evolves into a one-way ticket to Children's ER. It worked, but he's still coughing so much at night he's vomitting, so he hasn't been connected to the pump since Thursday. We'll try tonight and see how it goes.

We've also had to start bolusing him again. He is taking too long to finish a feed and he almost never lets me know he wants to eat. I'll bring it up to the GI clinic.Yesterday was the G-tube picnic at the zoo. J got a Fisher Price Dinosaur set and a football for coming. We didn't win any of the big family prizes, bummer! We walked around and looked at the animals and J saw the bear and pointed at it. He's really starting to notice more things in his environment. He's also starting to show interest in trucks and trains from the car window.

Object du Jour: A small version of the fringy blankey. He's been clingy and whiney today, I still don't think he feels well.


Thursday, June 21, 2007
With increased speech comes the sassiness! Our naptime conversation today after him playing around in bed for an hour:
Jackson: Gooooo! *pointing at the door*
Me: It's time to lay down and go night-night.
Jackson: Nooo, no, no, goooooo! *points at the door again*
Me: Lay down, please.Then he reaches up and strokes my hair and says quietly, "goooo".

Booger! He eventually won, he's now making a giant mess of the living room, which I just cleaned up while he wasn't napping!

Object du Jour: An Oreo Cookie puzzle game.


Tuesday, June 19, 2007
Word explosion lately! Just last night he started saying, "up, down, and duuuude!"So, now he has: on, off, up, down, dude, Mommy, Daddy, Joel, help, me, more, yes, no, what, go, Choo Choo, cheesy, achoo, shoe, baby, ding, zoom, uh-oh, oh-no, oh boy, oh wow, all done and night-night. I bet there's more, those are the only ones that popped to the top of my head. I'm amazed at the clarity of his speech too. He doesn't drop any letters, for example I hear the "f" in "off" and "p" in "up". He does say "Doel" for Joel though. J often needs prompts to use speech instead just sign, but it's getting more spontaneous.He's still continuing to sign some words exclusively, like "kitty, fish, open, close and Wiggles." If I say, "Beauty mate!" he shows me the sign we made up for Wiggles. (They always say, "Beauty Mate!" on the show.)

Object du Jour: His blankey and an empty Altoids box.

Monday, June 18, 2007
We have a date for the school assessment, July 9. We will be given the results and the IEP the following week. The sheet I got says that it will be an "Arena Assessment". This basically means that all that PT, OT, ST, SpEd, SW and Psych will all be in the room at the same time. Typically one person works directly with the child, while the rest ask the evaluator to try different things with the child. I'm not sure how well that will go, it may prove overwhelming. If not for him, for me! I hope he'll perform for them and show them all the cool stuff he knows!

Object du Jour: An Aflac duck his aunt and uncle gave him. He hasn't played with it in awhile, but recently found it in a basket of stuffed animals. He loves to hug and kiss the duck, it's way cute!


Sunday, June 17, 2007
Happy Father's Day! We spent the day dressed as clowns in a parade in a nearby town! We have a friend who needed more clowns for the Lion's Club float, Randy volunteered and somehow I ended up getting suckered into it too. It was really fun, but super hot in the clothes and wigs on the 2 mile walk. Jackson hated it at first, but by the end of the parade route he was waving and clapping and yelling, "Yesssss!" at the crowd. I think he's found his public! We may do it again for 4th of July.

J has been so chatty lately! He tries so hard to imitate new words. He's probably got close to 20 now. He's following more simple directives and generally more cuddly and social.

Object du Jour: A ginormous Curious George book. We've had to take that book to doctor's appointments, every car ride and Walmart. He doesn't want to read it, just hold it and carry it. Hopefully, I can redirect him to something a little smaller!

Sunday, June 03, 2007
New word: oooooonnnn. J will now say "on" to get a light turned on or a toy opened. It's very cute! He's been very chatty the past few days. I also heard him say "what?"

Today we couldn't find J and we ran through the house and found him downstairs. The little booger figured out how to go down the basement steps. So, we went to Target and bought another gate.

He's been a busy guy this weekend!

Object du Jour: Every.single.piece of Tupperware in the cabinet. Yikes!


Tuesday, May 29, 2007
Sad to report, but the box of gum is no more. :( The little stinker figured out how to open it and dumped pieces of gum all over the kitchen floor. He still has the box, but it doesn't make the cool sound anymore. I guess we'll have to move on to bigger and better things! :)

We worked on coloring today. J wanted no part of it, so I ended up coloring a whole page in the Wiggles coloring book all by myself. He did complete a simple puzzle, so we did accomplish something.

Back to the moving his mouth with no sound again. I have no idea what's up with that.

Object du Jour: A small box of crayons. I took the crayons out, he tried to eat the box, so it's in the garbage now. lol

Saturday, May 26, 2007
Another 3 hour nap today! Zowie!A few days ago I was blow-drying my hair and J came into the bathroom. I pointed to blow dryer at him and he squealed and ran out the room. He did this about 3-4 times. On his final trip into the bathroom, he had a clear Tupperware bowl over his face so I couldn't blow him with the hair dryer. He cracks me up! Excellent problem solving skills!!

Object du Jour: Back to the box of gum again. Who knew?

Friday, May 25, 2007
J was walking down the hall with a bottle in his mouth, with the cat hot on his heels. I said, "J, can you say kitty?" He pops the bottle out, looks me in the eye and says, "no", then turns around and walks away. I was momentarily stunned, but I'm so happy with his attempts at communication lately!

His cousin was here again on Wed. M is so good with J. Jackson would try to mess with the way she had the plastic animals set up. She would tell him, "No, no, but you can have this animal" and she'd swap with him. It was really sweet to watch. She helped me wake J up from his 3 hour (!) nap. He opened his eyes, saw her and started giggling. So cute!

M told me that she's going to marry Anfony, be a badanina teacher, and have one baby. But, she's not changing any diapers. :)

Object du Jour: A box of gum. I bought a box of gum at Walmart the other day. J has been carrying it around for almost 3 days now, he even slept with it last night. I finally got a piece of it today.

Thursday, May 17, 2007
Ortho appointment today. Two techs had to hold him in position to get an x-ray of his hips and spine. He did really well! Very cooperative for a change! :) His hips and spine look "perfect" according to the ortho. We go back in a year to repeat the scan. Kiddos with J's condition have a tendency to develop scoliosis and they just want to stay on top of it, if any changes occur.

I think he's starting to feel a bit better today. Still no real vocalizations, but his mood is much improved.

Object du Jour: A little wind-up pink mouse that does backflips.

Wednesday, May 16, 2007
Wow, it's been a long time since I've updated (sorry, Mom!)Last Thursday Jackson had the soy challenge. He passed, which is great! But, the next day the diarrhea started. Then he woke up from his nap with his right eye swollen shut. The allegy nurse feels it's a coincidence. I'm not so sure. J was sick pretty much all weekend, hoarse voice, runny nose, diarrhea and vomitting (which are all warning signs of a reaction on the sheet the clinic gave me). He's better now, but he won't talk. When he does, it's just a whisper or he just moves his lips. They want me to try soy again in a week and we'll see what happens.

His eating has decreased quite a bit with this illness. Hopefully, he will recover quickly and won't lose any weight.

We went to a trisomy fundraiser over the weekend. Jackson to see his friends L and T. It was a great weekend! Daddy won Summerfest tickets and a John Travolta movie pack in the silent auction.

For Mother's Day, Daddy and J went to the market near our house and did the "decorate a cake for mom". Daddy said J loved to put the sprinkles on it and had fun putting the picks in the cake. They tried to write "mom" on the cake together, the first M turned out well, the rest, not so much. :) They then took me to get some new scrapbooking supplies.

We went to a playgroup today. J played by himself almost the whole time. It's makes me a little sad to see that. I really wish he'd show some interest in other kids. I see the kids try to interact with him and when he doesn't respond, they move on. Hopefully, school will change some of that.

Speaking of school, I sent back the consents to the school district today. Here we go.

Object du Jour: The car toy he stole from the hair salon. Well, actually he didn't steal it, but he cried so pathetically when it was time to go, Mr. Tim said J could keep the toy.

Friday, May 04, 2007
Daddy and J are at swimming, so I have a moment to update!We had our GI appointment yesterday. 21 lbs, 8 oz. Down a little from last GI visit. They said he's at 87% of his ideal body weight, and they would like to see him at 90%. Well, we're pretty darn close! These visits always frustrate me a little because I work so hard, and they tell me everything we're doing wrong. I think part of the weight loss is all the BM issues we've had over the last few weeks. It's certainly not lack of eating!

The BP was concerned about J's refusal of "non-preferred" foods, so they gave me an earpiece and coached me from behind one-way glass while I fed J. And, of course, J ate fine. Blah. J did pick up a new word while we were waiting to be seen. We have a Thomas Train keychain. Thomas goes around the track in a circle when I pull the chain. J would say, "Gooo" and I would tell him to say, "Go Choo Choo". We compromised and he said, "Go Choo". Yay!

Changes we are going to make based on this visit is to offer J his formula through a straw cup, instead of the bottle, and offer him more bits of real fruit to practice chewing.

Because of the potential wheat issue, we're going to make a run to Whole Foods and the Gluten Free Trading Co tomorrow to find some more snacks for J. I checked out the GFTC site and a 14 oz bag of gluten-free pretzels is 7.99!! Dang, I hope he likes them!

Object du Jour: A deck of playing cards. Which are now all over the house!

Wednesday, May 02, 2007
First nap this week! J has been refusing to nap and then when we put him to bed, I can hear him up there playing until 9-9:30. We'll see how tonight goes!

Also, today marks his first solid BM in weeks. I'm really starting to believe it's the wheat. Our GI appt is tomorrow and allergy is next week, hopefully one of them will have some insight.

The new game. Taking a plastic waffle and tapping it on the picture above the couch. And I have to yell, "Waffle, Waffle, Waffle!!" J laughs so hard! Every time he finds the waffle, he brings it to me and says, "Gooooo." Last night, he was saying, "Gooo Daddy!" to make Daddy tap the waffle. I think I'm also hearing a one word version of "I don't know." Another new sign. Sort of. :) J will point at my water bottle and then point to his nose. I guess that means he wants a drink. He's done it a few times today. It's pretty cute!

J's cousin came over to play today. She's one year older. He just thinks she's the coolest person ever. He follows her around and tries to do everything she does. J doesn't do that with other kids in playgroups or therapy. He seems almost fearful in those situations. M seemed a little confused as to why Jackson doesn't talk. I told her that he has some words, but he can talk with his hands too. She thought that was really funny. I think she knows that J is different, but doesn't quite understand yet.

Object du Jour: Any toy M decided to play with. :)

Friday, April 27, 2007
J has been having diarrhea since his discharge from the hospital. I don't know if it's a hold over from the Rotavirus or the re-introduction of wheat. I took him to the dr. earlier in the week and she said that it could be either one, however, she doesn't think the Rotavirus would last more than a month or two after the initial infection. We are going to discontinue wheat for two weeks and see what that does. If that doesn't work, she mentioned something about doing a biopsy.

We went to playgroup today. I would really like to see Jackson interact more with other children. He keeps to himself and does his own thing. A boy took a toy away from him and J signed "more" to get it back. That didn't work, so he just took it back. The boy took it away again and poor J sat there crying, signing "more". Poor fella. We got him interested in another toy and all was well.

Object du Jour: Daddy's calculator.

Tuesday, April 24, 2007
Tonight we were watching American Idol and J was playing on the floor. Jordin came on and sang "You'll Never Walk Alone". J stood up, watching her sing, swaying back and forth. When she finished, J clapped and gave her a standing ovation with a big smile on his face. It was so stinkin' cute! He doesn't pay too much attention to TV, but has really been enjoying singing and music lately. He shook his booty to a Gwen Stefani video last week. :)

Tuesday, April 24, 2007
Two more signs! On and off. J loves to tell us to turn the lights on and off. He has so many signs now, he gets them confused. More progress in the area of simple direction following. We ask J to get a diaper out of the cabinet. He will go to the cabinet and open it, but then forgets what he's there for (kinda like Mommy sometimes!) J will play with everything else in there and totally ignore the diapers.

Object du Jour: Pretty much every toy he owns. The living room aka J's personal Toys R Us, looks like a bomb went off. But at least he's having fun!

Saturday, April 21, 2007
Cheesy! We have a new word! Everytime I take J's picture I tell him to say, "Cheesy!" He copied me today and then giggled at himself! What a ham! He loves to look at himself in the camera after I take the pic, so half of the pictures we have of him now show him reaching for the camera!

I got a call from the SpEd Supervisor from the school district today (on a Saturday, wow!). He said they have received J's referral from 0-3 and will be doing his testing sometime in June. The team will consist of OT, PT, ST, SpEd, Nursing, Social Work and Psych. Nope, that's not overwhelming. J will then start school in the fall. No Wednesdays, why not Friday, no clue. I'm so not ready for this.

J will have a GI follow up in two weeks and the food challenge for soy the following week. I don't know what GI is going to say about his eating. The formula feeding has been fine, but solids are still a challenge. He's decided that if it's not banana flavored something, he wants nothing to do with it. We had a major applesauce-induced tantrum last week. Applesauce used to be a favorite, who knows what changed there.

FTR, I did try the sticker reward system the BP recommended. Yeah, that went well.

J and Daddy went on a bike ride today. J rode in the trailer for the first time! Last summer, he screamed anytime we went near the trailer. This time, the only major trauma was the bike helmet. Daddy said J enjoyed the ride, but wasn't too crazy about the bumps.

Object du Jour: The lid from the Swiffer floor wipes. J tries to grab it everytime I open the cabinet under the sink. He walks around looking through it. Goofy!

Friday, April 20, 2007
We went to a playgroup today at a friend's house. We always laugh because he knows they have a gear toy kept under the couch. Everytime we get there, J goes immediately to the couch and looks for the toy. He also remembers where her microwave is. Memory like an elephant!

Because it was so beautiful out today, we took the kids to play outside. J was having none of that. He was so freaked out about being outside, he wouldn't let me put him down. We ended up leaving early, he fell asleep for 10 minutes in the car, which means no nap. Wheee!

Back to the microwave thing. I have no clue what fascination these things hold for him, but no matter where we go, he locates the nearest available microwave. At home, he want us to open it up for him so he can squat down and look inside. Hmmmm. J is a puzzle sometimes.

Woke up yesterday morning to "achoooo, achooo, achooo". Most kids call their mommy or daddy when they are ready to get up. Mine yells, "achooooo" at the top of his lungs. :)

Object du Jour: Refrigerator magnets. I keep stepping on them in my bare feet, they somehow manage to grow legs and walk all over the house!

Monday, April 16, 2007
I would love to wake up one morning and be just a mom.
I don't want to be a supermodel or a moviestar or even a millionaire.
I just want to be a mom.
An everyday, plain Jane in khaki pants and a cute ponytail.
Driving the minivan to soccer practice and ballet. Something so mundane so many moms take for granted and wish for something more.
Yet when the alarm goes off there's meds to be given, labs to be checked. Rush to the doctor's appointments and get in some PT in between.
No time for silly games and funny songs we've got OT and an IEP meeting to attend.
I've got to make sure all of the "T's" are crossed and my "I's" are dotted so he doesn't get "Left Behind".
I'm not just his mom, I'm his nurse, his therapist, his lawyer and his advocate.
Who else will make sure his medical necessity letter is faxed off for his gait trainer?
What I wouldn't give to wake up in the morning, hold my baby boy, kiss his sweet neck, sing silly songs all day and dance funky dances, play childhood games and drive my minivan off into the sunset. While someone else made sure all of the "P's" and "Q's" are in their right places so I could just be his mom.

---A. Henderson---

This was posted on a special needs list I belong to. I wanted to share it because I feel this way some days and it helped to put my feelings into words.

Friday, April 13, 2007
Sorry it's been so long since I've updated! I've been taking a class all week to earn credits to renew my teaching license. It was an awesome art class with an even more awesome teacher. Ask me to see my duck pastel! :)

J had a really fun week with Daddy. They went to a Cleveland Indians game (they were playing at Miller Park because of all the snow in OH), and Betty Brinn Children's Museum.J somehow cut his finger at BB and bled quite a bit. Daddy took him to the front and asked for a bandage. They had to bring out the EMB, Emergency Medical Bunny. lol Jackson got a Sam-I-Am doll and a free pass to come back another day. When I came home, I could hardly tell where the cut was, but Daddy said it was pretty ugly. He's got the bloodstains on his shirt to prove it. J is totally fine now.Jackson showed us he knows how to jump with two feet and stomp with one foot last night. Sooo funny! It was absolutely adorable!

Object du Jour: Echo Microphone. J loves to "dukka dukka dukka" into the mic and then giggle at himself!

Sunday, April 01, 2007
It's now 10:26 pm and I'm still hearing bay bay bay, dugga dugga, lucka lucka, gooooo, mamamama and tons of raspberries coming from the baby monitor. Tomorrow is gonna be trouble with a capital T.

Sunday, April 01, 2007
I forgot to mention that the allergy nurse called and gave us the results of the RAST test. J's levels are up for milk and peanuts and stayed the same for soy. No concern for tree nuts (almonds, pecans, walnuts, etc.) Basically, that means we still have to avoid milk and peanuts. We have a soy challenge scheduled for May.

Object du Jour: Polka-dot fringy blanket (it's still early!)

Saturday, March 31, 2007
We've really been working on, "Bring me shoes/coat/toy, etc." Today I gave J a shoe and said, "Give the shoe to Daddy." He did it! Twice! Granted Daddy was only 3 feet away, but it seems he may be starting to follow simple directives!

We are working on signs for up/down and on/off. Up he has already, but I want him to ask for help to get "down" off my lap or off the couch. He really likes lights to go on/off, so hopefully he'll pick those up pretty quick.J actually ate a baby food meat tonight! It was turkey/sweet potatoes. Go J!

Object du Jour: The Leap Frog Fridge Alphabet. J thinks it's pretty funny to push one letter over and over.

Wednesday, March 28, 2007
First real hug from the love of my life! I asked J for a hug and he wrapped his arms around my neck and patted me on the back! He's so awesome!Eating and therapy were rough today. J has the beginnings of a cold and was pretty crabby most of the day. He's finally sleeping, but very restless. Poor fella.

Object du Jour: Sesame Street Flashlight. I took J to the consignment store and let him pick a toy. He picked a cool flashlight that has little discs of Elmo, Cookie, and Ernie that fit over the light. He can then shine them on the wall. He played with it for close to an hour! And the best part is the light turns itself off and he can turn it back on by pushing a button all by himself!

Tuesday, March 27, 2007
First big boy spill on the driveway today. J ended up with a good scrape on his knee. I think the Band-aid caused more trauma than the bloody knee; it was a Wiggles Band-aid too!

J and I went to the local Children's Museum today. He had sooo much fun! He went up the steps to the slide holding onto the railing all by himself! And, he scooted on his butt to the slide on his own. They have a walk-on piano like the one from the movie Big. J thought it was hysterical! I have some really funny pictures of him walking on it!

ETA: New pics of both adventures in the picture gallery!

Object du Jour: Train cars from his Thomas the Tank set.

Sunday, March 25, 2007
Mommy: Jackson, time to go night-night.
Jackson: No no no no noooooo!
Daddy: Time to go night-night.
Jackson: Noooo no no no no noooo!

I swear, the boy gets more typical 2 year-old by the day!

Object du Jour: A Peacock feather cat toy.

Saturday, March 24, 2007
Two new words! Me and BeeBee (baby). A friend came over and had one of J's toys. I told him to sign "me" to get the toy back and he said it instead! I call J "my baby" all the time. He decided to copy me and now will call his stuffed animals BeeBee when I prompt him.Great exploration of food lately. He's been really into pretzels, corn puffs, Cheerios and cat food. :) He seems to following the natural progression from baby food to more solid things, but he's very selective about what those foods are. Still refuses cut up fruit, veggies or meat. He doesn't seem to like anything wet or cold. I'm going to try fruits and veggies in the food processor and see if I can come up with some other foods he will eat.

Object du Jour: Badger Badger and a flashlight.

Thursday, March 22, 2007
22 lbs, 2 oz! Nice gain from last GI visit!Today was another loooong day at Children's. We saw GI, BP, Nutrition, Speech and Allergy. They were pleased with his weight gain, but the BP was not happy to hear that J is refusing solids. We talked about using another strategy where J gets a sticker for each bite. The goal being 10 bites in 10 minutes. 5 bites of a preferred food and 5 bites of a non-preferred food. We'll see how that goes.

The Nutritionist was very happy with the weight gain and J's daily intake overall. She gave us some high calorie juice boxes to try called EO28. J knew it was different, but at least gave it a try. If he ends up liking it, we'll get it for him through our home health provider.The speech therapist was happy to see J babbling and using signs. He was pretty animated and chatty during our visit. She had some new food suggestions which we will try.

The Allergist sent us for another RAST test to see what J's levels for nuts and milk are. We have also scheduled a food challenge for soy. The dr. said we can go ahead and give him soy flour, but avoid foods that contain soy protein like soy milk, cheese or yogurt.

Object du Jour: Fringy Packer blanket. It was a great comfort to him during all of our visits and the nasty blood draw.

Saturday, March 17, 2007
Two more signs! Open and close. These were inspired by opening and closing the sunroof in the car. He usually points at it and says, "uh uh uh." So, yesterday while we were waiting for Daddy, I taught him "open and close". He's having a bit of trouble generalizing it to other objects (like the wipes container), but I'm sure he'll pick it up quickly.

So, now we have the signs for: open, close, up, help me, Wiggles, cat, fish, all done, more, eat, water, shoes and play.Words he can say are: Mommy, Daddy, ding, no, zoom, uh-oh, oh-no, and go. I'm still surprised he won't say "kitty or cat".

Object du Jour: the disc drive in the laptop.

Wednesday, March 14, 2007
The BP's feeding "technique" is getting less and less successful. J will do anything he can to avoid the spoon. He will lean forward and take the tiniest tip of the spoon in his mouth. After a few bites, he starts signing "all done". He's starting to understand, "One more bite and you can be all done." Whether that is good or bad remains to be seen. GI next Thursday.It's been almost a year since we applied, but our number has finally come up for respite care. I got the letter on Saturday and the rep is coming tomorrow to explain the program to us. Maybe Randy and I will be able to leave the house together now!

Object du Jour: Poker chips in a wipes container.

Friday, March 09, 2007
J typically goes to pool therapy on Fridays with Daddy. This way Daddy can participate in J's services and Mommy gets a little time to herself.When they came back today, I came down the stairs and J said, "Mum Mum!" *sigh* I love this kid! That's the first time he spontaneously said mom!

Object(s) du Jour: Pennies in a film canister (yeah, they still make those, pennies AND film canisters!) and the lid from a wipes container.

Monday, March 05, 2007
Ding! We have a new word. Ding! We spent the weekend at Gramma and Grampa's house and J loved the kitchen timer. Eating was pretty good while we were gone, but sleeping was rough.

Object(s) du Jour: Kitchen timer, touch lamps and Grampa's cassette tapes.

Thursday, March 01, 2007
21 lbs, 3 oz!!! Um, how the heck did that happen? We had an appointment last week with a Behavioral Psychologist and the Nutritionist. They were really happy with the weight gain! We talked about the best way to feed J from a spoon. Basically, we hold the spoon steady and make him come to and clear the spoon of his own volition. If he doesn't take a bite in 10 seconds, he gets a verbal prompt of "J, bite, ahhhh." I'll be darned, but it works! Finally, something practical and useful! This kid likes to be in control and I think this method is perfect for him.I really, really like the BP. He's calm and has lots of great suggestions for J. And, he actually asked me how I was handling everything. Um, huh, what? I didn't even know what to say to that, no one ever asks how I am doing.

Eating is still slow and we are tubing him quite a bit at night. Last night he got 16 oz without gagging or vomitting.

We took a trip out to a stable owned by the company that provides J's 0-3 services. They are going to start doing Hippotherapy in the near future and I really hope to have J participate! We got to the stable to meet J's OT for the tour and there we two cats in the office. J was so excited, but they were less than thrilled to see him! He got to look at the chickens, dogs and bunnies and then we went outside to see the horses.

J thought the smaller horses were funny and laughed when they crunched the carrot the OT offered. He was really interested in the big horse until he got a little too close. I really hope we can work this out. I think it would really do great things for him. After we saw the animals, J was so vocal and chatty on the ride home. Hopefully, that's a sign of things to come!

http://web.coehs.siu.edu/Grants/TRIS/I just discovered that J is the "poster boy" for the trisomy research project we are participating in! They change the pictures frequently, so I don't know how long his picture will be up, check it out quick!

Object(s) du Jour: Plastic CD holder, camera memory card holder and a magnetic refrigerator clip. The CD holder is clear and a great vehicle to view badger, badger. The memory card holder is hysterical when clipped in the refrigerator clip and hung on the fridge. Who knew?

Tuesday, February 20, 2007
J is playing, and for the most part, back to his old self. But, eating is still a chore. He refuses bottles and wakes up in the middle of the night crying and gagging while hooked up to the pump. We've tried decreasing the flow rate and that hasn't helped. I talked to the GI nurse and we're going to try to bolus him more during the day and lessen the amount he gets at night. This is only temporary, as we want him to eat orally and not have to bolus him.

He's picked up a new sign for the Wiggles. It's one we made up, based on a movement they do on the show. Fake coughs are his other new skill. If I cough, he coughs and then laughs. Growling is another new sound. It's really funny to hear! Yesterday in the car we had a trifecta of a fake cough, an achoo, and a growl. That's a 3 word sentence, right?

Object du Jour: Empty Altoids box. An exciting new feature here on J's website! The things that interest him, always interest me. So, I've decided to include them whenever I make and entry!

Saturday, February 17, 2007
Spoke too soon. Fever was back after his nap yesterday and he vomitted quite a bit. I called the GI nurse, no response. Had her paged, no response. I called his pediatrician who gave me some things to do and things to watch for. She's very nice and I'm happy that she calls me back herself.

Last night was rough. He woke up several times in tears. I gave him more Tylenol and changed his jammies. He was wet, not sure if it was vomit or a leaky tube.

He seems better today and is back to playing. Still not eating a whole lot, but he did request and finish, a graham cracker stick. Now I have some sort of a cold. Wheee! Does it ever end?

Friday, February 16, 2007
Uno cards and a candle holder. Why do I buy this kid toys again? He's been having a blast with a deck of Uno cards he found in the cabinet with his diapers. J has been carrying them around in a square candle holder. I've been telling him all the numbers on the cards. He likes to hold out different cards for me to label and trace the number with my finger.

The diarrhea is pretty much gone and we're still working on eating. Most of his formula had to be pumped last night, because he refused to eat. Today is looking better. J is more willing to drink on his own.

Wednesday, February 14, 2007
We're home! J still has diarrhea, but he's hooked up to his feeding pump until tomorrow morning to replace fluids. He's in much better spirits and is actually playing today. J is mad about the pump and doesn't like the backpack, but he doesn't have a choice. I'm hoping tomorrow he'll start eating by mouth again.The nurse in the hospital got him some Gatorade, which he loved, but it got taken away because it has too much sugar. Too bad because it was all we could get into him by mouth. I tried tricking him with Pedialyte with a shot of Gatorade, but he knew it was different.

Two new skills learning in the hospital: the sign for "play" and how to blow bubbles through a straw into Gatorade. He was so proud of himself and thought the bubbles were hysterical!I was so worried about how sick he was. I'm so relieved that he's getting back to his old self!

Monday, February 12, 2007
We completed J's 4 days of hospitalization to try to figure out why he's not gaining weight.He ended up contracting Rotavirus while in the hospital. He was readmitted Saturday, via the ER, and will hopefully be out tomorrow.

If you would like more details on either of these adventures, please e-mail me directly. wjo4244 at gmail dot com

Sunday, February 04, 2007
Gooooo!! J is really using this word frequently and appropriately, especially to watch Badger, Badger, Badger!We have a new sign too! J signs "up" to be picked up or when he needs help getting onto the couch. He now signs up, eat, more, all done, fish, cat, and water. Fish and cat are very similar for him, but he seems able to distinguish between the two. I've tried teaching him the real sign for cat, but he wants to do it his way. Even with toys in both hands, he'll still do his sign for cat with one finger!

The picture exchange for the juice box isn't going well. He'll take the picture, hand it back and then throw down the juice box. But in situations where the picture isn't available, like at the grocery store, he'll drink the juice. We don't want to turn him off of any food or drink, so we are going to use the picture system for him to request Badger, Badger, Badger, which has no calories to be lost. ;)

J tried some new foods this week. Gerber cookies, Ritz Dinosaurs and Turkey Veggie Dinner. The first two were hits, the latter, not so much. Eating has been going pretty well and we are continuing to tube him at night.

J has never been a big cuddler, but recently he's really been wanting to sit in my lap with his blankey. It's so nice to get cuddles from him! He loves to sit with me and watch Jack's Big Music Show. It's got puppets and lots of singing. Two things J really likes!

Tomorrow we will be going to the hospital to start they "why are we not gaining weight process". Hopefully we will find out something. I don't know if this will tell us anything, but I'm willing to try whatever is necessary to get some answers. I'll update as I can. Wish us luck!

Thursday, February 01, 2007
After all the stool study business, the lab lost our food diary. Ugh! So the nurse called and had me try to remember what J ate three weeks ago. I can't remember what I ate yesterday, let alone three weeks ago! I really don't know how they are going to be able to get an accurate analysis without an exact menu of what he ate. I knew I should've made a copy of it.

We are reluctantly admitting J to the hospital on Monday to allow the GI team to try to figure out why he's not gaining weight. My personal opinion is that because of the trisomy, weight gain is just not going to be easy. This is also the position of several of the trisomy parents I have contact with. We'll see how it goes, it's going to be a loooong 4 days. Tubing is still going well. He does wake up crying quite a bit because the tube gets tangled around his legs.

And because he's not sleeping too well, he's been a bit of a crab. I also think there may be some molars coming in. We have dental clinic next Wed and I'm hoping we'll find out what's going on in the tooth department. Still only 6 on top and three on the bottom.

Exciting development in the gross motor department! J can now squat down and pick something up off the floor and stand back up! No falling or holding onto something for balance. He still has difficulty getting up from the floor without holding onto something, but he's getting closer!J has discovered the joy of spinning in a circle! He laughs and laughs, but doesn't realize the getting dizzy and falling down part of the spinning. It usually doesn't end happily! :)

Friday, January 26, 2007
We've broken down and started tubing J at night again. We hadn't been doing it because he was getting his formula allotment in during the day and he would wake up full and wouldn't eat for a few hours.Last night was the second night tubing him overnight. The first night, the alarm went off every 30 minutes for some unknown reason, that was fun! Last night the pump was done at 2:00 am. We shut it off and J woke up at 4 am wanting to eat. He finished 7 oz and at 6 am, had another 7 oz. By 10 am, he had eaten 21 oz of his 35 for the day. This seems to be making him more hungry, that's a good thing! We'll keep going until he decides to change the game plan on us.

Who knew that shining a flashlight into a pair of Crocs to watch the light shine out of the holes was so funny!

Tuesday, January 23, 2007
Last Thursday we had our GI visit and Swallow Study. Still no weight gain, he's 20 lbs, 8 oz. We are still waiting on the results of the stool study, but the dr. feels that because J typically has solid stools, we aren't going to see a metabolic issue. Soooo, if that test comes back "normal", the dr. wants to hospitalize J for 4 days in February and monitor his intake/output and weigh him daily in a controlled setting. I'm not in favor of this, I don't think he'll do well in a strange place and I'm not really sure what this is going to tell us.

The Swallow Study was a disaster. J was scared of the giant machine next to his head (I would be too!) and wouldn't drink. The bottle and juice were thrown to the floor as he cried. We didn't even attempt the solids. We did finally get 3 sips out of a juice box. Those sips looked ok, even though his head was turned at a less than ideal angle.On a brighter note, the GI dr. told me that I'm "doing a great job and she knows I'm doing the best I can for J". I almost fell over, she is most definately not a warm and fuzzy type gal. This is the first time I've left there not feeling like a complete failure.

Between home and therapy, we are attempting a picture exchange system with J. Basically, he will have a trade a picture of what he wants for the real thing. We are starting with a picture of a juice box (his favorite thing, at the moment). I will put the picture on the fridge when a juice box is available to him. He needs to give it to me to indicate he wants it. Eventually, we will expand to more pictures. This will give J another way to let us know what he wants.

Daddy took J on his first sled ride. We bundled him up and plopped him on the sled and Daddy pulled him around the yard. J cried the whole time. He's so fearful of anything new or different. We still haven't gotten him to ride in the bike trailer. Hopefully, this summer!

Tuesday, January 16, 2007
Here we go...I just got the consent forms in the mail today to allow the 0-3 agency to make a referral for J to the public schools. I got teary signing it. I'm not ready for my baby to be in school every day. He's still so small. I know that this will be for the best and help him out so much, but I'm just not ready.

Friday, January 12, 2007
Tongue clicking, don't know where this came from, but when we enter large rooms or places with high ceilings, J starts clicking his tongue. He gets a big smile on his face when the sound comes back to him. Maybe he's part bat. lolWe finished the stool study, so now I just need to take the samples over to the lab at the hospital. Then we wait.

Next week we have a GI follow-up and a Swallow Study. That should be fun!

Monday, January 08, 2007
J can have wheat! He passed the wheat challenge on Thursday at the allergist. That test really, really sucked. We got there at 9 and didn't leave until 1:45. The doctor didn't even come into the room until almost 10. You can just imagine the fun of keeping a 2.5 year old locked in an exam room for that amount of time. He did really well, all things considered. Basically, the doctor gave Jackson Cream of Wheat mixed in applesauce. (We had to wait forever for the order to come up from the hospital cafeteria). First he just wiped it on J's lips, then came back 20 minutes later to check for symptoms. We then fed him 1/2 teaspoon, 1 teaspoon and 2 teaspoons with the applesauce and then waited 30 minutes between each dose to look for a reaction. After the last round we had to wait an hour before going home. I have to make sure that J gets something with wheat in it daily for the next two weeks and watch for symptoms, then we're good to go! He's been really enjoying graham cracker sticks and tried a Dora the Explorer cookie at therapy today. This is going to open up so many more menu options for him! We still need to avoid milk, peanuts and soy protein, but those are much easier than wheat!

We started the stool study today. Giving him the charcoal was awful. I put it through his tube and he passed it this morning, so I will start a food diary and collecting all the samples. The big problem is keeping the stool in the plastic wrap in the diaper and still allowing the pee to soak into the diaper. We've already had to change his pants once today.

Saturday, December 30, 2006
J's new favorite website: http://www.badgerbadgerbadger.com/ It's annoying and hypnotic at the same time. He finds it hysterical and tries to copy the movements!

Friday, December 29, 2006
J's stool sample test came back normal. The next step is to do a "72 Hour Quantitative Stool Study". This test will see if J is metabolizing the fat from his food. I will need to give him charcoal capsules and then collect every stool for 72 hours after he passes the charcoal. I will also have to keep a food diary for those 72 hours. Hopefully this will shed some light on the weight gain issue. The nurse wasn't concerned about J's refusal of solids as long as he's making it up in formula. I feel better about that part.

J has always had funny little quirks, so it's no surprise he has a new one. He now needs to carry two or more of the same thing. Whether it be four Wiggles, three coins from his grocery set or two Matchbox cars, everything needs to match. If I ask him to match two things, he won't do it, but if he finds one waffle from the kitchen set, he searches until he finds the other one. Then all is right with his world.

Monday, December 25, 2006
Merry Christmas! Jackson got so much stuff! He had a great time visiting with his grandparents and aunts, uncles and cousins. He just handled all the chaos in his usual laid-back style. J really liked laying under Grandma and Grandpa's Christmas tree and looking at the lights. We have a very cute picture of him "rolling it" under the tree!

He wasn't too crazy about opening presents. I'd pull a piece of paper off and he'd cover it back up. The big hits seem to be his grocery store set, shape puzzle and Wiggles car. But right now he's having more fun playing with the styrofoam inserts that came with mommy's new toaster oven!

J is again deciding that solids aren't for him right now. He's taking in at least 35 oz of formula, but really resisting solids. Today we went out to brunch with his grandparents and he drank a large cup of apple juice through a straw and had only a few bites of applesauce before pushing the spoon away. He still enjoys his corn puffs and wagon wheels though.

He imitated the words "daddy" and "Donna" while looking at a picture of his daddy and his aunt. More words to come I hope! He's now using the same sign for "fish" and "kitty". I think it's because the fish and the cat are right next to each other in the book about pets he has. So we'll keep working on fixing that!

There's another tooth starting to poke through. It's just to the left of where his bottom two teeth should be. So now that makes 6 on the top and three on the bottom. We go back to dental clinic in February, so we'll see what they have to say.January is going to busy, we have allergy clinic with the wheat challenge, GI clinic and a swallow study. I also need to take him in for a weight check this week and hopefully we will get the results of the stool analysis.

Monday, December 11, 2006
On a trip to the zoo a few weeks ago, I taught J how to sign "fish" while we were looking at the aquariums. On Saturday, he brought me a book, opened it to the fish page and signed "fish". I had no clue that he remembered that! Still waters run deep!

Sunday, December 03, 2006
Got the results of the Metabolic Cart test. It found that J only needs 700 calories daily to gain weight. He's taking in over 900 in formula alone per day and that doesn't include solids, juice and snacks. The next step is for me to collect stool samples for 3 days, pack them on ice and run them over to the lab at Children's within an hour. This way they can see if J's body is metabolizing food appropriately. I'm not sure what the next step will be after that. I will be taking him in for a weight check in the next week or so.

We went grocery shopping today and a lady was giving out samples of fruit salad. She offered some to J, but it had yogurt and whipped cream in it, so we refused. She offered him just a banana. We took it and he ate about 1/2" of the banana by scraping bits off with his front teeth! He's never done that before! Normally, if we offer him a banana he'll squeeze it and throw it. Maybe we need to have all his meals at the grocery store!I bought J some corn puffs, which he really loves! He sat on the kitchen floor and would bite and swallow them. Very little was spit out. With other solid food, he often gets a piece off and it comes right back out. I think he ate about 15 puffs! Great signing "me" or "more" too!So overall, a pretty good weekend for trying new things!

Tuesday, November 21, 2006
Laundry basket rides!! Wheeee! J's new favorite thing. He climbs in the basket, butt first, and waits patiently until I pushed him around. He giggles hysterically!

J has also perfected the art of walking backward. Where this came from, I have no clue, but it's pretty funny to watch. He walks into the spare room, turns on the touch lamp and walks out of the room backward with a big grin on his face!

Monday, November 20, 2006
Yea! We now have a shopping cart! I found one on ebay and we picked it up on Saturday. J was a little leary of it at first and now he's pushing it all over the living room! I'm going to gradually weight it, to help him build some upper body strength.

I'm hearing two new words, "this" and "yes". J will point at a toy and say, "this".

J tried some corn puffs at therapy today. He actually picked it up and took a bite! They dissolve pretty quickly, so no gagging or choking!We were walking down the hallway at therapy today and a woman said, "that baby is too little to be walking, you should really have him in a stroller." *sigh*

We finally made it to Trader Joe's today. The middle of the day and the place is still a madhouse. Channel 12 was there today filming the parking lot chaos. Check out the news tonight and you may see me almost hitting the camera man as I backed out. I got the reporter's attention and pointed to the camera man to make sure I wasn't going to hit him and she thought I was waving at her.

Thursday, November 16, 2006
20 lbs, 9 oz. Down two ounces from the last weight check. J had his GI appointment today. They are happy that he's trying more foods and happy with his intake, but puzzled that he's not gaining weight. They sent us to the lab to have a blood draw done and then he had a Metabolic Cart test done. A bubble that looked like a space helmet was put on J's head which was connected to a machine that measured the oxygen and carbon dioxide in his breathing, which in turn shows how many calories he's burning. He absolutely hated both tests. He cried during the metabolic test, but the evaluator said she got a good reading. She said that he did better than most two year-olds do and gave him a Beanie Baby to take home for being so cooperative. We'll get the results of both tests in a few weeks.The nutritionist mentioned that J may be burning more calories eating than he's taking in, so we now have to give him half of a feed orally and half through the tube. We'll see if it works. It sounds like a strange plan to me.For now, we'll keep a 3 day food journal and go back in one month for a weight check. Next GI appointment will be in two months. Will will also do a repeat swallow study at that time.

Saturday, November 11, 2006
Yes, he's REALLY two. Why do people think I'm not telling the truth when I tell them J's age? A woman at the play area of the mall yesterday asked J's age. I told her, she paused and said, "Well, he must be a tiny two then." Granted her 19 month-old was two inches taller and had at least 5 pounds on J, but all kids grow at different rates. I love it when people think they are cluing me into something by telling me how small my child is.

I also get really sick of hearing, "Awww, he looks so tired." I'm not sure where that comes from. Is it the shape of his eyes, calm nature or what? On a funny note, one of his therapists says that Jackson looks like Bob Newhart. I can totally see what she's talking about! lol

That therapist was having J push a weighted toy shopping cart on Wed. (Maybe I should just grab it run from the building?? I guess they wouldn't let me back after that, huh?) He pushed it up and down the hall a few times with a lot of help. He was pretty resistant to holding onto the handle. They put the cart away and starting walking back to the therapy room and J saw a towel sitting on a chair in the hallway. He walked over, picked up the towel and wiped the sweat from his brow. lol Talk about funny! What a ham sandwich this kid is!

Thursday, November 09, 2006
Jackson started pool therapy today! He was in heaven! There's a large glass window in front of the pool. Jackson saw his therapist and another child in the water. He paced along the window saying, "go, go, go." I think that was the longest 5 minute wait of his life! :)

He really had fun and fell to pieces when it was time to come out! We're going to take him weekly and hopefully this will improve his balance, muscle strength and pelvic mobility. Plus, he'll have a blast doing it!

There's a new store opening here called, "Once Upon a Child." It's a resale shop. I stopped in today to see if my never-ending quest for a Little Tikes shopping cart would finally end! I walked in, saw the cart and made a beeline for it! Looked almost new, I could almost hear the angels singing! BUT, the clerk said I couldn't buy it because the store isn't "officially" open yet. They are only buying, not selling. I was so bummed! So, when they officially open in two weeks, I will be first in line to get that darn cart! J's PT recommended the cart to help with his upper body strength (we'd fill it full of canned goods) and to get him to hold onto something for a longer period of time. Wish us luck!

Saturday, November 04, 2006
J's Elvis costume was a big hit at our mom's group Halloween Party on Friday! He typically doesn't pay too much attention to peers (except his cousin, who he pesters like crazy!), but he watched the kids run around a pole. J thought it looked like fun and tried to join in and totally got run over. He fell and cried, but at least he was attempting to do what the other kids were doing!

He loves the music channels on the digital cable. He usually bops his bum, but today he took it up a notch and is now dancing in a circle. He thinks it's really funny and makes sure I'm watching him while he dances!

I like to sit and watch J play with his toys when he thinks I'm not looking. He's now started to sign to himself while playing. He will be playing with a toy, stop, and then sign "more" to keep playing. He's also starting to combine two signs independently, like "more eat" or "me eat". I'm really happy that he's starting to communicate more with us on his own. I'm going to start working on some signs for common objects with him so he can label things and "talk" about them.Eating is still going well! Jackson is still getting his allotment in before bedtime, so we haven't used the tube except to give him medications.

Who knew Snapple caps were so much fun! I've been saving them to use with the magnet wands. He just loves playing with them and putting them in/out of a wipes box. Why do I buy this boy toys? Snapple caps, empty Tupperware and a box full of dried beans are his favorites lately.

Monday, October 30, 2006
We had our HUGE trick or treat in our neighborhood Saturday night! We had 800 children registered. J's cousin came over in her "yedow ballanina" costume! She had a really good time and gots lots of candy. We didn't take J to get candy, he can't eat any of it anyway. He sat on the steps in his Elvis costume and had so much fun watching all the kids. I'll post pics soon!

Tuesday, October 24, 2006
Jackson and I made a visit to a class of OT/ST students at a local university. They wanted to learn about J's diagnosis and what it's like to raise a special needs child. Everyone was really nice and asked a lot of great questions!

Monday, October 23, 2006
What a long weekend! We went up to Mall of America to meet some other trisomy families. They were all so nice and so willing to share their stories about their kiddos. We had dinner with a family who lost their daughter to trisomy 18, she was only a few months old. They were so sweet and so open, and their three kids were adorable!

Another mother came from another state with her 6 month old because the doctors won't treat her because "she's terminal". The mom found a doctor in MN willing to help. I will keep her in my thoughts and prayers.

On Sunday was when the fun really started! We woke up to J having difficulty breathing with a croup seal-bark cough. We called his ped's office. The doctor on call didn't feel he needed to go to the ER, so we alternated cold air and warm air. He seemed better, so we started home. We got to Tomah and the stridor and neck retraction were getting worse. Jackson ended up vomiting in the car, so we pulled over and went to a gas station. Randy asked where the closest hospital was and then walked J around in the cold air. J was breathing easier so we piled him in the car and drove home.

The stridor, croup and neck retraction were awful when we got home, so we went straight to Children's ER. The nurse when we first got there said he sounded fine and didn't need a breathing treatment. She listened to him and heard the problem. J got two breathing treatments and steroids. Because he had two breathing treatments without change, they admitted him and we stayed the night.By morning his breathing was much better, but the coughing and sneezing are still pretty rough. I give him two puffs of Albuterol three times a day and we go to see his ped for a follow-up Wednesday. The on-call doctor feels that because this is Jackson's third bout of this, he may be on the road to asthma. It's just so darn scary to hear that!

Sunday, October 15, 2006
Our town now has a Whole Foods store! I cannot say enough how much I love, love, love it! We stopped in Saturday. I asked a clerk if they had a gluten/dairy-free section and she introduced me to the Concierge. The Concierge walked me around the store personally and showed me all the foods J can eat! She was even concerned about keeping J away from their PB machine.I got him some cookies and snack bars made by a company called Enjoy Life. All of their foods are free of dairy, gluten, peanuts, soy, eggs, tree nuts and shellfish. The cookies are pretty good, but the snack bars are a little iffy. I also got him some Tropicana Fruit squeezies, millet to mix into his food, gluten-free noodles and Sunbutter, which is similar to peanut butter but made with Sunflower seeds. It's really good! I gave Daddy a taste and he thought it was PB. Now we have lots of fun things to work with during speech therapy and the store has lots more things for us to try! I'm really excited about this!!

In the next few months another new store called Trader Joe's will be opening! Hopefully, they will have even more things for J to try!

Tuesday, October 10, 2006
Communication is really improving! J can say, "go", "no" and "zoom" and can sign "me", "more", "all done", "eat" and "water". I'm working on teaching him the signs for shoes and socks. He has such an interest in putting his shoes and socks on and off, that they are perfect signs to work on.

Friday, September 29, 2006
Jackson's fine motor skills were rechecked on Wednesday. He came out at 18-19 months. Not bad! It's a nice jump from the last test. He completed a shapeboard by sight, turned pages in a book, made marks on paper with a crayon, and put pegs into a pegboard. His PT is going to be making shoe inserts to give his feet better support. His toes overlap on his left foot and his feet are a little flat. His ankles also tip in a little when he stands. So, hopefully, the inserts will help him out!

Here's fun story from two weeks ago that I forgot to post... I took J to school on Monday and when I took him out of the car he was wet. I assumed that his bottle had leaked. They changed his clothes at school and he was wet again a few hours later. I bathed him and changed him at home and when he woke up from his nap, he was wet again. I never even thought to check his MIC-key button. Turns out the seal on the button was leaking and it needed to be changed. I had never changed it on my own before. I laid him on the floor and deflated the balloon and took it out. And then his stomach started to empty through the hole. Ugh! Fountain 'O Baby! I got the new button in and inflated without any problems. Next time I will be better prepared!

Sunday, September 24, 2006
J's Halloween Costume arrived yesterday! Woo Hoo! Here's some hints: he'll have a pb and 'nana sandwich (hold the pb, well, and the bread for that matter), he's not gonna be a tiger, 'cuz tigers play too rough, and he's just going to "Take Care of Business" this Halloween. Thank you, thankyouverymuch! Stay tuned for pics!Randy and I love Halloween so much that it's also our wedding anniversary! 8 years!

Wednesday, September 20, 2006
The results of the CBC came back and J is slightly low in the iron department, so we're started giving him supplements once a day.

He's getting two more teeth, on either side of his top two. Still only the molars on the bottom. So, that will be 8 total.

Sleeping has been awful again. No nap yesterday or today and he was up on and off for 4 hours last night. I don't know if it's the teeth or the temperature change or what.He's been really into Play with Me Sesame lately. He loves Ernie, Cookie and Elmo. I'm a sucker for marketing, so I bought him that new TMX Elmo yesterday. He's a little afraid of it, but keeps trying to feed Elmo his toys. I saw on ebay that people are listing these Elmo's for thousands of dollars. C'mon people, it's a kids' toy. I don't know which is worse the buyers or the sellers.

Wednesday, September 13, 2006
This kid just continues to amaze me! In therapy today, he said "go" several times to continue an activity, he signed "all done" and the OT and I swear we heard him say "right?" The other day, J put a circle, square, triangle and rectangle into a puzzle all by himself! He's stacking blocks, putting pegs into a pegboard, and overall really starting to use toys more appropriately.J had a weight check yesterday, he's back up to 22 pounds. *whew* I really didn't want to see an Endrocrinologist. He had a blood draw and he cried so hard the nurse gave him 3 stickers. He was pretty pathetic, but very happy with the stickers!

Sunday, September 03, 2006
My boy is definately two. He fights naps, getting his diaper changed, basically any type of direction that isn't his idea. He tantrums when things don't go exactly how he wants them to and when I don't do exactly what he wants me to.The other day he wanted me to have the pencil box lid on my head. Why? I have no clue, but he would have a kicking and crying tantrum if I took it off. On one hand it's hard to have him upset so much, but on the other hand I'm thrilled that he's displaying typical toddler behaviors.Where did my sweet, passive, cuddly little baby go? Oh, wait, that's right, he's two! :)

Wednesday, August 30, 2006
Oh where oh where have the naps gone!? This week has been really rough in the nap department. I put him down and he's up there for 45 minutes singing and talking to himself. I bring him back downstairs and by dinnertime he's awful. He tantrums at every little thing, and bursts into tears when things don't do what he expects. Tonight he wanted me to stop cooking dinner and put my hand on the air vent. J didn't want me to do anything to it, he just wanted me to sit and touch it.

Today I went up to get him (after no nap) and there he was in only a t-shirt. He'd taken off his diaper and thrown it into the middle of the room. I guess now we need to nap with our pants on!

He also discovered his shadow today. The sun was shining on the side of the dining room table and he figured out how to sit sideways and watch the shadow of his hands clapping. He thought it was very funny!

Thursday, August 24, 2006
We had our GI clinic visit on Monday. Jackson has lost close to two pounds, so now he's back at 20 lbs, 1 oz. We now have to add a supplement called Polycose to his formula to add extra calories. His appetite seems to have increased lately, but he's also more active with the walking and furniture climbing. He's been more interested in solids and crunchy finger foods. He needs to go back in one month for a weight check and if he still hasn't gained weight, we may have to visit an Endocrinologist. I've started keeping a food diary, so there is no question about what he's eating. I often leave the GI clinic feeling like a failure and that I'm not doing everything I can to help J. On a good note, they are OK with him using a straw, but still want a repeat swallow study done sometime this fall or winter.I gave J oats today for the first time since the allergy diagnosis. I gave it to him with his shirt off so I could spot any hives immediately. He did great, no vomiting, no hives! We can now cross oats off the allergy list! Yay!

Sunday, August 20, 2006
Uh-oh! Guess who's climbing funiture now? He climbs up and down from the couch all by himself. I was typing on the computer and I turned around and there he was sitting on the couch watching Sesame Street! He's also started trying to climb out of his crib. I'm definately not ready for that one!

We took J to Zoo A la Carte yesterday. He had fun, but he has a horrible runny nose. Each sneeze required major clean up. When we got home at 1, we put him down for a nap and he slept until 4:30. That's always a big sign he's not feeling well. It always seems like he gets something right before a GI visit (which is Monday). This isn't going to help our case for straw drinking! We didn't stay long at the Zoo yesterday, so since he's feeling better today, we're going to head back, we have more tickets to use up.

Jackson is also starting to show more affection toward the cat and his stuffed animals. He always tries to lay his head on the cat, that doesn't go over too well! He's got a stuffed dog that he hugs and kisses, it's very sweet.

Tuesday, August 15, 2006
J is really improving in his class participation! He stole a little girl's chair during music, got in it and sat down all by himself. Now, I don't condone chair stealing, but when he's shows initiative, we go with it. :)

They sing a version of Pat-a-cake and all the kids get a squishy baby as a prop. J watched the other kids making their babies pat the cake and he imitated them. I've found out that the other three kiddos are moving on from that group in September and he'll have three new friends to play with. I'm a little sad about it now that he's really participating.

Eating has been so-so. He drank a whole cup of juice through a straw at a friend's house last night. We tried some green beans today and ate about half the cup and starting pushing the spoon away.

We went to the library today to get mommy some books. The whole way through the library J was shouting DUKKA DUKKA DUKKA at full volume! We got some dirty looks from some people there, but I was happy he was chatting!

Sunday, August 13, 2006
The Wiggles concert was so much fun! We drove to downtown Chicago, did some shopping and had lunch at the Hard Rock Cafe. J had fun looking at all the stuff and the restaurant and did a great job drinking apple juice out of the Hard Rock cup the waiter gave him. Then we went to the concert in Rosemont.

Jackson just sat and stared. I could tell he recognized the Wiggles and the other characters. I've never seen him sit so still and be so attentive to something before! The Wiggles sang all the songs Jackson knows and he clapped and "rolled it". Murray came out into the audience to collect roses for Dorothy the Dinosaur and went right past our seats. We got Jackson a T-shirt, a blinky thing with the Big Red Car on it and a program.

He babbled and giggled most of the way home after the show. J really had a good time! I think Daddy's favorite part was when Murray played a few bars of Stairway to Heaven. :) We all had a blast!

There was a little boy there who was in a wheelchair and seemed pretty involved. The Wiggles made a big fuss about him and brought him up on stage to have their picture taken with him. It was really touching.

I'll post some pictures in the photo section as soon as we get them downloaded.

Tuesday, August 08, 2006
Jackson is walking!! He had been taking a few steps and then going down to his knees. But, today he was standing at the couch and turned around and walked through the TV room, down the hall and into the spare bedroom (he loves the touch lamp in there!) He went about 20 feet total! He's got a bit of a Frankenstein move going, but I'm sure he'll get better with practice! We then went over to a friend's house for dinner and he walked all over their house! Whenever he walked on his knees, my friend's one-year-old would follow along on her knees with a big grin on her face. It was very funny!

J's eating of solids is increasing again. Which is good. So, sometime this week I
will re-introduce oats and see how it goes!

Sunday, August 06, 2006
We all went to State Fair yesterday! Jackson had a lot of fun, but I think it was a little overwhelming at first! Unfortunately, there were no foods there he could try, so he sat in his stroller with his juice box and Tings. His "Uncle" Joel won him a Super Grover, which J is a little afraid of.

Walking is coming along! He stood for several minutes today without holding onto to anything for support. He's also walking short distances on his own without our help. I think he'll be running in no time!

Only one more week until the Wiggles concert!

Thursday, August 03, 2006
This has been a busy week! J had his two year check-up on Tuesday and his Dental Clinic appointment today, plus all of his regular therapy appointments.

His two year check-up was pretty uneventful. He wouldn't lay down to get measured or get on the scale, so no new stats to report. He got a Hep A shot and we were done. I did talk to her about the tests that the Allergy Fellow suggested. She felt he was being overzealous, but did give me a script for a CBC at Children's lab. We'll head over sometime next week to get that done.

At Dental Clinic, the dentist looked in J's mouth and only found 4 teeth, all on top. This I already knew. They decided not to do x-rays at this point because there's nothing they can do anyway if they are not there. The dentist said that there may very well be baby teeth missing based on the eruption pattern. That does not mean that there are permanent teeth missing because some are still being formed. He felt that J is about 18 months delayed in tooth eruption and because of his other delays he could still get teeth until he's 4. We will go back in 6 months.

J absolutely hated the dentist looking into his mouth. He screamed and shook, but overall did really well. He got a toothbrush and a Thomas Train sticker and that made him happy.Today he came over and took my hand and pointed it at his foot. He was trying to show me that his shoe had fallen off. He then pushed my hand to his other shoe to take it off. I asked him if he wanted his socks off too and he spotaneously signed "more". I think he's really starting to understand this!!

J has also started imitating the word "zoom". We use it a lot when we play with his vehicles and he's using it independently now!

Sunday, July 30, 2006
Happy 2nd Birthday to the sweetest, cutest, happiest, and most wonderful little boy I know!!

We spent the weekend at Grandma and Grandpa's and J had so much fun being the center of attention! I made him a gluten/dairy free cake (tasted a little strange, but not bad!) and put his little Wiggles figures on it. He didn't actually eat any of the cake. Most of the time was spent freeing Murray, Jeff, Greg and Anthony from their frosting quicksand! :)

He got pj's, a Wiggles bedding set, a Wiggles backpack and tickets to see the Wiggles in Chicago in two weeks. (Anyone seeing a theme here??) He got other fun things from his aunts and uncles and Grandparents.We also went to a family reunion. J had fun meeting everyone and letting his cousin blow bubbles for him. When the bubbles stopped J would sign "more, more, more"! That was very cool to see! Daddy had some allergy issues and sneezed most of the way home. Every time Daddy sneezed a tiny "achooo" would come from the back seat. We laughed every time he did it!

His eating wasn't great this weekend, but it was soooo hot! He ate a few spoonfuls of applesauce and some Tings, but threw up at Grandma and Grandpa's. We'll keep working on it!

Tuesday, July 25, 2006
J keeps me entertained on a daily basis! I laid down on the floor and pretended to be asleep. I would snore and then whistle. He came over and laid next to me and crinkled up his little nose and imitated the whistle sound. He kept shooting me dirty looks for laughing, but it was so darn cute!

Saturday, July 22, 2006
Oy, the drama! We went to a county fair today and they were giving away temporary tattoos at one of the exhibition booths. The lady asked if J would like one, we said sure, just put it on his leg because he doesn't like his hands touched. He didn't like it at all! For the rest of the time at the fair, he would pull up his shorts look at the purple fish on his leg and burst into tears.

He did love the animals and the roadies warming up the instruments for Twisted Sister later tonight. So, the tattoo didn't make the trip a total loss. :)

Friday, July 21, 2006
Solids have been quite a challenge lately. J has been refusing purees and pushing the spoon away. Tonight I offered pureed carrots, he ate 6-7 spoonfuls and pushed the spoon away. He then proceeded to throw up all over the floor. Ugh!

Jackson loves the games on the Wiggles website. There's a game where you need to push the 1, 2, and 3 and then "wake up Jeff". When Jeff wakes up, he makes a funny sound. Jackson put his finger in his mouth and totally imitated the sound all by himself! He kept putting my hand back on the keyboard so he could do it again! Way cute!

His interaction with toys has really improved lately. He pushes cars on the floor, his trains on the track and puts the circle, square and triangle into the puzzle. Smart guy!

Wednesday, July 19, 2006
J is finally waving! When I wave to him and say, "Hi, hi, hi," he waves back! He keeps his hand and arm totally straight and moves it up and down. It's very cute!

We ran into some friends at the mall last night and J kept entertaining them with his "roll it" from the Pat-a-cake song. He's such a ham!

J is starting to imitate more sounds now. The favorites are "dunna dunna", "digga digga" and the ever popular "dukka dukka." He also imitates a "z" sound.We are working on more signs (now that mommy took her refresher sign course last week!). He tries to imitate eat and water. We'll keep practicing and see how it goes!

Tuesday, July 18, 2006
Finally!! We have a dental appointment August 3rd at 9:30! I called the dental clinic at Children's for the 4th time in 8 weeks and expected to get the same old, "Call back in two weeks." But, this time, I got a different person. She started to tell me to call back, and I told her about J's special needs and that he still doesn't have any teeth on the bottom. Amazingly, we got an appointment on August 3rd. So much for the 6 month waiting list the other lady kept telling me about. I'm sure J won't be thrilled with the appointment, but I am!

Friday, July 14, 2006
Eeek! J threw up quite a bit at bedtime tonight. I had to unhook him, change his bed and give him a bath. He's been really resistive to going to bed lately. I think part of it is I've been taking a class all week and he's been home with daddy. J has been super clingy and whiney. I think once we are back to our normal routine, he'll be fine.

He's decided that it's really funny to have me tap a block on a picture hanging on the wall. He will come over, put the block in my hand and push my hand toward the picture. Why that's funny, I have no idea, but some days I just need to go with what makes him happy.

Still not walking on his feet, but he's quite a pro at walking on his knees. He commando crawled for so long before four point crawling, that I think the knee walking is the precursor to walking on his feet. Time will tell!

Thursday, July 06, 2006
Saw the Allergy Clinic today. We usually meet with a med student or fellow before the doctor comes in. The fellow we saw was a ped by trade, working toward a specialty. He asked about a whole slew of tests that J hasn't had done. Now I'm wondering if I should push his ped for the tests or if I don't need to worry about it. Ugh!

The allergist is having us reintroduce oats. He wants us to buy baby oatmeal and mix it in with his foods. If there's a reaction, we call the clinic and get instructions from there. They also want to add wheat at his next appointment in January, but because of his levels they want to do it in clinic, in case the reaction is severe.

Wednesday, July 05, 2006
Had our visit with the eye doctor today. He feels J's eye is wandering less (as do I) and so we don't need to go back for a year. I'm glad he doesn't need glasses. What a battle that would be!

I called the dental clinic again. Heard the same story, "Call back in two weeks and then we should have new patient appointments." So frustrating! I asked if they had a waiting list, she said no. I asked if she could give me the name of another clinic, she said no. Even saying J has special needs didn't help, so I guess I will call back in two weeks.We took Jackson to a local festival and a 4th of July parade yesterday. He loved the parade, but didn't like the sirens or the Civil War guns. The lady next to us kept offering him candy, I politely said no, but she kept insisting so I finally told her about his allergies.

There was a huge water fountain at the festival and J couldn't wait to get in. He was just soaked! We had to go buy him a dry t-shirt!

Went to the Vegan store today to try to find something else J can eat. I picked up some organic cotton candy and some Super Veggie Tings (kinda like Cheetos only made with broccoli and spinach, honestly they aren't that bad!). He likes the Tings, but isn't so sure about the cotton candy. He was all sticky with purple fingers, looking at me like I was crazy for eating that stuff!

Monday, July 03, 2006
Jackson had class today and made his very first art project! It was painted fireworks with glitter. His grand masterpiece now hangs proudly on the fridge, where all great artwork should be!

I called the dental clinic again and was told by scheduling they still don't have any new patient appointments. So I asked the scheduler where do other special needs kids go for dental check-ups. She said, "Oh he has special needs? Call the clinic directly on Wednesday and he should get in." We'll see, but at least there's hope!

Thursday, June 29, 2006
We have two more teeth! Four total! I was tickling him and he opened his mouth wide to giggle and there they are! All four are on the top, none on the bottom. I wonder where those little buggers are? I tried to make an appointment with the Children's Hospital Dentists and they aren't taking new appointments. The scheduler told me to try again in a few weeks, so hopefully then we'll get in.

We went to the GI Picnic at the zoo today. It was really nice and there were tons of kiddos with G-tubes there. It was kind of reassuring to look around and see kids being bolused and no one was staring or making commments. All the kids at the picnic got a prize for coming. We picked a hippity hop for J. He won't be able to use it for awhile, but I'm sure he'll have a lot of fun with it!There was a really cute little ceremony for the G-tube graduates and they got a certificate and a picture taken with the clinic staff.

J rode the carosel with Daddy. He was so funny watching the lights above his head. J would pass me and it would take him a second to realize it was me. He'd starting smiling about 5 feet past me.

No nap today, so hopefully tonight won't be like last night! *fingers crossed*

Sunday, June 25, 2006
Last night was UGLY! He started off hooked to the pump and kept waking up crying and digging at his site. About midnight I unhooked him and he stayed awake until 4. Daddy and I took turns cudding with him and trying to calm him down. It's 9 am now and he's still sleeping. That never happens. I think I will call the GI Clinic tomorrow and see what they think. I'm pretty sure another Granuloma is starting, so I've been religiously putting the Triamcinalone cream on it.

Saturday, June 17, 2006
Heaven is...A boy and his new water table! He's been out there with daddy for more than an hour and J is totally soaked! That boy is a fish!I've been having to bolus him quite a bit this weekend. He's just not interested in eating. J threw up a whole bolus feed this afternoon. Not sure what's going on, maybe the heat or teeth. If it gets worse, I'll call the GI Clinic on Monday.

Saturday, June 10, 2006
J got his Peg Tube replaced with a MIC-key button on Tuesday. The doctor just yanked the old one out with no sedation or meds! OUCH! J cried and bled quite a bit, but he was such a trooper as always! We then went down to X-ray to make sure the button was placed properly. Everything looked perfect! The surgery clinic weighed him and came up with 21 3/4 lbs. Seemed like a pretty big jump from GI Clinic, but we'll take it!He's been doing really well getting his formula allotment in before bedtime, so he hasn't had to be hooked up to the pump since he got his button! Yay!

Finger feeding is coming along too! J really likes his baked peapods. He'll take one out of the cup and gnaw on it. Today he got a big piece off, moved it around in his mouth and swallowed it with no gagging at all! He's also eaten two whole cups of applesauce this past week, with no icky faces or gagging!

Thursday, June 01, 2006
AAACKKK! My friend and I were out shopping, J was in the back seat with her two kids. Things were going well and then J started whining and rubbing his eyes. We get to our house and I get out and look at him. His left eye is bright red and almost swollen shut. There were blotchy patches all around his eyes. Then, the right eye started to swell. I gave him Benadryl and called the doctor. She told me to wash him up, change his clothes and watch to see if hives appear around his mouth or his tongue swells. He took a nap (with me watching him like a hawk!) and when he woke up, the swelling had gone down quite a bit. I can still see where the swelling was, but he looks soooo much better. These allergies are a constant challenge and scare the hell out of me!! It's is so frustrating when this happens and we have no clue what he touched to cause it!

Wednesday, May 31, 2006
Met with a woman from UCP about respite care. The waiting list is a year! But, after that we will get funds to pay a respite care worker to watch J for us. We will get 10 hours a month. I'm really excited about that, we don't get out much anymore and we need to!

Sunday, May 21, 2006
We drove up to Wausau to speak at a fundraiser for Noah's Neverending Rainbow about J's trisomy. It was wonderful! Noah died of trisomy 2p and his Auntie started an organizationt to raise funds to help other trisomy kds.Everyone was so nice and really interested in J. I was a little nervous about speaking to so many people, but once I got up there the words started to flow and I think I did OK.

J really connected with the other trisomy child there. They giggled at each other and rolled a ball back and forth. It was really cute!

Thursday, May 18, 2006
20 POUNDS, 1 OUNCE!!! WOO HOO!!!We've finally broken the twenty pound mark! The GI clinic said this was the first time he met his daily weight gain goal! He had a huge jump on the growth chart, he's still not technically on the chart, but we're a lot closer!

Monday, May 15, 2006
Wow, it's been awhile since I updated! Jackson has been doing so well lately! We finally have a tooth!! It's coming in on the top, hopefully more will follow soon! He gave me a big grin this morning and there it was!

My little man drank a whole juice box with a straw all by himself today! I'm so proud of him!

J took his first airplane flight last weekend! We went to Washington, DC and he had a blast! He did so well on the plane and loved seeing all the sites! The Metra was a big hit too, he just stared at the door to watch all the people getting on and off. He did have a huge case of hives while in DC and we don't know what caused it. Benadryl helped, but I just wish I knew what caused it.

We are also getting even closer to walking! He will take a step or two by himself and then fall down.

The allergy test results came back and there is no allergy to cat dander or corn. Whew!

Monday, April 24, 2006
J started a litte group today for his therapies. It has 3 other kids and OT, PT, ST, and special ed. J will still get OT, PT, and ST once a week individually too. He's really hesitant and spends most of the two hours with his hands over his face, but I'm sure we'll get used to it quickly!

Thursday, April 13, 2006
J is sick yet again! He woke up last night throwing up and has thrown up everything he's tried to eat since. We are supposed to go in for a weight check on Tuesday, this is not going to help. He's able to keep Pedialyte down, thank goodness! J is scheduled to get his Mic-key button placed June 7th.Yesterday, J was standing at the couch and I asked him where Mama's hair is. He walked himself along the couch, grabbed my hand and put it on my head! He did it again a few minutes later! He continues to surprise me every day! :)

Thursday, April 06, 2006
Jackson had a visit to the Allergist today. The Dr. is concerned about J's lack of weight gain even with the tube. He had J retest for corn. If he's allergic to corn, that's means he can't have the Elecare anymore. That's definately not good.

We were also given a Nebulizer and Albuterol because of J's breathing episodes. He was also tested for an allergy to cat dander. Having the Nebulizer will allow us to treat the breathing episodes at home, instead of running to the ER. I feel a lot better having it, just in case.We will get the results of the testing in 10 days. His weight was 18,7, down from last week. So I guess the VNA's portable scale is less than accurate.

Wednesday, April 05, 2006
Yesterday was the last visit with the VNA nurse. She's really happy with how J's site looks, so she talked to the Pediatrician and they decided no more visits were needed.

She weighed him yesterday and came up with 19 lbs, 7 ounces. Hopefully, that's accurate! I've really been struggling lately to teach Jackson new things and new ways to play with toys. He has his idea about how things work and what their function is, and really has no interest in what I show him. I've also been working on having him point to body parts and blow kisses. He's much more intested in Pat-a-Cake. He's pretty close to doing the whole thing from start to finish!

J will be starting a small group on April 24th. I really hoping that watching and interacting with other kids will motivate him.

Friday, March 31, 2006
Jackson now has a horrible cold, runny nose, coughing, sneezing, and a very hoarse sounding voice. He coughs so hard at night that he throws up all that the tube has fed him. He even fell asleep during his exam at the GI Clinic yesterday. They checked his temp, pulse ox, and ears. All was fine except for a little redness in his left ear. The GI doctor said his site looks fine and to keep up with the Triamcinalone cream for 2 more weeks. We want to keep the granulation under control.

The Speech Therapist and Nutritionist have changed J's feeding schedule. He will now get 20 ounces during the day and have 15 minutes to finish the bottle, then I bolus the rest. At night, he will be given 10 ounces via tube at 65 ml per hour. Which means Randy or I will have to get up to disconnect him at 12 or 1 am. They want him waking up hungry. I'm not sure how this will work considering he still wants a bottle at night, even with the tube feedings. I'm not too thrilled about getting up at 1 am either.

He's at 18 lbs, 11 ounces, which is down 2 from last week. Hopefully, it's just because he's sick. The GI doctor was happy with his over all weight gain of 1.5 lbs since January.

Monday, March 27, 2006
Jackson woke up this morning vomitting. There was some blood coming out of his site. I called the Dr. on call, he didn't seem concerned, but told me to call the office when they opened at 8. The nurse called in a prescription for Triamcinalone to put on the site and we need to watch for fevers, vomitting and blood. The VNA nurse comes tomorrow and we have an appointment with GI on Thursday. The GI nurse mentioned they may need to reduce his feeds at night or do half strength mixed with Pedialyte.

He's been crabby today, but playing normally. Hopefully, this is nothing to worry about.Jackson went to watch Daddy's ComedySportz show yesterday. He tolerated the sounds and the whistle so much better! We were able to stay and watch almost the whole show!

Monday, March 20, 2006
Finally, a free moment to update! This has been the longest week of my life!Jackson had his surgeries on March 10th. He did really well, better than I did. I bawled when they wheeled him away. The nurse gave him Verased to help him with separation, maybe I should've asked for some.

Recovery was hard and he was in a lot of pain. He absolutely hated the bandage on his hand and the IV on his other arm. The Wiggles DVD's were lifesavers. Distraction was a big help! He took feeds through the tube well and his pain was under control, so we went home late Saturday afternoon.

At 10:30 Saturday night, Jackson woke up and was having trouble breathing. He was working so hard, his neck was retracting. The GI doctor on call told us to head to the ER. The doctor mentioned casually that the tube may have infiltrated J's lung. Um, what?!?! The waiting room was packed and there was a line to check in. A nurse walked by and heard Jackson's breathing and took us right to a room. He gave J a breathing treatment and steroids and readmitted us for the night. By the next morning he was breathing fine. They have no clue why this happened.

He is tube fed overnight for 10 hours while he is sleeping. So far, so good, but no one told me how much a tube fed kid can pee! The poor guy wakes up just soaked in the morning. Sleeping hasn't been great. He woke up about 15 times last night. We may end up with a sleep study to find out why.

Late last week, his site started looking red and has been oozing a little. I called the nurse and she told me that it was normal. I was still concerned, but thought she knows more than I do. J screamed every time we touched the tube site to clean it. We went to Children's this morning to have the stitches removed from his hand and stopped in the GI Clinic to have his belly looked at. I was right, it is infected. He's now on antibiotics for 10 days and we were sent to Radiology for an ultrasound to make sure there is no abcess under the site. We're still waiting for a verdict on that one.

On a good note, J is now up to 18 lbs, 13 ounces!!

Friday, March 03, 2006
18 lbs, 9 oz!!! This is the most J has ever weighed! We still have to do the G-tube, but I'm thrilled with the jump in weight!We had our G-tube training today. So much to remember. I'm still scared to death, but I feel better prepared.The ham was in his crib yesterday, supposedly napping, and I could hear him through the monitor telling himself a story, he clap for himself and then giggle. What a wonderful kid!

Monday, February 27, 2006
J has started dancing! It's adorable! He watches the Wiggles sing and bops his bum and head with the music, then he claps for himself. Eating is still going very well, and he's only gotten sick twice in the last few weeks. He goes Friday for the G-tube training. We'll get him weighed and see where he is at!We've also been trying a new bottle called a "Podee". It has a straw connected to the nipple, so J can drink upright without laying down. This is also easier on his neck. He just looks at it like, "Um, yeah, right." We'll keep trying and see if it helps him.

Thursday, February 16, 2006
Jackson's eating has increased lately! He has been taking close to 30 ounces of Elecare and two jars of baby food a day. Tonight he took two jars for dinner alone! I spend a lot of time reading labels and trying to find the highest calorie foods. (Sweet potatos and bananas are good ones!)Here's to hoping he's gained some weight! His next GI appointment is March 3rd. The NP will teach us how to use the G-tube and answer any questions/concerns we have about the tube.

J is now imitating "So Big" and "Pat-a-Cake", he loves the "roll it" part! He's also starting to take my hands and put them on a toy to make it go or to get something he wants or push away something he doesn't want.

He's become quite the Daddy's boy lately! J loves to wrestle with Daddy and he whines when Randy leaves the room. The boy practically leaves skid marks on the carpet when he hears the back door open when Randy comes home from work! :)

Wednesday, February 15, 2006
We have a date! Finally! The surgeries will all be together on March 10th at 8 am. We will need to be there at 6 am. He'll be released sometime the next morning. I'm relieved and terrified all at the same time!

Wednesday, February 08, 2006
4 pm. Finally got a call back from the GI scheduler. It seems as though they are working on doing all three surgeries on March 10th. I also talked to the Ortho scheduler and she said they are having trouble getting an AM OR. I guess, now we wait...

Wednesday, February 08, 2006
Called the nurse at 8 am this morning. Still waiting...

Tuesday, February 07, 2006
The scheduler from Children's called last week. They want to place Jackson's G-tube on Monday the 13th and still have the thumb and birthmark surgeries on Wed. He would stay overnight Monday, go home Tues and be back in the hospital on Wed. I told the person on the phone that I didn't like that idea and she said that the next appointment to do all three wouldn't be until March. I'm fine with that, but she didn't think the GI doctor would be. She said she would talk to the GI Clinic and call me back. Well, I'm still waiting. I called the GI nurse yesterday and I'm still waiting.This whole thing is very frustrating and nerve-wracking.

Tuesday, January 31, 2006
Jackson had his 18 month check-up today. His weight was 17 lbs, 4 oz, so we are up a little bit! The Dr. was happy with the things he is doing and she is in favor of the G-tube. No shots today, so the biggest drama was getting his head measured. He was so mad about about that!

I forgot to bring a diaper with me, so I asked the nurse for one. She opened up the door and threw one on the exam table. It was the biggest diaper I've ever seen! It covered J's chest! When the Dr. came in she started laughing and asked what J was wearing and I told her the nurse gave it to me. She went and looked at the box and the diaper was for a kid up to 57 pounds! We have a loooong way to go before we hit 57 lbs.! :)

Sunday, January 22, 2006
We met with the GI Clinic last Thursday. The doctor and nutritionist are very concerned about J's weight. He's still only 17 lbs. 1 oz. The GI doctor feels that J's brain doesn't have the hungry/full cues that it should. She also feels that J has borderline severe malnutrition, so his brain is turning off the hunger cues to conserve the energy he has.

Along with not gaining weight, Jackson's height has also started to suffer, which is concerning because his body is starting to shut down all growth. Cognitive skills would be lost next, and we want to do what we can to avoid that. So, to make a long story short, we've decided to have a G-tube placed into Jackson's belly. He will have set mealtimes throughout the day and be given 30 minutes to finish. Whatever he doesn't finish will go into his belly via the tube. I'm very nervous about the surgery, but I know in the long run this will help him so much. The risks are relatively low, but he will have to stay in the hospital overnight.

The GI Surgeon is going to coordinate with Ortho and Dermatology, and all the surgeries will be done together. He'll be sore, but it will be all over with at one time.We don't yet have the date for the surgery, I'm waiting to hear back from the GI Clinic.

I'll update more as I find out.We now have a prescription for Prilosec for the reflux. Hopefully, it will help him sleep at night because his tummy will feel better.

Wednesday, January 18, 2006
J's surgery date has been changed to 2/15. I'm so nervous about it, hopefully our appointment with the Ortho on Monday will provide more information.

Sunday, January 15, 2006
I've just found this cool journal feature, so now I can update all of J's info here! Nighttime sleep and naps have been horrible for the last few weeks. J has been waking up 5-10 times per night. I've checked for teeth, fevers, hunger...I just don't know what else to do. I do have a strong suspicion that he's refluxing again. We'll talk to the GI Clinic this Thursday and see what they say.

Wednesday, January 11, 2006
Yet another ER visit! Jackson woke up at 2 am with a horrible croup cough which then evolved into strider. He was having a horrible time breathing and wheezing when taking in breaths. I called his ped and she told me to try a hot steamy bathroom, which didn't work. At the ER at Children's they gave him a breathing treatment via mask and oral steroids. We then had to stay for three hours to make sure the treatments worked, if not, he would've been admitted to the hospital. What fun! He's doing much better now.

Waaaay old stuff:

10/15/05 Jackson is now pulling to stand! Woo Hoo! We are still working on balance, but it's coming! He's sitting for longer periods of time without support. We bought him a Fisher Price walker that converts into a bike and he sits on it unassisted for close to 10 minutes. The steering wheel and buttons keep him very entertained!

He gives "five" and opens/closes his mouth when we ask him what a fishie says. It's very cute! We are working on sign language. Jackson imitates the sign for "eat" and we are practicing "more" and "all done".

Since Jackson has been switched to Elecare formula (due to allergies) weight has been coming on like gangbusters!

12/13/05 Jackson visited to GI clinic last week and has lost weight due to a bout of croup. The GI doc is concerned about J's weight, saying that "he's the weight of a 6 month old." The Dr. put him on an appetite stimulant, but as it turns out J is allergic to it. We've increased the concentration of his formula, but if he does not gain weight by the end of January, we may be looking at an NG tube. He would be drip fed at night to help him gain weight.

Jackson is now crawling on his hands and knees more often, rather than commando crawling. He's pulling up to stand and cruising a little at the couch. He's able to get down without falling now. He's imitating gestures to "So Big." It's adorable!

12/30/05 Jackson had a great Christmas, in spite of having the flu most of last week. He got way too many toys, but is having a blast exploring them. His favorites are the train table Grandpa made him and his Fisher Price Castle!

He's lost some weight due to his flu, so hopefully, we can get some back on him before his GI appointment at the end of January. We want to do what we can to avoid the possibility of tubing.

His trigger thumb and birthmark removal surgeries are scheduled for February 10th. They will be done at the same time and the two surgeons are brother and sister. Crazy, but I'm sure they will work well together!

1/4/06 Now we are in for trouble! Jackson can climb stairs! He went all the way up, with me hot on his heels, looking for daddy! He just continues to amaze us!