2nd day, way not the same as the first!

9am. I take Jack into his classroom for his 2nd day of school. I must backtrack to Wednesday. Jack had a hard Wednesday. He vomited and coughed and gagged a ton. More and more snot! He had a horrible night as well. I lost count of how many times I was awake with Jack. He fussed and cried most of the night! Really, he also had a hard Thursday, and that doesn't even include school. He vomited and coughed and gagged a ton. And, he's been screaming in his bed, on and off, for 45 minutes! He sounds pitiful.

Ok. back to the 2nd day of school.

9am. I take Jack into his classroom. We walk through the door and right away Jack does his 'fuss/moan' to let me know that he isn't happy. There is a little boy and a Developmental Therapist working by the floor-level mirror. I take off his jacket and hang it up on a little hook (so cute). I sign Jack in and then sit him on the mat so he can 'chill'. Nope! Jack didn't want to chill. Jack wanted to cry. The DT picked Jack up and said 'Hello Jackson Waddell!" She took Jack over to some toys and picked one out for him. They sat on the floor, directly in front of me, and played. Jack fussed, cried, fussed, cried. He eventually calmed and played. A short while later the other Developmental Therapist came in with some more kids. They all took off their jackets and quickly sat on the floor and played. (I originally planned on leaving around 10am to have an hour-and-a-half of me time, but with Jack's fussiness and gagging, I needed to stay. The teachers appreciated that!).
Fast forward to 10:30am. Jack had fussed and played fairly well. The DT put Jack on his belly. He didn't do anything but scream and eventually flipped himself over.I ended up trying to hold Jack to calm him. Didn't really work. I opened up his 'emergency kit' and vented his belly. A TON of air came out! One would think that helped. Oh, did I tell you that there were 9 or 10 kids total today, and a couple of them were also fussy! It was loud and busy! The teachers decided that 'snack time' should come before 'circle time' because the kids were so fussy. Ha! This, I figured, was going to be a bad idea. I took Jack over to the Rifton chair, sat him down and strapped him in. He screamed a lot. I placed a t-shirt over his shirt. He screamed. The teacher placed some apple sauce on the table. I put Jack's hands in it. He screamed and put his apple sauce-covered hands in his hair. He then started to scream so hard that his tongue was sticking out, his eyes were rolling back and he was turning red. I cleaned Jack up, and took him out of the Rifton chair. It was time for Speech Therapy, anyways! Usually, speech therapy occurs in the classroom, but this was Jack's first time and the ST wanted Jack to focus. The Speech Therapist took Jack out of my arms and we left the classroom. As soon as we were in the hallway, Jack calmed down. He didn't even mind having someone else hold him.
Do you remember when Jack only wanted me?
Anyways, we were out of the classroom for a good 30 minutes. Jack did wonderful. The room we were in was nice and quiet. Jack played with toys and worked with the ST. He just needed some quiet time. He was overstimulated.
We all know, by now, that Jack doesn't do too well in busy, loud situations.
After speech therapy, Jack did the art project (his hand was painted with orange, white, and yellow paint and pressed on paper to make candy corn) and NO, he didn't like that. I left to pick Evelyn up from school and Jack was taken by the teachers.
When Evelyn and I returned, the class was having 'circle time'. Jack was in the Tumble Form and he was playing the drum! The kids sang songs and listened to books. They also pointed to pictures in the books. Jack was REALLY into this!

There he is! The teachers were talking about getting the Rifton Corner Chair back for Jack to sit in. The Tumble Form is really hot for Jack, and he doesn't need that much support, but the Rifton Chairs are too deep and the backs aren't tall enough (I wonder if the backs can be moved forward).
Here's the Rifton Corner floor sitter.

first day of school

9am-Jack's first day of school at the STEPS program. I take him in and we meet one of the Developmental Therapists. A mat is placed on the floor and Jack is sat down. He's given a toy. The DT plays with Jack. He's already having fun. From 9am-almost 10:30am Jack plays with two different DTs, a Millikin student, and other kids. This is the time when the kids receive Physical Therapy, Occupational Therapy, or Speech Therapy. At one point he gets angry because he's been sitting up for more than an hour and just wants to 'lay and play'. Nope. not here. He's there to work! Circle time begins. Jack is sat in a Tumble Form chair.

He gets very mad. The other 4 kids are sitting in Rifton chairs.
The class went around, finding their picture and putting it on a wall.
Each child was given a drum and mallet and the class sang a song about the child and then about the drum. Jack didn't have a picture yet but the song was still sung and he was given the drum. Boy oh boy did Jack like the drum. He tapped it during the song and I got all teary eyed. He got to play with the drum the rest of circle time because it kept him from fussing! That's our little musician!

Snack time came next. Snack time is meant for therapy purposes as well. Each child got a white T-shirt to keep his/her clothes clean. Jack too! This time Jack sat in the Rifton chair at a table with the other kids. The kids ate a bowl of banana pudding with chopped banana and had a sippy with chocolate milk. Jack was given some pudding on the table and his hands were smushed all around in it. He didn't like that. He did, however, put his fingers in his mouth (probably because he's teething) and quickly discovered that the pudding had a taste. He did it again. The DT also placed some pudding on Jack's lips. Jack even asked for 'more' by signing. The kids were also given some cheese puffs. Jack too! He didn't touch them. He did try to throw them on the floor.

I had to leave to pick Evelyn up from school, but when I returned, Jack was still at the table, this time with his hands in a mix of shaving cream and paint. He didn't like this either, but hey!, it's a sensory experience! Mr. hypersensitive wasn't given a choice!

Once the kids were cleaned up they went to the gross motor room. Jack was so tuckered out by then. Evelyn played around in the room and Jack sat on the floor fussing. He was tired!

Jack's first day went very well. He passed out when we got home and took a 2 hour nap. And, he slept through the night! Can't wait until Thursday!

"I want that mom"

Jackson seems to be getting better. He's been taking a special anti-nausea medication, Zofran, since Wednesday night. We had success until this evening. He vomited in the car. Darn.

The Endocrinologist called me today. The Endocrinology team discussed Jackson during their weekly rounds and decided that, instead of taking the Growth Hormone Stimulation test, they would go ahead and do a trial to see if it may help Jackson grow, and also build his strength! This won't start for a while, but I'm thinking that we'll be starting the nightly injections within the next month.

Jackson pointed to some baby toys at a store and said, "uh" and signed "want". So cute!

I took the kids to church this morning. I tried to take Jason as well, but as we were pulling out of the driveway, the new garage door opener wouldn't close the door. Jason stayed back and battle with the sensors, and I took the kids to church. And. . .Jack only cried one time. He sat in his KidKart and played with his toys, tossed his toys, read his books, and even danced to the music (rocked his head from side to side). He also clapped at the end of service after the closing song! So funny.

And, I have learned a very important rule today. DO NOT sit a child with sensory processing disorder in a pile of fall leaves to attempt to take a picture. BAD IDEA!

I'll keep Jack away from the babies

Well, Jack has been vomiting for 9 days now. I took him to the Dr. today for a follow-up from the ER appointment on Thursday. Jack hasn't gained weight in 2 weeks. Go figure. So sad. Jack hasn't been getting even half of his total volume of formula, and he's been vomiting up part of that, including medications. The part that saddens me is how the pediatrician doesn't know what to give Jack to help him. His lungs are clear. He doesn't have a fever. However, he vomits and vomits and coughs and coughs and gags and gasps for air when coughing. I wouldn't be surprised if he had RSV again, because his lungs were clear those times as well. He was tested for RSV on Thursday and it was negative. Even if it were positive now, I don't think much could be done. I guess I'll just keep Jack away from other babies for now, and pray that the stomach calming medication helps.

On a good note: Jack is starting school next week! I know! He's only 21 months old and he'll be going to school. Jack will be attending the STEPS program here in Decatur. It's a class of children who receive Developmental Therapy and at least one other service. The children are up to age 3. He'll be in school twice a week for 3 hours a class. He'll receive most of his therapies there. The class even has circle time, arts and crafts, gross motor play, and snack time. And. . .everything revolves around some form of developmental therapy.

That is all for now. Jack is fussing again. I guess I'll go check on him. He should be sleeping but with the way he's fussing I'm guessing that his belly hurts and he's going to vomit. . .again.

what a weekend!

Hi there. Did I ever tell you how Jack has had this nasty cold? The one that the rest of the family has had? Well, remember how Jack puked snot all over his physical therapist? Well. . .he vomited a couple times Thursday, a couple times Friday, and 4 times Saturday. Thank God he didn't vomit today. That's because I stopped feeding him bolus (with the syringe and gravity) and put him back on the pump, very slow drip. I actually was advised to take Jack to the ER on Thursday evening because his pediatrician wasn't in and Jack woke up from his nap breathing in all gasping and snotty like. The nurse wanted Jack tested for RSV, influenza, and to get a chest x-ray. Jack also had low-grade fevers from Tuesday on. . .Off to the ER we went. Three hours later we were home. All tests negative and an antibiotic prescribed for Jack's ears. I would go on to complain about the trip to the ER and the quality of care (so not good) but I just am not in the mood to vent. . .Surprising, I know!
The weekend was stressful with a sick Jack, although he wasn't acting sick, which is great! I just couldn't really take him anywhere, except for a quick trip to PetSmart and Target, because I wasn't sure if he was going to vomit again. That also means no church, again. It drives me nuts. I really want to attend church. I just can't seem to get there because of Jack. I'll focus on the coming up weekend. My goal will be to get to church.

Oh, and here's a picture of Jack's new foot-to-floor ride-on toy. We're hoping that Jack will learn to push his feet on the floor to move around. What's so cool about this toy is the safety rails on the sides. The toy didn't come with straps, and I don't even think I'll need them! Jack is able to sit on the toy when we push it with the parent handle, all by himself! I can't allow Jack to move around the house on his back. Just no good. I actually have a video of Jack traveling down the hallway on his back. I have to get it onto my computer and edited first. It will come.
I travel to St. Louis Children's Hospital Monday afternoon with my mom and Evelyn, and of course Jack. We visit the Endocrinologist tomorrow. I'm looking forward to this appointment. This is a new Endo. I'll be bringing those lab results from the Growth Factor I tests, as well as the medical records from the Nutritionist and the past Endocrinologist, and Jack's growth charts from his pediatrician. I'll fill you in once I get the chance.

quiet time

I'm giving myself some quiet time. It's a little before 10am. Jack is playing with his toys. The dogs are sleeping. Evelyn is at school. It's nice and cool outside. I should be cleaning, coloring my horrible gray hair, playing with Jack. . .but instead I'm sitting with the television off, sharing the peace and quiet with you.

Jack had physical therapy yesterday. I didn't cancel because he doesn't have a temperature. Jack does have a NASTY cold, but that's all. . .for now.  So, back to the physical therapy. . .Jack was so peeved! His therapist was holding Jack between her legs, trying to get him to kneel. He wanted nothing to do with that. We got his legs into a standing position since that's what he did a while back. Oh, here's the photo of that!

Well, Jack locked his knees and pulled his entire upper body into a stand! Of course I didn't have the Flip recorder out! We were so excited for him. He was screaming the entire time! Evelyn and I got the Flip out and started recording again, hoping that he would repeat this incredible strength he recently demonstrated. Nope. Just a TON of screaming. Jack's therapist eventually sat Jack on her lap to allow for some 'calm down' time. This is when Jack decided to start coughing from screaming so much, followed by a disgusting 'snot vomit' all over the therapist's leg! Nope. I didn't get that on 'film'.

That is all I have to share. Jack has slept through the night for two nights now. Keep in mind: Jack is being drugged with Zyrtec during the day and Benadryl over night. Gotta be why!

teaching you a new sign

Tonight, I'm going to teach everyone the sign for the way Jack has been acting since Tuesday evening.

Lift your hand to your face and look at your palm. Scrunch your fingers towards your face while making an angry/grumpy face. That's right. Everyone just learned how to say 'grumpy'. Jack has been grumpy since Tuesday night. There have been some nice, pleasant moments, but a lot of fussing, whining, screaming. . .you get the idea. I ended up holding Jack a lot. He played and babbled some, but so much fussing. Probably not as much and I think, but I'm so exhausted just thinking about it. . .
teeth? belly? something else?
He had a very runny nose this morning and has been coughing a lot tonight. However, the coughs sound like the "Uh oh. Jack is about to vomit" coughs.
Blah!

His first Play-Group

Well, it's officially happened.
I've taken Jackson to his first play-group. It was at Baby TALK here in Decatur, IL. We met a friend there and sat with a group of mommies and babies for about 40 minutes. Although the group is for babies birth to one year, I didn't feel too odd with Jack in the class. There were babies as young as 2 months and as old as 13 months. Jack played with the baby toys, interacted with his friend Bella, and smiled when we sang songs and signed with our hands.
It was, overall, a good experience. I did feel the need to run a couple of times, mainly during conversations about sleeping, breastfeeding, and weight. But, I broadened my shoulders and stuck through it, and I'm glad that I did! And I can't wait to take Jack again next week!

Communication

We have a little communicator on our hands!
That's right! Jackson has been communicating with us more and more. He's been pointing to different toys that he wants to play with, as well as the exersaucer! The excitement with the exersaucer? Jack always had trouble with it because he was so weak and tiny. Now. . .he sits in the middle, moves himself in circles, rocks and even bounces at times! What an improvement! Jack even plays with all of the toys. The best part about this new-found communication? Jack asks to play in the exersaucer several times each day!

He hasn't eaten a thing, but that's ok. I've stopped using the feeding pump during the day due to the recent feeding-tube-came-out-three-times-in-five-days event. Jack eats from the pump overnight. During the day, he's been receiving 3 1/2 ounces 4-5 times a day via syringe. It's called bolus feeding. So far, so good. We'll see what the pediatrician says about this new form of eating when we see her Monday morning.

Anything else? I accidentally threw my cell phone in a poopy trash bag, which was tossed into the outside trash can. I found it, Thank God, the next morning. . .

Oh, and Jack had a bath tonight and DIDN'T THROW A FIT.

And, he's been moving himself all over the floor! What a HAM!

He hasn't eaten a thing, but is just doing wonderful!