"Feed the Dino"

So, Jack had Speech Therapy this morning. He did a very good job.
I wanted to share with you, the joy from the session.
Instead of playing "Feed the Baby", we played "Feed the Dinosaur".
Jack was given play plates, bowls, cups, forks, and spoons. With his hand guided, Jack stirred the food in the bowl (or cup) or scooped the food on the plate, fed the dinosaur, or gave the dinosaur a drink.

There was a brief moment when Jack stirred the food with a spoon and then fed the dinosaur, all by himself!!!!!!!!!!!!!!!!

Over the past week, Jack traveled to Springfield once for feeding therapy, and St. Louis Children's twice for clinic appointments. Grandma came along for all of the appointments.
But first, there was a Speech Therapy appointment. It went very well. I loved watching Jack work so well with his therapist. He did so many different concepts-play with toy dishes and utensils, feed the baby, look at pictures, point to pictures, communication via recording device. . .
Pediatric Surgery for the mic-key button coming out 3 times. The button fits great! No need for a change. There's a chance that the buttons were part of the product line that was manufactured wrong. We talked about the GI problems and the Dr. mentioned about slowing down the rate/hr, so I did. We also talked about the possibility of a GJ tube (Gastrostomy Jejunostomy tube-the feeding tube passes through the stomach directly into the intestines). The Dr. said this was not recommended because it might make the some of Jack's problems worse. Good to hear.
Feeding Therapy was unsuccessful. Jack has finally stumped the feeding therapist. She said she would be contacting the feeding team to discuss Jack. I'm supposed to get a call from her with any ideas on what may help Jack gain interest in food once again.
The neurology appointment went very well. Jack's CoQ10 has been doubled. The neuro is thinking that Jack may be having GI, Behavioral, Feeding, and muscle difficulties right now because he needs more CoQ10 in his system. His dose was based on 6kg, and now Jack is 8kg. We're doubling Jack's CoQ10. I'm expecting to see changes within a week. I just started the new dose this morning. The autistic tendencies: The neuro said that he didn't see how Jack could also have Autism. I agree. Jack does some odd things, but he doesn't fit into the category of Autism Spectrum Disorder very well. He has Global Developmental Delay, which we already know. Jack performed some new skills during the evaluation. Yippee.

We had Developmental Therapy this morning. Jack worked hard.
He'll have Speech Therapy again on Friday.
Occupational Therapy was canceled today. I'm sick. I have whatever Jason had. I'm not in the bad stage yet, but it's coming on fast. Jack's pediatrician just called me. She just got back from maternity leave and was concerned about the multiple notes on Jack. She read about the button problems, weight problems, nutritionist problems, odd fears, etc. He'll be getting weighed in a couple of weeks. The pediatrician isn't happy with Jack's recent weight issues. Evelyn has gymnastics tonight and dance tomorrow night. Grandma, Evelyn, Jack, and I went to church Sunday. We didn't stay too long. Jack did his screaming thing again. I wish I could find a way to let him enjoy church and the music, without acting like it hurts his ears.

woopsie-do-again-and-again

Yes.
That's correct.
Again.
and Again.
Jack's button came out again this morning. This makes Saturday, Monday, and today (Wednesday).
Today the tube gently pulled on the side of Jack's highchair and we were walking by and the button popped right out! I went ahead and checked the balloon (there is a balloon that is filled with water which is supposed to keep the button in Jack's belly) The Button
I placed 5-5.5 cc of water in the balloon on Monday. Today when I checked it it had 4-4.5 cc of water.
I tossed both buttons from Saturday and Monday, which were both used and sanitized. Thank God for insurance. That was around $360 tossed away. I placed a brand new button in. Not easy when doing it by myself.
We see the Pediatric Surgeon tomorrow morning. . .maybe Jack needs a bigger button.

My little man

I got Evelyn and Jack 'matching' pajamas today!
The silly part is when I went to go check in on Jack while he was sleeping. I almost started to cry. I know my eyes started to tear. He looks like a boy. A child. A kid. A toddler. He didn't look like a baby laying in his crib. This was a very hard moment. My little man. He has a wonderful, big sister who loves him very much.

woopsie-do-again

Yes.

That is correct.

It happened again.

This time I did it while placing Jack on the floor. I do believe that his stoma (the opening in Jack's abdomen where the feeding tube enters) might be stretched. I called the Pediatric Surgeon and left a message with the receptionist. I am now waiting for a returned call. Maybe Jack needs a bigger button, or even a different type.

Argh.

woopsie-do

I just wanted to share our woopsie-do moment from Saturday. We had a family member taking Jack out of his chair and his button was accidentally pulled out, completely. The tube got hooked on the side of Jack's chair. This has happened in the past, but usually the feeding tube comes out of the extension, which locks into Jack's button. I got to play nurse. We got a back-up button in and the other one sanitized. Jack didn't seem to mind, at all! Actually, he was only angry when we had to hold him down to place the new button.

it was a no-go

Here's a quick update. Jack didn't have his first Speech Therapy session Friday morning. Evelyn ended up staying at home sick and was scheduled for a doctor's appointment at the exact same time as the Speech Therapist was going to come over. And, of course there weren't any other appointments available.
Speech Therapy has been rescheduled for next week.

Jack played in the Exersaucer and learned how to turn his body around in it. He also enjoys making it rock!
He also sat on the Bounc and Spin Zebra and play Motorcycle. He didn't scream when I placed him on,. He held on and I bounced him gently and rocked him gently. Phew!

Thursday, Thursday

I had that song, "Monday, Monday" in my head when I decided the title of this post.

Good week. I know we still have Friday, but it's been a good week. Jack has been very pleasant since he decided to sleep again. He's also been taking very good naps. I have had to wake him up each time. I feel bad about waking him up, but we do have a schedule to keep (pick up Evie from school, occupational therapy).
Jack's tummy issues seem to be resolved. At times, they do come back. We will be seeing the GI Specialist again at the end of October.
Jack was weighed Wednesday morning. He is finally 18lbs. No ounces or anything. It read 18lbs 1oz but Jack was wiggling and screaming on the scale! I'm going with 18lbs. My son is 20 months old and weighs 18lbs. He weighs as much as a baby 8-10 months old. He's around 29 inches long. That's not bad. His head didn't seem to grow over the past 6 weeks. We'll be measuring that again in 6 weeks.
Oh, and he's been 'talking' up a storm! Can't wait for tomorrow (Friday) morning! It's Jack's first Speech Therapy session! Can't wait. I need to be sure to take notes.
Evelyn has been sleeping since 4pm. She's been coughing since the weekend. No fever. No aches and pains. Just a stuffy nose and a cough, and now she's slept through a snack and dinner, and another snack. Hope she doesn't wake up over night. I still have to move her from my bed. That may not happen. . .

'night

oh dear.

So tired. Jack didn't sleep a wink Saturday night. Seriously. I don't even know how to get into the specifics because I'm just so tired.
The last time Jack slept was Saturday for a 1 hour nap. Nope. No sleep Saturday night. My mother and I rotated taking care of Jack, while the other dozed on the couch or in bed. Jason even had a shift in there. Jack just screamed and screamed and screamed, or wanted to play, but DID NOT want to sleep. He would try to sleep, here and there, but as soon as he started to doze he would scream. He would nod off in my arms, or in his car seat, only to wake back up.
We even took him along for an hour drive to an orchard, where he then received a good amount of fresh air. He only slept for 20 minutes. Jack tried to sleep on the way home only to continuously scream with his eyes closed. Every time he would start to doze off, he'd start to scream.
At the moment, he's been sleeping in his bed for about 30 minutes. It's around 6pm.
I'm not sure what tonight will hold.