For your education...

Pershing Early Learning Center 2012

Syringes for medication. I order these 2-3 times a year because insurance doesn't cover the cost.

Getting ready to make Jack's CoQ10. The liquid version is super expensive and would only last for 2 days each. Insurance doesn't cover this medication because it's OTC.

The finished product. This will last for 12 days.

This cabinet is in Jack's room. It contains his medical binders (his medical records), Early Intervention, preschool, and therapy files (IFSP and IEP), mileage binder (all paperwork for mileage I claim for taking Jack to out of town appointments), and some extra medical supplies.

60cc syringes, g-tube extensions, and Surgilube for when the g-tube comes out.

The Moog Infinity Enteralite 500ml Feed Bags. We get one box of 30 each month through our DME (durable medical equipment).

That stack of blankets are the hospital blankets we use for when Jack vomits. The blue bins contain diapers, more 60cc syringes, and bags for Jack's never-ending poop!

I had to add this picture because it's so silly! Jack is sitting on a baby doll carseat trying to buckle up. He was saying, "baby carseat. Buckle up."

Gastric Relief System Farrell Bags. We use these bags every night to help Jack's belly.

Medication for a two night's stay out of town. CoQ10 (muscle deficiency), Claritin (snotty nose), Lactulose (poopy problems), Prevacid (reflux), and Cytra-K (kidney chemistry).

"Basket bath."

Me: "Jack, time for a bath." (I strip him down to his diaper) "Go to the bathroom for your bath."
Jack: (Only in a diaper, Jack bottom-scoots down the hall and passes by the bathroom. He enters his room and gets a basket of toys. He empties out most toys and pushes the basket to the bathroom.) "Basket bath. Kazoo bath. Barbie bath. Hammer bath."

Stars, Stripes, and Sousa

We had the pleasure of taking Jackson to his first band concert on Friday, September 27. It was called Stars, Stripes, and Sousa and was performed by the Illinois State University bands. This concert was a very special experience for Jackson and other individuals with some sort of special need.
Here's a link about the concert.

Stars, Stripes, and Sousa
 (I have blurred out faces of those who are not family as to keep from causing any privacy issues)

• The 'petting zoo' was a blast! We had two Special Education/Music Therapy students assist us with Jack throughout the entire event.

• During the 'petting zoo' Jack enjoyed the percussion table the most, but also seemed to like listening and touching some of the other instruments. Each musician was sure to play "Twinkle, Twinkle" for Jack. He listened to an alto saxophone, a tenor saxophone, a guitar, a bassoon, a bass saxophone, a flute, a clarinet, and a bass clarinet. He avoided the brass instruments, which doesn't surprise me. They are much louder! He played the drum, a lot, at the percussion table, touched the bass saxophone to feel the vibration, which startled him, and looked inside of the clarinet!

• Before the concert started, the 1st chair clarinet played some tuning pitches for the ensemble. Jack gladly picked up his recorder and started playing along! I almost started crying at that point! It was soooo adorable!

• We all stood up for the "Star Spangle Banner" and Jack played along!
• Jack played his drum for numerous pieces! He really enjoyed it! I continued to giggle because he would yell and shout whenever the band wasn't playing. One boy at the concert was telling a story about his Army toys.

• A piece was played and the audience was invited to dance along. Jack was swaying back and forth in his chair and a couple of audience members were dancing with the student volunteers.
• Egg shakers and kazoos were passed out and we played along with the band. Some audience members were marching in a line!

• Scarves were passed out for the "Stars and Stripes Forever" and I helped Jack play and move along with the music.

It was wonderful for the audience members to be allowed to move, talk, squeal, dance, and just not be restrained! What an amazing experience! I don't think we'll ever forget this concert and I hope we will have the chance to attend another one in the future!