WK’s Daily Schedule and it’s enough to make your head explode!

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WK’s Daily Schedule and it’s enough to make your head explode!

So want to know what consists in “A Day In The Life Of A Warrior?” Yes let me start by saying I know that every Parent leads a busy life. Trying to juggle work, kids, sports, etc. I get it so I am not trying to gain any sympathy here, but I think it is important to share what goes into making WK function at the level he currently is functioning at. WK is a “schedule” kind of guy. In order for him to stay on task he needs a strict schedule and as you will see below, it is bananas.

WK’s Current Weekly Schedule:

Sunday:
SCIG Infusion 730-930
Every other weekend we get Respite (I’ll explain) so he hangs out with his favorite Babysitters from 10-4 doing fun things like Laser tag, The Park, etc.

Monday:
School 815-245
Social Skills Class 330-430
Occupational Therapy 430-520

Tuesday:
School 815-245
Exercise with my Crossfit Coach (I’ll explain) 330-4
Speech Therapy 430-520

Wednesday:
School 815-245
Exercise with my Crossfit Coach 330-4
Speech Therapy 430-520

Thursday:
School 815-245
Social Skills Class 330-430
Occupational Therapy 430-520

Friday:
School 815-245
Rock Band School 4-5 (I’ll explain)

Saturday:
Special Ed Sports League (current Baseball) 1045-1215
Special Ed Karate 3-4

Yes…he’s a busy dude with not much time for bike riding, play dates, etc. A few years ago I decided to pull him out of Summer School entirely and just let him be a kid at Summer Camp. So I sent him to the YMCA at his old public school with an Aide and he had a blast. This particular YMCA site is close to the beach and a park so they do a walking field trip each week to the beach, the park and then a bus field trip somewhere. Usually the bus field trips are to Knott’s Berry Farm, The Aquarium, etc. It has been a great experience for WK mainly because he is able to attend a “typical” Summer Camp with a 1:1 Aide who is there to support him should he need help waiting in line, taking turns, following directions, playing appropriately with peers, etc. It honestly is the ONLY fucking way I can comfortably send WK to camp. Without an Aide there would be ZERO chance he could handle it all day by himself.

This Summer I changed it up a bit because I think he is ready to do “something different” for part of the time. Change is hard for him and therefore hard for me but I am hoping he will do fine. Last year at YMCA he met a lovely young lady named Mattie and she really took WK under her wing. What a blessing this young lady is, you really have no idea. She would spend every day with WK, playing board games, playing outside during break times, sit together on the bus, walk together to the beach. You get the point….WK met a friend who loved just to be with him regardless of the Autism.

Luckily she is going to be at the YMCA again this Summer but only in June and August so I had to find another place for him to go in July. There is a cool outdoor camp that also allows “special” kids to attend with an Aide and therefore his Aide from the YMCA will be able to support him at the new camp as well. He is going to learn how to kayak, do archery, arts and crafts, etc…a true Summer Camp in my opinion. And how cool is this….Mattie is going to attend one of the weeks in July with him! ☺

During Summer his schedule will be equally as busy:

Sunday:
SCIG Infusion 730-930
Every other weekend we get Respite (I’ll explain) so he hangs out from 10-4 doing fun things like Laser tag, The Park, etc.

Monday:
Summer School 815-245
Social Skills Class 330-430
Occupational Therapy 430-520

Tuesday:
Speech Therapy 815-905
Summer Camp (either YMCA or New Camp) 10-4

Wednesday:
Speech Therapy 815-905
Summer Camp (either YMCA or New Camp) 10-4

Thursday:
Summer Camp (either YMCA or New Camp) 9-3
Social Skills Class 330-430
Occupational Therapy 430-520

Friday:
Summer School 815-245
Rock Band School 4-5

Saturday:
Karate 3-4

Yes my head is about to explode even typing this let alone trying to manage it. I am thankfully organized and anal about things like this so usually the schedule works for him quite well as long as I am able to print it out and tape it to his wall, aka frontload him so he knows what is coming and when.

A few side notes, WK exercises with my Crossfit Coach two times per week right now as unfortunately the IVIG infusions made him gain 14 pounds over 1.5 years. It was actually from the steroids in his IV which as you recall from one of my earlier posts, were given to him to combat the side effects.

During Summer he is going to take a break from exercising because his schedule won’t cooperate but I will say, this has been a great and challenging experience for WK. He has been pushed to do things that are hard for him and even though he complains a lot, he comes out sweaty and most importantly he is proud of himself for finishing the tasks presented by his Coach.

I wrote about Respite services above. We receive 16 hours of Respite care per month from the local Regional Center (State funded program). This means that someone comes to my house and hangs out/babysits WK so that I can catch a break.

I have NEVER EVER let anyone drive WK except my Mom, Husband and Best Friend so allowing someone to drive him places was a BIG deal for me. Thankfully his Summer Camp Aide and her Sister (both of whom are Special Ed Teachers) share the respite hours each month. It’s been a wonderful experience for WK because he gets to ride in someone else’s car, go to places that are super fun for him and most importantly get a break from Mom and Dad. It’s really a win/win for all of us.

A few years ago, I put him in a local kids rock band school. It has been such a rad experience for WK. He sings, is learning the drums and keyboard. Prior to him getting sick with his PANDAS/PIDD Auto Immune Disease, he would perform at big venues like The House of Blues in front of 500 people. When he got ill and had severe tics, I pulled him out of the live performing program because I didn’t want him to feel any anxiety about his tics and performing in front of people. I am hoping that I can get him back into the live program at some point but for now he is enjoying learning songs from his favorite Artists like Bruno Mars and Maroon 5 (I will write an entire separate post about Rock School soon).

So there you have it…a week in the life of a Warrior Kid schedule wise. Overwhelming? Yup, I would sure say so but wait…there is MORE. I figured now would be a good time to share WK’s daily medicine schedule as well.

If your head hasn’t exploded yet, it may very well explode after you finish reading this bullshit. So yes, his day to day schedule is crazy nuts and hard to mange. I’ve said it, you get it, and now I am moving on. But take the above and combine with what you are about to read and then you will understand why I drink Grey Goose and Soda Water daily. UGH!

Below is WK’s daily Medication Schedule:

Breakfast:
* Toosh/Groin: Triamcinolone Acetonide Cream or Vytone Cream with Aloe (Trade on and off between the two)
* Elbows & behind Left Ear: LacHydrin Ten lotion followed by Ultravate ointment (AS NEEDED for Eczema)
* Eyelids (usually just the left eyelid): EpiCeram lotion or over the counter Aquanil HC lotion (AS NEEDED for Eczema)
* 1/4 applesauce mixed with 1 probiotic (blue jar in fridge)
* 5ML Augmentin (shake well and give with food)

Dinner:
Medicine:
* 200 MG Zoloft crushed, 1 Tenex pill (2MG) crushed, and 1 probiotic (blue jar in fridge) mixed into 3/4 container of blueberry applesauce. Needs to sit on counter for 30 minutes to dissolve pills.
* 5ML Augmentin (shake well and give with food)
* LDN (Low Dose Naltrexone Cream) -1 ML on back of legs or belly/chest
* Use Cetaphil Restoderm lotion all over body and face
* Toosh/Groin: Triamcinolone Acetonide Cream or Vytone Cream with Aloe (Trade on and off between the two)
* Elbows & behind Left Ear: LacHydrin Ten lotion followed by Ultravate ointment (AS NEEDED for Eczema)
* Eyelids (usually just the left eyelid): EpiCeram lotion or over the counter Aquanil HC lotion (AS NEEDED for Eczema)

SCIG Infusion Treatments:
WK needs SCIG infusion treatments 1x every week on Sundays from 7:30am-10:00am prescribed by Dr. Bhakta. Currently WK is receiving SCIG at Home thru NuFactor Pharmacy. Nurse Rachel is the Nurse who is best with WK and has been taking care of him the entire time he has been having infusions. WK receives 14 Grams of Hizentra medication. Most important things to note with SCIG are as follows:
1. Lots of extra fluids starting on Sunday and continued through Tuesday
2. Start giving Advil night before at 6pm and then every 6 hours for 2 days after.
3. Give dose of Benadryl right before infusion starts-1 tsp

******SIDE NOTES:
1. WK receives a B12 injection in his butt every 3 days. The calendar for this is in the kitchen next to his black binder.
2. Use only the Cetaphil Restorderm body wash on face/body during baths. Aveeno baby wash for hair is ok. Try and moisturize WK within 45 seconds of getting out of bath so that the lotion soaks in his skin. This helps with his eczema.
3. If he get constipated give him 1/4 tsp of Fibersure mixed with his Fruit Falls Juice and Water in a kids proofed cup, lid and straw
4. Brush retainer every morning after he wears it during bedtime.

So Folks, there you have it…a fucking Day in the Life of a Warrior! What can I say except that shit is hard. Sometimes I just can’t believe my poor kid has to endure so much crap but he NEVER ceases to amaze me as he is always happy, always smiling and always friendly to everyone he meets. He is DEFINITELY my Hero! Onwards and upwards we go. Together, day by day my Warrior continues to prove that he is exactly that! I am NEVER EVER giving up on him. EVER!

3 Comments

  1. Marge says:

    Although the schedule is hectic, I know that WM and WK will succeed. You’re a good team and I know the results
    will begin to show down the line.
    Keep up the good work WM and you will be rewarded by all the success WK will have because of you.

  2. Jennifer says:

    I love you both. Stay strong sister. He needs you, and has done SO well despite – because of you. xoxo

  3. Astronaut says:

    God knew what he was doing when He gave you WK. I am not OCD enough to keep that schedule. Peace to you.

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