Wednesday, September 16, 2009

2009 Classroom Placement and Mini Laps Kick Off

Disclaimer: this will remain a sticky post at the top of the blog until Mini Laps

Last night was Aiden's school's parent meeting about classroom placement and Mini Laps.

Aiden is leaving his friends, and his girlfriend, and moving to the Yellow class with Miss Heather. We will really miss Miss Kate, Miss Amy, and Miss Lindsey.

And we found out important information regarding the school budget this year.

The school NEEDS money. Serious money. If you haven't looked into what it costs to run a special needs preschool, let me tell you, it costs a lot. Just the therapies/services that the kids get is $17,000 per kid, per year.

If you haven't heard about Aiden's school, I'm going to tell you all about it. So if you know about Aiden's school, either skip ahead or re-read to refresh your memories.

37 years ago, the Little Light House of Tulsa was founded by Marsha Mitchell and a friend who both had children with visual disabilities. At that time, the only school for disabled children in Oklahoma, was a state funded school for the blind in which the children went to live, away from their parents. There was no IDEA or No Child Left Behind. There was no special education program in the public sector. As word spread about the little school, more and more parents of special needs children began to bring their children to the school in hopes of a better education.

Through the years, the school has grown from serving 6 children in the beginning to now serving 64 children with developmental disabilites ranging from visual impairments to Down syndrome and Autism. There are currently 140 children on the waiting list.

The Little Light House is a private, Christian school with a Bible based cirriculum. Aiden learns the alphabet while learning children's Bible stories. This week, they learned about Abraham and Sara and how God blessed them.

Because the Little Light House is a private Christian school, there is no funding from the government or the United Way.

The school also doesn't charge the parents the cost of tuition.

I know you are sitting there scratching your head and wondering how does the school operate? Well, it is quite simple.

With your household, your income is pretty steady while the bills/expenses fluctuate month to month.

The Little Light House, however, is opposite. While their bills/expenses stay steady, their income fluctuates month to month. They control their expenses by the parents volunteering and by people in the community volunteering their time and areas of expertise.

The school has a policy of "check by request". What does that mean? It means that the school pays their bills/expenses first. Then they pay the staff with whatever money is left over. If they don't have enough money to pay the staff, then the staff members who NEED a paycheck, request one.

Here is the problem... the school is running out of money. There is only enough to last for 2 more pay periods. Think about this for a moment and let that sink in.

Where does the income come from?

Donations. Private donations, from people like you and me. And from business and foundations. By holding fundraisers throughout the year. Fundraisers like Links for Little Ones, Laps for Little Ones, The Garden Party and Mini Laps.

Every year, the Little Light House has been blessed with a matching grant from a foundation. However this year, they have lost that grant. Because the school doesn't charge tuition, many foundations are reluctant to give grants. However once the foundation board members hear how much money and volunteering the parents do, they tend to soften their hearts some. Not a whole lot though.

Mini Laps is the biggest fundraiser of the year. Every year, the families of those 64 very special kids, like Aiden, ask their friends and families and co-workers to sponsor their kids. This premier event allows each of the students to glory in the strengths that the Lord has provided. Each student participates by making one lap around the specially designed Little Light House track. They do this with the help of bikes, floats, wheelchairs, skates, canes, their own two legs or the legs of others! At the finish line there is a special award waiting just for them!

This is Aiden's third Mini Laps. The first year, Aiden was Toto from the Wizard of Oz and he was carried in a little picnic basket. Last year, Aiden dressed as Raggedy Andy and rode in his red wagon with his girlfriend Alyx, who was Raggedy Ann. This year is still a secret, but I will tell you that Aiden will proudly be showing off his heritage. But he WILL BE WALKING!

And this is where you come in.... Yes YOU!!!

I want, NO NEED! you to sponsor Aiden in this year's Mini Laps. I know that the economy sucks right now, but every little bit helps. $5, $10, $15, $25. Whatever you can afford to donate and sponsor Aiden. And I'll make this easy again this year. First you can make an online donation through the school's website, by clicking here (be sure to put Aiden Bowlin in the area "This gift is in honor of" spot!). And if you ask at work, they may have a corporate matching program where they match your donation.

Also, you can mail a check (with Aiden's name in the MEMO line) payable to The Little Light House.

The Little Light House
5120 East 36th Street
Tulsa, Oklahoma 74135
United States of America
Telephone: (918) 664-6746
Fax: (918) 664-2293

or you can mail the check to me and I will deliver it to the school (just email me for address)

Thursday, July 9, 2009

Nightmares

Aiden started having nightmares last night. He was asleep maybe two hours and then the crying and screaming began.

Chris was going to go back to work today. He has been off work since the day we found out about Aiden's surgery. Aiden slept in the big bed following his nightmares, sending Chris to sleep on the sofa.

There are pages of colouring books all over the living room floor. Aiden has decided it is much more fun to tear the pages out of the books than to keep the pages in the book and colour on them. At least he is tearing the full pages out and not corners or half pages. LOL

Last night was his first bath following surgery. He wasn't too happy about being in the bath chair. But his chest can't be submerged yet.

And now I need suggestions....

Aiden takes both a bottle and a sippy cup. At school, he only uses a sippy cup. However at home, Aiden HAS to have a bottle for his Pediasure. He will not accept a sippy cup with Pediasure. The sippy cups, according to Aiden, are for the sugary drinks ie Pepsi and sweet tea.

How do I get the Little Boy to drink his Pediasure in a sippy cup and get rid of the bottle?

Wednesday, July 8, 2009

6 Days Post Op

Aiden has been home two days now. He isn't crawling much, but he is starting to pull to stand up. His gunky cough sounds better. We can't give him anything because we WANT him to cough.

Pain management is Tylenol and Motrin alternated. And he seems to be tolerating those pretty well.

He is getting bored though, not being able to go around the house like he was before surgery. All of his favourite toys are in the living room now. But he does get bored with those. We are blowing a lot of bubbles and working on OT skills. I bought some colours and colouring books for him.

Monday, July 6, 2009

Nah, Nah, Nah, Nah. Nah, Nah, Nah, Nah. Hey, Hey, Hey. Good Bye.

PAROLLED!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Day 5 Post Op

Aiden was moved to the 3rd floor, Oncology - or the "clean floor" last night. The ride up the elevator hurt his chest, so he had some time getting settled in. Chris stayed the night with Aiden while I went home to get some sleep. This morning I brought Krispy Kremes up for breakfast, but Aiden didn't want any, because he is too sore to eat. Not to mention he really has to poop, but can't strain enough to actually do anything. The narcotics he was given following heart surgery has made the constipation worse and his poor stomach muscles are sore from the pacemaker. The nurse is going to get him some Miralax and a suppository to help him go potty.

He will not leave the pulse ox probe alone. He keeps taking it off. And he needs to cough because he is gunky, but it hurts to cough.

When we left the PICU, I gave the charge nurse a thank you card for the staff. Most parents don't think to do that. Usually, I don't either, but I haven't had to yell at any nurses this stay. LOL!!! And the care Aiden received this time around was really good.

I made Aiden's follow up appointment with Dr. Secondary Pediatric Cardiologist for next Monday. Dr, Pediatric Cardiologist is going on vacation.

Also, there is a little baby undergoing heart surgery this morning. I didn't see his mommy at all yesterday.

Sunday, July 5, 2009

Down Graded

Aiden was moved out of the "heart room" and into a regualr PICU room. He was really clingy yesterday and there was nothing to do but lay there as there is no television in the heart room.

This morning, the chest tube came out and we are being down graded again to the oncology floor, or clean floor. We should be home sometime tomorrow.

Saturday, July 4, 2009

Three Down, One to Go

All IVs are out, central line is coming out now. Tomorrow the chest tube.

Aiden is eating and had a sip of Pepsi earlier.

And we have snuggle cuddles.