Thursday, April 7, 2011



Max's monthly supply delivery. Boxes, and boxes, and boxes of feeding supplies, syringes, gloves, and diapers!

Each first week of the month, this is dumped at our front door. It sits in the entry-way, and kicked around by me until Steve puts it away.

He has a system. I don't. It is just in my way, and I push it aside until it's out of sight.

It's been a busy week around here. We had some excitement yesterday, when our local NBC news station came out for an interview with us and Max. They are putting a story together about how he uses skype to interact with his classmates every day. It took the morning, and Max was super tired afterward!

In all the excitement, I forgot to get any photos. I did get this one, and if you look really closely, you can see the cameraman behind the student on the screen.


They went to the school to interview Max's teacher after they interviewed me and got video of Max visiting with his friends. They all did such a great job. I have to warn my mom though...there are snakes involved...yellow snakes with black stripes. It's what his friend wanted to talk about! Once the story airs, I hope to have a video to share.

After they got all the footage they needed, Max had his regular school with his teacher that comes to the house. He was a ROCKSTAR! He's learning shapes, and let us know his favorite is the rhombus. (They don't call it a diamond in school.) He got all his colors right, wrote a book report with his computer, and planted basil.

It was indeed a very busy day. And once his teacher left, this is how he sat...


...for three hours straight.

When he's sleeping that hard in the middle of the day, we know from experience to not wake him up, as it can trigger a seizure. So, I knew it was going to be a long night with his long afternoon nap.

He finally woke up and was pretty snuggly the rest of the evening.


But, we don't mind that. And, he actually slept fairly well last night.

Today, we got Max's trust opened and ready for donations. I'm really excited to get fundraisers set up so we can get the lift put in the van and I can get out with him by myself. With insurance and medicaid covering less and less these days, I can see a lot of uses for funds raised for his Special Needs Trust. It's money used only for him, for things insurance and medicaid won't pay for.

We then went to choose his new glasses. We got there prepared to get him yellow...except the only yellow choice they had would have looked lovely on a little girl, not a rough and tumble boy. So, he allowed us to get the blue, with a yellow strap, and a promise of yellow shoes. They're really cute, and we should have them in about 10 days.

We ended the day by planting his classroom cabbage in his yellow pot. All the kids in his class got a cabbage to plant. He's got quite a garden going now. The basil, corn, cucumbers, sunflowers, and beans. The cabbage is supposed to get will be pretty too!



Danetta said...

Consider your Momma fairly warned, and thank you.
He has had a big week! I can't wait to see the segment on the news! His school, teachers and the kids all have a special place in my heart. I hope this will lead other families to great things like it has for Max's.
His garden is sounding great!
Let the fundraising begin! I saw a ramp in a Big Big the other day and thought of how much easier it will make transporting him for you.

Shachi said...

YAY! Delighted to hear about the progress.

And do send the details of the trust...I would like to contribute.

Deana said...

Thanks Shachi...I will let you know when I figure it out! I think we will try to put a pay-pal button on this page so it's easy to contribute.

Steve is there today...wish we could stow away in his carry-on to come visit you and Vijay!

Unknown said...

Big news all around. I can't wait to see him on the news! A lift in the van sounds like a great idea, your poor back will finally get a break. Great news on the trust!

Junior said...

Max you are a star, can't wait to see the video. Sounds like you are doing awesome. Junior has been quite sick so I am very behind on checking in with our blogger buddies.