Friday, February 27, 2015

Rare Disease Day 2015

The last day of February is always Rare Disease Day. It's a day to show support with those who live in the rare gene community. And to raise awareness in the medical community to offer more treatments for those who live each day with rare diseases.

 Max's list of rare diseases is long. He was the first diagnosed of 14 boys in the world with the rare disease Cobalamin X. He has rare epilepsy, Lennox-Gastaut preceded by Infantile Spasms. He had Chilaiditi's Syndrome that caused all of his intestinal problems. It is rare on it's own, but extremely rare in children.

 Yes, Max is rare, but like so many other with rare diseases, he's taught the medical community so much about how genetics work.

 If you are looking for ways you can participate in Rare Disease Day, you can first wear jeans for Max. Take a picture and post it on his facebook page. He'll get a kick of everyone wearing jeans to show they care.


You can click on this link to have a $1.00 donation given towards more research on rare diseases.  http://rarediseaseday.us/raise-your-hand/

"By raising your hand, you have just shown your support for the 30 million Americans who are affected by rare diseases. Thanks to you, Lundbeck has made a $1.00 donation to support rare disease research (up to a maximum donation of $10,000 for the campaign). The money raised will be contributed to a general research fund managed by the National Organization for Rare Disorders (NORD)."

Thank you!

Wednesday, January 28, 2015

Conversations with Max...

Max's teacher has taken the cue from Max about his fascination with Martin Luther King, and is now teaching him about the Civil Rights Movement of the 50's and 60's.

She has a couple of ways of engaging him in this unit, but has been asking him his feelings about the civil Rights Movement.  So far his words are GOOD about MLK's story, and about laws changing because of him and the others who fought for equal rights.  He feels UNCOMFORTABLE about the bus boycott, and that African Americans weren't allowed to ride anywhere they wanted on the bus, and that they were arrested for driving their own taxis.  He feels BAD that officers were not nice to the African Americans.

This last one is a theme we've had to really do a lot of talking about.  You all know that to Max, police officers are the bee's knees.  He loves officers.  And it's really been making him sad to hear the things officers did during the Civil Rights Movement.

Last week when Max was asked what he thought about Martin Luther King's work, he said a lot of things.  He said he was young, and he did work.  He said he had an idea, and he was able.  Then he stitched a sentence together that left me speechless.  Officer beat them and my people.


(Max's talker auto-predicts a lot of words, but he put his sentence together about the officer.)

I told him that it was a difficult, sad time for our country when Martin Luther King was fighting for everyone's rights.  I told him everyone was not bad, and there were good people, black and white who helped fight for the rights of all people.  His people (the disability community - in this instance, he calls them his people) and people of different races.  He told me it makes him feel uncomfortable and good.  I agreed and said those were two very good words to describe that part of our history.  

I really thought I had explained it the best I could, until this week when his teacher asked him again what were some more feelings about the Civil Rights Movement.  He is going to assign colors to his feelings for a project at the end of this unit, and he needs 3 more feelings, besides UNCOMFORTABLE and GOOD.  Instead of a "feeling" word, he got into this description words.  He said AWESOME, which I thought was a good word for him to use.  But, he wasn't finished with his sentence.  He said AWESOME PRESENCE OFFICER.  


I asked him if he was still upset about the stories of the officers who arrested the African Americans, and Martin Luther King and he said yes.  I tried again to explained to him that even though the officers were doing their job, arresting people who were breaking the law, they were bad laws.  And Martin Luther King, and Rosa Parks and all the other people, black and white in the Civil Rights Movement were trying to get those bad laws changed.  They tried to do that through non-violent protests (one of his vocabulary words), and that meant sometimes they broke the law.  And because they broke the law they were arrested.  And there were some officers in that time who were violent, and that was not good of them.   We tried to offer some examples of how officers helped in the Civil Rights Movement, and I came up empty.  Talk about deflated.  

His teacher said, Max this was in the South of the United States, and not all of the country had the same issues. And that we would look for some examples of officers who helped the Civil Rights Movement.  She asked Max what he felt about how the officers acted towards Martin Luther King, and he said BAD.  

I told him it makes me feel bad too, but it was good of Martin Luther King and others who worked so hard to get laws changed so everyone is equal, and everyone had rights.  He accepted that for now, and quickly moved on to telling me and his teacher he wanted some music.  

He was in luck, since part of learning about that time in our history also means jazz.  His teacher is teaching him about the different jazz artists of the time, like Count Basie and Duke Ellington. In music today, he worked on his own jazz music, and told his teacher he also was a jazz artist.  
Max said he wanted to be a jazz artist and play in arenas in the Eastern United States.  
They read a book today about Duke Ellington and he said he liked it.  It was interesting.  




When he was listening to the songs by Duke Ellington, he was singing along and got into his words and said BABY!!!  He was definitely into the music. 


It's after school times like today that I am in such awe of Max.  I don't like to admit it, but there have been thoughts in my head when he was a baby that I would never have any sort of intellectual conversation with him.  But, when days like today happen, I'm so struck because he's so stinking smart. And he has such a tender heart.  And how grateful I am that I was wrong about his abilities.  

Tuesday, January 27, 2015

A proper blog...

Have you noticed this space has really turned into a photo dump?  I blame Facebook.  With Max's Facebook page, I can quickly post about the ins and outs of his day.  And then I stitch them all together here for a blog post about once a week.

I don't know if that's a good or a bad thing. I just notice it's different.  I think for the most part, because Max has been doing so well, I don't have as many thoughts to spew here. Sure, I still have worries for him...plenty.  But, lately, they seem so trivial.  Like we have had two nurses give their notice and move on to other positions.  This will mean some shuffling and replacements to be trained, but I know it will happen eventually, and it doesn't really seem new-worthy for his blog.

He's not regularly visiting with his classmates this year.  Instead of getting all riled up about it, I'm taking it in stride...next year he's unlikely to be visiting over the internet with classes, because they will be in middle school.  His core group of friends are still around and we see them when they feel well, and the weather is nice to get out.

We're trying to plan a visit to the NIH for the study for his metabolic disease.  I had one week sorted and then Steve got pulled into a meeting that week he can't get out of.  We will reschedule, and truly, when am I going to learn as soon as I make plans for travel, something will change?

A couple of Max's doctors have changed at the front of the year.  And while there was a lot more off the computer to get all of that sorted, we were reminded again and again that even when his doctors move on to other positions, or we move him off the care of one and on to another, he still has the BEST doctors in the world on his team.

We were very busy through the holidays with our Santa's Little Hackers event, and are already working out when the next events for 2015 will be.  Nothing like planning 11 months ahead to make you feel like the year is already flying by!!  We are so excited to provide more toys for disabled kids and adults next year.  We're learning a lot about having our won non-profit, but it's all good stuff.

Max is STILL getting over the flu.  He has a little annoying cough that hits him at night usually. We all can be heard saying "COUGH BIG!"...instead he likes the gurgle that happens and will play with it.   It's been a month since he had the flu and has finally gotten his energy back.  Although yesterday he thought he needed to sleep until 2:00pm!  Thankfully he has his g-tube and was able to eat and get medicine while he slept the day away.  We've been having unseasonably warm weather this week so we got him out for a walk in the sunshine to wake him up.  And he slept all night last night!

Max is still getting therapy every day of the week.  Some days he has therapy and school, but I try to pace the days so he doesn't get too worn out.  And on the weekends we try to get him out of the house when the weather is nice.

I'm taking a little break while Max's cleaner is here. Yes HE has his own cleaner who makes sure his room and space is dust and germ free, paid for by the Medicaid waiver he's on.  I usually take this time to run around and clean up my messes, because I don't know how to sit and relax while someone is cleaning my house.  But today, I thought I could try and knock out a blog post.  Looking back, I can see I've lost some of my writing mojo...but it is what it is.  I will try to update more here, even when it seems boring to me.

And, because no blog is complete without pictures of the dude...

Max smirking at his classmates reading him a book on the Loch Ness Monster. 

Max being involved in voting and decision making for Young Ameritown with his fellow 5th graders.  Max is an officer in the town, of course!

And a walk along the river while daddy popped into REI for a bit.  Max much preferred the walk outside to the busy store.