Monthly Archives: April 2014

what a strange but a productive day…

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It started this morning by Danny walking into the kitchen, opening the lemonade, and pouring it down the sink….

(sometimes I really would love to step into his mind to find out the motivation behind that)

He and I chatted this morning….that we had no more lemonade and I was not going to the store today…that he didn’t get lemonade all day because he wasted an entire bottle by pouring it down the sink.

He has also spent the day dumping the dogs’ water dish all over the floor too…no idea what that is about either…but at least that particular section of floor is squeaky clean.

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When Jillian arrived, I popped down to the high school to meet the teacher in charge of the program that Danny would be a part of, should he feel strong enough to attend school. Interestingly, she has a son that Kate has attended school withal her life (they both were a part of the ginormous group that went to homecoming together…such a small world out here).

She and I have made some plans to get Danny comfortable with the school and her so that if he has a good summer…he is in a good comfortable place to be successful attending school in the fall for as long as he is able.

It makes for a busy month on Marrs, but it is better in the long run, should Danny’s health cooperate.

And then, I popped into visit the vice principle in charge of the cheer program.

The head varsity coach that was hired quit yesterday after only a month…so there is an opening at Chatfield for a head cheer coach…if anyone is interested….again

;-/

But tryouts are continuing…so I offered my help.

Not to coach or even be a part of tryouts…that’s so not appropriate…

But I have taken over ordering the signs that go in the yard of the girls once they make a squad.

That took a bit of discussion for the folks involved to come up with numbers and give me the go ahead to run with it. But now all decisions are made and we have moved on to other things.

The signs were a new tradition last year, but one the girls really enjoyed, so I was thrilled to help out. And luckily, right now, I have a small window of time open.

Jack is quick off to baseball practice, Kate is at tryouts.

Its just Danny and I hanging out.

And I am watching the dogs’ water dish like a hawk to keep him out of it.

🙂

The things I do for the middle Marrtian….

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“Come on Dan, it’s time to get the girls. Grab what you need. It time to hop in the car please….”

I coax Danny a bit ago.

Dans been awake since 2:00am, and he’s really been a trooper today.

But he much prefers the Jeep to the Acura. And who can blame him, the Jeep is fun….especially with the roof off.

😉

But the Spring is taking a quick holiday from Marrs and the weather is looking like this…

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Danny was persistent….

(Like he is famous for especially when he’s been awake for most of the night)

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So we hopped in the Jeep and cranked the heater.

The thing I didn’t count on was the light snow that started falling on our heads once I pulled out of the garage.

I’m giggling to Danny telling how much I most love him to have snow falling on my head like this…

He gives me this sly smile and signs “snow” and “love you”.

Stinker.

😉

Tomorrow is our last Phindy day….

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😦

Phindy has hung out on Marrs for the past three or four years….honestly the amount of time doesn’t matter as she is now forever in our hearts.

I met Phindy because of a quick email from my dear friend Leslie looking to help out an amazing young woman to find employment.

Which just goes to prove that loving Danny doesn’t require a specific education in behavioral intervention.

I can’t tell you how much we have grown to love this woman as we love all ladies that become grown ups while hanging with us on Marrs

I am going to miss her.

Phindy is amazingly strong. She left home (South Africa) at 17 to work as an au pair for families in the US and stayed to get her education.

I hope she stays in our lives…even though it be more through Facebook rather than everyday like it is now…

But it’s time for Phindy to begin the next chapter of her life.

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(It is always hard to say good bye…but we love you. And will miss you. But we will be ok as you move forward with your life…as much as we want to stop time…it continues to march forward and it’s time for you to take he next step with your life…

We love you honey. )

It is the most amazing part of having a son like d. I end up with unique relationships (and am so honored to meet) with people I would never know otherwise.

“We keep up with you guys by reading your mom’s blog…”

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Kate replies-

That’s how I know what’s going on here too…

Today should be a blissfully mundane typical everyday day.

Mulligan bounced back to normal yesterday, complete with no meds, eating regular food, and putting that puppy that had been so worried about him back in her place.

Kate and Jack are off to school this morning. Leaving Danny and I hanging out and running errands this morning before Jillian gets here.

I’m off for a run when she arrives if the wind isn’t too bad.

Then quick run carpool for the girls…and since tryouts for cheer begin today…back to the high school this afternoon. Feel free to wish her luck on Facebook…she would get a kick out of it. 😉

Kate should be arriving home as Jack and Hugh take off for baseball practice.

I’m still trying to figure out how I make it to book club…but honestly I don’t think that even I can pull that off.

I love blissfully mundane typical everyday days. They are so much better than the medical ones.

😉

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We were this close to the house in Costa Rico….

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Eh, maybe next time.

We were privileged to be the guests of very dear friends to share their table at the Outdoor Lab Foundations fundraising gala this evening.

We managed to scrounge up cocktail attire…,

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Although we missed out on sharing the house in Costa Rico with Mike and Shannon and all our kids….we were good invitees and donated to the cause.

Honestly, a week without electronics was totally worth the donation we made.

😉

The foundation is a super cool charity. It supports and offers scholarships to help kids attend a week long environmental education program for sixth graders in jeffco. They sleep over for five days and do hands on environmental learning about the Rocky mountains. .

And the program has been around forever. Hugh, Kate, and Jack all attended outdoor lab.

Hopefully it’s around for many more years.

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Cocktail attire….

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Hmm.

Even in Colorado, when cocktail attire is mentioned…one probably should not show up in ones favorite pair of comfy jeans.

Nope.

Cocktail attire means digging through my closet.

Pushing past all my old navy tshirts and thrift store capris until I find something suitable.

But in a past life, I worked for a while as an events coordinator.

You know what I own?

Cocktail attire.

And since that weight loss of a few years ago…everything fits.

😉

“Mom, that dress doesn’t look ten years old….”

(Apparently I have a style that I have adhered to no matter what is currently in fashion…)

“You look good mom”

(Which for Jack is as close to gushing as he ever gets.)

We don’t clean up bad.

🙂

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Mom, is it serious serious…or is it like the flu???

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Jack asks yesterday

And still continues to ask today.

And yes, Mulligan is our dog. He’s three and strong and healthy…who also had a funky reaction to a very common med.

But you have to understand the backstory about our worry.

Mulligan’s predecessor was an amazing black lab named Shadow. We rescued her as a service dog drop out.

She was great. Gentle. Absolutely loved us. She was amazing with her Danny….

But she was never really healthy and we had to put her down after just a year of living in our home.

She had terrible tummy issues that ended up being cancer.

So poor Jack.

After watching us struggle to save Shadow, he did not trust to love Mulligan until Dr Christine gave Mulligan a clean bill of health when we first brought him home.

She did and Mulligan is an amazingly healthy lab who chewed us out of house and home.

🙂

Right now, our Mulligan has some GI issues from that med affecting his liver.

So we have all been on edge.

Watching.

Waiting.

Just to see.

And, like Katie said….it was serious….but now it’s more like the flu.

Thank goodness!!!

I don’t think any of our Marrtian hearts could replay what we went through with Shadow.

Luckily…it looks like we dodged that.

Sigh.

(Buffett is the brown mutt who lived an amazing dog life on Marrs. Shadow is the black lab that spent the last year of her hard short dogie life living with a family that loved her for the first time ever)

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(Our amazingly strong gentle giant sweet boy who is a good dog Mulligan)

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The story of when I first heard the words mitochondrial disease….

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I have a stats section on wordpress that tells me in addition to how you landed on Marrs, what you were reading.

Someone popped in on this post last night that was published in the Fall of 2011.

A bunch of you weren’t a part of our lives then, and if you haven’t heard the story yet….you should read.

Not much has changed with d medically. Eight years later we still have not identified the primary cause of Danny’s mitochondrial dysfunction. But even not knowing the why it is happening, treating it anyway is totally helping.

Enjoy…

The first time I heard the words Mitochondrial Disease.

Danny had these funny regressions.

Regression is thrown around a lot in the autism world, to get more therapy, you have to show a skill loss. That’s not what I am talking about here. Danny would literally be able to do a skill one day and then the next have it be gone. It looked like non compliance to us in the beginning, but after a while we would realize that the skill was just gone.

Ok, so how do you prove it to the outside world? In the land of “mom reports”, not much I say is taken seriously. I think it was 2003 and we were enrolled in a study for PROMPT (if have no idea what the acronym means, but it was studying the effectiveness of a speech therapy intervention). Once a week, for forty-five minutes for twelve weeks, the kids and I would pack up and drive downtown to be videotaped during therapy. Not only did Danny not make progress, he we had evidence of regression on twelve weeks of video tape overseen by someone with a PhD who wasn’t employed by our family. We had golden documentation. It also helped that the ladies in my house at the time, were also research assistants to this particular study and could verify that Danny was still getting 30+ hours a week of quality intervention.

We had an amazing team of docs in town, but they hadn’t come across this before. Even the metabolic docs at Children’s Hospital were stumped.

So, out we went to California to UC Irvine. There was a group of folks studying a link between metabolic disorders and autism. We went there a few times. We ran a bunch of tests (blood, urine, and multiple eegs looking for seizures that could explain what was happening) and while they thought there was something going on medically, because clearly he had things going on, all the tests were inconclusive.

Danny kept having regressions.

Ok, so we are back from California with no answers. Docs here are stumped.

Fast forward a year.

Danny is five. He took me to the fridge and asked me for a popsicle, except, he couldn’t form the words or sounds he could make the day before. The look my baby gave me… I immediately sat down, the both of us hugged and cried leaning against the fridge.

Ok buddy, we are going to figure this out!

We have a list serve called Parent to Parent out here (well, there is one in every state) One of the things they do is match you with other families who also have similar journeys. We tried to find a match in state and were unsuccessful. So I wrote up Danny with all of his strengths and challenges and regressions with what we had already ruled out and asked our local coordinator to post it nationally for us since we were hoping for someone who fit and had medical answers for their family to point us in a direction for our docs to go.

I’m not going to lie to you, I got some very off the wall responses. But, buried in the craziness was an email from a mom in upstate New York which showed promise. We exchanged emails for a few days and then we talked on the phone for about twenty minutes. She directed me to the United Mitochondrial Disease Website and my epiphany. Holy crap… right there in black and white is Danny.

She also directed me to Dr N in Cleveland. At the time to make an appointment, you needed to write a synopsis of the medical then fax it over. It would be stuck under the doc’s nose and if they thought they could help, then you were given an appointment. So, expanding on the email I sent looking for a parent, I sat down, wrote him up faxed it over, and ran down to the Danny’s pediatrician’s office armed with printouts. As Dr Pam and I were talking, my cell phone rings, Dr N will see your son, the first available appointment is in nine months.

Book it…

Fast forward nine months later.

Danny is still five. We have finally landed on a placement for him for elementary school after mediation. He was adjusting to Shaffer, and his regressions were right on top of one another. We were getting almost no down time to regain skill.

So, Dan and I hop a plane to Cleveland. Armed with binders of data (in case I have to “prove” regressions), medical evaluations, lab results, MRI’s, ect and everything Danny needs to make a successful flight, no wonder the airline folks took pity on us. But we made it.

At our appointment, Dr N spent the first couple of minutes reading labs and evals. He put it down and started examining him. After an hour, I couldn’t stand it anymore and I asked him if he could help. In a very matter of fact manner, he told me that we were most likely looking at Complex 1 mitochondrial disease.

Ok then.

How do we test?

We talked about labs and muscle biopsy and if I really needed it. You know what, we did. Many, many docs kept telling me that my son had Autism and kids with Autism regress, quit looking for a magic bullet.

So, right after his sixth birthday we flew out for a muscle biopsy.

Another trip out a couple of weeks later, Danny had mito.

This is going to sound crazy, but I was relieved. What was going on his little body did exist and had a name. Well, sort of. There are 40 named mitochondrial diseases. They think there are as many as 200, Danny happens to have one of the other 160.

So, we wait for science to name it and come up with a cure.

But it exists. We are not crazy, we did see the skill loss. And when we actually started treating the underlying medical condition, he got better.

Ok, not typical, but stronger and happier…better!

Mulligan did not have a good doggie day today….

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Mr a Mulligan has had a tough week.

Poor thing hurt himself when we went to cabin.

Our dear Dr Christine treated the big guy with very conservative anti inflammatories. It’s a drug that’s been around forever and only a small percentage of dogs have a reaction.

But, if we’ve learned anything here on Marrs, we’ve learned that if there is a small reaction to be had….we almost always manage to find it.

Very rarely this particular med will hit a liver funny.

So, after Christine came by first thing this morning….and a simple lab test later….mulligan spent the day in the doggie hospital.

Poor bogey was all out of sorts today.

So was d.

And so was mulligan.

I opted to pick him up so he could spend the night at home before he goes back again tomorrow for another round of IV fluids.

He was so happy to see me and blow that Popsicle stand.

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He’s finally dropped after a small dinner of super yummy chicken and rice.

Poor baby and his cone of shame.

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