Wednesday, August 21, 2019

10th Grade

This old blog just isn't what it used to be.  I used to update often about all of Max's news, but last year he didn't want to be online.  And that's is, after-all, his life story.  But, I am going to sneak in here and give an update on first day of school and if he'll let me, I might be able to update more.  He's doing really well, and we're really just in a routine of living life with our now TENTH GRADER!!!

A reminder of grades 1-9.

 And now, Grade 10.  He's such a funny guy, and so sharp. He wanted to wear his dad's t-shirt for his first day of school.  And wanted to write his sign on blue paper and red marker. 

He wants to know if his new teacher can get his friends at school say "hello", and wants to know what her favorite holiday is.  He also wants to know if she drives a fast car!

His biggest interests right now are listening to The Beatles, and fastest fast cars. It's been a terribly hot summer, but he's enjoying going on evening strolls when it's cooler. 

He's hoping for a great school-year and of course we want that for him too. Here he goes...Sophomore Max.

Monday, December 24, 2018

Skin update...

It has been almost a year since Max was diagnosed with acne fulminans.  Last Christmas he was so miserably sick - but we didn't know what was making him so sick.  At the beginning of January this year we learned it was another rare disease called acne fulminans.  It's an auto-inflammatory disease which causes systemic acne.  This means his whole body was fighting against the large painful cysts forming all over the outside of his body because of the inflammation that was happening inside his body.

You can read about the initial diagnosis here:

Since January we have been trying to find the right treatment for Max.  He was started on high doses of prednisone, which immediately started to help the inflammation and made the daily high fevers go away.  We started into the process of getting the known treatment on board for him - isotretinoin - but hit a roadblock when we realized the only form this medicine comes in is by gelatin capsule. Max is extremely allergic to gelatin.  This realization kicked off a lot of other doctor visits, with more tests to see if there was any way at all we could administer the medicine and not cause anaphylaxis in Max.

It's taken nearly all year, but in November we finally were able to do a drug trial to see if he would be able to take the medicine without reaction.

We had to do the trial in the hospital, with crash cart and intubation kit ready.  It was possibly the most uneventful hospital/doctor visit he's ever had.  The head of allergy has been Max's allergist since he was a baby, and was the one who wanted to administer the medicine.  They had a few nurses on hand to help if needed.  And Max was the only patient in clinic that day.

We gave the first dose of isotretinoin per the instructions of St. Jude's hospital for administering through g-tube.  Then waited for 3 hours to see if he would have a reaction.  He was happy to hang out and watch videos with Daddy, and then we came home with a new treatment option. 


We haven't seen many side effects from the medicine, other than it makes him sleepy so we give it at night.  And it makes him itchy.  He told his doctor his skin, "feel better but ich".  We are using a lot of lotion and vaseline for his lips so they don't crack. 

All in all, it's working.

The picture on the left is the day we started.  On the right is at one month of treatment.  He had an appointment with the Dermatologist last week and she was really pleased with the progress.  We've increased the dose and we'll see how his skin is doing in a month. 

He has to be seen by his doctor every month as long as he's on the istretinoin because it's a part of the ipledge program. He has to be seen in person monthly before they can write the prescription for the next month. We're going slow with it because it can actually cause his skin to have an overreaction. 

At the appointment the diagnosis has now changed from Acne Fulminans to Acne Conglobata, since he no longer is showing signs of systemic fevers and joint swelling.  We are still trying to get him off of the Prednisone that was keeping it all in check while we were waiting to trial the isotretinoin.  We will be weaning that down for months still so his body can recover from not having the natural adrenal function for so long. 

It's been a long, trying time getting from diagnosis to treatment but hopefully we will only continue to see him feeling better as time goes on.

Wednesday, December 19, 2018

Max's voice, Part II...

Max has been getting to know his newest speech therapist, Kyle.  He had some anxiety leading up to their first visit. He is so close to Robby and Brittany before him, that I have been a bit anxious myself about how he was going to do with someone new.  But in true Max fashion, he's taking it all in stride and making sure we all go at his pace.

Today, Kyle asked Max if he would answer a couple of questions he had about the rights of people who use talkers like he does.  He's picked up on Max's interest in social justice issues and wanted to make it even more personal to him. Max answered, yes, he would tell him what he thinks.

Kyle told him about a mom who said in her child's IEP meeting that her child should have someone with them all the time who can help translate or navigate their talker.  Just like a child who uses sign language or needs a translator, students who use communication devices should have someone who understands their way of communicating too. Then he asked Max what he thought about that, should they have someone with them to help?

(He was singing the praises of opera before he started answering questions, which explains the front of his text.)

His answer was, "yes because not every one know talker mine voice."

Kyle agreed with Max and said he thought the mom who asked this question would agree too.  Max said, and I swear I didn't prompt him..."Mother always right."

I think I'll frame it and hang it up. 

Kyle then asked him what he thinks about the idea of limiting the amount of words in someone's talker, or taking their talker away if they are talking too much during class. He said, is that a good idea? 

Max got fired up and started clicking as fast as he could to answer.

Nope, mine voice can not make gone away.
He said, I have a question. Can I ask you something? How world does not know we are able to talk? Just different from the way their used to."

"Mine voice important thing to use. People will know what I have to say. Able to change the world.  I fix it will try."

Kyle told him he agreed, and that people like himself and Robby and Brittany and Brandi-Lynn are all trying to educate everyone that the people they work with have so much to say, we just have to learn their language.  And by Max using his talker to share his voice he is fixing it.  Max was pleased with that answer and gave Kyle a big smile.

He then said,  "Brandi-Lynn help mine life.  She know I could talk. She give me that. Important for her to know that.  People in her mind able to do it all."

Brandi-Lynn was the first speech therapist who worked with Max to communicate.  In those early days she designed the language on Max's talker that is so unique to him.  She gave him a voice and a way to express it.  As her clinic, Inspiring Talkers, grew Max has learned from six other therapists...but he remembers who believed in him first and he wanted her to know he remembers. It left me speechless and in tears.  

It was about 7 years ago that he started on this "language", and he's come so far.  I'm so grateful he has such an incredible team of therapists who have worked with him through the years who have believed in his ability to communicate, and nurtured his voice into what it is today.