Tuesday, August 25, 2015

Sleep study / neuro update

In early August Will had a sleep study done. It seems like we do these as needed so with the brain bug and other minor concerns on his sleep we wanted to see where we're at.

Historically Will has difficulties sleeping through the night, partially our fault for letting him sleep in our bed, but he also sweats (I mean like he is drenched), talks and moves a lot. Some anecdotal research that using oxygen at night helps mito kids recover and function better the following day. Here is the back story on Will using O2 at night... 

It's kind of a chicken and egg thing with the O2 for Will. His sleep is pretty bad with - frequent waking and being scared - while wearing the nasal cannula and pulse ox sensor. So we can't really tell if it ever helps. 

Getting all hooked up for the sleep study. Thankfully, American Ninja Warrior was on TV that night, so it provided a good distraction. 

All those wires are attached to electrodes on his head.

Not happy, but perhaps too tired to do anything about it. All night long he liked sleeping with his hand on top of my head, occasionally pulling very hard on  playing with my hair. 

Fast forward a week or so, I got a call with the results from this recent sleep study. She said "abnormal EEG" and then kept on talking. I said, wait, please go back... Abnormal EEG?? This is the first time this has happened. FYI, an EEG is what measures your brain activity and determines if you're having seizures or other abnormal brain activity.

In order to get all the results, you schedule an appointment. So I did. Then after spending a few hours researching and panicking inside my head, I emailed the neurologist for some realistic input. 

(Side bar, a pulmnaologist has to order and interpret the sleep study - so you have to go to an appointment to get the results from the study. But she can't really do anything about an abnormal EEG because neurology isn't her specialty so you have to then get an appointment with neurology to figure out next steps.) 

Thankfully, our neurologist is logical and because of the way the UT Mito clinic is set up, she can access all the results and was able to do some of this via email without making an appointment! It's the little things that really make my day. 

So... the neurologist emailed me back and said: 

It demonstrated some concerns for ‘epileptic activity’.  This is DIFFERENT from saying there were seizures. This just means that there was a ‘potential’ for seizures.  To be absolutely clear:  there were NO seizures seen on the EEG. 
HOWEVER, I would not be terribly surprised to see ‘epileptic activity’ in Will as he has Leigh syndrome and this is a common finding in Leigh syndrome.  Even with the ‘epileptic activity’, true seizures are not common in Leigh syndrome.
She then went on to recommend doing a 23 hour video EEG. This means we'll arrive at the luxurious hospital accommodations for an overnight "23 hour" stay where Will is going to have to wear a whole head, full of electrodes. 
Suffice to say, Neil and I were relieved to know that there were no seizures at this time. The 23 hour EEG is scheduled for the first weekend in October. Actually, Will's school is closed that Friday, so I figured that would be the easiest time to do it and it will give his body a chance to adjust to school so that we get the most accurate "normal Will" data.

The results appointment was last Friday. I really like the pulmanologist, Dr. Jon. She's calm and goes over everything. She said the abnormal EEG was primarily in the frontal lobe of the brain.

  1. The frontal lobe is one of the four major divisions of the cerebral cortex. This part of the brain regulates decision making, problem solving,control of purposeful behaviors, consciousness, and emotions. The primary motor cortex is part of the frontal lobe and is responsible for regulating voluntary movements.
Will isn't having any different problems with these types of functions so I guess in some aspect that makes us relieved too. 
Additionally, other previous sleep studies have shown an higher than normal sleeping heart rate as well as lower than preferred oxygen levels. Both of those items had somewhat stabilized; so to answer our chicken and egg problem with using oxygen at night... we're going to keep it in the house and use as needed. 
We had a quick discussion on the fact that it would be good for Will to get more comfortable with wearing a nasal cannula simply because it will help him in the long run. She also suggested trying the oxygen during the day when he seems winded or more tired than usual to see if it will help his body do less work to get back to baseline. All good points and things we'll work into his life. 
While we were at Dr. Jon's she went ahead and did a lung function test as well. Based on his peer group (age, weight, height) the goal number would be 80%. Will came in at 77%. So just below the goal, which isn't troubling to anyone. 
I guess to sum it up, some new, but not urgent, unknown stuff which will reveal itself in time. 

Friday, August 21, 2015

Drama Camp and the rest of Summer

Will also did a drama camp this summer at a local theater, HITS. They were amazing and so incredibly accommodating to anything Will needed.

This camp was 9 a.m. - 12 p.m. all done in the comfort of air conditioning during the last two weeks of July. The kids auditioned, then learned and performed two shows of "Into the Woods Jr. "

They also provide a CD for you to learn all the songs on at home. Let's just say we're still listening to that damn CD in the car and I can't get it out of my head. It was a pretty serious camp, not what I was expecting. They wanted the kids to be "off book" by certain dates. Meaning all lines memorized. Some of those kids were probably "off book" by the second day haha. 

Anyways, Will was cast as the "Mysterious Man" and ended up with the perfect role. The mysterious man pretty much lurks on stage the entire time, while sitting in a chair. He had quite a few lines and ended up being a pivotal role at the end. 

They helped Will do all the "dancing" but from his chair. Ms. Ann is so petite you can't even see her hiding behind his chair on stage. 

Ms. Ann (the assistant from his class) was able to be his aide at camp every day. She helped him navigate stairs and other obstacles and ensure he was safe. She too still has these songs stuck in her head, as well as all the lines she had to memorize to "feed" Will his lines during the performance. 

The plot was a weird mirror to our life... The baker and his wife are trying to have a baby and they can't, there is a wicked spell cast by a witch and in the end, the mysterious man dies. I read the script and it took all I had not to just cancel going to this camp because I had no intention of watching Will die during a play! But, I'm glad we stuck it out. Will really seemed to enjoy it and he was hilarious. 

And, thankfully, when Will died it at the end of the play, it ended up being a humorous part. 
(Will starts talking around :30 seconds and then has his "big scene" around 1:15)

Ms. Ann and Will's speech therapist, Ms. Heidi helped Will with memorizing his lines and speaking them as clearly and as loudly as he could. I really don't know how some of the kids did all that singing. It was super quick and a lot of complicated words at times. 

Ann told me that the camp teachers told the other kids they needed to talk as loud as Will is talking. I still am in awe that he just jumps up on stage and doesn't appear to be nervous or worried about doing any of it. 

He also was the opening line of the play! 

After one of the performances we did a little celebration back at the house. I think he was quite pleased with himself. 

The awesome Ms. Ann AKA the "mysterious woman" :-)

As for the rest of the summer.... We spent a lot of time inside, trying to avoid the "heat dome" that landed over Houston. 

Playing with construction tools

Teamwork - Quinn's favorite food is food pouches. Hey, don't judge :-) 

Some indoor play dates

Hair cut and a sonic trip

Quinn got pretty proficient at aggressively throwing putting items into the cart one weekend at multiple grocery stores, guess she was practicing at home too.

Spent a lot of time in basketball shorts and either shirtless, or muscle shirts. 

Final summer Menchies trip... in a muscle shirt of course.

Quinn helping Will with his back pack for back to school. 

Wednesday, August 19, 2015

Long Gone Lazy Days of Summer

The lazy days of summer were sucker punched this morning when my alarm went off. 

Will's first day of first grade is here. After about a five month summer, including the time off from the brain bug, I am feeling rather lonely and sad this morning. My constant companion (Will) and our sidekick (Quinn) are all at school today. 

I really hope this is a good year for Will. We are so lucky to have his old teacher and assistant move up to the next level with Will and are his teachers again this year. At The Parish School they don't really give you a grade level, but they name the classes. This year Will's class name is Superhero's - quite fitting if you ask me. 

It's just a HUGE relief not to have to explain Will and all that comes with it... we already have systems in place for everything! They even have been able to figure out some alternative activities for Will to do during the long after lunch recess. While recess is important, it just wastes a lot of energy that could and should be reserved for paying attention in class. It also seems like Will is a slower eater and needs some extra time to digest what he ate before it makes a real difference in his energy level. Having time to rest his body after lunch and recharge for the afternoon should help. 

It's a class of ALL boys! 10 to be exact. We had meet the teacher on Tuesday and he was less than excited. Clung on to my like we were super glued together. The class seems like a nice group of kids and families. 

Thankfully, this morning he was ready to go. Unbuckled his seat belt and tried to jump out of the car. Ms. Ann was in carpool this morning and got him into the wagon (previously named the Zebra Express for his old class, we'll see what sort of superhero theme is applied this year!)

He wanted Dad to do his hair this morning :-)

"Hey mom, let's do a crazy photo." Of course Quinn had to get in on that action! 

Patiently riding to school.