Will health update Q4 2015

2015 was a medically challenging year for us. Probably the worst it's been so far. Two very long, emotionally overwhelming hospital stays along with some concerns about seizure activity. 

After the "brain bug" in April 2015, Will recovered slowly but steadily and by the end of summer he was back to himself. He had a sleep study done in August and it showed abnormal discharge from the frontal lobe. Not a seizure, but not normal. 

Sleep study - as if you can actually sleep with all that garbage on. 

So, we then had to do a 23 hour EEG. This is where you stay in the hospital for 23 hours hooked up with 20+ leads on your head and body and they video tape your entire stay. When we got bored we made funny faces at the camera, so I'm guessing 50 percent of the film had funny faces and the other 50 percent was us playing the Wii. 

You're not allowed to leave the room, but the weirdest part was that no one ever bothered us. Normally at the hospital it's nonstop people. I think we saw maybe 3 people total, excluding food service. 

All that same garbage from the sleep study is on his head, and more. They really wrap you up and then all the cords go into a backpack you wear (resting on the couch). He is basically tethered to a very long cord so he can move around and use the rest room. Cord management is clutch. 

Thankfully the EEG results showed NOTHING. Not even frontal lobe discharging. Apparently the sleep study results can occasionally offer bad information - that, or he wasn't having any discharges during the 23 hours we were there. Either way I have crossed this off my list of worries for right now.

In September Will ended up back in the hospital because of a reaction to amoxicillian. Quinn tested positive for strep throat. Will did as well, but he was symptom free, however, we started him on an antibiotic just in case. What really sucked about that hospital visit was Neil was on the other side of the world and for about 24 - 36 hours we thought he was heading towards liver failure. 

We are sick of this place... 

He ended the year slowly and steadily getting back to baseline. He was able to go back to school for half days and after the Christmas break he has stayed a few days till afternoon carpool! A huge win as he hasn't been able to make it till carpool since August. 

He is growing like a weed so a few weeks ago he was fitted for new leg braces. We should get those sometime in early February. He selected Power Rangers and Flash (one style for each brace). 

During the past few months we have noticed his feet have been proning in - he looks like he is walking on the inside of his feet or on his ankles. Small changes like that can be very difficult for him when he walks without his leg braces on. We noticed a few red spots and a callus forming on his feet so we had to make some adjustments to his leg braces and that seems to help. 

He used to enjoy coming home from school and being "boot free" all afternoon, but now he has been choosing to leave his boots on till bath. Even when we ask him if he'd like to take a break from them he chooses not to take them off. I'm guessing he feels more sturdy in them and more confident walking. It's heart breaking, but I'm really proud of him for realizing what his body needs. 

First pair of leg braces to the current pair. 

We are praying for a healthy 2016 for Will and Quinn. 

Speaking of, little miss Quinn will be getting ear tubes put in sometime in the next few months. She's had back to back ear infections. I would love to go just one month without a visit to any doctors or hospitals :-) 

Merry Christmas 2015

Christmas was really great this year. A good mix of fun stuff, low key activities and celebrating with family and friends. For whatever reason, this Christmas break really "felt good" - it just seemed like everyone was happy and healthy and we had a lot of good quality time just the four of us. So thankful for our time together.

Getting ready for Christmas the Texas way, in shorts of course.

The icicle men - Will and Neil love tossing on as much tinsel as possible. 

We decorated most of the tree while Quinn was napping. She woke up in shock and amazement which was so fun to see. She of course got right in on all the action and helped put on a few ornaments we saved for her. 

"Donuts with Dad" at The Parish School - at some breakfast together then made and flew paper airplanes on the porch and over the bridge outside.

Carson and Will (and me) on our way to the North Pole courtesy of United Airlines Fantasy Flight program. Will and Carson were both overwhelmed with all the sights to see, per the jaw open photo of Will. They got to meet Captain America which was pretty cool because Will's leg braces are Captain America right now. 

Annual hayride in the Heights to see all the Christmas lights. Will was so funny to watch. He didn't want to sit with me or Neil - and enjoyed being independent during the trip. Quinn at first was a little like "whoa" and then quickly got into the spirit. 

Gingerbread house making with Aunt Lisa

Visit with Santa - Will stood tall and proud and asked for a GPS necklace. Quinn stuck her tongue out most of the time and didn't make a huge fuss. 

Christmas presents!

The kids Christmas present from us.. an accessible play structure. Each platform has a bench for Will to stop and rest on and he can, for the most part, get up with no assistance. Going down is pretty steep, but there's the slide too :-) He loves his swing and we spent nearly every home day since Christmas playing outside. Major credit to Nick from Imagination Woodworks for helping create and keep this a secret for three weeks! We had black tarps hanging up over our backyard windows so the kids couldn't see it. A huge success!

And yes, Will did get a GPS necklace for Christmas. Thankfully he has the language to describe what that is... a blue lanyard, a blue whistle and a blue flashlight. Thank goodness for Amazon Prime.

A visit to Santa's Wonderland in College Station. Over a million lights and a mile of trail riding in a horse drawn carriage. Everyone had fun. 

Special "mommy, daddy, Will" night - we made S'mores in our backyard. Will hasn't stopped asking to do it again. 

So many other wonderful times during December... Quinn's holiday presentation at school, Will's class holiday party, special outings and times with friends and family. 

Happy Halloween & Thanksgiving

I have been on a blogging hiatus for no reason other than I've been busy enjoying our life! I have a terrible memory so I am catching myself up for one day when I want to go back and see what the heck the kids were for Halloween 2015 :-) Here goes a long, photo post...

Happy Halloween!

Our motley crew trick or treating. 

Quinn was Elmo and enjoyed her first ever Reeces Peanut Butter cup. She seemed to really get the hang of trick or treating pretty quickly and had a lot of fun. (age: almost 2)

Will decided on being an American Ninja Warrior. Complete with wristbands, an official shirt and hat and work out shorts. If he could be Lance Peekus the Cowboy Ninja Warrior life would be complete. haha

Happy Thanksgiving!

Playing on the swing set I had as a girl, but with update swings. 

\

Cousins turkey picture 

Yummy, mashed potatoes! 

A few pictures I love from October and November...

My heart just melts seeing this picture

Dress up at school

School pics

School pics

Mito Fighter / Ninja turtle

Will and his buddy "S" going to see a play together

Go Texans!

We took Will to the Texans game this weekend - his first NFL experience. Thank goodness for noise cancelling headphones. We came late and left early, but after a while he seemed to adjust to the noise and ended up taking his headphones off.

It was rather a rather spontaneous adventure. Neil was going through his stack of mail Sunday morning after having been out of town for nearly two weeks and the tickets were in the mail. At first we were not going to go, but everything just lined up nicely - overcast day so we didn't have to worry about the heat and bringing his cooling vest through security etc., seats were amazing and they were near guest services for checking his stroller and the bathrooms! We even found a sitter for Quinn so it could be just a special Will, mom and dad day.

The other element that was helpful is that we didn't have other people to meet there. I know that sounds so antisocial. We LOVE play dates and meeting up with friends, but sometimes it's stressful to plan ahead for Will. It's hard to commit to something in advance when it includes Will. It's not because we don't want to go, we REALLY want to go, it's just difficult because there are so many unknowns.

We often don't even tell Will about any big plans because we have had to cancel or reschedule because something happens with his health or he just wakes up really off. That, and he will repeadetly ask and perhaps even whine (!) about when it's time to go or wanting to hurry up and be there.

At times I feel like a total flake because I feel like I can't make plans, keep plans, show up on time, or be an active friend. I used to be punctual and a planner. I still am a huge planner, but now I'm planning for like 10 different scenarios in my head before I can solidify a plan.

I'm not sure how this post went from a Texans game with fun photos to a cathartic writing lesson for me on trying to be a good friend without being a huge flake.

At any rate, thanks to our friends who put up with our new normal - sometimes that includes flaking out, rescheduling, reworking, leaving early, coming late, not being able to have a conversation because I'm making sure Will stays safe or 100 other scenarios :-)

Little man's liver

Will's liver levels are back to normal!

He's still a little "off" but is making a nice recovery. When Will starts to lose his balance he compensates by taking steps backwards. This can result in some nasty falls, but thankfully he isn't falling as much and seems to be doing less stumbling around.

He's been going to school for about 2 hours every day this week. Next week, we'll try to do half days - so I'll pick him up after lunch. I really want to "ease" back into school so his stamina and endurance has a chance to catch up before cold and flu season.

Just a little PSA on cold and flu season... if you choose to get the flu shot and you are around Will or other immune compromised kiddos, please consider doing the flu SHOT and not the MIST. The mist is actually a LIVE strain of the flu, meaning it's communicable to those who may have a harder time fighting illnesses. Not looking for a debate on vaccines, just simply asking those who decide to do the flu shot and for those who are around Will to please consider doing a flu SHOT, not the mist.


A few pics from the hospital...

Playing the drums, one handed and with his left hand at that!

My incredible hulk dealing with an IV and other unpleasantness. 

A visit from Mike - Will was more animated during Mike's visit than he was the four miserable days we were in the hospital. 

Will made a friend, "G" was quite possibly one of the sweetest kiddos we've ever met. They shared a love of playing the Wii and being highly informed on all that is happening. There also was another new friend we met who also has mito. Will and "M" went to a puppet show together one evening.  

More than halfway there!

Liver malfunction

Two weeks ago (9/8) Will tested positive for strep and started on an antibiotic, amoxicillin. Later that week he seemed a little off, but had a pretty good weekend. Monday was not great and Tuesday he was obviously not right.

He wasn't showing strep symptoms, but rather (what I call) mito symptoms. When his body is trying really hard to fight something off or protect itself he starts physically falling apart. For example, his balance and coordination is way off and he also starts having some cognitive processing issues. 

There were just too many odd things. So, I called the neurologist and she said to head to the ER. Neil has been out of town since 9/11. So, I made arrangements for Quinn to go home to my parents house then Will and I packed up and got to the ER around 5 p.m. 

This was by far our worst experience at the ER yet. We got stuck in a room with two beds and a curtain divider... So we had many loud crying baby visitors. I will stop there. :-) 

Got hooked up on fluids and labs came back indicating a problem with the liver. No one could say why, how or when... 

It was obvious we were going to be admitted, but no one could tell me for sure, or even if there were beds available upstairs. We finally made it upstairs around 11:30 p.m. Will had not slept (see above crying babies). 

After getting through all the admitting stuff - endless medical questions, poking, prodding and vitals - we drifted off to sleep around 12:30 a.m. 

I will complain about one item - this night nurse was so incredibly not aware. I told her Will was going to use the rest room then we could do vitals. She runs out, we go to the bathroom and she comes back in with a bed pan. Didn't ask, just assumed for whatever reason Will couldn't walk to the toilet. I'm guessing it's his medical stroller. 

Then she starts asking me questions in such an inappropriate way. "Well, can he even walk? Does he talk?" This went on a few more questions and I finally stopped her and said something along the lines of, We talk about our son in a much brighter and more positive way. I would appreciate if you could rethink how you are asking your questions and find a more positive way to address any concerns or questions you have. 

I'm pretty confident she just thought I was crazy, but she did leave the room politely. 

The next few days we basically were dealing with understanding what was going on in the liver. The normal level for one particular liver enzyme, ALT, is 60. In the ER his level was 550. That's nearly 10 times the amount it should have been. It was finally revealed that his liver function enzymes were normal. The enzymes that are high show that the liver is inflamed and angry.

At first no one seemed to think that the amoxicillin would have done this, but that's what the final theory was... 

There were a lot of scenarios discussed as possibilities - the scariest one being that he was in early stage liver failure. As a side note, Will would never qualify for a transplant of any sort because of his diagnosis. However, for a liver if me, Neil or Quinn were a match we could attempt a live liver transplant. Hopefully if it ever comes to that my liver has had a chance to recover from college antics. :-) 

At any rate, GI was finally called in and they decided that the amoxicillin was acting as some sort of toxin in the liver. His liver function enzymes were normal. The enzymes that are high show that the liver is inflamed and angry. 

We did an ultrasound of the liver and it seemed okay and his labs kept going down. So we were released Friday around 6 p.m. 

Thanks to our family, I was able to find someone to hang out with Will at the hospital every afternoon while I went home, got Quinn from school, fed, bathed and put her to bed. Then someone would stay at the house overnight with Quinn while I went back up to the hospital with Will. 

I can't imagine how crazy Neil must have been going this week. He has been overseas traveling and there is a 12 hour time difference, not to mention not being able to just fly home. It obviously would have been easier to manage two kids with him home, but the worst part is just not being able to hug Will. We are all excited to have him home soon! 

Will made a friend in the hospital this time. A little guy who is a few years older and very kind. They played the Wii together, rolled a ball and just enjoyed visiting with each other. 

I think everyone was happy to be home Friday. Quinn seemed pretty angry with Will at first, then after a bit she just attacked him with hugs and kisses. Just kept hugging him over and over again. 

We left the hospital and his labs were steadily coming down, but still very high, in the 300s. 

It's Monday and he did lab work. Down to 249. So that's good, but still not right. 

You can tell he is still pretty off balance and having some coordination issues.

I don't know when he will go back to school. Definitely not till his liver is functioning properly. 

I have some photos to upload, but for whatever reason it's not working. I will try and update it later. 

Lollipops for everyone

Quinn has had a bad run here lately. Her second ear infection in August and now.... strep throat in September.

She spiked a temperature this weekend and has been sporting a snotty nose for a bit too. I kept her home today and took her to the doctor.

She tested positive for strep. After a fun filled two hour visit we left and picked up Will.

While en route to car pool, I checked in with his immunologist. She said go get him tested and called in some antibiotics just in case. So... Will hopped in and back to the pedi we went. He ZERO symptoms - no fever, runny nose, cough, throat pain etc. But, tested positive for strep as well.

The doctor thought maybe his throat looked a little red, but she never would have diagnosed it as strep. I am just so relieved he doesn't have symptoms and we were hopefully able to nip this in the bud. Please say a quick prayer for Will that this is as far as it goes for him and that the antibiotics do their job.

So after I got medicine, the kids fed, bathed and in bed I headed to a doc in the box and was tested. The biggest shocker of all, I'm negative! So relieved. I figured I would have it too and it would just further complicate our lives.

I have spent the better part of the past 24 hours just troubleshooting how this would all work out and just sort of panicking. I'm relieved that we know what's going on with Quinn and I guess relieved to know that for now, Will seems to be okay.

He had a great morning at school, then a pretty bad afternoon. I also feel terrible having even sent him to school, but I didn't know so I can't fix that. One big indicator something is off with him is not only his energy level, but his coordination - or lack thereof. We have seen a little fatigue and slightly more balance issues but nothing alarming.

At any rate, after holding both kids down for their throat swabs it was lollipops for everyone.... I think the nurse felt horrible after doing Will's and left the entire basket just for him.

Will was so upset after his; I don't think I prepared him for it very well and he sort of kept falling apart the rest of the day. 

It was everything from not being able to kiss Quinn, to missing his show and tell tomorrow, to wanting to use my phone while it was charging. He also was really angry at the CVS drive thru line and how the cars were taking forever. He basically said and acted exactly how I wanted to do :-) 

(He will be able to do show and tell a different day!)

I should note, I'm also shocked Quinn didn't somehow manage to choke on that lollipop. At least we were in hands reach of multiple CPR trained staff so I just let that one go. She licked it till it tasted like cardboard. 

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. 

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.