Friday, October 2, 2015

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 :-)

Wednesday, September 30, 2015

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!

Monday, September 21, 2015

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. 

Tuesday, September 8, 2015

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. 

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. 

Monday, July 20, 2015

Proceed with Caution, but Real Hope

On Wednesday, it was announced that a possible cure for mitochondrial disease is becoming closer to reality than ever before. 

"Today we can say that a cure is on the horizon,' said Professor Shoukhrat Mitalipov of the Oregon Health and Science University, who was lead author on the study. "Over the past several years, we have been working to generate stem cells for use in combating disease. This critical first step toward treating these diseases using gene therapy will put us on the path to curing them."

Here is a great article explaining how this works and the research behind it: 

Here is the press release directly from Oregon Health and Science University:

I met one of the study coordinators at the recent UMDF symposium in Washington D.C. I don't know if I will forget this moment. We got to talking about Leigh syndrome, Will and his history. We were talking about an entirely different, but related subject called Mitochondrial Replacement Therapy (which I will post about later). 

So we're sitting at this round hotel lobby table surrounded by people and she tells me about this gene therapy research explained above. It took me a few minutes of intense questioning before I would actually allow myself to believe, to have hope, that this was real. It was all I could do to stop from having a total breakdown.

I clutched on to the paperwork and bee lined it for Will's mitochondrial doctor. I totally interrupted her conversation and told her I need to know if this is real. This lady says it's actually maybe hopefully possible to help Will, but I don't know?? I doubt I was making much sense I was so overwhelmed with emotion.

Even after Dr. Koenig said yes, this is real. They are legit. I still really couldn't figure out how would it all work? How can we be in this trial? Oddly enough, what actually calmed me down the most is the realization that they don't know how to get the stem cells into the body, and the brain will be one of the most difficult areas to reach.

I guess it took a real obstacle for me to get back into reality.

I was almost afraid to tell Neil. I'm afraid to be blogging about it. I don't know how to explain this weirdness. It's like there is true real hope, but when? but how? how long? would it actually really help? would it repair what's been damaged? would it ruin more? would it kill him? would it give him a whole new prognosis, but what does his quality of life look like? It's overwhelming.

But, for the first time I have real, honest to goodness hope that this is going to be real. Real for Will one day. He is an ideal candidate, minus the whole "how do you recreate brain cells with stem cells then get them into the brain" - that's way over my pay grade.

In other, but related news, Will had an MRI done last Thursday. We got the results today.

There is no more virus in his cerebellum!! It's all clear. That was a huge relief to hear.

However, since his last MRI in 2012 his cerebellum has gotten smaller. Meaning, there has been cell death. Meaning Leigh syndrome is ravaging his little body. Meaning we need gene therapy now.

If you look at his balance and coordination from now to three years ago it has changed. Not major, but it has. We still feel like we have been very lucky. To have such "little" damage occur with such "little" change.

We have a lot of stop gaps in place in the hopes that something like this new gene therapy treatment will come to fruition before things get worse. Your guess is as good as mine as to how long it will take for the researchers to figure this out... let's hope it's quick.

Had to arrive at 7 a.m. without any food or drinks... not a happy camper until he got some happy juice as pictured above. 

Will also had some dental work done while he was "asleep" - he is a horrible dental patient and some major items needed to be done. This was the most efficient and safe way to handle it. Apparently he has very thick gums and they ended up cutting a hole in his gum line so his teeth could push through. They have already arrived just four short days later.

Passed out cold during our drive home in super annoying traffic. What should have been a 20 minute trip was 45. I was thankful he was still groggy because it was a long trip. 

Spent the weekend hanging out with family. Will never ceases to amaze me. He was under anesthesia for about 6 hours on Thursday and woke up Friday morning ready to roll. So thankful he bounces back so easily without any major problems. His biggest complaint was not being able to use a straw to drink with for a few days. 

And then there's this little lady... She's ready to go any time, any day any where and boy will she let you know when she's ready for something else. 

*Footnote: I realize that this process and science behind this new gene therapy has a lot of moral and ethical choice making. I ask that out of respect for our feelings please find a different area to share your thoughts on that subject. Thanks. 

Friday, July 10, 2015

Grief, a 24/7 experience

*Photo credit: The Writer's Circle

I feel each of these emotions every day. Some more than others depending on what's happening. Some flash by me quickly, mostly because it's too painful to fully experience them or because I'm in public/in front of my kids and I need to mask my emotions.

Some linger on for a few hours, or they pass quickly and come back later when I least expect it.

Sometimes when they appear and I have the luxury of being alone with my thoughts I can fully explore how it feels.

I grieve for Will, for our family, for the failed attempts at having additional children, for the families effected by disease... for so so many things.

Most days, I just hope that I make it through the entire cycle quickly and that the really horrible emotions don't stick around.

This camp Will has been attending has forced me into the "main stream" world - this cycle of grief is illuminated just in the simple interactions of a day.

None of the other kids have a hired aide to push their medical stroller and help them navigate stairs. I feel the emotional outburst I would like to have when see the side eye stares of the other (fabulous) moms dropping off their kids, I feel the anger and and guilt when his aide tells me that his hand was shaking from just holding a pencil while trying to color in art. I feel the shock and numbness associated with this diagnosis when I talk to the camp director about his abilities.

I also praise the new relationships - when the music teacher allows Will to pop in his class at anytime he's feeling overwhelmed or can't physically participate in the activities or when someone asks to pray for Will. I see the hope when Will confidently "jumps" on stage TWICE to participate in the daily morning talent show. I see that he is helping others when he makes his new friends laugh.

Grief is a funny, never ending circle. You can't escape it. It will always find you and color your happiest moments. But, I have the power and courage to experience it and find a way to be okay. After all, I have so so so many things to be eternally grateful for and happy about.

Friday, July 3, 2015

Will Goes to Camp

Maybe I'm OCD or just a big planner, but I knew this summer would be the first summer I didn't have something for Will to do. I was pretty nervous. I might appear to do fun things with my kids, but I can't do that full time nor do I have the stamina and ideas for it. Plus, I work part-time, thankfully from home, and while I have a lot of flexibility I still have to work.

I also knew I couldn't just send Will off to a day camp and expect things to go smoothly. So, I found a camp that would work with us and who would let us send an aide with Will daily. This week he started art camp at a place in our neighborhood called Mad Hatters - they do year round dance and art classes, but during the summer they have a two week camp program from 9 a.m. - 2 p.m.

I have heard amazing things about the program from a friend and Will's PT's kids also have attended. She thought with the support of an aide he would be great.

Day 1 was pretty hard. While Will hasn't been diagnosed with a sensory processing disorder, he definitely has some sensory overload moments. Who doesn't? He is not a fan of chaos or loud noises. (Or stuffed animals haha).

Day 1

Day 1 - with his aid, Chantel! Who happens to be his art teacher at school.

Coming from a school with a max of 10 kids in your class and the whole school having about 140 kids, this art camp is a big change. They have about 120 kids attending and 20 kids per group. That's a lot of noise :-)

With a few modifications for Day 2, including some noise cancelling headphones Will was having a blast. So much so that he signed up for the daily talent show. He decided to tell knock knock jokes. With a little help from Chantel I think he did an amazing job.

Thursday, July 2, 2015

Summer fun!

Wow, it's been almost a month since I last updated - we have been having too much fun in the day for me to stay up late and attempt to blog at night.

Health wise - Will is still recovering from that stupid virus in his cerebellum. I would guess we're close, but not quite back to baseline. It's really the stamina piece that's going to be the longest one to achieve.

I am thankful that he's now back to being able to regulate his emotions and not be as angry. Probably helps that he's using his words better too. Time outs have been significantly reduced.

During this past month he has seen immunology, neurology and palliative care doctors; as well as weekly PT, OT and Speech therapists. All are happy with his progress. He will have an MRI and dental work done under anesthesia on July 16. This was actually pre-planned before the brain bug; we are definitely curious to see how his brain looks after all this.

In PT, he made some major progress. He can do a full sit up now with someone just holding his legs. We attribute this new trick to swim lessons and playing Zelda on the Wii. What's that you say? Playing a video game made his core stronger? That's right. He stands playing as the Swordsman and has to slay all these animals coming at you on the screen. It's actually a pretty intense core workout for a kid who has little core muscles.

Speech we are working on "rapid swallowing" - he seems to get choked up when he gulps or drinks without a straw. But from a language and articulation standpoint he's probably back to baseline.

So what have we been up to this past month???

Cousin time!

First time on the boat - she was not happy at first, then by the end was wanted to climb over the side.

Our crazy driver - he loved it!

Kindergarten graduate! 

When he went up to receive his diploma he puffed his chest out and stood tall. It was hilarious to watch his whole body change demeanor when he was called up. It was like, "that's right people, I did this and I'm pretty proud of myself" -- We are so proud of everything Will has achieved. It's an incredible gift to see him do all the "normal" kid things - like going to school and learning how to count and read. 

A little stress reliever for us! An adult long weekend escape to Austin! We ate, we slept and we lounged pool side. You could see the famous "Austin Bat Bridge" from our hotel room; we watched for the bats every night and they never came out. Instead we saw a wreck on the bridge, might have been more entertaining than the bats. Everyone was okay. 

Will's reaction to being at the med center for six hours. Did his blood draws like a champ though!

Will always wants to stop and see the "big guys" and so I finally figured, why not!? He was thrilled.

Cousin time - Carson and Will love wearing all their "gear" - lanyards, walkie talkies and ID badges to name a few. 

Rocking out with Carson

First swim of the season with the diva. She loves water play at school too. She will stand in the baby pool, lean over and put her entire face in the water and stand up smiling. She also likes the hose; she followed her teacher around who had the hose, and kept pointing at her head to be sprayed. 

She can barely stand with that life jacket on LOL

Swim lessons! At first Will wasn't a fan, but by the end he did great. We were focusing on not freaking out if your head goes under, how to hold your breath and kicking. 

He got his entire head and face under water by the end! 

Train rides

Helping me pack for the UMDF conference! More on that later... 

Lost his two front teeth; he looks like he just has little vampire fangs now. 
And had a sleep over with aunt Lisa while I was out of town. 

I have to admit, I have been pretty nervous about summer time and keeping Will occupied... So far I'm thankful to say he has been having some good fun with more to come.