Friday, February 27, 2015

Life in Photos

Two kids, one crazy mom. Yup, she's still in her PJs and that list is moments away from total destruction. 

Birthday part at the Zoo! 

Will LOVES these things. "Silly guys" as he calls them. They always have one set up on the weekends at a mattress story and he loves to see if its out. Well, one day after I picked him up from school we happened upon FOUR silly guys in a parking lot. 
We had to drive by and Will wanted a photo to show his dad. 

Got boots and shoes off ready to go get weighed at the doctors office. 57 pounds and 4 feet tall and of course, he wore his favorite orange shirt. 

Our view from the doctors office included Rice University's athletic field. Neil and Will went with one of Neil's old college buddies to the Longhorn baseball game. It was so stinking hot that even with Will's cooling vest on they couldn't stay. Of course it was the warmest day of the year so far. 

Her love for construction and yard tools continues..  
She has figured out how to climb up on the couch and thinks it's hilarious to walk on the cushions. 
She also has figured out what a little pop on the booty feels like now.

Neil and I took Will out to an "adult" restaurant for dinner one night. He was so well behaved and you could tell he really was having a nice / fun time. 
Maybe this dessert is why his pants don't fit anymore. 

She loves to swing now! Will helped me push her since as Will said, "She doesn't know how to pump yet. I will teach her when she is older." My heart just melted. 

Showing off his pumping.

Will swallowed his first tooth and since then, two more wiggly teeth appeared. It seemed to be affecting his ability to pull off food and chew so one night we just yanked them out. It was traumatic. Neil got a taste of what it's like to be at the dentist with Will. The funny thing was after it was over Will acted like nothing happened and just was so pleased to be able to tell his teachers and friends about his new missing teeth. 

Hot chocolate on a cold day! 

Wednesday, February 25, 2015

SuperKids Rock

During the past four years I've had so many people say things such as:
Wow, you're doing an amazing job.
You are supermom.
How do you guys do ALL that.
I could never do what you're doing.

I've always kind of thought to myself, REALLY? You wouldn't do this for your kid too? Maybe we could go about it differently, but really? You could NEVER do this? Then I tend to think, there's a difference between want to and have to and then I recall some of the listless parenting I see in various waiting rooms. Perhaps I just have a very aggressive stance on getting things done to help my kids.

I've never thought of all the "stuff" that comes with Will as a "have to", but more something we do because we love him so fiercely. In fact, all this "stuff" has actually given us this overwhelming love for our kids.

After Quinn arrived a friend added me to a "Mom" Facebook group. I'm now part of many Mito FB as well as the other Mom FB group. My newsfeed jumps from varying extremes of parenting some days.

The past few days both FB communities seem to be in overdrive, maybe it's the cold weather. I started thinking about the moms posting these questions/comments and realized that probably not every parent would do what we do for Will, but the vast majority of them sure as hell would.

Both worlds actually worry about the same thing, it's just different degrees of issues. I would classify so many moms as "Supermom's" who have perfectly healthy little children. The degree of need just differs.

Real posts from Facebook, somewhat edited to eliminate the excessively long back story.
Normal mom - help my 3 year old daughter went on a food strike and will only eat mac and cheese. what should I do?

Mito mom -  thankfully my 8 year old daughter loves to eat mac and cheese, but that's pretty much it. We are thinking of switching her G-Tube formula, any recommendations?

Normal mom - what temp do you take your child to the ER? Is 104 scary?

Mito Mom - well, we're on our way to the ER, little guy's temp just hit 100.

Normal mom - I just don't know what to do about getting little lady into this new magnet program, any tips?

Mito mom - Oh good, you were able to attend school today without major problems and we have an IEP coming up next month.

Rashes:  This is one area that normal and mito meet - what is the deal with weird funky rashes in weird funky places? So nasty... and please stop posting photos of them...

Then there are the little things I don't even realize I worry about anymore. Gas in my car for example. I was relaying this story of Will's first ER trip after he was diagnosed. It was about a week after we found everything out and he got a fever.

I told this person I made it from my office, to Will's school, got gas and to the med center in like 25 minutes. I was quite pleased with that amount of time but was really irked about having to stop and get gas. I thought that five minutes of getting gas was a horrific amount of time to waste as I knew I needed to get him hooked up on fluids and on medicine.

(Let's not discuss how crazy I might have gotten in the ER while we waiting what seemed like an excessively long time for the D10 to arrive and get the IV into his arm.)

Now, if my gas is below a fourth tank, I go fill up. I never want to be near E again and worry if that would delay me from getting Will, or Quinn for that matter, the help they need.

Probably every mom and dad has this worry; we just worry about it in different ways. I don't even realize that's why I fill up so often nor does that sort of "petty" stress bother me anymore. It's just part of our new normal.

Superparents Rock! Especially SuperDad. SuperMoms are even more super when there is a SuperDad.

And SuperKids are actually the most important part!

Thursday, February 19, 2015

Happy Valentine's Day

From my loves to your loves... only a few days late. 

Will and I enjoyed a lovely afternoon making his Valentine's Day cards. He picked "Hot Wheels" and decided to give each friend a hot wheel from his collection. He traced all the friend's names and his own. Thankfully, there are only eight people in his class :-)

Will had a not so good day during his big Valentine's Day party at school, 
but still managed to chunk a deuce for me. 

Oh sweet Quinn... She loves milk, but her body hates it. We did a dairy challenge to see if she could start eating milk products. Didn't seem to go very well. It was either that or teething, or both. 
We'll try again after Spring Break. 

She doesn't sit still for long. Always on the go... 

Tuesday, February 17, 2015

A heavy month

This past month has been a "heavy" one for us.... High, low and icky about describes it.

The high!
Neil and I attended Will's parent / teacher conference in early February. We learned that Will received awards in music, art, PE and nature learning. Not every child receives these awards, so it makes me even more excited that he was able to be recognized in things he loves. Namely, PE.

If you swapped in some good mito into Will's body we would have a sports playing machine on our hands. He is all boy.

I think the music award might have been my favorite because of the description listed as to why he received the award.

Also during the conference we discussed what would be next for Will. Thankfully, Will has been offered a new school year contract, meaning we will be going back in the Fall. I have had this hidden fear since August that his teachers and the school would come to realize his physical needs were more than they could handle during the day. Heck, they are hard for me sometimes. That day may come, but for today, we're VERY excited to be going back in the Fall.

Neil and I have taken the approach that as long as Will is happy, healthy and safe at school whatever he learns and gets to experience is just the icing on the cake. 

The low
In mid January we received a call from school that Will was having a very bad morning. He was extremely uncoordinated and showing a lot of ataxia. His speech was slurring and he seemed to be disoriented. For example, he was asking his teacher, "Where is my sandwich?" and it was literally right in front of him on the table. The physical stuff and slurred speech happens in varying degrees by the end of the day, but in the morning? Tha's very very rare and the disoriented questions and "weird" stuff is very abnormal.

Neil picked him up from school (it was the ONE day of the year I had a work client in town... of course). He seemed to have a fairly normal afternoon and evening; got good rest that night and even had a thumbs up day the following day. Then it seemed to be a series of not so great days... weeks.... Reports of lack of coordination and more frequent falling. Slowly he seems to be creeping back up to his baseline, but he's taken a couple of bad falls and scared the hell out of me one day.

He fell when we were picking up Quinn and then told me he couldn't stand up on one leg, couldn't put any pressure and he seemed to be freaking out. We got it under control and made it home. Eventually he was fine.

This is easily one of our top five worst nightmares - him falling and hurting himself to the point of twisting, breaking, fracturing etc. He might never recover from that fall and return to his current baseline again. Of course, the guilt associated with not being able to catch him from that fall didn't help my mental status either.

Then, the following week Quinn came home with a 102.4 fever one Thursday and then started the snot, congestion and cough. I think she gave some of the congestion to Will, but thankfully kept the fever to herself. They are both still snotty, but a small win - me and Neil never got it!

Thankfully, Neil was able to rearrange some of his stuff and we were able to quarantine Will away from Quinn during the first 36 hours. What a scramble that was though. We had so many things lined up that day, including one of those damn boot appointments to get the new Ninja Turtle boot just right.

Okay, so maybe there were more lows than I thought... :-)

Clearly feeling a lot better as she was up for some weed-eating in the laundry room. 

And finally, the icky...

We have told Will he has a mitochondrial disease. ICK ICK ICK

Not the prognosis or the magnitude of all of it, but still ICK!

As his parents we have strenuously avoided telling him anything. Likely because we have still been trying to process our feelings and emotions about the whole thing. Well, time crept up on us and now instead of a 2 year old, we have an almost 6 year old who "gets stuff" and it was simply time to open this door for Will.

I remember all four of us were laying in bed Sunday morning (well, three of us were laying and the smallest person was crawling, rolling and screeching). I got a good snuggle in with Will and was laying there thinking that this was one of our final moments of innocence. Pure innocence. He knows something is different about his body, but now we're naming it. We're taking something away and giving something in return. But it doesn't seem like a very fair trade.

It feels unimaginable that one day we're going to have to explain the magnitude and prognosis before he decides to google it and read about it himself.

In the next three months, Will has six various doctors / medical appointments. He's a smart kid, he listens and absorbs everything he hears. We avoid using the word mito or Leigh syndrome around him but it's impossible to do that in a doctors appointment!

So, alas it was time to do the deed. We spent a lot of time worrying, nitpicking and internally freaking out.

You know how college graduation was such a big deal, like you work and worry so hard for so long to achieve something; the moment you receive that diploma should have been life changing, but it wasn't. I found it to be very anticlimactic; thankfully, telling Will also has been rather anticlimactic. At least for now.

We worked with the family /mental health team at Will's school to develop a "Social Story" - essentially it's a short story that explains what mitochondrial disease is and features Will in the book.

The book is amazing. It explains what mito is, how our bodies need energy and how our mitochondria are supposed to provide that energy but that all our bodies do it differently. The art teacher at school illustrated the book, the counselor and principal helped write the content and his teachers and school nurse provided some amazing "kid centered" insights to help. Team Will rocked the house. If you're curious about the book, I'm happy to share it with you, but here are two pages...

Obviously significant time and effort went into this book and we are just so thankful to the entire "Team Will" at The Parish School for this gift.

It's been a weird, full, heavy month. I'm hoping the next month will be a little lighter and a little less intense.

Friday, February 13, 2015

Beating the Odds

Define: "Beating the Odds"

Will is sitting on a backless swing, pumping his legs and making his body move. He couldn't do this at the beginning of the school year. He can today.

His teachers sent this to us and I can only imagine how proud they must be of Will; I am speechless. I can also imagine how nervous they must have been watching it :-)

I think the superhero cape and expression on his face is what really makes my heart burst wide open with amazement, joy and love. Will continues to amaze us with his kind heart and pure determination to do anything he sets his mind to doing.

This is what beating the odds looks like for us today. It might not look like that tomorrow or in a year, but for today Will is taking names and kicking booty.

We have a fundraiser coming up for Leigh syndrome; seeing this photo made me even more inspired to make it a success. We will do anything to make this happen every day for as long as Will's body will let him.

Monday, February 2, 2015

An Encounter with Stuffed Animals

Will is not a huge fan of stuffed animals and really teeters back and forth between tolerating live ones.

A few anecdotes:
Our neighbor has a cat, Will loves to point Ernie out while we're in the car, ask our neighbor how the cat is doing and claims to like him. However, when Ernie comes in arms length Will freaks, shrieks and all 54 pounds of him end up in my arms.

Will's PT gave Will a stuffed koala bear for his birthday two years ago. As he's taking the tissue paper out of the bag and begins to touch and see the bear, he does the "freak and shriek" and refuses to continue doing PT until the bag, tissue paper and koala bear are on the front porch.

Neil took Will into Build a Bear to kill some time while I was on a mission for a dress for some occasion. Yup, you guessed it, freak and shriek.

He's come a little ways on this front. His teachers are probably the ones responsible for that as they work really hard to help kids deal with any sensory issues or fears. He actually asked to touch and hold a stuffed zebra in class.

Quinn on the other hand seems to love soft furry things and looks for blankets and stuffed animals to slobber on.

So, fast forward to a few weeks ago when we received his friend "Z's" birthday party invitation, to be held at.... Build a Bear!

Will and I discussed the party and what would be happening and if he wanted to go or not; we discussed in great detail the point of the party is to actually build a stuffed animal. Will was adamant that he attend.

So, I go ahead and RSVP Will because he loves a good party and I let Z's mom know we might have a freak and shriek happen and my advance apologies. Seriously though he loves a party, he still points out places that he's been for birthday parties and whose party is was and what happened. He loves to party.

The few days leading up to the party Will and I discuss a game plan about stuffed animals. He decides he will sit in his stroller and if he wants to get out he can. I will do all the touching and we'll make a leopard for Quinn. (apparently he was inspired by her leopard print shirt that day). His teachers even do a little stuffed animal "touch and feel at school" - this party was all the hype for that week at school.

So Saturday morning arrives and Will begins asking what time are we leaving and how he misses Z soooo much and how we have to leave NOW. The party didn't start till 2 p.m.

I purposefully leave a little on the late side, we stroll in and I wait for the freak and shriek. Nothing yet... we stand in the corner, make small talk with a few friends who greet him and their parents.

Party now full speed ahead.. I ask Will if he wants to pick one of those limp little carcasses hanging on the wall to stuff... Will says no. Continues to sit and stare at people. Gets a name tag. I ask again did he want to pick something out. I point out a Ninja Turtle and he emphatically agrees YES! He wants the Ninja! I ask which one and he selects the blue one. Z's dad mercifully navigated the flock of children and secured the Ninja for Will.


Will still refuses to hold it, or really even acknowledge that we are surrounded by stuffed animals.

I go with it; partially in shock because we aren't already home.

He sat in his stroller for the first hour of the party rather timid and somewhat grouchy and restless, by the end of the party he was on the floor holding his stuffed Ninja Turtle playing with the other kids.
Neil and I were SHOCKED. 

He stood and watched while the lady stuffed it.

Enjoyed the soap/cleaning table sans Ninja.

On the floor trying to blow the hearts (who knew PT and OT work!) 

On the way home:
ME: So, is Ninja a stuffed animal or a Ninja turtle? 
Will: A Ninja Turtle
ME: So he's not a stuffed animal?

So, I'm not exactly sure where we have netted out here, but I'm just happy to have survived a birthday party at Build a Bear without a freak and shriek.