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! 

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.
Feeding:
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?

Illness:
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.

School:
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!

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... 

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.

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.

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?

Will: NINJA TURTLE MOM

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. 

Boots fiasco

It's official, I hate Will's leg braces more than I thought possible. I suppose that things could be a lot worse (and actually they really really could be a ton worse) but let me point out that when something like a leg brace breaks, it makes walking rather difficult.

Will can walk without the support of his leg braces, or boots as we call them, but he is significantly less stable/sturdy and the opportunity for injury shoots way up. Not only that, but we don't have any shoes that fit a non-booted foot. Well, except slippers...

My "old man" in his slippers helping fold laundry. 

Per the usual, Will goes like a weed so about every six months he is due for a new pair. The new "Superman" themed boots arrived in November. When we were at the place doing the final fitting a piece popped off and the guy said, "huh, I've never seen that happen before. I'll go glue it back on." Right then and there a little piece of me knew that this wasn't going to end well.

Fast forward a few months of hard use and that piece, as well as some additional pieces, broke off again and again and again... No, not once, not twice but THREE TIMES.

Entertainment while we wait. 

During the second emergency "fix it" trip I had finally had it and they agreed to make a new boot. Well, that involves yet another appointment. So, three repairs, one new casting and one final fitting appointment we have one new leg brace. For those of you who are slow to add, that's five trips in a 18 day time period.

We absolutely love Hope Orthotics and they did a great job helping expedite the new boot, did them at no cost to us and always worked us in to get the current boot fixed, so kudos to them. They think what happened was on Will's right boot the plastic just didn't get hot enough to meld all the other plastic pieces together. Statistically bound to happen when you have had six pairs of leg braces.

Quinn participated in one of these trips - the one where we hauled you know what to the med center in 4 p.m. traffic to get there before they closed at 5 p.m. 

That one was my absolute fave... insert sarcastic laugh.

I think what frustrated me the most was that this happened to Will in the middle of the day at school; he basically had to sit and wait for me to come get him and couldn't really participate in any big movements without holding a teachers hand.

When I got there the last time it was a beautiful sunny morning and the class was outside doing something called "Adventure Blocks" which sounds to be one his favorite things. He was sitting next to his teacher and just had this sad little face; broke my heart right there. Granted, I found out later he was participating previously with the help of his teacher but had just sat down to take a break. It made me feel a little better but not really.

Through all of this, Will did an amazing job of letting someone know when it just didn't feel right. In other words, he advocated for himself. He asked for and immediately got help. He earned a coin in his bank at school for being so brave as well. So proud.

See that little black rubber looking piece in the middle? That rubber piece kept falling off as well as small piece of the inside of the boot. The "work shop guys" as Will calls them now used the rivets and super glue to adhere it all back together.

Today we picked up his new boot - Ninja Turtle. So one left leg is his old Superman boot and right leg is Ninja Turtle. Let's hope the Turtle was melted properly. If not, his boot won't be the only thing breaking :-)

Notice there are no rivets on this boot.

Not to worry, we'll be back getting fitted for an entirely new pair in probably two or three months. I launched a pretty aggressive campaign to get an entirely new set but lost that battle. Oh well. I got to spend a lot of extra time with Will and we made the most of it. One day he got to be my little temporary employee and aggressively tried to get my attention  waited patiently while I had an hour long phone conference for work.

Quinn is ONE!

Time flies when you're mixing bottles, cleaning up spit up and cutting up food. What a year it's been with our little lady, Quinn Katherine Martin! She is 30" tall, 21 pounds and of course has that big "Martin family" head - 18.74" - the 98 percentile.

Birthday - 1/9/2014 at 4:44 p.m.

Nicknames: Quinny bear, QB, Little Miss Grabby Hands, Quinnsy, Q, Quinny, Sis, Little Lady

Favorite foods: Strawberries, avocado

Silly, crazy things she does:

-Walks around the house holding toys and dropping them along the way

-Loves bath time; she could play till the water gets cold

-Can say uhoh, dada, thank you, bye bye

-Loves to clap for herself and say "yeaaa" 

-Occasionally can find her nose and blow kisses

-After eating in the morning; goes hunting for her brother and dad

-Very stubborn

-Laughs when you tell her no; doesn't seem to care if you pop her hand

-Not a big snuggler, but will sometimes pat your back when she wakes up or greets you

Getting her into this world, our crazy lives, was a struggle. There were prior failures and mishaps along the way, but I couldn't imagine not having this little bundle of "normal" in our lives. 

It's been a unique year for us in that we actually watched a child develop "normally" - I still watch, in utter amazement, how her body works and moves. Taking her first steps at 10 months old was and still feels insane. The way she runs, pops right up and just rolls around with such ease is an amazing and bittersweet gift to see every day. 

I will never take anything she or Will does for granted. Just watching the two of them interact, play and be silly together is quite possibly the most amazing gift of all. 

Quinn has brought so much love, joy and happiness into all our lives. Her sweetness has filled so many holes in my heart, holes I didn't think could be filled are healing in a different way. I thank God every day for her and for Will and Neil. 

May you have many, many more! 

Merry Christmas and Chunk a Deuce to 2014

Merry Christmas and Happy New Year! 

Well I knew it would happen, I got all caught up on the blog then 17 days at home with kiddos happened and so here I am, behind again. 

Will had quite an extensive Christmas break "I want to do..." List. I won't lie, I was rather nervous about keeping two kids entertained and some semblance of sanity for me during the break, but it ended up being a lot of fun. And, it was a good confidence booster than I CAN actually handle two kids by myself for multiple hours and not just inside our house. 

Quinn's first Santa experience... okay at first then...

Not so okay. I'm utterly shocked Will didn't throw a deuce with Santa. 

He must have really wanted some presents. 

Annual tradition of breakfast with Santa with Murphy

Christmas morning! 

This was Will for TWO hours... playing the Wii. I think he tried every game a couple of times. 

Apparently this along with some serious play time at my parents house Christmas afternoon resulted in not a good situation for Will. He was totally wiped out. Neil and I were both really really concerned he was having some sort of metabolic stroke. His speech was slurring and you could tell he wasn't chewing as well. We spent the next few days laying low. 

Will gave Quinn a baby doll that giggles when you squeeze it. I think they both like it. 

JJ Watt jersey. He really is just all boy. He may have a mitochondrial disease but that hasn't hampered his love for sports, any and all of them.

More present unwrapping

Neil and I went to the Longhorn bowl game with some friends. Not to shabby of a view. I had even gotten some pictures of Bevo for Will, but he chose to get on my phone and delete them. 

He deleted those pictures AFTER I gave him his surprise of a Longhorn cookie from the game.

One of the items on Will's "I Want To..." list was to go to the library. So we went during story hour / craft hour. Quinn and Will both had a great time. They did music, books and coloring. 

Will was the oldest kiddo there... too cool for this huh?

Participating in the session

Playing operation, a Christmas gift! 

Not in the mood for photos, but another item on the list. Try out this neighborhood place called Reds for a special dessert treat. We walked there in the freezing cold / nasty weather; at least it was good to get out of the house. 

Another item on the list... make a Gingerbread House. Bonus points that it was with Aunt Lisa!!

And finally, Happy New Year from Quinn. She hasn't quite figured out how to hold her liquor yet. :-)

In many aspects I'm sad to see 2014 go. We celebrated so much, Quinn's birth, Will's 5th birthday, successful jobs, even managed to go on a vacation. Most importantly, Will had an amazing year. He started a new school and has been overall very healthy. 2014 is a year that I wish had gone a little slower because everyone and everything was pretty amazing.