Saturday, December 24, 2011

Breakfast with Santa

I loathe waiting in long lines, especially for Santa. So, this year I decided we'd do a breakfast with Santa. Of course, I decided this just almost too late. Alas, we got reservations at the downtown aquarium. Our friends Peyton, Rosie and Murphy came too.

While we were playing outside after breakfast, Peyton got an email saying Discovery Green (park downtown) was going to have snow at 10:30 a.m.! We hustled off to check out the snow in Houston - in 50 degree weather. We arrived and realized the line was just the tip of the iceberg! Probably 200 people were in line so we vetoed the snow, but had a good time checking out the ice rink and all the other park features.

The highlight of the day was Santa IN the aquarium! I'll let the pictures do the talking.

Will had NO problems with Santa. He walked right up like they were old friends.

The underwater Santa and his elf. Rather creepy, but provided a few good laughs at the table.

Our best attempt at a family picture. Will was not interested.

Will has historically not had much fun in moon walk houses. Too many kids to run him over, not stable so on...

This time it was a bounce house all to himself and he had a blast. He even took like 4 or 5 steps and then would fall and collapse into laughter.

Murphy and Will at the ice rink at Discovery Green

Watching the zambonie

We got a snowball from the ice rink. I couldn't even get a picture of it before Will threw it on the floor. He said "ouchie, cold" :-)

Our friends took a bunch of pictures with their phones and I didn't have a chance to download them yet. Will add to this when Will isn't awake. 

Wednesday, December 21, 2011

My Nephews

As you might have seen in a previous post, my mom, sisters and I were all diagnosed with heteroplasmic mito with the Leigh's mutation. This simply means that not all our mito carry the mutation, but some do. There's no way to know exactly how much because of the way mito is found in our whole body. Will is a homoplasmic carrier, meaning all his mito carry the mutation.

Since Julie was a hereroplasmic carrier, that means she could have passed down either hetero or homo plasmic mito... and both her kids needed to be tested.

After what seemed like a REALLY long time, which in reality it was nearly 8 weeks, the blood work results came back last Friday and both my nephews are heteroplasmic carriers. We are overjoyed! This is awesome news for my sister and her family and I couldn't be happier for them. Of course there is a huge part of me that feels like, jeez universe, what did we do that was so wrong/bad you gave us this terrible end of the stick?

In all honestly, I got really emotional and just felt like I relieved Will's whole diagnosis over again. It was weird. I guess I didn't realize I much I was worried about it for my sister. I just fell apart. I thought I wasn't going to be able to pull myself up as quickly as I needed / wanted to, but luckily I had a "girlfriend" dinner that night and it was just what I needed.

The rest of the weekend was great. Neil and I went to dinner with some friends on Saturday night and had not only good food, but great company. I finished all my Christmas shopping and of course, Will wanted to help wrap everything. Which he did :-)

The three amigos before the school sing-a-long

Monday, December 19, 2011

Energy For Life Walk - Sat. Feb. 4, 2012

Energy For Life Walk! It's coming, Saturday,  Feb. 4 2012!

Please join our team "Where There's a Will...." There's a Way!
The easiest way to join is to go to the website,

1) Go to the website, 
2) Click on the Register button
3) Select "Join a Team"
4) Search by "Team name"
5) Sort it by "Contains" NOT start with. There is a drop down box, just select "contain"
6) Type in Will
7) Select the team "Where There's A Will..."
8) Click on the big yellow button "Join Team"
9) Please note, each person who is going to come, MUST fill out the form separately. You can't fill it out for one family. If you have a family of 4 coming, then you should register 4 times.
10) Fill out the form and submit.

Date: Saturday, Feb. 4, 2012

Sam Houston Park - Downtown
1100 Bagby Street
Houston, TX, 77002
map it

Registration Starts: 1:00 pm

Opening Ceremony: 2:00 pm

Walk Starts: 2:10 pm

Parking Information: Parking can be found in several nearby parking lots or on the street. Please bring a few dollars to pay for parking at either the lots or at the parking meters. (The parking meters are no longer free on Saturdays.)

If anyone has a connection to a t-shirt person please let me know. I'm trying to get shirts made that say "Where There's a Will... There's a Way" and include the UMDF and UT Mito Center logo.

Sunday, December 18, 2011

Tis the season for snot

This is a jumbled mess, but just some random health / Will updates.

Snot. It made an appearance last week and I have kicked it's butt. Knock on wood.... Last Monday Will woke up with "ear snot" coming out of his right ear tube. I just decided to just show up at the pedi's office when they opened and politely tell them that they needed to look at this kid RIGHT NOW or he will have to go to the hospital. A tad dramatic, but it worked.

Diagnosis: Right ear infection. His left ear was a little red, but not inflamed or infected. So we started on ear drops for his right ear and meds to clear it all up. He might have had a sinus infection too because I noticed his snot went from green to clear after starting the antibiotics.

So far so good. Have I mentioned how much Will hates Nose Frida now? I still use it and it does the job. It's gross, but it keeps him less snotty and that's a good thing for everyone. He also hates the antibiotics he is on so that's a fun fight twice a day. I save it till the end of all his medicine so he isn't mad the whole time he's sitting there while I shove multiple syringes down his throat and drops in his ear.

Potty training. Continues to continue as do the accidents. I think he sometimes just has a hard time when his energy level is low. Can't get every part of his body to do what he wants. This weekend he did awesome thought! Only 1 or 2 accidents and he even managed to do a couple of BM's on the potty! He'll get it, might just take us a bit. Meanwhile, I'm washing clothes like I've never washed before.

Therapy continues to go well as does chewing. We all are getting a little braver in this new world of chewing.

Send a couple of prayers to the big guy upstairs that Will has a healthy winter. It's scary to think that one little fever or virus could send him straight to the hospital again and that he might not recover well. Meanwhile, we'll keep pulling out the hand sanitizer, taking meds and vitamins and keeping germs at bay as much as possible.

Our kitchen counter - just kidding!

The other day he did something I've not really seen him do before, he conspired. :-) I went out to load the car for the morning and he and Neil were in the entry way hanging out. He started to hide behind the door and then yelled BOO right as I walked in. It's awesome to see him getting to that next level of awareness and thought processing. 

Go Lady Highlanders Soccer!

My sister Julie was previously a soccer and volleyball coach as well as biology teacher at The Woodlands High School. She still keeps in touch with the coaches and some of the players.

This year, for the Lady Highlanders Soccer Program annual service project they decided to raise money and purchase toys for families who have a child with Mito and donated nearly $1,000 worth of toys to the UT Mitochondrial Center of Excellence.

Thank you so much to everyone who participated. I never realized how hard and lonely the holidays can feel, even when you're surrounded by love, family, friends and Will... I'm sure this gift helped ease the burden of many families.

Merry Christmas!

Loaded to the top

The awesome Mito team, Dr. Koenig is on the right.

Thursday, December 15, 2011


Will's school does a Christmas Sing-a-long every year. They try to get the kids to sit in rows, sing and shake jingle bells. God bless those teachers. I think I would pull my hair out.

So Wednesday morning I stood outside in the balmy nasty Texas "winter" and cried half the time cheered our little buddy on. He did a great job, and by great job I mean he stayed in his seat, shook his jingle bell, put the red nose up to his face, smiled and waved. The other half the time he, along with all his comrades, stared off into space. It was hilarious.

A few pictures to capture the his big stage debut.

Making his grand entrance. Yes, those are his hands and a foot on the t-shirt. :-)

Cousin Carson's big entrance.

Rudolph the red nose reindeer. Got his nose out!

I'm hoping I find a short line to visit Santa this weekend. We missed Santa on his first Christmas because he had RSV. I didn't want to take him because he was a)sick and b)didn't want to infect Santa or any other kids.

Morbid Dear Abby

I admit, I read Dear Abby. It's silly, but it's a good brain break. I had to post this slightly morbid letter, but it made my heart happy. I know one day we'll all (hopefully) join God in Heaven, but I will likely be alive to send my little angel off. I just absolutely am going to do this. It made me happy to think that on such a sad day, there would and could be a little bit of fun and joy - after all, that's what Will is all about.

Dear Abby:
"Saddened in New Jersey" (Oct. 2) complained that her sister's 4-year-old daughter put stickers on the hands and face of her deceased grandmother during her wake. Perhaps the child's mother didn't anticipate her daughter's actions. Children need to grieve, too. That said, they also should behave appropriately.
I saw an article about one funeral home with an excellent solution. Before the dearly departed is placed in the casket, the inside fabric, pillow, etc. are removed. The children are then allowed to decorate the uncovered casket walls with farewell messages and drawings. The interior is then "reupholstered" and nothing is visible. The children are told that it is to keep their messages private.

One story was particularly touching - a little boy wanted his mommy to know how much he loved her and for his message to be as close to her as possible. He wrote "I love you, Mommy" on the casket pillow that was placed beneath her head. At the service, only he knew about the secret message he had left for his mom for all eternity.

Wednesday, December 14, 2011

Hay ride

In June I came across a blog who wrote about a guy that does hay rides during Christmas time around the Heights. Our neighborhood has an annual event called Lights in the Heights where everyone decorates and kind of goes all out. So I planned the hay ride for the night after the event.

This past Sunday afternoon / evening we had our family and some friends over for dinner, a little craft project that my sister Lisa helped me coordinate and then off to meet the hay ride guy.

It was AWESOME! Below are a few pictures from our first hay ride. I think it's going to be an annual tradition now because we had so much fun.

Riding the tractor like he is in charge...

Aunt Julie, Cameron and Carson

My dad, Lisa, my mom and uncle Chad

Caroline, Tahra, Craig and James Peterson

Murphy and Peyton Jones

Grandma and Grandpa Martin

Daddy and Will

Loving the lights!

Keith, Ellery, Elizabeth and Bridgette Bilski

One of the awesome houses

All in all, our baby boy had a great time (so did we).

It probably sounds kind of weird to say, but I'm really proud of us. We made a memory that is going to last us a lifetime. So what girl doesn't love a few pretty packages and presents under the tree? This year, all of that just has quickly faded to black. I could care less if I get anything - if I get to see Will experience the joy and happiness of Santa, unwrapping presents and playing with the trash (forget the toys!) I will feel as fulfilled as I did at the end of the hay ride.

PS: I was telling my hairdresser about this and we called to see if she could book a hayride. He's booked for 2011 and 2012! Thank goodness I already booked for 2012.

Wednesday, December 7, 2011

No Accidents!

No accidents today with potty training! Will must have figured out how to get M&M's all day.

Tuesday, December 6, 2011

Potty training

I promised myself that we would start potty training after we got back from Stanford. So, on Sunday we hid them in the closet tossed out the diapers (size 6!) and pulled up our big boy underwear and a bag of M&Ms. We had mixed results as did Will's teachers on Monday and Tuesday at school. I filled a bag full of underwear, pants and socks and we had quite a few wet items come home. All in all, he's doing ok.

I really am curious to see how this goes. I don't see any reason why we can't try to do this. He's interested, he likes it and he has been successful sometimes. I'm hoping that he is able to do this.

My deep dark secret for not wanting to potty train is that I'm afraid that one day he'll be back in diapers and he'll feel self conscious or defeated that he can't control it anymore. I hate that for him. I just have to keep reminding myself that right now, this is the right thing for him. He deserves the chance to try and do it. Don't we all? Besides, he loves earning "candeee" -

(1) M&Ms for pee pee
(2) M&Ms for poo poo
(3) M&Ms when daddy is on potty watch :-)

I now have a towel on the couch, chair and room just to keep it handy to put on my lap or whatever Will is sitting on. I learned that lesson quickly. He sat down on the couch and had an accident. I grabbed the closest material to dab it up... it just so happened to be his winter hat. That was tossed in the wash too.

Dr. Sanjay Gupta

Dr. Sanjay Gupta from CNN reports on Mito!!!

Pretty cool story about Colby Wren a GA Tech baseball player who is fighting mito. Go Colby and thank you for raising awareness.

Monday, December 5, 2011

Home Sweet Home

We made it home, I think this trip was a bit much. It was just so much crammed into such a short time period. I think we're all glad to be home. I'm going to do a "week in photos" for this post. Much more entertaining than long explanations on brain scans.

I left off with pictures from this post...

Our bag full of used EPI-743. Turned them all in and we no longer have to record all our doses. Proud to say we never missed one!

"Hmmm, I guess I'll do this next test. I mean, I already got two stickers, why not shoot for four? I'm here aren't I?"

Just chilling... waiting for the brain scan... Sedated of course.

Wake up my little angel!

Not happy. Someone did not apply the urine capture bag correctly.

Our awesome nurse! She even remembered us from last time.

A new man post-hospital. With reindeer antlers and showing off his stickers.

Dr. Enns, Will, me and Katherine - study coordinator. Happy to have smart people on our side.

Momentous occasion - eating chips without choking!

Got in some play time before and after dinner on Friday.

No trip to Cali is complete without firetrucks.

Skin biopsy. Already healed up.

I have no idea where Will got this hand on the hip move. Couldn't be from me...

Santa was arriving in our airport terminal. So there was plenty to do while we waited for the airplane. Sadly, Santa didn't arrive while we were there.

And of course, we had to sit in the other chair for Mrs. Claus

Whew. I'm tired, are you?