Thursday, May 29, 2014

Never In My Wildest Dreams....

When Will was diagnosed three years ago, we sat numbly in a patient room crying. I don't even know how we drove home. Neil and I spent many many days crying and clinging to Will, clinging to each other in grief. 

Never in my wildest dreams did I think three years later we would be making a real difference to help children like Will. 

Two years ago some of our friends came together and said, "we want to establish a non-profit to help Will." It all came together so quickly and People Against Leigh's Syndrome (PALS) was formed. 

PALS seek to build awareness of this unknown disease and support efforts that would lead to discover a treatment or a cure.

Currently, PALS is working in partnership with the Children’s Memorial Hermann Hospital to support the UT Mitochondrial Center of Excellence through a special PALS fund set up at the Memorial Hermann Foundation.

The UT Mitochondrial Center of Excellence is led by Dr. Mary Kay Koenig and provides cutting edge medical care to individuals affected by neurometabolic and mitochondrial disorders. Additionally, Dr. Koenig treats the world’s largest homogenous Leigh syndrome population in the world.. 

We hosted our first event last May and raised nearly $35,000. This was an amazing accomplishment and it has continued on. 

Just a few short weeks ago, we hosted our second PALS event and it raised about $95,000. Each person that gave money, time and support just helped make a real difference. 

The list of people to thank is long, from sponsors to silent auction contributors as well as each person who gave their time and talents to make this event happen. 

The person I really want to thank is my son, my hero and my inspiration to making every day a good day. He is the reason why we are all able to be part of something amazing. 

(Yes, he is wearing a safari hat in Staples) 

If you'd like to make a donation to PALS to support the UT Mitochondrial Center of Excellence at Children's Memorial Herman, here is a link to donate:  (it takes a minute to fully load). 

I can't wait to see what next year brings! 

Tuesday, May 20, 2014

Life, death and everything in between

The past four days I have gained a slightly new awareness on the process of living and dying. My mom's dad passed away last night. I have been trying to sift out how I feel as there seems to be a lot to process.

He spent 88 amazing years on earth with five kids and 10 grand kids and 13 great grand kids. That's a pretty amazing life. During those 88 years, he fought against our nations enemies, made some pretty fantastic milkshakes, played a decent game of golf and enjoyed good BBQ.

He came to Will's fifth birthday party and I remember watching him watch Will for a brief moment. He looked at Will with a look of amazement. I know that look as I catch us doing it. He printed off every single blog post and without fail always told me that he was very proud of us.

He suffered for four days and passed peacefully surrounded by people who love him. I spent a portion of each day with my mom at the hospital waiting room. It was perhaps one of the hardest things I've done in a while.

I have been lucky enough to only attend funerals of the "old" - granted some were deaths that were not expected, but they had a good long life and were surrounded by their children, friends and family. I can't help but feel as though these types of deaths are really celebrations.

I celebrated my grandpas life. I will miss him and I am sad for my mom, but mostly, I am happy for him. His suffering was nominal, his life long and plentiful. He's in heaven, probably already playing golf and catching up with his good friends about a fishing trip that ended with him pushing the boat out of the mud. (one of my favorites)

My aunts and uncle had to make a choice for my grandpa and his future. THE CHOICE. In retrospect, it probably wasn't really a choice, it was obvious, but there is so much emotion behind that it's hard to distinguish. I have often thought about the choices we make for Will's health every day. They are easy ones right now. Sometimes complicated or complex, but for the post part, easy. It's been a weird paradox of being "in the moment" with my mom and extended family and then someone starts talking about a child's funeral they went to and switching back to my life and thinking about how I would handle this for Will.

I keep trying to find the word for experiencing joy, grief, hope and sadness in a single emotion, one single second of feeling. I grieve for my son, I have hope that we saving him, I see him smile and am filled with joy and I see him work so hard to accomplish something and I am sad, but proud. It really messes with your head.

The past four days I have just reminded myself that right now, we're in the "everything in between" stage of life and death and to let the "what if scenarios" about Will's health pass without too much thought. I don't know if I will ever be able think about others without it getting tangled up in emotion about Will.

Maybe that's okay, maybe it's not. But it is what it is.
I brought Will with me during the weekend visit (thank goodness Uncle Tommy was there to distract him). Will and I talked a lot about dying, heaven and God on the way there. I told him that Papa Holmes was going to heaven soon. He said, "YES! Heaven is awesome!" All I could do was agree. 

The difference between normal and mito

Funny little reminders every day of how my two kids are amazing, and amazingly different.

Quinn bear, as Will calls her, is now 4 months and 1 week old.

She had her 4 month check up last Tuesday and got all her shots - one of which I think made her stomach upset as she ran a fever and puked. We're in the clear, but I can't tell you how weird it was to not immediately report to the ER as we have to do with Will.

I also space Will's shots out so he doesn't get everything at one time, with her I am more comfortable doing them all at once (not looking for a debate in comments here on vaccine's, thanks though!)

I gave her a pop of motrin, pushed fluids, monitored her pee diapers and did a lot of worrying. I guess the only change was that we did that at home, instead of in the ER with an IV in Will.

I have to keep reminding myself that it's okay to react this way. The on call pediatrician said that as long as she peed every 8 hours we were okay. I was like, WHAT?! EIGHT HOURS??? Then I reminded myself that this is Quinn, not Will.

She also tried oatmeal for the first time... I don't think any landed in her stomach, but a lot around her face / mouth.

Photo taken by Will... 

She must have liked it somewhat because she spent some time licking her bib. 

Trying to get her to spend more time on her belly... it's tricky because she has such nasty reflux that finding the optimal time when she's not tired, hungry, eating, sleeping or digesting... 

Friday, May 16, 2014

WOW - PALS event 2014

WOW! All I can say is WOW.

Thank you to everyone who volunteered, donated, sponsored and attended last night's People Against Leigh's Syndrome event. I came home to a sleeping Will and crawled into bed with him and held him tight for a long time.

We had an amazing turnout and I can't wait to announce the final dollar amount that was raised.... it's going to knock your socks off :-)

The list of thank you's are long. The amazing people we met last night are generous. Lots to do, but for now, I just need to say thank you.

Will is my hero. Last night we took a huge step towards saving my hero's life. My five year old son's body was born broken, but I am so incredibly hopeful he will be with us and happy for a long time to come.


Tuesday, May 13, 2014

New boots

My boy loves all that is cowboy, so we affectionately call his leg braces boots. I figured it would make it more fun and less medical. 

We've been through quite a few pairs. 

This pair is new and different. I have struggled with this pair. 

He hasn't visibly regressed. He still is doing good with his physical therapist and his ataxia and balance are still the same (not horrible, but not good). 

He still severely hyper extends his knees and after some conversations with the orthopedics expert (Jason at Hope Orthotics) our PT (Ms. Laurie) and us we decided to try a boot that offers Will more support. It felt like a huge step backwards. 

I remember when we got Will's first pair, I thought oh ok, fine, he'll wear these for a few months and then we won't need them anymore. My sister and I had talked about renting a beach house the following summer and I thought by then he'll be wearing crocs like his cousins and running down the beach. (That memory is part of my "ignorant bliss" stage in this medical journey). 

Anyways... these boots go up higher on his leg, has a wedge on the bottom and a hinge in the back. It takes away some of his ability to move around easier but it gives him more support to catch his balance. 

He's had these since Easter. We had to buy some tall socks so that took a while to arrive, then we had to ease into wearing them. Then we had to go back and get padding put in and make some adjustments. They kept pinching his skin behind his knee and his legs were just a hot mess of bruises, near blisters and red marks. 

We finally got it all sorted out and for the first time he started wearing them all day this week. 

It's taken him some getting used to. He was having some rather large falls at school because they make him use his quad muscle, a muscle that he hasn't previously put to much use. 

The goal is that by giving him more support and making him activate his quads, it will help him to stop hyper extending his knees and be safer while walking.

I actually had, what is likely one of my grand delusions, that once we get his quad muscles going maybe he can go back to just ankle level boots and one day boot-less. Not high on the list of priorities in my prayers, but still a nice fleeting thought. 

For now, I've just realized how happy I am to be slightly less worried about his core stability and him twisting his knees. I've traded those worries for other ones... 

Silly selfies while we wait

He did a good job being patient while his boots were adjusted so we played in the germ filled play room.