EACH BLANKET HAS A STORY

Fall is here. Mornings and evenings are cold and dark, but oh so beautiful days. Our boy's hands and feet are starting to be constantly cold. We need to monitor his temperature more closely due to Jacob suffering from dysautonomia. This means he has a hard time regulating his body temperature among other things. Blankets are everywhere in the house ready to be wrapped around our boy.

As I have been keeping Jacob warm lately, I have taken a closer look at the blankets surrounding us all. I don't think I have ever bought a blanket for Jacob. Each blanket comes with a story of love and generosity.

This is my favorite blanket. A former Greek employee and friend of mine Nektaria brought it into our lives. I remember her bringing it to our home in Highlands Ranch for Sarah. It was used for Sarah for years, and also carried Jacob through many cold days.

This is a blanket I have mixed feelings about. Too many stays at Children's got us a few too many of them at home. I can't count the time I have swaddled Jacob in one of them. 

This is the blanket we have used the most. It's a happy, happy blanket. It's a green blanket full of dogs! We got it during the Snow pile event at Children's in 2008. This is an amazing event where you get to go Christmas shopping for all your kids without money!

You can call me superstitious, but this blanket has helped Jacob through some really scary times. It's called the ICU blanket in our home. He received it the first time he had a mitochondrial crash, and no one was sure if he was going to survive or not. The year was 2009. This blanket has also helped two other very special children to fight through their battles in the PICU. This blanket is always stored away in a drawer in Jacob's room, ready to get out only when absolutely necessary.

This is a very special blanket. It comes from Mito quilts of Hope. This project was founded by Christine Knox who has Mito herself and wanted to do something to help raise awareness. The woman who created Jacob's Mito blanket is a former nurse who lives in Las Vegas. The quilt is beautiful, but more than anything it's so soft and warm. It's definitely made for a Mito child.

This was a special Christmas present for Jacob. A collage of his family. I love when we spread it out on the floor, it's like a big pile of love.

It's hard to fit an actual jacket on Jacob in his fitted wheel chair. A smart mom started creating these wheelchair ponchos. The blanket snaps to the side of the wheel chair and keeps Jacob warm even in the coldest temperatures.

This is our latest addition. Jacob's para made this special blanket knowing Jacob loves his Minions. It's warm and cozy, and fits our boy perfectly.

As we go into yet another winter, I am going to cherish each blanket I will wrap around our boy.

Love, Maria.

A FALL GETAWAY

This weekend we escaped up in the woods right outside of Breckenridge. We lived in a beautiful fully handicap accessible mansion surrounded by nature. The generous founders of Domus Pacis once again invited us as guests  as they went out of town. In June, Jacob couldn’t make it since he just had come home from the hospital with pneumonia. Sarah and I had a great time, but we definitely wanted Jacob and Joakim to experience it as well.

Sarah had Friday off from school, and the rest of us took off from work and school. Jacob doesn’t travel light. Oxygen concentrator, bipap machine, smart vest, cough assist, nebulizer machine, suction machine, chillout chair, bean bag, wheel chair, therapy mat, foam pillows, medical supplies, and medications all went into two cars. The rest of us had to travel light in order for us to fit it all in.

Jacob hasn’t always tolerated high altitudes and has a tendency to seize. We took off from Denver with Jacob being on oxygen and on his pulse ox so we could monitor his vitals as we were climbing up the mountains. We took a stop midway, and Jacob was doing great.

As we unpacked both cars, it was time for Jacob’s midday feed and medications. As I draw up one of his seizure medications, I realized we wouldn’t even have enough for his evening dose. This is not a very common medication we could simply fill at a pharmacy in the mountains. Luckily, Joakim was such a good sport about it. He quickly grabbed some lunch, and started driving home to pick up this medication, so we actually could stay the weekend.

Jacob didn’t like it as we arrived first. He needed more oxygen, and his heart rate was higher. Luckily, he didn’t seize, but he was obviously working harder. After a few hours, it was as if Jacob’s body settled with the new high altitude, and he didn’t even need oxygen. We decided to still keep it on to make sure he didn’t have to work any harder than necessary. Joakim finally made it back by dinner time, and we were all happy to start the weekend together. 

Saturday turned into a very slow day. I can’t remember when we had such a slow day last. Jacob wandered from lap to lap, and got cuddles all day. Sarah and Joakim stayed in PJ all morning. We had lots of coffee and time to chat and read. I finally got to read Jacob all the books we picked up at his school book fair. I did escape for an hour of yoga at the rec center. This happened to be the Saturday of foam roller yoga. Best yoga class in a very long time for my stiff body. It was a beautiful warm fall day, so we decided we had to leave the house. We ventured off for some swimming! After swimming, there was time for more cuddles, reading and even a nap for mommy.

At dinner time, we go a visitor. We got a cookie delivery. This woman bakes cookies for Broadmoor and Ritz Carlton hotels worldwide, and the cookies were sure something special! We had to hide them from Sarah in the end. She brought her beautiful dog Maddie, and Jacob loved visiting with her. He even got a wet kiss!

As we were driving up I-70 on Friday, I was wondering if we did the right thing. What about if we would get up there and would put Jacob’s health at jeopardy? What about if we wouldn’t have time to turn around and bring him down for necessary medical care? At the same time, I knew deep inside that this trip was on Jacob’s bucket list – a vacation with his family.I knew this mansion would work perfectly for Jacob.

I have told myself several times in the last weeks that I have to slow down. I have too much to juggle right now. I have dropped the ball on multiple occasions, which means I just can’t keep up. This weekend recharged me, reset my priorities, and hopefully will keep myself focus on what is truly important in life. 

And best of all is that our new friends want us to consider their home as our "home-away-from-home" whenever we can get away again. We're so lucky. Until next time! 

Love, Maria.

CUPCAKES, MITO and GROWING UP

I haven't written about Sarah in a long time. Sarah turned 13 last month. She is swinging between childhood and teenager, mostly still being a child at heart. She surprises me with her sharp, analytical mind. She analyzes her volleyball games, and knows exactly why her team won or didn't win. She can read people really well. She has a big compassionate heart, and is really good with little kids. I also love to hear her interact with Jacob when they are alone. Their conversation carries on the baby monitor or through an open door. It warms my heart every single time. When Sarah is really sad, the only one she wants is Jacob. She wants him on her lap or simply laying next to him on his therapy mat or bean bag.

I have recently been thinking about what a great help and resource Sarah is to Miracles for Mito. Sarah has known Mito, since she was 3,5 years old and her brother was born. Her first job was to take Jacob on rides in his red wagon when he was in the hospital. She quickly figured out there were treats in the hospital kitchens. She also realized her parents were willing to bend on some rules when her brother was in the hospital. Sarah might have been in first or second grade when she verbalized that her biggest dream was to create a machine for Jacob. She would put Jacob in the machine, and he would come out of the machine cured from his disease. I was impressed how well she could verbalize it at an early age. There were years of disappointment, anger and tears when plans changed due to yet another hospital stay. There was that one time when Sarah was sure Jacob had died, and we were not telling her. Reality was that the hospital was shut down for siblings due to respiratory season, so Sarah couldn't visit. I will never forget us sneaking her in to the PICU, so she could see that her brother was very sick with tubes and lines everywhere, but he was still with us, still with her.

With no extended family in town, my involvement with Miracles for Mito has become a family affair. Sarah has come to every support meeting since the beginning of Miracles for Mito. When we arrived at the Anchor Center for yet a support meeting on Saturday, I didn't have to say a word. She immediately directed her friends to the closet where the extra tables and chairs are. She knows what to write on the welcome board to direct families where to go. She has prepared gift baskets and helped out at every silent auction dinner. She knows our Mito families by first name, and loves when she gets to prepare Easter egg hunts and Halloween parties for them.

We have had an intense couple of weeks with our non-profit leading up to our annual Silent auction dinner and our Halloween party this past weekend. For the first time, Sarah has been running her own projects involving her friends. Sarah is sharing the love of baking with two of her friends. This summer, they spent a whole afternoon decorating cupcakes in my kitchen. They were really good at it. I was joking that maybe they wanted to do a cupcake walk at our Silent Auction? They were jumping of joy! A cupcake walk is similar to musical chairs, and if your number is drawn, you get a box of cupcakes. For her birthday, Sarah received a dream cake from the organization Icing Smiles, and suddenly the baker Bess got involved in the cupcake project. She was brainstorming with the girls, and suddenly our cupcake walk had gotten to another level with cupcakes dedicated to our Mito children and their liking.

Minions for Jacob.

Broncos for Cal.

Elmo for Jacob.

In parallel with the silent auction, the Halloween party for our families had to be planned with volunteers, nurses, and activities. Sarah took on the trick-or-treating parade, and made sure there were treats of all sorts for both eating and g-tube fed children. She involved her friends, and I think they all had a great time together.

I didn't plan for this to happen, but Sarah has found her role in Miracles for Mito and she likes it. There are many things we can try teaching our kids, but some things need to be lived and learned. There might be a time when Sarah doesn't want to have anything to do with Mito, which is fine. For now, I love to share this with her. And I love the compassionate beautiful girl she has become.

Love, Maria.

HELLO BEAUTIFUL FALL!

Yesterday we decided to stop in our busy tracks and enjoy the beauty of Colorado fall. We packed up our car with everything Jacob needed for the day and drove up to Nederland and enjoyed the beauty along Peak to Peak highway. As we climbed up feet after feet, I was watching Jacob closely since his brain is not the biggest fan of high altitudes. Jacob did absolutely awesome! He had a really rough night, but had no interest in napping. He was on a road trip, and wanted to enjoy every bit of it.

We love, love his new haircut!

Our girl taking a selfie!

My camera ran out of batteries, so we took a stop in Ward. This is a popular stop for bikers, so I was happy to share the little town of Ward with my family. No one but I had any interest in exploring Ward!

Raymond is one of my other favorite places biking. We decided to all get out the car, and this is where Jacob finally crashed...

Yep, he's sleeping...

We don't get out all four of us often enough. This was a reminder that we need to make it happen more often. We all had a great time together!

Love, Maria.

THE TWO SIDES OF MITO

It's Mitochondrial Awareness Week. Hopefully, you have seen GREEN posts in your Facebook feed, and maybe you have learned something new about this disease we and so many families live with 365 days a year. This week, our community has come together to support each other and raise awareness.

This summer we got news that Jacob's brain has worsen over the last three years. Something that is to be expected when your child lives with a progressive disease. It is different though to just in general terms talk about progression versus actually see two brain MRIs next to each other, three years apart. I was told by Jacob's Mitochondrial doctor that this disease will never get better, it will only get worse. As I heard these harsh words, I was seeking in my memory for someone who had been writing about how it is to slowly see your child progress in front of you, and I couldn't think about a single person. Not a single person.

Social media loves the positive, easy wins. Social media loves Jacob as the Mito fighter and warrior he is, but that his body is slowly failing is just not as sexy as him once again fighting the impossible fight of life. Reality is that Jacob is both. Jacob is a million times more stubborn than his mom (and that says a lot), and he loves life immensely. But Jacob also has tough days. Jacob knows the ugly face of mitochondrial disease.

I have always been open about our journey, and in a world where we constantly want to set the next record, reach for the next promotion, and want our children to do what we never were able to accomplish ourselves, I am going to stay honest to Jacob and his journey. A journey that will not talk about the next record, but about a child who will continue to progress with his disease, but who will continue to be fueled by love - and lots of it - no matter what happens. That's our Jacob. That's my awareness for tonight.

Today was a good day. Jacob and I soaking in the beauty of the Botanical Garden over lunch.

To be continued...

Love, Maria.

PATIENT SAFETY IS REAL

As so many things in life, my patient safety involvement with Children’s happened by accident. I was asked if I wanted to sit on the Quality & Safety Committee of the Board about five years ago. I was thinking “why not?” It was something new for me to get involved with. I did notice that the on-boarding process was a little different than many of my other commitments at Children’s. I had to do two in-person interviews as well as go through a formal parent training. It was the first time Children’s decided to engage parents at the board level. It was a big deal for the hospital.

During my interview process, I got to meet the hospital’s Chief Quality Officer. I instantly liked how passionate he was about engaging parents in the hospital’s work and his openness about patient safety. Yes, I was a little intimidated in the first couple of board meetings. I needed to find my place in the board room, realizing we were only two people in the room who could truly give the perspective of the children in the hospital - my partner in crime Maureen and I.

Over the past five years, I have been a board member, participating in patient safety projects, and presenting on the topic of patient safety at several hospital conferences. I have a strong belief that the hospital will not be able to eliminate patient safety errors without engaging parents. Sitting on committees and presenting is great for awareness and education, but will only take the hospital so far. To truly make this happening, patient safety needs to become a partnership between the hospital staff and families in each hospital room every day. How do you do that? As with so many things, it comes down to communication, education, and collaboration. We still have a lot of work to do, but we are moving in the right direction.

Last year, we also started to get invitations to local and national conferences to present "Children’s patient safety strategy from board to bedside". Children’s Chief Quality Officer is a smart guy. Rather than telling the story himself, he started inviting us parents to present with him. He was walking the talk. It even got me a trip to San Francisco and the Children’s Hospital Association’s conference. In June after we once again presented our strategy, we realized we had never told the story to our own board at Children’s. This month, it was time for the Board to hear our story. We got a lot of positive feedback. You know that feeling when you know you are part of change, positive change? It's a good feeling. 

The hospital leadership is willing to take parent engagement to the next level. We know that the hospital won’t get to zero patient safety errors without engaging families. And why is this important? Because no child should have to endure harm that can be prevented. The hospital should be a safe place. It’s also personal. Having spent too many days in the hospital, I see how easy an error can happen, and errors have happened to Jacob. This is real. This is important. And positive change is happening!

 Children's Hospital Colorado won the American Hospital Association McKesson Quest Quality Award this year partly due to their Patient and Parent Engagement strategy. 

Love, Maria.

ICING SMILES

Icing Smiles is all about turning cake batter and icing into smiles and joy for critically ill children. We heard about this wonderful organization from friends, and we tried it out for Jacob's 9th birthday. This cake was the centerpiece of Jacob's birthday party, and will always make us remember our celebration of Jacob's nine years.

Icing Smiles also acknowledges that the world is rocked for the family's siblings. There is no secret that our girl loves her sweets. The idea of a dream cake made her smile. I decided to put in a request for a cake for our girl right after Jacob's birthday. I had forgotten about the request when we got the e-mail that Sarah's request had been granted. We were able to get the cake in time for her 13th birthday party, so she could share the sweetness of vanilla and chocolate cake with raspberry filling with her friends. The best part is the home made fondant, especially on the turtle :-

Since we're in planning mode for our annual Silent Auction dinner benefiting Miracles for Mito, I thought I better ask the baker for advice for our upcoming cupcake walk. Before I know it, the baker has volunteered her time once again. This time, she's doing a cupcake decoration party at my house helping my girl and her friends to decorate the 120 cupcakes (also donated by a very generous mom) for our fundraiser! She's bringing her professional decoration tools, homemade fondant and is letting us know that there is nothing she can't decorate. This elevated our cupcake walk to a new level. Best of all, Sarah couldn't stop smiling.

People come into our lives when we least expect it. I knew Sarah would get a cake that wouldn't disappoint, but to find out that our baker had been a special education para before staying home with her boys, I did not know. She had always had a special connection to special needs' children, and immediately found her way into Miracles for Mito and our hearts. It was a beautiful moment.

To smiles. Love, Maria.