MY SUMMER BUCKET LIST

It's me. I love summer. It is the time of the year when I can get out of the house more freely, and spend time outside. Did I tell you I love to be outside? I love to be outside! Late spring, I created a "summer bucket list" with my speech therapist Brittany. Things I wanted to make sure I did before going in to 2nd grade.

1. I wanna go to the park.
Early summer we went to Wash Park with our friend Luiz. We had a great brunch together, and Sarah got to practice volleyball as mom and I were watching her play. I especially loved our walk around the park, and simply hanging with everyone.

2. Go to the movies.
My movie choices have been strange over the years. I got to watch "The night at the Museum" with one of my nannies who dragged Sarah and myself to the movie theater when I was only a few months old. I then got to watch the movie "Mamma Mia" when I was way too young to totally get the story, but it was great music and it was for mommy's birthday. This time, I picked the movie. We went and watched "How to train your Dragon 2". I have read the book, and now I got to watch the movie. We went early afternoon, so we almost had the whole movie theater to ourselves. I started out in my wheel chair, but most of the movie was just a big cuddle feast with sis and mommy. We all sat together!

3. Can we go outside?
My favorite place to be is outside. It doesn't matter if it is cold or warm, rain or sunshine - I like the outside. Here are a couple of pictures from being outside this summer!

4. How about some homework?
I do like when people help me with my homework.This summer, I went to summer school for five whole weeks. I was hanging out with Mrs. Pries and my great paras for another summer. I got to use my talker a lot more in class this summer, which was great. I made sure to make my own choices. Mrs. Brittany and I are also working on a book project right now. We are reading "Around the world in 80 days". I get to answer questions, and we are making this poster board together. I am showing it off to anyone who visits my room! I still have some work to do on this project, so it is good I have about two weeks before school starts again.

5. Can we go out to eat?
Last night, we all went out for dinner. We had the outside patio almost all to ourselves. I got to watch the sunset over the Rocky Mountains, something I don't do very often. I also got to taste some pineapple!

6. Baby Derek
I have a new friend in my life. It is nurse Gemma's baby Derek. I love to hang out with him. He loves to simply watch me, and check me out. I even get to act  like his big brother at times. I get to hold him, and help nurse Gemma out a little bit.

7. Let's go for a bike ride!
Despite the hot temperatures this summer, we have been able to fit in a few bike rides. I love to go on bike rides and feel my legs move. It is called freedom! I was even participating in the neighborhood 4th of July bike parade this year!

We did every single item on my bucket list! I liked it a lot, and I will sure make a new list for next summer break.

Here are some more fun things I have been up to this summer:

Running the Mito Epsilon Walk with my buddy Cal and eating ice cream afterwards.

Celebrating my friend Selina's birthday.

Watching TV in bed with Sarah.

I love visitors. My old nurse Libby came to see me.

Hanging out with my Mito buddies Cal and Andrew.

This pretty much sums up my summer. I have almost two more weeks off before school starts. I am hoping to still get in a few play dates, and going to the pool as often as I can. We're hoping to also make it to the zoo and the Berry Patch Farms!

Til next time,

Love, Jacob.

THE ANSWER IS IN THE SEASHELLS

We went to the beach. We traded Colorado for Florida. We went on vacation both of us with Sarah. We took the big scary step to leave Jacob at home with nurses 24/7 for four whole days. This is a first since Jacob was born. The idea was born during Crossroads, a large volleyball tournament downtown, Sarah participated in. Our friend Luiz came to see Sarah play, and as we were catching up on life, he offered us to use their condo in Vero Beach, Florida any time we would like. That sounded a little too good to not explore if we could make it happen.

When we boarded our plane bright and early on Tuesday morning, I knew this wasn’t a small accomplishment. Our nursing coverage plan fell through a few weeks before we were supposed to leave! Our nursing agency worked hard on finding an alternative solution we felt comfortable with. We knew we could never leave Jacob if we didn’t feel completely safe with each nurse who would take care of Jacob.

The afternoon before we were leaving, Jacob’s secretions got excessive and slightly yellow tinged. Jacob showed signs of getting a respiratory infection. I questioned why I had even started “project vacation”. I saw myself landing in Orlando to simply having to take the first return flight back to a sick Jacob in Denver. I was no fun to be around Monday. I was so nervous to leave Jacob, and I did feel guilty to leave him behind.

Jacob had a good night before we left. He was awake in the early morning hours, and I was able to put him back to sleep right before we rushed out of the house. He looked well, and we were ready to hit the road.

As we were driving to Vero Beach, I got report from nurse Gemma that Jacob was doing perfectly fine! I started to slowly relax and take in every bit of vacation. We lived a block from the beach, so we hit the beach right away. As my bare feet hit the sand and I was rushing into the waves I felt a sense of freedom I haven’t felt in a long time. All built up tension slowly gave away for the sound of the waves and the seagulls.

We settled into vacation mode right away. We slept in. We had long breakfasts out in the sun room overseeing the garden. We spent hours on the beach each day. Sarah turned into a mermaid. She spent hours in the water, catching the waves on her boogie board. When she took little breaks from the ocean, she collected seashells or built sand castles. In the afternoons, the rain came in to cool down the air. Joakim and I went for runs along the beach. As the rain stopped, we went back for more beach time before going out for dinner.

On Thursday, we quickly got out of our comfortable vacation mode. Gemma reported that Jacob had had a rough night, and he showed signs of fighting a respiratory infection. She was taking him to Children’s. She thought he might be admitted. That is something that would kill the best vacation. Jacob needs us more than anything when he is sick, especially being in the hospital. We checked in to changing our flights and started packing our bags. Gemma didn’t want us to rebook any flights until we knew if Jacob would be admitted or not. As she was taking Jacob to x-ray and getting labs, I was on pins and needles. I was not on vacation. After talking to the doctor and Gemma, we found out Jacob’s chest x-ray and labs were normal and he would go home! Gemma urged us to stay as planned. Jacob’s nursing team would be able to keep him comfortable at home. It was not an easy decision to stay. Jacob was still sick at home, but we knew we would be home in less than a day. We were so close to completing our time away together.

Sarah came up with the perfect plan to get me back into vacation mode after the decision was made to stay. She got us back on the beach collecting sand and seashells for Jacob, something we had talked about all week. We had admired the different seashells all week, but after this little scare with Jacob, the seashells took on a new meaning, a new clarity. Each seashell is shaped differently by the waves. Each seashell has its’ own story and beauty. We all collected a specific seashell for Jacob to bring back to him.

From Sarah:

From Joakim:

From me:

And as we were collecting seashells, talking about our dear boy, I was wondering why I had had this urge to come to the beach. Why didn’t I just settle on the fact that a family vacation is close to impossible with Jacob being so fragile? Why do I never want to turn down an opportunity? Why do I want to live my life to its’ fullest rather than maybe realizing it isn’t always possible to do it all? And in the middle of thousands of seashells I saw the answer bright and clearly. It is our boy who is my driver. He gives his life 110% every day. It would be so easy for him to give up, but he doesn't. If he takes his life with stride every day, don’t we owe it to him and life itself to do the same? The answer is in the seashells.

Love, Maria.

SECOND COURAGE CLASSIC COMPLETED

Months of bike training and a second Courage Classic ride benefiting Children's Hospital and more specifically the Mitochondrial Clinic have come and gone. Spring and summer have been a whirlwind, but I do think it is worth stopping and pausing for a moment about this special and personal bike ride.

Bike training was both easier and harder this year. It was easier because I knew a little bit more about riding a road bike. I didn't start out the season by having a big fall into a flower bed making me bruise my knees and legs. I instead started out by getting myself a carbon road bike! I am in love with my new bike. It is definitely a smoother ride, even if I do miss my old granny gear when I am going up steep climbs.

I knew where to ride this year. I knew where to get my legs ready for steep hill climbing. I knew how to fuel as I was riding. I completed my first Century (100 miles) ride this June, which I am proud of.

My girl's life is changing as she is growing up. Her social calendar is simply something else. Many times I had to be back home by a certain time to take her somewhere or simply not biking because she had a full day of activities! That made it hard to plan longer bike rides this year.

I also was very sleep deprived towards the end of my bike training. Our night nurse Libby left, and Joakim and I took turn sleeping with Jacob. Jacob definitely knew his night friend had left, and simply decided to stay up for whole nights as we were watching over him instead of Libby. Going up Flagstaff in Boulder on no sleep is simply no joke!

I was on the phone with GI in Evergreen discussing Jacob's stool. I was texting Dr. C. about seizures as soon as I had cell phone coverage coming down the mountain. I had to call a dear friend from Boulder the minute I got off my bike realizing nurse Gemma needed help to adminster Jacob's seizure med, and I just wouldn't make it home in time. We had two hospital stays during my bike training. Jacob's medical life has been busy lately.

And then the Courage Classic happens, and it is not about you and your bike anymore. It is about the children. It is about Jacob. It is about his Mito friends. It is about honoring Samantha, and cherishing all the good things coming out of this little girl's life. It is about this hospital we can't live without. It is about turning this devastating disease into something beautiful and something much bigger than life itself. It is about finding happiness and joy, and nurturing friendships.

Right after Courage Classic, Summits for Samantha reached our fundraising goal of $100,000. Yep, that just happened...Two days after Courage Classic, Jacob was seen in the Mito Clinic. We signed consent to have Jacob be enrolled in the NAMDC (North American Mitochondrial Disease Consortium) database. By being an enrolled patient in NAMDC, Mito doctors all over the country can find the right patients for their clinical trials. We also found out that Jacob's gene will be sequenced in the diagnostic machine "Oxygraph" to further research Jacob's specific Mitochondrial disease. None of these things would be possible without Summits for Samantha. None! By riding over multiple mountain passes, we are keeping the Mitochondrial research alive and moving forward here in Denver. In the middle of sleep deprivation, adrenaline insufficiency and seizures - I simply can't find a better reason than that to ride.

Thanks for everyone's enormous generosity.

Til next year,

Love, Maria.

THIS IS OUR LIFE

Tuesday was a big day for our boy. It was time for surgery. It was decided back in April that Jacob needed a new set of ear tubes. The ear tubes are preventing his ear cyst to grow. The cyst will otherwise eat at his ear until he looses his hearing. Dental also wanted to extract his four upper loose  teeth. Jacob has a tendency to aspirate his teeth, so it seemed like a good idea.

It was an early morning with a lot of preparation. Meds had to be given at different times throughout the night prior to surgery. Feed had to  stop at a certain time, followed by pedialyte to a certain time. We made it to the hospital right at 6 am.

We didn't get too far into the surgery preparation before the anesthesiologist came down to see us. He wasn't sure the surgery would happen after all...We had mentioned that Jacob had a cold, and that was enough for possibly pushing out the surgery a month...After a long discussion with dental and anesthesia, the surgery was on again!

The surgery itself was about an hour, and Jacob did really well. It took him a little bit longer to wake up this time than last, so we were happy he was monitored in the PICU for the day. He was breathing on his own right away, and never seemed to truly be in a lot of pain. Dental was also worried that the bleeding from the teeth extraction would freak him out, but Jacob handled it just great.

Joakim and I were hanging in the PICU for the day as Jacob was resting. The chaplain of the PICU always likes to peak in and make sure we are doing fine. This time he was not fine with me simply saying that we are doing ok. He was starting to ask about Jacob, and then the question came: "how is it that Jacob ends up here so often?" So, I had to explain his mitochondrial disease, and what it means to Jacob.
"How can you handle it?" I thought the question was odd coming from a person who works in the PICU. I am sure he didn't get the answer he had expected, but it is the truth. "This is our life. We have lived this life for 8,5 years. Things that might not seem normal to you have become part of our daily lives."

And this is the truth. Two stays in the PICU within two weeks is something we just do. We pack our bags, we live on no sleep, and we stick with our boy and make sure that he has what he needs. I dread using the bathroom in the PICU, so I plan my visits carefully as I have to go. I tell Jacob's medical story over and over again. I tell the nurse every 12 hours what comforts him, why his heart rate is elevated, why he is uncomfortable. We know the drill.

I understand that looking in on our life from the outside it might look overwhelming and hard, but reality is that this life also has a routine after eight years. And in the middle of suctioning, PICU bathroom breaks, and the desire for sleep, is our boy. Our Jacob who fights every single day. He knows no other life, and he gives it 100% every single day. And that is how we handle it. I was told three times before 9 am yesterday that Jacob was lucky to have me. Three times I was saying that I am the lucky one who has Jacob. He puts everything in perspective, and he makes sense to this life we call ours.

Tonight, Jacob is sleeping in his own bed again. I can always see that he knows he is home. He falls asleep right away. There is no place like home.

Love, Maria.