STAINED CARPET AND CUPCAKES

I am finally sitting down after a long day with a glass of chardonnay and popcorn. My whole house smells of Pinesol. My hands smell of Pinesol, but I don't have a clean house. I have a very stained carpet. It starts at the bottom of the stairs continues through the whole hallway into Jacob's room. I am not even going to get started describing Jacob's carpet...

Instead of being on time for Selina's birthday party, I was scrubbing carpet. After multiple accidents and multiple google searches, we know the best cleaning solutions for getting 7-year old poop out of a whitish carpet. After 90 minutes of intense scrubbing on all four, the carpet had turn from brownish to yellowish. It was time to call the professionals once again. It was time for a second professional carpet cleaning in less than a month's time.

As I was frantically scrubbing the carpet, it reminded me as much as I am forever thankful for Jacob growing up with us, some things are not getting easier with time. An infant accident is very different from a 7-year old boy. I am starting to think hardwood floors is in my future throughout the whole house...

We still made Selina's birthday party! The warm Colorado day had started to slowly cool down by the time we made the party. We had pizza and perfect little cupcakes. Jacob played play dough with Selina. I looked at Jacob, and knew that all that scrubbing was worth just one little smile on his face. I forgot about my Pinesol carpet...at least for a little bit until it was time to scrub it again...

Love,
Maria.

MOM & SARAH TIME

I remember the first time we went on vacation without Jacob. We had an expensive condo up in the mountains booked. It was too late to rent it out, and too late to disappoint Sarah. I don't recall us having a night nurse, so Joakim and I were driving up and down the mountain every evening. I am not so sure it was our best vacation, but it was the beginning of vacations adjusting to the fact that Jacob will seize the minute we arrive on high altitude.

Years ago we bought our time share in Breckenridge. We originally bought it with Jacob in mind. When Jacob was younger, we often took him up to the mountains, but depending on the rental, it turned into a great vacation or not. We were determined to find a place where we knew Jacob consistently could come with us, and be ok. Jacob got to enjoy our condo a couple of times. As his seizures got worse, we had a couple of stays not necessarily feeling like vacation. They either ended up in the local hospital in Frisco or us racing down I-70 straight to Children's Hospital. It was time to realize that the mountains and Jacob don't see eye to eye. It doesn't matter how much we love the mountains, it is not the place for Jacob.

For the last couple of years, Joakim and I have taking turns bringing Sarah to Breckenridge. This week, it was mom and Sarah time. It was a really good time for us to reconnect. It is a place with few to-dos, and time to simply hang out and be together. I truly cherish those times, since we at home have a pretty busy life. In Breck, it is only the two of us. We talk, we hug, and do the things we like to do together.

 

 

 

 

 

This time around, we also invited our family friend Yvonne. It turned out to be the perfect trio. We laughed hard together. We relaxed together. We had great meals together.

 

 

 

And as I was getting on the bike to conquer some mountain climbs, Yvonne introduced Sarah to Chinese tea ceremony. She also taught Sarah how to play pool. Our girl was so excited!

It was a great break with some well needed mommy-daughter time, but we were also ready to be home with the boys again!

I hope you're all having a great summer!

Love,
Maria.

SUMMER SCHOOL!

It's me. Mom has no time to sit down these days, so I guess I better take charge. Despite still recovering from a nasty pneumonia, I started summer school this week!

Summer school is for us kids who might need a little help over the summer, so we're ready to start school in the fall again. For me, I just love to make new friends and spending time with my kindergarten teacher Mrs. Pries! Did I say I love her? Did I say that my whole family loves her? Well, that's the truth.

I have so much stuff going on in the morning...A lot of times, I might not make it downstairs until noon. Believe me, noone is slacking off in my house, there is just so much stuff that needs to get done from medications, to breathing treatments, to antibiotics, and the list goes on and on. I think our biggest accomplishment this week is that we have made it to school on time every single day! We have been at school at 9:30 am on the dot! It has to be added that my night nurse Libby starts to prepare my day during the night in order for us to make it to school on time. Crazy, but it works. Thanks Libby! I don't want to miss a minute of school.

The first day of school, I woke up at 4 am! I was just so excited to start my day. Unfortunately, I crashed by 9:30 am. My para Peggy couldn't care less. I still had to practice my letters...no slacking off at school :-

I have already made new friends. I immediately noticed that Bella was special. I told her more than once on my talker that I love her. She smiled so big when I told her. She told me she loves me back, and that I am cute...I also asked her to play with me, and that's all we try to do when Mrs. Pries looks the other way :-

 

 

 

I now use my talker every day in school, and I have started to put together short sentences. Oh boy are people impressed. I also get together with my speech therapist every day in school.

 

 



And after a lot of hard work - the reward. Hanging out in the pool with sis and her friend. A perfect ending to my first week of school. 4 more weeks of school to go!

 

Love, Jacob.

P.S. I am still recovering from my last pneumonia and pseudomonas. I just came off the antibiotics, and I don't feel that great tonight. Everyone is worried that I will get really sick again...Keep your fingers crossed that I can get over this at home, so I can continue going to school. I don't want my next post to be from the hospital...fingers crossed!

I FEEL HOPE

Jacob was sick last week with pneumonia and pseudomonas. He needed to stay in the hospital for a couple of days to get over the acute part of his pneumonia and to get the right antibiotics on board. We got him home just in time for me to jump on a plane to Newport Beach. In Newport Beach, mitochondrial doctors, patients and families from all over the world met to talk mitochondria for two days.

I had not been at UMDF's (United Mitochondrial Disease Foundation) conference for five years. With surprise and excitement, I realized a lot has happened in the field of Mitochondrial Disease in the last couple of years. Five years ago, the big topic was how much CoenzymeQ10 you should give your Mitochondrial patient. Today, we are talking treatments for Mitochondrial Disease.
T-R-E-A-T-M-E-N-T-S. I have told others and myself for seven years, there is no cure for Mitochondrial Disease. That is still the case, but there are treatments that are actually working to improve the lives of Mito patients. Epi-743 is an antioxidant. It is today in clinical trial, and it is the most effective treatment to stop or slow down progression of this horrible disease. Jacob is a very lucky boy to have qualified to receive this drug under the emergency protocol when he was very sick in the PICU last fall.

I had the honor to sit next to one of the top Mito researchers during the dinner. He felt hope for the first time. The unfairness of Mitochondrial Disease is what drives him in his work. He is committed to his research until there is a cure. He even gave me hope on what we could do for Jacob's specific mitochondrial disease. I am on a mission to get researchers to collaborate to get quicker results. I feel stubborn, and very determined. I am on a mission.

It was a fantastic conference for Miracles for Mito. We were a great group of Miracles for Mito members attending the conference together. UMDF got a true interest in us and what we do, and we're definitely on our way to collaboration for the first time! The investment made in the Mitochondrial Clinic from the Summits for Samantha Courage Classic team was well noted at the conference. From the oxygraph machine now sitting in the Mitochondrial Lab here in Denver to the NAMDC database soon to be populated with all patients seen in the Colorado Mito Clinic. The database will lead to opportunities for Colorado patients to participate in trials and other research across the country. We have come a long way with what we do in our spare hours to support families and research, and the conference gave us all new energy for the work we do, and how much more we can do!

It is a unique conference in the way families and doctors interact together. It was a strong force of energy, knowledge, expertise, collaboration, and hugs shared throughout the two days.

And then there was the beach!

Love,
Maria.

P.S. If you want to donate to this year's Courage Classic ride, you can do it here! We're only a month away from the ride: http://www.couragetours.com/2013/jacobhallberg

IT'S SUMMER TIME AROUND HERE!

It's me. Sis is finally out of school! Yesterday she had her first day of summer break, and I had absolutely nothing on my schedule. No doctor's appointments, no therapy, and no school. It was time to leave the house and do something fun!

Mom brought up the Botanical Garden, the zoo, and Washington Park. Sis and I turned down all her suggestions. She then brought up a place we had never visisted before - the Wild Animal Sanctuary. Sis and I approved!

It was a perfect summer day. The day brought a clear blue sky with sunshine and a breeze. The high temperature of the day was in the 70s, which is rare in the summer time around here. We packed up my van, and we were ready to go!

The Wild animal sanctuary gives a home to abandoned and neglected wild animals. On 720 acres of rolling grassland, bears, wolves, lions, tigers, camels, lamas, and foxes have found a new home. It is close to 300 animals in total.

 

 

A walkway over the habitat gave us a good look of the wild life. Mom could easily stroll me through the whole habitat. It was a little bit hard for me to see the animals, since I had to be in my stroller to protect me from the sun, but I got some good glimpses of the lions and tigers. Sarah told me about the bears taking a bath together, them playing tag and swinging together, the wolves playing rough, and the lions and tigers eating their raw meat for dinner. It was so cool to see the animals move so freely. They couldn't have cared less about us coming to visit!

I think we have found a new place to visit again. I think next time, we will come when the temperatures are even cooler, so I can ride in my wheel chair. In that way, I will be able to see the animals even better. Sis and I also loved the gift shop, and I got to pick out the best bear winter hat ever. You better watch out for me this coming winter!

Today, we had a lazy summer day. I got to go swimming with Sarah and her dear friend Calla. Did I tell you that swimming makes me tired? There is nothing like sleeping outside on a warm summer afternoon.

Life is good, til next time!

Love,
Jacob.

MEMORABLE MOMENTS

The end of the school year has been crazy busy! I sit down at night, and I get exhausted thinking about the day I have just had. To throw in some excitement, Jacob is having frequent ear infections since he got his ear tubes...Right now he has a double-sided ear infection. We are also getting used to straight catheterize Jacob 3 times a day. He is retaining his pee, so we have to help him go throughout the day. This week, we have also ruled out the evil ear cyst cholesteatoma coming back, a urinary tract infection, and a broken ankle. Oh, and another long seizure...Many hours in the doctor's office, but we're happy we could rule it all out.

In the middle of school activities and medical stuff, I wanted to capture some really cool moments from this past week. It makes up for the medical stuff.

Jacob is back in the pool again!

 

And we're eating dinners outside again.

 

...and sleeping through Sarah's graduation from Elementary school.

 

 

Jacob hanging out with friends during Miracles for Mito's Annual Walk!

 

 

and visiting with horses.

 

Today, Jacob was cheering on Selina during her very special dance recital. He gave her a rose and a hand written card.

 

 

And tonight Jacob's old nurse Shannon is back! If you have followed us for a long time, you might remember Shannon being Jacob's day nurse for several years. Unfortunately, Shannon had an accident and couldn't carry Jacob any longer. She is now Jacob's new respite buddy! Welcome back Shannon!

 

 



We're so ready for summer, and to make more memories!

 

Love, Maria.

KEEP PEDALING!

Remember my blog post three months ago when I had decided to ride the Courage Classic this summer WILL YOU JOIN US? 133 miles of road biking in the Rocky Mountain over 3 days. Yikes! I had of course no clue what I had signed up for...

3 months have passed since then. The first step was to buy a road bike. I now have a turquoise bike. I partly bought it due to the pretty color, partly because I didn't really know what to look for in a road bike. I can say today that I probably should have invested a little bit more money in a bike than I did, but I honestly had no idea if I would ride it a lot or not. It is definitely a starter bike.

As I had made the decision to do this gigantic bike ride, I thought it would be good to let people know. They could keep me accountable, and I would know that there would be no way back...In talking to people, we got a great little crew of bikers from my work. They are all part of our team Summits for Samantha. As we get our morning coffee or need a little break at work, we now talk bikes :-

But you can't just talk...you actually have to get on that bike and start pedaling. My first bike ride was an 18 miles bike ride on pretty much flat roads. Since then I have extended my mileage on the bike with each ride. We have also done a fair amount of hill climbing to prepare us for the ride up in the mountain.

I can today say that I have gotten hooked on road biking! Me who didn't even own a road bike 3 months ago. I have been a gym rat for years, but now I have found a way to exercise outside in beautiful Colorado. I have fallen in love once again with this beautiful mountain State. I secretly want to move to Boulder with endless options for road biking...you can always dream.

I love my riding crew. Our core crew is Jacob's nurse Gemma, my boss Barbara, and my long standing friend Sonja. Barbara has an endurance that is hard to beat. She also maps out a new ride for us each weekend. We have gotten to explore Boulder with surroundings with the help of her. As long as Sonja is with us, I am not afraid to get a flat tire or have any other bike problems. She will get down to busines and fix it. Gemma will always cheer us on, and her optimism never leaves her. We also have Jacob's favorite nurse Whitney from Children's and Dr. C. join us from time to time. They are in their own league, leading us up steep mountains or on long stretches of roads.

Has it all been easy? No! I still consider myself quite an inexperienced rider. I am still intimidated by my bike. It took me a long time to figure out how to use my gears properly. I was lucky to run into a three times US championship biker on one of our longer rides, and he really taught me how to use my gears and also techniques to go uphill. I wore my gloves the wrong way for the longest time...don't even get me started on how that happened. My hands were sore and all. I did take a big fall on the bike. I can't brag that it was coming down a big mountain climb. No, it was in a little park, and without warning my bike and I landed in a flower bed! My legs were bruised for a long time, but nothing more serious than that. I experienced my first flat tire the other day...I didn't even notice, and continued riding for another 5 miles...Yes, definitely still a beginner.

Today, I am pretty proud of myself. Today, I conquered Flagstaff Summit and continued all the way to Walker Ranch. It is a category 1 hill climb. If you don't know that hills are categorized, neither did I three months ago. I know that I need to be able to do category 3 hills during Courage Classic, so I should be ok. A category 1 hill is the hardest hill category, and it is no joke. It is more about mental strength than leg muscles. When it gets really, really tough I start to run Jacob's name in my head. I have to remember that I do this bike ride for him and for Children's Hospital, which has made Jacob's life possible. I remind myself how much Jacob has to fight for his life every day, every hour of the day, and that is all I need to make me continue to pedaling.

If you want to check out Summits for Samantha's team video (Jacob is in it), take a peak:

Summits for Samantha 2013 video

If you want to donate to my ride and to Children's Hospital, you can do so by clicking on the link below:

http://www.couragetours.com/2013/jacobhallberg

And.. I will keep pedaling! Love, Maria.